| Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | I wonder what the percentage recurrence is, or rather, if it's vastly different for different primary cancer sites in the head and neck. For example, might tongue cancer more likely recur than tonsil, etc. Several months out from treatment now, and so far, so good...
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well, it my case the chance turned out to 100%. Yet for others here with the same diagnosis and Stage IV, the chance has been zero. Seriously, I don't know the figures but I am confident that when Brian posts that he needs to expand OCF's web pages to handle the FOURTY-FIVE % of OC patients who end up needing hospice or pallative, you can count on him for accuracy. Even with the recurrence, I am happy to still be in the other 55%. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Don't think about chances or numbers--everyone is different and looking at percentages or studies will not help.
I killed myself and loved ones looking at those numbers...not worth it.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Charm I have submitted a lengthly article dealing with the 40%. We hear you. It's in the review process. i actually wrote it back in November but before I submitted it a members spouse died and she did a very eloquent job of describing the process. And I needed to give it a rest.
Recurrence is an interesting topic. If you have a recurrence within the first year of treatment your outcome may not be good. 80% of recurrences that DO occur, happen in the first year (and most of those recurrences are fatal). In the second year the percentage drops to 15%. After that a recurrence at the primary site drops to 5% so year 1 and 2 are milestones.
Tongue cancer presents more difficulty in treatment because it is a tough tissue, contrast the tonsil which is soft lymphatic tissue. I believe that the death rates are fairly even for both types however.
Staging doesn't guarantee anything either - we have had early staged members die and advanced stage members survive.
Locoregional and distant metastesis are another issue. While that tumor is functioning in your body, it is releasing 1000's of cancer cells into the blood daily. The immune system takes them out, Exceptions are where the cells can "stick" like the brain, liver, lungs and kidneys.
It is an insidious disease and, according to my H&N surgeon, a lot of "luck" in involved.
I stopped dwelling on that stuff several years ago. In the beginning I wouldn't even buy a new pair of jeans. Now I just made a 15 year commitment to my new Maltese. Just live to the fullest each day because it's really all any of us have got...
Last edited by Gary; 02-05-2010 10:37 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | MgMichael
Ray is spot on but it's only human to want to know the odds. Gary's post echoes my RO, MO & ENT [quote] Recurrence is an interesting topic. If you have a recurrence within the first year of treatment your outcome may not be good. 80% of recurrences that DO occur, happen in the first year (and most of those recurrences are fatal). In the second year the percentage drops to 15%. After that a recurrence at the primary site drops to 5% so year 1 and 2 are milestones.[/quote]
You can have your cake and eat it too in a sense by just waiting a few more months until your one year is gone. Then you are pretty golden. The majority of the OCF posters do NOT have a recurrence although those of us who do are prolific posters so it may give a skewed impression of its prevalence.
Gary thank you for the info. Guess I am lucky my recurrence within the one year after TX was not fatal (my TX ended mid November 2007 and suspicious lump felt NOV 20080. Hope my luck holds. Charm
Last edited by Charm2017; 02-10-2010 06:01 PM. Reason: time line
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | I am an analytical person, and damn near drove myself nuts with the various statistics I could find. Keep in mind that there are numerous variables in the reported statistics that have nothing to do with the cancer itself -- i.e. how old is the patient, what other health issues do they have, where are they being treated, what methodology is being used, how compliant are they with treatment/medications/follow ups, are they still smoking/drinking? No way to sort all of that stuff out.
As others have said, it is also true that the majority of posts you will see come from those with ongoing issues. This is not only true with cancer forums, but with quitting smoking forums, sports forums or anything similar. Human nature that we are not as vocal about good things happening as we are about bad things. (I'd LOVE to see a whole study on that sometime . . . ) That creates quite a perception gap. I know I don't post nearly as often now, coming up on three years out, as I did early on. Part of it is the human nature thing, and part of it is a reticence to be viewed as trumpeting your good luck when others are having such struggles.
Anyway, one thing I KNOW -- we ain't going to out-think the disease -- we just have to out-work it!
Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
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