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Joined: Mar 2011
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lulu Offline OP
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Hi everybody. May you all be blessed and feel as relieved as I do for having the chance to share your feelings and thoughts.

I know you all are 'but' patients, and not MDs (but who's more knowledgeable that a patient him/herself though?).

I am feeling very scared about what's being going on for so long to my mouth, and about the schizophrenic steps I've been submitted, therefore I think the best is to try and see if any of you can share their experience and confirm.

Few months ago, I started bleeding from my mouth. Bleeding sounds like a big word, as in fact this was just about very little amounts of red blood (like a lentil). This happend very rarely, but kind of scared me (at that time I was young & haelathy, but had started feeling weak and unconfortable w/food some weeks before, when I realized I had also lost some weight without even realizing it). Doctors thought this could come from my lungs, as it came with cough, so asked for a CT of my lungs, endoscopy and further tests: nothing came out. I saw an otolaryngologist too, who run an endoscopy and mostly laughed at me saying this was not a matter of him and reinforcing the lung idea.
As I felt very unconfortable with my overall state (- 10% of my weight in 1 month, no appetite, weakness), I asked for a total body PET-CT. Again, nothing.
Months passed by, my throat soared together with my ear (one-side), ut MDs could not listen. They said it could be a little vein in my mouth. I saw many specialists, but none of them palpated my mouth.
Pain now increased, blood as well (not quantity, but frequency as my saliva is pinkish all time and I have a strange flavour in my mouth, no matter the carefull hygiene.
I decided to see a second otolaryngologist.
Here come troubles: he run endoscopy, luckily palpated mouth, found an increased little portion of mucous membrane in my right side, both the tonsil and the little final gum after the wisdom tooth (where I feeel pain) so decided to go for a double PUNCH-biopsy. Luckily enough, negative results, BUT, pain still remains, now also in my neck, always one side, and I am weaker day after day, my appetite never showed up and still I keep on bleeding and none can tell why.
I therefore asked for a head MRI (funny enough, I am always asking for exams to doctors who do not believe my symptoms despite the concrete evidence on my face that sth is going on).
Here is my big question: I have evidence from ou guys reading your stories that the MRI is the elective scan for this problem, then I am just guessing why nobody ever proposed it to me.
I am waiting for results in 4 days, yet I am very scared as I am perfectly aware there is sth wrong w/those symptoms.
I am even quite deceived by this very unclear process of missed dagnosis (not that I want to be ill my dear ones, I am just in need for an explanations) and MG, I realize that I had missed the only right exam sofar, then I also do feel guilty toards myself: I have a life, it was a good one, and now it feels so odd to have met the wrong doctors on my way.
I completely lost my appetite, my vital forces, not my faith.
Please, forgive the tediousness of my post and its lenghth.
I hope your days are clearer than mine, I feel your strenght and hope, and I do trust that you all be blessed by moments of little joy despite the tough situation.
May again you all be blessed, and thank you for your time and patience.
This place is functional and human at the same time, thanks for being here and for sharing your personal experience with others.


"The middle of the night is the beginning of a new day"
L. Da Vinci
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Welcome to OCF. Im sorry you are experiencing problems. Perhaps your weakness is a result of the decreased appetite and your weight loss? If you are not eating, then you will lose weight and become malnourished. When that happens you will not feel very good.

The tests normally used to detect oral cancer are a biopsy, CT scan or PET scan. A biopsy is the best way to tell for sure if your tumor is cancerous. If it came back negative is there another tumor present that needs a biopsy? If you are unhappy with your doctors a second opinion is always a good idea.

I hope you find answers to what is going on with the bleeding in your mouth and all the other symptoms you are having. Find a good Ear, Nose and Throat specialist who will give you a thorough exam and do the necessary tests. Then you will find peace that you have exhausted all the options available and have an answer as to whats happening.

I hope you do not have cancer and it turns out to be a simple explanation.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2011
Posts: 27
lulu Offline OP
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Hi Christine, thanks for your nice words, I do appreciate you taking the time to get back to me so quickly.
Those couple of biopsies they made were quite audacious I think: they were not directed to any specific point, as the whole area looks reddish and feels augmented. Luckily enough, or maybe not, we're not doctors.
I hope the PET-CT I had last year in May was not a false positive. I read there were some, even if not that many in your overall experiences. Hope hope hope.
I'll wait for the MRI results in a few days, and should anything come out of it, I'll for sure go and see another ENT.

And yes, I totally agree that nourishing's vital together with sleeping (and laughing, I'd add), which is why despite the total lack of appetite, I never stopped eating even having to force myself in front of the most refined delicacies. I cannot even cook as I cannot stand smells, and that's too bad as I loved to and now I have to just sit at the table and act mechanically. That's quite a challenge for me as I once used to be a gourmet and a hearty eater, and now there is no single food, salty or sweet, not even a Sacher cake or my memory food from the childhood that appeals me. Simply, it looks like my body is no longer asking for it. That's real shame for me as I kind of lost one of the most vital aspects of life.
Sorry for relieving my feelings on such a hot topic referring to mouth district and appetite, as I just can imagine that sooner or later, you and other patients might have experienced troubles eating or appetite lack. Maybe, you can somehow understand how this changes the whole day. I even happen to dream of eating food with my lost hunger smile
Though I hope I did not hurt you raising the point.

Thanks again for your good whishes: you have all my esteem for your daily fight(s) and I hope we can all can 'find peace' and start/keep on being the strong ones who reassure and assist others again.

Take good care of yourself, Christine, and may you have many good things, big and little ones, to make your life full of meaning.

