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another step forward

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Hi all. I am so glad I found you. My husband had his first surgery to get more diagnostic info. They scoped him under general and took 4-5 biopses....nasoph, both tonsils, BOT, and one lower down. The MD said the only suspicious one was the left tonsil. He said that depending on the path results, he recommends davinci surgery and then rad (no chemo). Our other choice is rad and chemo. We have 2nd opinion at Dana Farber on Tues. They probably won't have path results....but will give us an idea from what they know and at least I'll get a sense of how I feel about them. His pet indicated left tonsil and left lymph node. They are testing for HPV.

Lots of decisions and I feel a bit lost...like I need more info or more research. We just want to make sure it is all out and gone like everyone else....but of course there are no guarantees....makes the decision hard. One question we intend to ask is....if we leave chemo out for now.....is that a card we can play if it recurrs. Or can we use that again even if we use it now?

OKay....just wanted to keep you all in the loop. DF on Tues and then meet with original MD/ENT who did surgery on THurs after path results are discussed by tumor boards. I feel good. He feels good (albeit a nagging sore throat at times)...but he knows this is nothing compared to what's ahead. We just want to start being active against this invader.

Hope you all had a great holiday.

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

are in reduction of tumor size and to sensitize it to radiation. Earlier stages of SCC, and tumors which lack no bulk, may not benefit from it, as those tumors have a very high cure rate without the chemo. And chemo has some potential dangers attached to it as well, so I'd not second guess the advice of your treatment team in this regard. I've had several treatments spaced over a long period of time, as I've had at least two different primaries, and likely one recurrance. Each situation is treated based on its particular merits. You can read my bio if it would help to get a feel for this. You're doing fine. Carry on.

Pat

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Pat,

Thanks for the info. It is such a steep learning curve in this world of hnc, but I am learning fast. We are going to wait to meet the MD at Farber and then whoever we feel most comfortable with, we will go with their recommendations. I think trust is so imp. There is just too many variables and changes in treatment to possibly make the decision alone. Being proactive is imp, but at some point, you have to give yourself over to your decision and treatment that the MD feels will rid the cancer and give you back quality of life. I read your bio...I am impressed with your willingness/persistence to not let cancer define you....we feel the same way. It has already won if you do that. And it is also so comforting to see someone go against the enemy 3 times and persist/live life.

Thanks....we're on the rollercoaster now and I will keep everyone posted as we ride it.

Kirsten

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

and it is likely someone has been wherever you are about to go. That is what makes the board so helpful. I think you have things in pretty good perspective. Your job is to be good patients and discerning consumers of healthcare. Their job is to help you achieve a cure, with a mininum of problems.

best

Pat

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

your whole attitude, the way you present what is important, the inner knowledge that you have to trust your Dr.'s are things I had to learn....I didn't come equiped with those attributes. GOOD FOR YOU!! I would been at a total loss if the Rad Onc, the Oncologist and the ENT disagreed about what to do, and put the decision on me...GULP! You are at a great hospital, tho...I know they'll come up with a plan that suits your hubby's case perfectly.

Yes, it does feel wonderful to get on the road to recovery...DOING SOMETHING about the disease is so much easier than all the waiting and wonderul....time on your hands is the perfect medium for fear growth. Actively getting into the battle is the answer.

Glad you're keeping us up to date...we really do keep you guys in our thoughts and prayers.

p

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

a few weeks back my hematology onc asked me what I'd want to do in event of recurrence.

he ruled out more radiation, but said that more chemo was certainly possible. I've had erbitux, and didn't ask him what type of chemo he had in mind if I need another go-round. but I do wonder about the efficacy of more chemo without radiation.

so yeah...in general more chemo should be possible later, even if you get it now. but that's from a non-professional, so take it with a grain of salt.

wishing you all speedy recovery!

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Here and your hospital, two great resources.

I've had Chemo (Induction) for my bot tumor but, had I not had the extensive neck disease (lymph nodes on both sides) I would have opted for robotic surgery. The reason (from my limited perspective) is to limit the amount of radiation needed. From everything I can learn (and from my experience with chemo) Radiation produces the most negative side effects of the entire treatment. I'd rather go through more chemo (and I had about the worst (strongest) you could have) then the 35 RADS I'm about to start.

Which ever you and your doc's end up with, realize that the folks here are a wealth of knowledge who will be there to help all along the path.

Joe Cortney
Dallas, TX

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