choices -- scc bot hpv+

Stage IV SCC BOT nodes on right side compromised.

My first question would be where are you being treated and, is this the only opinion you've had?  Most (not all by any means) protocols call for Chemo and Rads for our disease and Radiation for any surgery to insure that there are no cells left behind.  For the most part, Chemo will not eradicate the disease but will knock it back and kill any cells that might have spread to other organs.  Rads will eradicate the disease in the field that is radiated.  Surgery alone tends to just treat what is local with no regard to cell(s) that might have come loose and spread.

So, insuring that you have the best opinion possible is a must.  

Good luck to you and ask lots of questions as you go through treatment.  There is amazing knowledge here about how to deal with the side effects of our treatment.

Joe

I had three surgeries.  I had a choice to not have the radical tonsillectomy and neck dissection but I wanted all of the known cancer out. Initially the doctors thought I just had cancer in two lymph nodes but thanks to the neck dissection they were able to identify two more and remove them.  Surgery does have additional side effects but a good surgeon using TORS can minimize the risk.  I then went through 33 radiation treatments and 3 treatments of cisplatin.  Google Dr. Rodrigo Bayon he has a video he did on TORS.  In the end it is your decision and what is best for you.  

James,

I am sure your head is spinning, so I will try to keep it simple from my end. I had Base of Tongue cancer. I was given the option of Radiation plus Chemo or Surgery followed by Radiation and maybe Chemo.

I knew I wanted the cancer out of my body so I chose surgery. I had part of my tongue removed and a Radical Neck disection. I was then treated with 30 Radiation treatments, Chemo was a back-up in the event of reoccurance. That was 10yrs ago.

As mentioned above, there are side effects that can last a life time. When I had the neck disection, I thought I only had 1 lymphnode involved, but there was 2 of them. Radiation took care of the rest. I do suffer from extreme dry mouth, no saliva what so ever. They have improved the machines since I went thru this and many here get back their saliva, may not be all of it, but some of it.

Also as mentioned, this is your choice to make as far as which option you take.

My Best to You and Everyone Here

Welcome to the H&N Group, and very sory you have to be here.

I would consider getting a second opinion from a major cancer hospital with a tumor board. From what I have seen HPV+ responses very well with both Chemo and Rads. My doctors came out and told me what they felt was the best option for me. My choice was to have it or not. At the end they said I didn't need RADs but if I wanted them I could hav it also, but they felt it was not needed.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

I would have surgery first with the neck dissection. Then if still needed they can do RAD and chemo. If Rads are done before surgery the RADs make the skin tougher and more like leather to have surgery.

Just my opnion, I only had surgery for Larynx SCC, T3;N0;M0; Had an laryngectomy and neck dissection on both sides and removed 86 glands. Just had my one year NED.

Best of luck and remember it's open 24/7 for support.

Bill

Hi James,

Glad you found this forum where there is plenty of information you can take with you.

I'm a caregiver to 53 yr male, SCC BOT HPV 16+, Diagnosed Aug 2012 2 yrs out. His tx consisted of 7 weeks chemo (once a week)--Carboplatin & Paclataxel, Rads 7 weeks (5 days week). No surgery. All check ups so far have been good.

The problem I have with some of these doctors is WHY on EARTH are they asking YOU what you want? The answer is clear....GET THE CANCER out and KEEP it out! My God, we are not doctors! We put our trust and faith in them to make the BEST decisions for us. I think for your piece of mind, you may want to consider a second opinion. This is not uncommon to do. Many have done this, including ourselves. You will most likely not second guess yourself then.

Blessing to you and be sure to stay close in touch here. There are many here that will help you along the way. Be sure to check out the Superthread at the top of the topics.

God Bless,

~C

I too was BOT, SCC, HPV+ but stage IVa, primary tumor was 3 CM and the largest of the lymph nodes was 6 CM, fortunately no mets outside of the neck.  I was given options as well but did some research and decided on an agressive program.  Stage 1 would be induction chemo, 5 days on high dose chemo as an in-patient, with 2 weeks between sessions, a total of 3, then chemo radiation and then if necessary surgery. 

It is your choice to make but the more I read about the treatment plans the more studies seem to push chemo/rads and then surgery.

Former football player Jim Kelly had SCC, HPV+ and they did surgery, declaring that they got it all and he was good to go.  Over the course of several months it re-asserted itself and he wound up with the combination therapy as well. 

It's your choice, but I'd look at a 2nd opinion before making it

best wishes for an easy treatment experience.

Peter

ratface said:

Surgery, hands down

Hi James

You are truly fortunate to have options. Most of us were dictated treatment protocols. Surgery alone is almost always the best option. They cut it out, done, finito. Life is good. Some minor risks with the proposed surgery which can be minimized by spending your money on a good surgeon. Radiation has multiple long term effects, risks of a second radition induced cancer,  thickening of arteries, destruction of saliva glands and weakening and brittleness to your jaw bone. Debilitating effects of radiation will stay with you  to some degree the rest of your life. Chemo is no picinic either, also can have long lasting side effects. This stuff is not good for you. We endure it to survive. I would opt for surgery every time. Radiation and surgery can always come later. You have a really curable diagnosis with multiple available treatment options. Play your hand incremently. 

 

Hello,

Your comment has really worried me now. I was given the option of surgery or rad/chemo, but they strongly advIsed against surgery saying it could affect my speech. 9 weeks now since treatment, really struggling with recovery. So now  that I opted for rad/chemo higher chance of coming back ? Suffering from my treatment probably the rest of my life ? Its not something I wanted to read. Been crying  lots because of painful throat still. I had cancer bot hpv16, 1st stage. Now this has me really scared. I find out on the 11th nov if cancer is gone.

james, that would be a hard decision.  only you can make that call.  wishing you the best with which ever way you go.

God bless you,

dj