Warmest,
Lulu


"The middle of the night is the beginning of a new day"
L. Da Vinci
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Lets talk about your PET/CT scan last May. If you had a false positive the doctors would have treated you for cancer. A false positive is where the test shows you have an abnormality when you do not. False positives are very very common with PET scans. It has happened to me and several other members of this forum.

As far as your lack of appetite. Im certain your doctor can prescribe something that can stimulate your appetite again. There are a few members here who will tout the benefits of marijuana. Some places will have this available in different forms. I do not know where you are from so cant help any further. I am not one of the MJ users so dont know any other info about this. Maybe there is something else to help with this too, ask your doc.

I have not eaten a real meal in over 3 1/2 years. This is because of what 3 rounds of cancer has done to me. I have lost all my teeth never to have working dentures or implants. If you have the ability to eat and just dont want to then you are missing out! Sorry, but this is one topic where I unfortunately dont have sympathy for anyone who has the ability to eat anything they like while some friends of mine are unable to take one bite of food. Stop just for one moment and think about this.... unable to ever take one bite of food for the rest of your life! Then think about your situation and you will see it really isnt that bad. You can still taste which other friends cant. You still have all of your mouth intact which most of us cancer survivors do not which impedes our abilities further. You are a lucky, lucky person!!!!

Go get checked by a qualified doctor who will give you the answers you are seeking. But you also need to say to yourself, how far are you willing to go. If you have been having problems and looking for an answer since before last May then you probably do not have cancer. Oral cancer is a fast moving disease which is deadly when left untreated for a length of time like that. Something isnt right, I hope when you find the cause of your problems that it is nothing serious and easily treated. Best wishes to you on your search for an answer.


PS... I love my life and even with any of my limitations, I am a very happy and productive person. My life is very meaningful as I have assisted hundreds of people with their struggles related to living with oral cancer. I have no regrets and stand tall and proud to be the person I have become.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2011
Posts: 27
lulu Offline OP
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Hi Christine, thanks again for your time & patience and for sharing your personal experience in such a clear, simple and accessible way. Of course it feels like you are the strong shoulder where many friends go to for some help and support, it does really look like you are more on the supporter side, rather than on the need-help side! Thanks again for being so proactive.
Re. the eating side of the thing, whatever 'thing' is affecting my body or hopefully not, I realize I raised a hot topic and maybe was not very tactful in not reading through your stories enough before doing so: unfortunately, it's not until you are into trouble that you truly understand the weight of words like eating, biting and similar. That's what this forum is also here for, reminding us the limits of ourselves and even the positive sides when we tend to forget, right? I totally understand that my personal concern and disappointment for saying bye bye to appetite might sound silly, if not even mean to you guys, which is why I will make sure not to mention this again, or at least post the topic on the 'feeling' side, or read the others tricks, rather than sharing this on the sympthoms side. That's sth in between the 2 and maybe it deserves to be treated like a feeling, and faced more positively like a non-symptom as you suggest: I'll train myself again and again (which I also did in the past months especially whan I realized I was -10% in 1 month). Just thought that being very straight away might help: I learned this from other experiences and it took me quite a long time to raise my points, still looks like I have more to learn indeed on the tact side; for sure I also miss experience to address the issue in a more delicate way. Thanks for your suggestions though despite the whole thing sounded obnoxious to you.

In any cases, PET-TC wise, I meant false negatives, my mistake.
Soon my MRI will be available and hopefully enough I'll be able to join the supporter side once again and to find peace as you pointed out.
Regarding the meaningfulness of your life, I just do not want to spend any simple pathetic word on illness (which I also suffered from when I was 16 y.o. and underwent an important surgery to my leg, which limitated me a lot), then mine was a general wish that I feel like renovating to all of the readers. As I just know how a disease can affect the daily routine and the way we perceive life and its pleasures, be they little or big ones, I'll say this again and again, may we all find the way to enjoy life whatever the limitations, grief and pain are.

I've tried many soft drugs for the appetite side, unfortunately with no effect (maybe too soft), so I'll look for sure for the MJ posts. I am not native American as you'll understand from my English and happen to be in EU right now, where at least for my own experience/case, DRs have quite an issue considering the option.

Thanks again for sharing your vision and your experience, Chrisine I do wish you all the best again, please stay true to your love for life and to the respectfulness of your thoghts and, I just can imagine, acts.


"The middle of the night is the beginning of a new day"
L. Da Vinci
Joined: Jul 2008
Posts: 507
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Christine,
I really, really, really doubt a MAJOR CCC would TREAT for cancer based only on a PET/CT scan.

That would really be inconsistent with the NCCN Guidelines, so if this happened to you then you might want to see an Attorney.

[quote=ChristineB]Lets talk about your PET/CT scan last May. If you had a false positive the doctors would have treated you for cancer. A false positive is where the test shows you have an abnormality when you do not. False positives are very very common with PET scans. It has happened to me and several other members of this forum... [/quote]





Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

Joined: Apr 2003
Posts: 122
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Lulu,
you're definitely in the right place to get questions answered and similar experiences shared. I hope you and your docs "get it together" for you and get you started on an appropriate treatment soon.
Your concern over your loss of appetite is by no means out of place, hurtful, or petty. We all have experienced this and the resulting fatigue, weight loss and weakening of your immune system is a serious matter and you should feel comfortable addressing any concern you have-no matter how insignificant it may seem to "regular" people.
Christine has been, and continues to be one of the OCF angels that have helped me countless times through many situations and perplexities; many of which might sound ridiculous to be of concern to a healthy person. This ain't a simple disease-arm yourself with all the pertinent info you can so you can be a real member of your health-care team. Ask intelligent questions and it'll eventually sink in! ;-)
God bless and welcome to OCF. May it serve you as well as it has/is doing for many, many folks.


