#33462 06-06-2004 05:24 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2004 Posts: 34 | Hi all - I'm fairly new here and trying to catch up on all the posts. My sister Cathy underwent surgery mid March for tongue cancer - partial glossectomy and neck dissection. Then a recurrance os surgery side in her neck just after radiation treatment started May 13th. She is continuing treatment which the doctor is extending now with the recurrence.
My question with this type of cancer is this; what does cured mean? Is that the elusive 5 year mark? What about remission - can this type of cancer go into remission? What about controlled - is that the same as remission? It's all so confusing.
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#33463 06-06-2004 01:06 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hi Carol.
Welcome to the Oral Cancer Foundation. I don't have the knowledge to amswer your questions on when are we cured. Some of the more experienced posters may know and hopefully will reply. And your right it is confusing.
Best Wishes, Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#33464 06-06-2004 02:19 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Carol,
A couple of doctors said I was "cured" (in the definitional sense) after 5 years without a recurrence. However, I'm not sure anyone ever feels permanently cured after this kind of illness.
My insurance agent also said I was "cured" after 5 years in the sense that he could sell me a policy at that point -- I wasn't buying.
The NCI website has a dictionary section that doesn't say much about "cure" other than a very generic definition. It does describe remission as a period of time without evidence of any symptoms of the disease.
I've never heard anyone talk in terms of "controlling" oral cancer, which sounds to me like trying to keep it at a minimal, survivable level. That seems to me to be totally inconsistent with the way this illness operates.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#33465 06-06-2004 05:13 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | While the word cure is tossed around quite a bit, technically, right now, there is no "cure" for any cancer. This is partly because we don't even completely understand the mechanism that causes it, though we can describe in detail the events that take place. So when we have had this happen to us, for whatever genetic reason our systems allowed it to get a foothold past our immune system, what happens is through our slash, burn, and poison technologies we can sometimes eradicate "evidence" of it in our bodies. But the fact remains that the genetic reason that it occurred in the first place may still be with us. So the term remission was adopted, since there is always a chance that it will come back for the same reason that it came to us in the first place. This is an issue of semantics. There was a really long thread on this about 18 months ago I think, and the search engine will find it if you look under words like remission, and cure. For sure after five years, most people on are on the good side of statistical probabilities, but if you have read many of the posts here, we are not statistics
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#33466 06-06-2004 05:21 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#33467 06-07-2004 02:27 AM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | Hi Carol, the topic you posted here attracted my attention because this is exactly the question I always ask my oncologist. While Brian has given you professional and medical information, perhaps you can read from the perspective of an ordinary (sometimes ignorant) woman. When I was first diagnosed with stage 4B cancer, I was concerned whether I could be cured. My oncologist said that my cancer was curable and when treatment was over and follow up scans suggested absence of cancer cells, I asked my doctor if I was cured already. He told me that I was in remission and couldn't be declared cured since there might still be cancer cells hidden somewhere in my body that the scan could not detect at that moment. When I asked about the 5 year survival concept, he said this is a general guideline and in fact quite a lot of patients have recurrence after 5 years and that is why close observation is essential especially in my case when the stage is so advanced. In his dictionary, there is no absolute cure in cancer cases.So I have already accepted the reality that once I was a cancer patient, I can never get rid of this title. I once looked forward to just seeing my oncologist once a year but now I have changed my mind. As long as my oncologist is willing to spend his time and resources on me, attending medical appointment gives me peace of mind and recurrence can be detected early.My medical appointment is still on a 3-month interval even though I am approaching my 3 year anniversary.Although my doctor said there is little I can do to prevent the disease from recurring, I somehow believe that I need to do my best to strenghthen my immune system like doing regular exercise (I swim for half an hour after work every day and walk in the countryside for 2 hours every Sunday morning), eating healthy food (a lot of fresh veggies and little red meat), releasing work stress (going to concerts , shopping , movies...) and thinking in a positive way.So far I have been doing even better than my old normal because I am very health conscious and have found meaning in my life. Talking about meaning in life, Carol,please allow me to side track a bit here. I must say thank you to Brian and OCF.This forum has become one of my life savers because I find a lot of support and encouragement here. When I first joined this family, I was afraid that being a woman from China, I might be discriminated. However very soon my worry was proved wrong and for the past year, Brian should know that I have been a daily visitor of this site. I have also made a few friends here like Bob,Danny Boy, Dinah, Dee, Rosie,Lynn...and I always keep them in my thoughts.I really wish I could meet you guys in September and I think some of you may also wonder how I look. Too bad I cannot make it this time and I look forward to a second chance. I'd better stop here otherwise I may be further carried away.Sorry Carol for invading your territory. Sometimes I really worry that the more I write, the easier I may get others offended.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#33468 06-07-2004 04:17 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2004 Posts: 34 | Brian - thank you for those links - I'll read on...
And Karen - thank you for your prespective - you have said absolutely nothing offensive at all.. if not for this message board I don't know what I'd do. As a woman who's sister has oral cancer we tend to see all the efforts and enrgy and information poured into breast cancer research etc. and very little on oral cancer so it is frightening to say the least.
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#33469 06-07-2004 12:44 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#33470 06-07-2004 01:51 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 |
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#33471 06-07-2004 03:09 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | I agree, Karen, thanks...couldn't have heard and understood it any better than the way you put it.
God Bless, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#33472 06-08-2004 01:21 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Thank You Karen, love what you wrote!!! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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