Hello, I am unfortunately a new winner to the Oral cancer lottery. Non-smoker, moderate weekend drinker, yes HPV+. Needless to stay still bitter about the whole thing. I have many military/ college buddies who had led pretty much the same lifestyle as me and why did I end choosing the short straw!!I am a 38 year old male. I was diagnosed with T2N2Mx/ stage IVA on Mar 29th. Primary was R tonsil with 1 node involvement level II.

Had radical tonsillectomy with R neck resection at Wilmont Cancer center (Rochester, NY.) Surgery went well. This Tuesday will be 4 weeks post-op. They felt good with the surgery (negative margins and only one positive node) but the node did have focal Extracapsular extension so they want to do radiation to be safe.

Went to Roswell (Buffalo, NY) for 2nd opinion they said chemo (cisplatin) and radiation. Not sure what to do Wilmont says just radiation and Roswell say chemo and rads. so confused; I'm a Registered nurse so I have researched the side effects of both. Also I have read that HPV+ tumors respond well to tx; but not sure if that's with Rad alone or with chemo! I'm suppose to start Radiation on May 12th. Going to go to to Memorial Sloan Kettering on Friday for 3rd opinion. Not sure If I'm wasting my time; I'm sure they are going to say it's 50/50 flip a coin! scared and confused!
I know that the decision is ultimately up to me but would appreciate any advice!!


Charles

Charles,

Sloan is one of the best centers in the country. I think that opinion will be an important one for you.

I did radiation only for an earlier stage cancer but after coming to these boards I did make sure that all of my doctors agreed with that decision. I was lucky because all three opinions said the same thing (I got two second opinions just as you are doing).

We only get one first shot at this disease; second shots are almost always tougher. I think you will be able to make the best decision after talking to the folks at Sloan.

Please keep us updated on what Sloan say�s. A few here have been treated there so you will probably get some great feedback.

Charles,

Let's see what Sloan says.

As you can see I was HPV+ but what you don't see is how much work I've done since my Tx to expose HPV and certainly it's male connection. My RO at Moffitt, Dr Trotti, is about to begin a trial for HPV+ SCC patients wherein he will decrease the amount of radiation from the typical 70 gy to 60 and change from Cisplatin to Carboplatin all towards trying to see if reducing our normal barbaric TX will still kill the cancer and at the same time lessen the life altering side effects.

If it were me I would probably go with the normal IMRT and go with Cisplatin but in weekly doses vs. the typical 3 intervals. There is just too much at risk to try something else IMO.

One question, why did they stage you a MX? Was there some question about distant mets? I would ask Sloan about that one.

Charles,

It was my understanding that if there was nodal involvement, chemo and rads were the standard of care. My husband did not have any positive nodes so he only had rads. All the best with your next opinion.

David,

Clark's tumor was listed as T4N0Mx. The report said no distant metastasis. I assumed that was what the Mx meant.

Anita

Hey Thanks for the response David. No it was MO I thought M0 and MX were technically the same! I saw my surgeon again today to discuss my 2nd opinion. He said that he had attended a Head and Neck conference last week and that the going trend for HPV+ is the the pendulum swinging to less aggressive approaches; he said that some surgeons across the country would even argue that since all the margins where negative and only one tonsil was positive at level II; that there is a chance that I was cancer free at this point and wouldn't even do rads and wait and save rads and chemo in case of reaccurance. But he feels and said if it was him he would do radiation and not chemo. Said he was suggesting 55-57 gry for tonsil area and 60-65 gry for right neck. The radiology oncologist wants to do low gry on the left side of neck as well but he is going to discuss that with her because he disagrees. I hope Sloan says the same thing. What were your side effects from cisplatin? Do you know anyone form this site who had really bad side effects? Thanks!

Charles

Hey thanks Anita, Was your husbands tumors HPV+? I think that's where things get gray. My understanding is because the research is starting to show that HPV+ tumors respond so well; they are recommending not using combined therapy if not needed. Also from I read it was if the margins were positive?

I don't know I'm 38 and I'm a nurse so I know that every medication has side effects posted and not everyone will get the same side effects. I guess I 'll have to wait and see what Memorial Sloan says for the Tie breaker! Thanks!

Charles

Wanted to correct my last post plus says thank you to Kelly as well. I meant to say that the growing trend is using less dosages of chemo and radiation! I think that's the tough part is that we are treading in uncharted territory! I think in the future we will see 2 different tx approaches ones for HPV+ tumors and ones for HPV negative! If I only had a crystal ball ! I agree I think Memorial Sloan will be the final decision maker! If only they would have warned me about this in Sex-ed and nursing school ! Some day I'm really hard on myself trying to figure out how and when I could have gotten the HPV! I'm sooooo scared !!!!!! I'm too young for this crap!!

Charles

Hi, David I think the otehr difference is that you didn't have surgery. I think my surgeon rationale is that the surgery got out the tumor and the node? But I agree there is alot at stake; I will see what Sloan says!

Hi Charles, I have nothing to add! I just wanted to say "HI" because I am also in Rochester, NY (treated @ RGH Lipson Center) I loved the care, the staff-everything! I had both chemo & rad. But as you know, every case is different! Best of Luck to you!

Hi Dianne, Yeah I saw that you were from Rochester . I was sent to Wilmont instead of RGH from my Primary ENT. I feel confident in My team but getting conflicting info from Roswell and this site. Not sure what to do!