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

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Don... Lulu is in Europe, not the US. Let me further clarify what I wrote earlier.

When a PET scan gives a positive result, the doctor would be doing something not just ignoring it. In Lulu's case, nothing has been done. The very least a doctor would be doing with a positive PET is another test. Since the PET was done almost a year ago, by now it would have been determined if it was cancer and treated. So far, Lulu has had to ask the doctors for tests. She says the doctors she has seen arent even doing a thorough exam. Its been going on much too long that she needs to further advocate for herself.

Lulu, if I came across the wrong way, I apologize. I know you are worried especially now because the weight loss is so much. It is alot to lose in a short time period. I would suggest if your latest doctor does not come up with an answer to go to a large treatment facility where they are familiar with oral cancer. Here in the US we have cancer centers where they specialize in being the top places to get treated. There the doctors will all get together and conference to come up with the best course of treatment for the individual patient. This is why cancer centers are so superior to smaller facilities where they may not be familiar with oral cancer. Things are very very different in other countries. I hope you are able to find a qualified doctor who will find the cause of all your problems. Most of all I hope you do not have cancer! Be well!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2011
Posts: 27
lulu Offline OP
Contributing Member (25+ posts)
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Joined: Mar 2011
Posts: 27
@ Christine 1st: thanks for getting back to me so many times, no need to apologize: the web is such a great resource, but sometimes takes a bit longer to explain, plus I do have the language issue that does not help.
Pls note my fault again, as I was not clear about my PET: I said I had a false POSITIVE 1st, then I clarified. I had such a bad Freudian slip and feel so scared, that I meant false NEGATIVE: sorry and forgive me if this generated a conversation on your false positives and so on.
I am getting the MRI results in a few hours, so hopefully no more sweat at least about worring for the PET-TC resulting into possible false negs (I read your DR and member's post few minutes ago, I cannot recall his name, and he says it fails detecting masses which are smaller than 2 CM).
In any cases I am so unsure about what is going on -until tomorrow morning, which is in 3 hours here.

@ Don, thanks for jumping into the conversation and yes, I am in EU, and there are major cancer centers here, namely the state-run Istituto dei Tumori and Professor Umberto Veronesi's IEO, both in Milan. Went to the 2 of them, and here is my own experience (posting in case this helps anyone):
IEO: I went first to see a Lung Specialist (at that time, we were still on the wrong side because of the coughing). Proactive attitude. Called me back in a week with a huge program of several tests, multiple rays and endoscopies. Program included the clearly stated possibility of 'lung surgery'. Unfortunately, as I can just tell this now, my General Doctor said it was exagerated. At that time, the fatigue was not still there and I was not aware it all came from the mouth so having already tested lungs, I somehow - do not why - listened to the GD. I was not persuaded things could worsen. Time dedicatd to me: 4 minutes, but a promise to give me an explanation. Cost for this consultation: 140 Euro.
Istituto dei Tumori (pls note this place has a great heritage and is so respected and well-reputated): I went months later, when I realized blood was from my mouth (despite other 3 specialistic consultation on the area saying it was just inflammed) to see an Ear & Mouth specialist; he did not even palpate mouth, said it is normal to have one-side pain for months, mentioned reflux despite me saying my EGDS was negative and referred to a little vein in my mouth (located far from where bleeding originates). Time dedicatd to me: 4 minutes, without adding anything new to my papers nor proposing any further tests to give me an explanatin (and a cure of course). Cost for this consultation: 120 Euro.
On a more positive, yet not helping end, I also met a Blood expert later on there (as the General Doctor who says I am healthy, sent me to the onco-aematologist for a 1CM lymphnode on my right neck: funny isn't it?). This person noticed my general status (incuding the look of my exausted face, my skin, my weight and so on), dedicated to me 1HR and 30 minutes of her time and suspected an auto-immune disorder. Way far from the solution, since she trusts her fellow on the mouth state, but still she was human and at least noticed a disease. The dept even called me back days later to see if I could find a solution.
You'll be able to judge the 2 (let's say 3) different approaches. The former looked very positively American to me. I was even offered a medical staff consultation, but again my family members, boyfriend and doctor were against this, and I failed listening to them and saying no IEO, the only place where I was offered a chance sofar.
The health system here is suffering as it is slowly turning from public into private, so there is a big confusion and it is also said that legal medicine is creating more and more issues with diagnosis. I am the living proof of this mess.
As in the US, if I am getting this right, we have General Doctors, but they are often unable to listen for time reasons and for knowledge lacks.
Then we have specialists, but they do not consult with each others, they do not hospitalize you for check-ups (well, they do not in general until you are almost dead), and they tend to avoid any possible jump into others' disciplines.

