| Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 27 | 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
"The middle of the night is the beginning of a new day" L. Da Vinci
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!!! ChristineSCC 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 | | | | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 27 | 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
"The middle of the night is the beginning of a new day" L. Da Vinci
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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
| | | | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 27 | 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
"The middle of the night is the beginning of a new day" L. Da Vinci
| | | | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 27 | 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.
"The middle of the night is the beginning of a new day" L. Da Vinci
| | | | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 27 | 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 Lulu
"The middle of the night is the beginning of a new day" L. Da Vinci
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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