#74108 05-08-2008 07:25 AM | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 41 | i really feel devastated. well can i do anything else or this is the end.almost 2mnts post surgery with more than half of my tongue taken off and enough glands from the left side and now new problem on the right jugular vein that is supposed to be taken off 1yr ago. i am in a complete loss. how sth like that could possibly be happening? could be a Dr's mistake and now what can i do? i have already taken enough radiation. my two sides of the mouth keep getting more swollen. can anyone give me his opinion? i know that only the Drs know but who can tell me if they really do know what is right, so far the contrary is only being proved.
thanks everybody for your support.
sophia
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Sophia, I have no advice at all, but I wanted you to know that I "hear" your frustration and your fear, and I hope you get answers soon. I do believe that most doctors know what they are doing, but of course we have to choose well, going to those who have the most experience, usually in the large centers. If you live near one, I would certainly go NOW for some second opinions. It does sound like you have something going on that needs attention, and as an SCC survivor, I sure would rush to the best doctor I could find! I will pray that you find just the right person to give you the best care possible.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sophia,
I went to see 5 different doctors and got 5 different Tx suggestions before I decided which one to go with so don't be bashful...get as many opinions as you want until you know which way to proceed. It may still be a tough call but I bet you will be more prepared to make it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Sophia, From what I've heard from my Greek friend who's father had throat cancer, the Greek medical system can be very hard to get through to find a good doctor. My friend says there is a alot of corruption and you have to have a lot of extra money to see a private doctor or a high level specialist quickly. So based on that, I know people from the U.S. talking about getting seocnd opinions may not sound like they understand your situation. But if there is any way you can find the resources to see the best doctor you can find right now, this is the time to do it. Perhaps you havwe family who can help raise the extra funds it might take? Don't be shy about asking for what would be best for you right now. And we will be ehre to offer what support we can.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sophia,
I didn't even read where you were from and I do take a lot of things for granted in the U.S. so if it's as hard to find competent help in Greece as Nelie says I feel for you but you must be even more determined to get another opinion. I have seen many people die from Oral Cancer so please don't just sit back and take what they give you. Be the squeaky wheel.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 41 | thank you very much for all of your support. well i visited today another Dr that told me exactly what is going on. have 2 new sites, even after 1 month post surgery, one on the right side at the base of my tongue and a new one on the left side at the point where the tongue meets the larynx!! i also have problems to both side of my neck. the new Dr suggested treatments with hyperbaric oxygen, then a couple of chemo with cisplatin and then radiation with IMRT. of course he is not very optimistic but he said that he will try to do his best. as you can understand i am very sad and disapointed because i have never gave up fighting and i tried as hard as i could to constantly checking the situation and do what my Drs said. and now unfortunately nothing seemed to be going well. what do you think i should do, could you think of any other treatment that could help me?
thanks for listening
sophia
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sorry but it sounds like you have to hit this 2nd time with the kitchen sink again. Lets pray this time it kills all the cancer.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Sophia,
I don't have any answers or suggestions on treatment options...but I do know this...keep fighting, keep positive, strange and good things can happen. Nothing is a given with this disease.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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