@ GPK101: thanks for your warm words, it does help to have virtual companions in harsh times and that is very delicate too. It does makes your day to read other people who do not judge symptoms as 'subjective', non-specific, non-measurable (that is what doctors say to me when I ask why I feel weak and lost appetite), or even worse, stress-related. They do not care when I say I feel the same despite a lot of rest and despite having had to stop my activities. Funny enough, the only person who is persuaded that sth is going on and this is not stress related, well, it's my therapist!
Family & friends, on their end, just keep on saying my tests are negative, then why should I care for some blood? It mustn't be scary. They say I cannot be tired after seeing all those negative results, that I do not want to trust the fact that I am healthy, then it's just about my mind, that's a matter of lost dignity, good-will and that it is not so difficut to eat properly and to be active; just note I have always been a even too hard worker, a very engaged person and a happy girl. They just keep on saying, relax and focus on your job (which I am about to loose). They seem not to see I look pale, exhausted, loosing my hair that had first become thin and opaque, fighting for every bite of food. Mostly they all say my worries are exahegerated and that none has proved I have a disease.
Appetite-wise, I am petite by nature so it was quite tough, now there's so many things, namely proteins tasting bad and this makes me feel guilty, and fatigue-wise, I had to stay home 24/hrs a day since a few weeks.
I even look younger than my actual age, so my doctor in General Medicine who seems to have prblms in dealing with young patients being involved with a major issue, kept on saying to me: get a holyday and you'll feel better. That was so frustrating (I had holydays, my last one was last summer, to prove my family I was fighting at any level, and felt so bad as I lost many energies during that time; I left for 2 days at Xmas, and this was pure torture as I could not be the actve person I was once). I forced myself to regain weight, which is why none would ever had run massive tests, namely hospitalization on me when the symptoms were not that clear despite the loss of weight and very scarce and isolated bleeding.
I was even treated with ant-depressant drugs, with no effect (except more bleeding) and my therapist said this was not the solution.

You'll forgive my I, I, I soliloque: that's my night (well, morning in a few hrs here), I am spending it on my laptop trying to connect with you all, trying to feel we are not alone, and that united we stand and we can fight.

It is pure relief to read your stories, to see how very human you are, all of you with a huge strenght, with the ups (many) and downs (so little), no matter the limitations. Everything seems possible tonight and I like to feel there is a family, and that one day even the weakest can be strong again and help back.

Sorry if I am quite pigheaded, and for the poem. I am without rest since a couple of months, which is why you can see me here at 5AM in a Friday night.

May you all have a lovely week-end with friend and family and with the things you love most.


"The middle of the night is the beginning of a new day"
L. Da Vinci
Joined: Mar 2011
Posts: 27
lulu Offline OP
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Let me just add a quick consideration from this experience: as far as I have read here and in other places, young people's disease seems to be more and more related to HPV. Thats a rather unconsidered emergency here. I have noticed that the US have a far more effective information system at all levels on this virus, which I am unfortunately familiar with, despite dermatologists and DRs never alerted me of the potential risks of this factor.
When I was biopsied, I mentioned past daily contacts with the virus to the ENT and he just said that was not relevant at that stage, and they would just run the tests should istlogies show any malignant alteration (which they did not: in fact, the cancer cell search for the 2 tiny portions of punch-biopsy was negative, even though it showed a relevant inflammation which was not explained to me).

Facing reality, I am crossing my fingers that another option comes out of the blue for me, which is not cancer.
This said, while my body truly hopes to be in the wrong place, I have realized that is the right one for my soul, especially in this moment of uncertainty, when misunderstanding, anger and waiting crowd into my mind.

Well, let me just thank you again for your support, time and patience so far, and rest assured I will be posting updates.
Should I be of any help with promoting info about EU/Italian-based centers or anything else from this side of the globe, do feel free to let me know, post or PM me and I will be glad to assist by all means.
Thanks again for securing a place to share questions and experiences. I know I am a guest and a sort of free-rider here and I hope to be of any help to those who might need this.

Again, all the best and many blessing to you all.


"The middle of the night is the beginning of a new day"
L. Da Vinci
Joined: Jun 2007
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Lulu, thanks for taking the time to write such a long and in depth post. This gives us a much better picture of your timeline.

You sound young, if you dont mind me asking you age? Being young is good! It means you are stronger and can fight this better than someone say in their 60s or 70s (sorry Jim).

Your English is perfectly understandable! So do not feel any hesitation to write because of lack of understanding. Italy!!! Ive been to your wonderful country! I love it!!! Of course I saw many tourist places like the Spanish Steps (full of flowers), the ruins, Trevi Fountain, the canals of Venice and the Square and church on the main island of Venice(sorry forget the names). Oh how I wish I could go back in time to that trip!!! I was much younger and in good health. One thing I dont like is your explanation of the health care in Italy. It sounds like it is terrible to navigate when you have a serious problem. I much prefer the US where my family physician is who first told me I may have cancer. But, I am one of the few lucky patients who was diagnosed very early. This disease is a sneaky one and many times the symptoms hide and do not present themselves until a patient is very ill (Stage IV). There have only been very few Italians on this forum, and unfortunately none for a long time. So unfortunately we do not know about what places you would get the best care. There may be some members from the UK and France who have a general idea but those members havent been on in a while.

I hope your test results show something, of course we do not want it to be cancer. But you do need to get to the bottom of this and know what is going on. Its been a very long time to have this issue and not find the source of your problems. Please let us know the outcome. Even though we are not local to you, we can still help you if it turns out to be cancer. At least we can point you in the right direction. Are there larger cancer facilities in Rome? That could be your next step if the current doctors do not help you. Oh yeah, almost forgot! This should help you feel better... I havent ever seen a false negative on a PET scan before. PET scans tend to light up for inflammation which is what makes them have the false positives. Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2011
Posts: 27
lulu Offline OP
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Hi everybody. Really guessing if luck is by my side: either I am the luckiest, or the silly girl who gets the worse DRs ever.
Only time will tell.
Not good at cutting a long story short - I think you might have felt so, then pls enjoy the act nr 1.000 of the story below.

