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janie #157835 11-20-2012 09:10 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Janie

One more thing to do: get a TSH blood level test done on your sister NOW, before the radiation and chemo. Radiation for Base of tongue cancer often damages the thyroid even though they try to avoid it. The problem is that the lab results for "normal" levels of TSH are so huge as to be worthless individually. It is very important to get a baseline TSH level now because the goal is after radiation/chemo/surgery to have the same TSH level as before. Since the normal range goes from 0.5 to 4.5 for some labs, you can see it does not help at all to get the TSH checked after TX. It can be a big problem later getting the TSH right if you do not get a baseline now.
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
janie #157836 11-20-2012 09:34 AM
Joined: Dec 2010
Posts: 5,264
Likes: 5
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,264
Likes: 5
Hi there... okay what is the best chance for survival? That is the real question here...

Is this a true BOT tumor? (HPV+) If so it is said to respond very well to Chemo and radiation. So this should affect your decision. (maybe as someone here said... shrink tumor first then surgery... but that is a whole other kettle of fish as operating on radiated skin has a fairly substantial set of issues (healing etc...)Or hope it does the trick without need of surgery.

If it is not HPV+ and a standard tongue or throat tumor that has spread... then likely Surgery followed up by rads and chemo are your best options. It will be a long haul. Particularly learning to speak again etc... but it can be done.

Misskate has had a total glossectomy... in fact there are a few here I believe who have. Misskate eats, and drinks, can speak etc... Your sister's case sounds more involved, but honestly survival rate is dependent on overall health, lifestyle, treatment (who does it and how experienced they are... best chance? best hospital and drs available!) and how the patient handles things like pain and nutrition. People here who started out as T1, stage 1, have died where people that are T4, stage IV have survived.

Make the decision with your sister to do what you can for her to survive if this is what she wants. Chances are quality of life will be affected initially ( 1yr - 18 mos) but things will get better. There are many here who live on pegs all their lives, have issues with swallowing, have lost their voice boxes, have been disfigured etc. but live terrific lives. It's the glass is full theory. Life is what you make it. If she wants a life, then she's going to have to fight for it.
hugs.




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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