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.

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.

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
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

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.

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.

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]

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.

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 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.

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.