Puzzled about MRI results: despite clear request, the General Doctor listed body parts that apparently have little to do with the suspected areas (tonsil and retronolar trigon are the bleeding and aching spots, while MRI dealt w/brain, troncus encefalus and facial maxil - just guessing the Eng words for the original request).
The MRI w/contrast is negative! Still, I cannot go out and party folks, and not just 'cause I'm exhausted, but mainly 'cause I do not know if the technicians and doctore were able to look at the right body parts. Ah!
Isn't this a story of MALPRACTICE? Is it just a feeling, or this is just me going out of my mind and acting like a drama queen?
I'd stay for the latter 'cause I love life.
Sat here so I'll wait until Mon and refer to a specialist for a clarification on the above.
Maybe, I am hoping, the machine could pick up the oral cavity as well by default: to my ignorant eyes the films do show tongu, upper and lower teeth chain, still no images for the submandibular 1 CM linph as of course, neck wasn't just listed!

At this stage I think I'll try and see my dentist again so I'll have both a 3rd opinion on the overall, plus furthe hygiene should anything come out, and a consultation on the anathomy of mouth.

The silly thing is thet the social service is paying for the MRI, which is not a cheap test of course, plus I had my 4th contrast and still no clear vision on my state.

That's even becoming funny at this stage, if not ridiculous, then please feel free to laugh with me: I won't get offended and I invite you to join the audience of this little theatre.

I sometimes wonder if that's the price for being Italian.

Just thought you might want to share the update.

I remain, wishing you the best week-ends full of love, hope, and pleasure.


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Hi Christine, thanks for checking in again, I was so upset when I came back yesterday from the medical center that I even missed your post! Sorry for this.

I am glad to know you had such a trip in Italy, and wow, you visited the main spots, even places an Italian person might not see for an entire life. My favourite tourist city is Venice, I love the funny way they live with all this water, you see unexpected solutions and people there are soooo elegant!

I've been in the States, but only NYC, twice for pleasures and once for my work, and I also hold very good memories, especially the vibe and Central Park, but I confess that what fascinates me most of the US is the fact that you have so many different places within the same country, that you can travel from a timezone to another, through different climates, and people live in so many different ways.
I was just guessing yesterday with a friend if Americans also have all the silly yet sometimes funny stereotypes we do on being habitant of a certain area. I am sure you do.

I am from Milan, and we are said to be hard workers, yet quite distant people. This has some true indeed. Our city is not as spectacular as Rome, not even comparable I'd say, as it's more about little hidden secrets, small secreted streets and little spots to be found by chance, but as a citizen it's quite liveable, as there seems to be room for everybody, good schools and good restaurants. And there used to be a lot of work as well.

And I am 29 y.o., but if you ever happened to see me, you'd rather guess 18. People still asked me for my age at the disco the last times I went, and many dount my real age also at work. For a girl, well a woman that's not too bad sometimes. This must be because I am petite and have good genes - at the beginning my grandma was even thought to be the mother of her grandsons and daughters too!

You might have read about my MRI. So many wrong tracks, and the whole thing for nothing. I am so disappointed and feel so in the lap of the gods. I just guess this all reads crazy.

Thanks so much for your sincere whishes, I do appreciate and keep them in mind until I check again if the images are to be considered valid for their purpose. You always keep an eye on the positive side!

Sending all the best to the community, and well, I hope this Sunday is a source of energy and relax for those who fight their big and little battles every day and for those who take care of their less lucky dear ones.


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And the square you mentione in venice is San Marco. Each and every year, when Carnival begins, a young lady goes down from the bell tower like an angel, wearing an often quite spectacular dressing gown. It's a popular feast, and a very eye-catching party. Everybody dresses with superb eye-masks, no matter the age, and the whole sity is in a state of ferment. It's very crowded of course, but it is always worth a visit for the stunning colors and masks, so close to the overall sentiment of decaying beauty of this city.


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Hi Lulu,
I see now you are in Italy. Food there, especially in the north is marvelous also. I've been to your lovely city and enjoyed it a great deal. I am so sorry your doctors can't seem to figure out what is causing your problems. It must be so frustrating.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Lulu... I know you have been through a battery of tests... I'm sorry if none of them have given you any information on what is going on...

I do have to say - this all started with pain, bleeding, and drastic weight loss... That to me is not a good sign...

You know your body - you know if something is wrong. Find another dr. Someone who will listen.

Don't give up until you get answers.

I had my tongue issue for 4-5 years - the tumor was there when a biopsy was done 2.5 years ago my biopsy came back negative - the ENT guy took the tissue from the wrong place. My neck CT and MRI came back negative when I had one lymph node involved... The results are only as good as the dr. reading them. The pain is causing problems with your life, the weight loss is not normal - unless you are actively trying to lose it. Keep asking questions, seek out another opinion... You know if there is a problem.

Good luck - I wish I knew what was a good hospital in Italy - sorry I can't help with that.

Take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Eileen, I answered in the EU topic, thanks for checking in. Food is fantastic here, not my major pleasure now, but I hope appetite will knock at my door again smile

Cheryl, thank you very much as well. I appreciate the honesty of your words, as you say none but the single person knows if sth is wrong with him/herself and, to answer your question, no unfortunately I am not actively trying to loose weight, and moreover I am petite by nature, which scares me even more.
None has been able to give me any precise proof of all these symptoms so far, they just keep on saying this is stress, but the small bleeding factor does not reassure me at all, especially when they talk about little blood vessels breaking in my mouth (I was a regular nose-bleeder in my childhood and can very easily distinguish a massive bleeding due to a little vein from the scarce, yet continuous bleeding I have been suffering from my mouth for months now). Still, my reasoning that is dictated by experience does not seem to impress doctors.

