surgery - radiation- another surgery?

[tichinose]

I had a 6cm tumor and had surgery in 2008 and then it started to regrow in 2010 and they did radiation.  Now I have the doctors in Cinti say I should wait on the radiation to work which is 6 mos ago.  The HEI (Dr. Freidmann)  say surgery because it is growing....what should i do?  Is necrosis good?  My symptoms are worse than the first tie when I had surgery.

[Migoi]

Wow, that's a tough situation. It's difficult enough when you're having to make the operation/wait decisions, even tougher when you get conflicting recommendations from two different sets of doctors. You are in our thoughts and prayers as you work on making this decision.

Sorry that I don't have any advice to help you. If it was my head, I'm thinking there are some questions that would help make the decision. Has there been growth, beyond the expected swelling, of the AN since the radiation? Are the symptoms ones that appear to be permanent or temporary? What is the current size and growth rate? What are the expected side effects of a second surgery versus the expected side effects of the radiation? Will waiting to see if the radiation worked make the surgical removal more difficult or easier?

I post these questions not with an expectation of posted answers but in an effort to support your decision the only way a stranger on the internet can...with moral support.

..thanks for being.. migoi

[leapyrtwins]

Tichinose -

I don't know if you are a member of the ANA or not, but their latest newsletter (Notes) has an excellent article on the front page about regrowth treatment options.

You should check it out. 

Jan

PS - Migoi, long time no see.  Glad you're back!

[TJ]

Not being a doctor the only advice I can add is what my doctor told me about radiation.  He told me that it would take 12-18 months after radiation to see if the radiation did what it was suppose to do and stop the growth.  Only being 6 months past the radiation may not be enough time.

TJ

[leapyrtwins]

Not being a doctor the only advice I can add is what my doctor told me about radiation.  He told me that it would take 12-18 months after radiation to see if the radiation did what it was suppose to do and stop the growth. 

When my doc and I discussed radiation, he told me the same thing.  He also said it could take 12-18 months before I experienced any side-effects from the radiation like balance issues, etc.

Jan

[Jim Scott]

Terri ~

Your situation is perplexing but you need to gain some perspective before making a decision.  I would definitely want to be quite certain that the alleged re-growth is real and not post-radiation swelling.  I concur with the doctor that advised waiting six months to check for verifiable tumor re-growth before jumping into another surgery.  However, if your symptoms are increasing and becoming debilitating, then you'll want to take another look at surgery, especially when recommended by the illustrious Dr. Friedman of HEI .  Tough call - and not one that anyone can make for you - but we understand your anxiety and hope that the supposed re-growth is proven to be swelling, which, as previous posters stated, is common at 6 months post-radiation.

Jim

[tichinose]

The balance issue is the worse because  I went for cat scan on my face because i keep falling.  Headaches are a pain....the whole numbness on right side has effected my writing.  I have been given a cane and that is embarrassing.  How could 2 doctors on this board have 2 completely different opinions?  Somebody has to know I know my head and I feel their is regrowth....Steroids didnot help accept help my gain weight.  Now a strobe test nexst week because swallowing is impeared,  Well I am in Vegas making up my mind and i am thinking surgery

[emom]

God bless, and am saying prayers for you.  AND for your doctors.  May you all find agreement and the right decision, and quickly.

emom