I had an MRI last week, as you might have seen from my previous posts, but God only knows why this did not include the neck. It was done on my mouth, but how to explain this, it was just taken on the face from head to mouth - it shows my lower theeth as you can see them in the mirror, full stop.
I trust the DR who read them, but the point is that the exam was directed to a minor part, therefore (in my opinion) was not complete.
They did see the tonsils, and one looks slightly bigger than the other, obviously the one that is aching. Radiologists say this is not pathological, i.e. takes no enhancement after contrast, that it just looks slightly different and that I should not worry and get back to a normal life.
Well, normal life when you need 14 hrs sleep a day plus a nap in the afternoon, you feel no hunger and you moderately bleed every day from your mouth sounds a bit pretentious if you allow me the idea.

Cheryl, will read your story (I already did before you posted but need to refresh as I've been around the website and my mind is pretty full now). I know none of us is a DR here and each story is different, but would you mind - if that is not too personal, describing me the bleeding size and frequency? Should you find my question is too direct, I beg your pardon, but if you feel like, pls PM me. Having some evidence would give me more strenghth with the ENT, that I am scheduled to see on Fry, 12.30 local time (which means in about 30 hrs).

I appreciate your support, and please take care.

PS: you do not have to worry about the hospitals, we have the 2 major cancer centers here; funny enough, I tested one for the ENT, the visit was quite superficial and endoscopy came back negative; now I am afraid I will have to test the 2nd one.


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Hi... Okay I didn't have any bleeding with my tumor, until after they did a biopsy, then it was tender and sore and would bleed occasionally. But I can tell you that bleeding from your mouth and a lot of weight loss is not normal. Especially If you are not trying to lose it.

If you are bleeding a lot, that would very much explain why you are so tired, if you are not eating properly, or a lot then that would help explain continuing weight loss and also cause chronic fatigue, however - your initial complaints were bleeding and weight loss, and I repeat that is not normal.

Have they actually done a visual examination of your throat with a scope? My dr.s all stuck a tube through my nose, and examined my through, nose, airway, and tongue.

MRIs are great but they don't catch everything. My advice is to go to a totally different ENT guy preferably one at the cancer hospital, and tell him your symptoms, and see what he says. Don't stop until you get an answer.

Best of luck and hope you feel better and get answers soon.



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Cheryl, thanks so much for your detailed feed-back: it's mostly appreciated here. Am in the waiting room now to see General Dr, then ENT (a cancer surgeon) in 3 hrs today, plus Hospital later in the afternoon. Sounds like a tough check-up. In answer to your questions, yes, they did scope my moutn woth videoscope entering from nose and going down to vocal cords. This happened about 4 times within a year, but not all ENTs were familiar with the big C. They all reported generic redness/inflammation, which they attributed to reflux, plus slightly augmented areas around my rx tonsil. I assume I'll hopefully get some answer and according to your point of view, will make sure to properly point out accidental weight loss as well as moderate yet continuos bleeding plus the bad feeling in my dx mouth and ear.
Food-wise, I am desperately trying to keep a regular diet, including alternative protides and trying to carefully monitor quantities. The bleeding is not massive therefore has not led to an iron consumption so far, luckily (I guess I'd feel even weaker should this ever happen).
I shall keep you posted.
Thanks for being here and again thanks so much for your comprehensive answer on such a personal topic.
May you all enjoy the week-end and have time to spend doing your favorite things and staying with your beloved friends and family.
Take care and keep on being close.
I hope I can also be of some help once this issue gets more clear.


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Quick update: ENT says to go back in 6 months for an extra neck ultra-sound and endoscopy. Says just for safety.
Bleeding frequency changes were not motivated at all, while for the frequent sore throat (monolateral) he said this happens. The whole story sounds slightly unclear: the blood vessels theory does not match with the small bleeding quantity + everchanging frequency. Will definitely head to the 2nd cancer center here, make uo an appointment soonest. Was even given a side CFS diagnosis, which won't explain the weight loss and appetite changes at all. I do feel DRs here have problems in dealing w/scared + young patient seeking for torough explaination to her symptoms. Rather frustrating and scary.
All the best to you all, and unhappy to say this, story to be continued.


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Dear All,
I hope you are feeling good, or at least that you can all be at your best and fighting hard.

5th ENT visit (2nd onchologist) since I started feeling weird. New DR (2nd Cancer Hospital) was careful and looked well-prepared, despite tonsils are not his major topic. He reconsidered the picture, and doubted of the previous visits. Humanly, he was also the only one who asked me frankly how I felt, even before I could tell of the weight loss and fatigue. Either I look that badly, or he is just a rare breed (for my own, unlucky experience so far).
Scoped mouth manually and with camera and saw a remote lesion of 5mm (EU measurement, the diameter of a small/medium-sized pea) in my inner/upper right tonsil (here we are), sth that he said could only be seen by manually splaying the 2 little pillars with 2 sticks at the same time. The tonsil itself felt augmented and harder under his fingers, always on the right side. No other unusual reports mouth + neck ('only' the 1CM submandibular lymph node on the right side as well).
3 biopsies to be taken next Monday, and listened carefully to my perplexities and fears. I felt I was in the right hands. Cold comfort, still comfort.

I know you do not have Italian visitors here as for now, but I know Christine, who for sure keeps good track of anything, will notice from this experience how the 2 different cancer centers acted here; should you ever read of another patient who needs checks or care for his/her mouth in Italy, I think this is a little good lesson to learn from, and a different preparation and professionalism to keep track of. No matter how this goes (as God - and isthologic results only will tell how much I shall pay for such a different approach).

All the best to you all, and may you all be able to feel at your best and to enjoy little pleasures and good company.
Lulu


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Oh Lulu!!!!! Finally!!!!!

I am so glad that you have found a doctor who seems to know where to look for things. It certainly took a very long time. Now lets get prepared for the biopsy and long wait for results. Its going to seem like you are waiting forever! I hope and pray that even though you want answers that you do NOT have cancer. I dont want to see you go thru what I have or what I see the other oral cancer patients go thru.

Thank you for coming back and letting us know what was going on. I had been thinking of you and wondering if you had made any progress with finding an answer. Please let us know the test results. Hope they give you an answer and it is something that can be easily taken care of.

Be well!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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lulu Offline OP
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Hi Christine,

Lovely to read your honest and thoughtful words, this simply proves you are there as usual, listening to every single story with such attention and care. Thank you.

You did get the point, it's such a shame to long for a professional eye until you even get to the mad point that you'd take whatever for an answer, be it a clear one. Still I truly hope that's anything manageable and not malignant. We must all keep our faith alive & kicking until we can, and yes, I understand it will be a long wait (as my whole story so far).

I truly appreciate your support and I am with you with my hope and prays, hoping I can be strong again soon and back to the supporters' side too.
Take care.
Lulu


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Lulu,
I had a 6cm right tonsil tumor - no pain and no bleeding. More often then not OC is asymptomatic so I would look at that (pain) as a good sign.

Acid reflux or GERD as it is called here is not something to fool around with - it can certainly lead to cancer eventually.
It is highly treatable. Modifications to diet, antacids, prescriptions, etc.

MRI's reveal very detailed images of soft tissue. They typically scan from the top of the lungs to the lower part of the brain for a head and neck scan. Obviously something is causing your symptoms but there are other causes besides cancer, such as peritonsilar abcess (PTA). You are wise to rule it out while it is so small. (Modern imaging usually can't detect tumors smaller than 2mm). By the way, all tumors in the US are expressed in the metric system.

Welcome to OCF and I hope for a successful outcome.

Last edited by Gary; 03-20-2011 10:20 PM. Reason: typos

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Lulu,
I am so happy you FINALLY found a doctor that will listen to you and take your condition seriously and hopefully be able to diagnose it correctly. If in the end, you are satisfied with this cancer center, be certain to post the name and city where it is located so we can help the next frustrated Italian visitor we get.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Hello Gary, I truly hope you are feeling better now. Thanks for your warm welcome to the community, and most of all thanks for sharing such personal and useful details with me: it does help to have people who are open to share and care with no prejudice.
ENT unfortunately confirmed the MRI did not include the whole mouth nor the neck, just brain + nose + only 2 sections (slices) for the mouth. The hiperplastic tissue was still detected but not carefully explained by the images. ENT confirmed the tonsil is thicker and hard to touch on the right side, unfortunately.
That's a story of frustration, as Eileen correctly points this out, and that's what makes me feel even worse, i.e. guilty and silly.

@ Eileen, happy to read you again! I hope you are are doing fine. Thanks for checking in and for your words, I will make sure to jot down a report on the cancer center (and won't miss to politely complain with the other one's poor professionalism).

You take care too.
Sending best,
Lulu


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Of course, histologic is late, and of course, the surgeon says that the 'thing' (which none has mentioned with a name yet) is likely to be HPV-related. All sounds very reasonable according to your stories. I feel double anger to deal with sth that also affect relations.....
I also found pure madness that the surgeon waited for me to ask them to run an HPV test, as she said it is too 'personal'! And it's not even covered by privacy (in Italy at least). That's an era when the patient must have a degree as he is often asked to step into the process and be part of the medical equipe. Not sure I like this....
Hope you are planning sth fun and sweet for your week-ends and send you all the best from overseas.


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Mon update: the histologic is still late.... because further tests (i.e. colorations) were needed. Easy enough! Guess this is not pretty much a good sign.... Sorry for relieving my feelings of anxiety, despite I was accustomed to long waits wink
Lulu


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Just so that we are all talking the same language here, when a medical test is "positive" that means that whatever was being tested for has been found to be true. For example, if your biopsy test for SCC was "Positive", then you have SCC. If the test was "Negative", then your biopsy would have ruled out SCC.

This is a common mistake because the typical English usage of the terms "positive" and "negative" are opposite from the medical usage.

"False Negative" is an odd term for PET. More typically they yield "False Positives" as any healing tissue or anatomic area with higher metabolic activity would display an enhanced uptake. It seems to me that a "false positive" PET would defy the laws of physics.

PET scans must also be used in conjunction with CT or MRI, either at the same time (as in "PET/CT") or by fusion of the 2 different imaging modalities, as there are no anatomical reference points on a pure PET scan and this compromises the ability to properly read it.

Scans are not the "gold standard" for diagnostics - they are only a small component and they must be read by a knowledgeable reading radiologist.

The punch or snip biopsy is and will continue to be the gold standard for cancer diagnosis.

Last edited by Gary; 03-30-2011 06:34 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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About the HPV test, If you are positive for HPV, then it responds better to treatment so that is a good thing. As far as getting a test for it, the treatment will be the same. The HPV test for oral cancer is relatively specialized in the US (although David keeps up on this so may have more to add). Females, in the US today, are typically tested for HPV when they get their annual pap smear. This would not be the same test as for HPV induced SCC, in which a piece of the biopsy sample would have to be sent to a lab.

Last edited by Gary; 03-31-2011 02:01 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
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Thanks for checking in Gary, and for taking the time to clear so many aspects. I trust your opinion as an experienced and engaged person.
I feel so relieved that false positives on a PET-CT scan are unknown (of course I was caught in the positive/negative confusion: it's the same here too, but I took a little to familiarize...).

Got histology: unreadable, no big words apparently, no conclusion (we usually see cell description + diagnostic conclusion). A patologist said this could range 'from tonsillitis to sth bigger', according to picture/symptoms.
(Moderate, continued bleeding from inside tonsil that won't go away since months, ear/neck pain, odd feeling in my throat. White thickness and red aching spot of tongue added up. Severe fatigue, no appetite nor weight gain despite 'double' meals, more fats+proteins).

I am so tired to report all this again and again! You all know how scared I am to be properly listened to take control of the situation and hope to get better.
Unfortunately, my dear ones keep on minimizing (despite evidence), so none supports the 'we need to clear this up at all costs now' cause.
I was in touch with a law firm who followed an ENT case of mis-diagnosis too.

Wish me luck for the meeting, and you all take good care of yourselves.


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Soory to see you still are in the same place as when you first joined OCF. This isnt right! I wish you allthe best, but most important...be well!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 27
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Thanks Christine, thanks for your thoughts and warm wishes, it is of great, great comfort to me, believe me. I'll try my best to get the DR's attention again tomorrow, for sure.
Symptoms have aven worstened in the last month...... I'm freaking out!
More after my visit, and you take good care too.
Lulu


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Hello everybody. I had my visit (almost a fight, I'd say). Drs told no big C. Wow! Christine, you'll be happy to hear this.
They wanted to dismiss me without any words, then they had a 2nd meeting upon my request, as I pointed out the neverending symptoms and MRI finds, so then they call me in again and say, well, either it's cancer, and it's not, or... Guess what... Lymphoma! So pls refer to another unit. They might want to take out your hyperplastic/hypertrofic tonsil and see more into details, as it happens more often than not that such a disease is not found by a simple biopsy. Thank you, and good luck.
Here we are friends, some more light, and although it still su**s, I shall now say with my great discomfort for the forum's good company and support you all gave me sofar, I am definitely in the wrong place.
Shall I wish you luck, and go?
I'll for sure keep on reading you, keeping in my prayers and supporting you from distant Italy.
Thank you very much, and a special thank to the great Christine, a huge fighter but above all a great virtual caregiver and beautiful soul.
You all take care and may your big and smaller dreams come true.
Lulu


"The middle of the night is the beginning of a new day"
L. Da Vinci
Joined: Mar 2011
Posts: 27
lulu Offline OP
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As promised, I kept on reading you (and realized lymphomas happen to also be a topic here s.times). I hope you are doing as fine as possible with your fights, and forgive me if I wrote anything wrong or upset any of you, maybe I sounded a bit cynical or ... weird? I understand that's a serious disease, and am scheduled for tonsillectomy in 2 weeks. I feel angry.
Well, hope to share some hints, what I can say for sure now is that an MRI cannot tell the difference between hyperplasia and lymphoma, but it can tell the difference with carcinoma (and MALT lymphomas are even trickier as they sort of hide in the lymphomatous tissue). Maybe it sounds simplicistic, but this is part of the heavy lesson I am learning. Also, a biopsy in this case might no be enough.
Bitter thoughts.


"The middle of the night is the beginning of a new day"
L. Da Vinci
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"OCF Canuck"
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Get the tonsils removed they will fully biopsy them after the fact... You should feel better once it's done.

Best of luck... Don't worry - hopefully things will be good for you. Don't spend your time being upset... I know it's frustrating but that's over they are doing something... Focusnon yourself and getting better... Anger is not worth the effort.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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lulu Offline OP
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Thanks Cheryl, you are wise and your precise words read peace and meaningfulness to me every time you send them. I know what you say mirrors what you went through, so... mostly appreciated. Thank you!
Yes, you are right, they are doing sth, let's not sugar coat it, we are running late, but that's what it is, and at least I tried very hard to have things move.
BTW, can you just imagine this is not even a cancer center (but that's the University team - they are reknowned surgeons, I guess they can handle this)?
Sending best and promise to stay focused on good feelings rather than on anger (btw, I even danced today in a moment of lightness)


"The middle of the night is the beginning of a new day"
L. Da Vinci
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Posts: 5,260
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"OCF Canuck"
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Ghats great - I think the team should be ok - it's too bad a cancer center didn't listen - sometimes doctors don't - that's when you have to make some noise - good luck with the surgery - take care!!!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: May 2002
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Hi Lulu,
Good luck with your surgery. Hopefully this operation will clear up your problems. Do they feel that this is what is causing your inability to enjoy food and all the other symptoms you have? Keep us posted. What date are having the surgery?

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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lulu Offline OP
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Thanks Cheryl, the team is quite well-known, I had positive feed-backs from another cancer center I called to see if surgery would be risky under such conditions. Thanks for your wishes!

Eileen, thank you for checking in, nice to hear from you too!
Surgeon says I will feel better; loved his attitutde, how he understood my concerns.
They are taking the whole tonsil out to have it fully analysed, that is my Dr's gut feeling (BTW, a new family Dr met me 4 times so far and is following the case now; very 'old-school', not too specialized, well-prepared 360 degrees, holistic, listens a lot: that's a blessing, a reward to all this stress).

Starting dx narix troubles too now, bleeding and fullness. @*�#!
If blood tests are fine, surgery will be on May 5th, out in 3 days.

Your replies warmed my heart; finding you in my mailbox, makes me feel I am not alone and I hope we can be in touch again. Please, take good care of yourselves and thanks a lot for being here. Loads of love to you all.


"The middle of the night is the beginning of a new day"
L. Da Vinci
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