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!

Charles, You have a lot on your plate right now & your head is spinning. See what goes down on Friday. I know it is a tough break for you being soo young. The radiation does a number on you. The dry mouth is really a drag, sorry to say. But we do what we gotta do to get this (cancer) behind us. Being a nurse is a curse (knowing so much) & a blessing! I didn't ask a lot of questions...I was to numb! I really went along with what the doc suggested (I did refuse surgery). I was lucky that my sister, mom & dad came w/me to most appointments & asked the questions & took notes. I had "chemo brain" even before any chemo !!!!

The chemo they are likely advocating (cisplatin) is designed to enhance the effects of radiation. Do both. It is an aggressive disease and you should respond in kind.

Donna

Charles,

We don't know if Clark's SCC was HPV+ yet. We have been dealing with so many other issues that asking that question has taken a back seat. I do want to know though. At the next appt with the ENT, I'll be sure to ask.

Anita

Charles,

Yes it does appear that HPV+ SCC responds better to the same Tx and (therefore) has less of a chance of recurrence but the unanswered question is how much less treatment can a HPV+ patient receive and still kill the cancer noting the many different factual patient presentations one could encounter. There haven't been any studies trying to answer that question yet. Dr Trotti's may be the first to give us some direction but that will take years. Until then it would just be pure speculation for anyone to suggest a lesser Tx and the patient would be nothing more than a guinea pig. Do I feel that one day there will be 2 different treatments for HPV+ vs. HPV- SCC, yes but that doesn't mean I would want to be one of the one test subjects.

Re the surgery, you are correct that I didn't have a ND and that was Moffitt's approach even before I was confirmed HPV+. If I had listened to 3 of the 5 doctors I saw leading up to Moffitt, I would have had some form of a ND.

Also don't beat yourself up on the "who did it come from" question because you will most likely never get that answer. Just appreciate that fact that you are unique enough to have allowed the HPV virus an unchallenged welcome into your cellular structure. lol

Interesting topic as I just returned from my follow up appt at Duke. My Rad Dr brought up this same topic and discussed some of the trials that Duke will be part of. He indicated that they are part of the same study as Moffitt (David CPA ?). We were talking about why there is such a great "cure" rate for HPV+ and yes perhaps the treatment copuld be "reduced". His interesting comment was that perhaps the current treatment protocol is just right = the higher success rate. However he is a believer in being pro active and is excited about some of these new studies. He feels that less damage to the patient the better the success but job #1 is to get rid of the cancer.

Charles - I had the Rad/Chemo(Cisplatin)/surgery and had a relativly easy time with it. I have almost zero side effects. IMO the key is to get it the first time. I would not let the scare of the treatment have a bearing on my decision. I would go with the experts and what gave me the best chance to beat this thing. I agree with other comments about in the future there may be facts to support a lesser dose of Rad/Chemo but not sure I would get in line today.

You can see from this forum that people are beating this everyday and you can to.......the flip side can be pretty sweet. Good luck and I am sure the opinion from Sloan will help set direction.

Charles,
I also had the Rad/Chemo (Cisplatin).I did well up to the 2nd Cisplatin but got so sick from it that I refused the third on the insistance of family and friends who were certain that if I took that last dose I'd be dead. I came thru just fine without the 3rd, if you can describe any rad/chemo outcome as "fine". It was also okay with both docs. Still, everyone is so different. I think you'll get some really good feedback at Sloan. Best wishes!
Pat C.

My husband is going to Sloan for his treatment and I was very impressed with the amount of thought and discussion that went into his treatment recommendation. We saw a top surgeon there and everyone told us that he was going to recommend surgery because that's what surgeons do.
Nope, He recommended trying chemo/rads first. Then we met with the MO and RO and again lots of discussion and thought about treatment plan.
He is doing chemo and rad but it wasn't automatic at all. He felt like an individual case with great thought given to his treatment.
Yes, there's a certain protocal but there are many shades within it. So, I'm so glad to hear you are getting opinions.
Our philosophy was to go aggressive in the hopes of getting it all the first time around. But everyone has different thoughts on this,I imagine.
If you have any questions about Sloan let me know. As you can see, we're fans...

Hi Charles,
I had surgery first, then radiation (no chemo). In my case I have poor kidney function and they didn't want to risk the chemo making things worse.

I was told they prefer to go with chemo/radiation, but with appropriate scans, biopsies and scopes, the surgery first approach could find and remove the tumors and radiation could handle any remaining microscopic cancer.

Nevertheless, given an option I would have gone for chemo/radiation.

keep in mind it is increasingly common and acceptable to defer surgery until after chemo/radiation since in most cases the chemo/radiation can effectively eliminate most tumors so surgery may not be necessary.

On the HPV treatment choices issue, highly regard expert Dr. Maura Gillison recently said:
..."it is unclear whether intensification would in fact improve survival, or whether deintensification would be safe, especially given that metastasis remains equally problematic in HPV-positive disease. Until we have data, treatment decisions should be masked to HPV status...�

She also points out that HPV+ patients are generally younger and healthier to begin with.

Source: http://oralcancernews.org/wp/hpv-po...rognosis-does-not-lead-to-clear-choices/

A common permanent side effect from Cisplatin is ringing in the ears; Apparently less so with Carboplatin.

Charles, you got a lot of great advice. I want to add that I had rads and chmo (cisplatin). The chemo does increase the side effects of rads, but I had not nausea with chemo. I did make sure I took my nause meds as prescribed and did not wait for the nausea to come on before taking them. I did have a bad time with the radiation, but here I sit almost 4 month post treatment and can eat almost anything if it is moist enough. My cancer was not due to HPV. and it was a reccurrence and was told that if I had, had rads and chemo the first time, I may not have had to deak with it a second time. Who really ever knows with this stuff. I say all that to say I would go with the most aggressive approach in hopes that you do not have to deal with it a second time. You will recover, you many not thinks in the middle of treatment, but let me be a testimony that recovery does happen. Anyone on this board can tell you that if recovery happened for my it can happen for anyone.

Well, Went to Memorial-Sloan Kettering (NYC) on Friday for 3rd opinion. It is a great huge hospital. I recommend it highly if your local hospitals in the area do not provide top Radiology Oncologist; since the surgery and medicine part is less critical in my book. What i mean by this is Cisplatin can be given and monitored anywhere; yes it is important to have a good surgeon; but I think that having the latest radiology technology is the essential part of out treatment! Basically, the Medical oncologist said there was no reason for me to put my self under the stress of trying to relocate to the city for 7 weeks since I'm not going to be doing any clinical trials and I have a good radiology Oncologist in Rochester!

I'm amazed just thinking that people move themselves to another city for 8 weeks. I guess I could do it if I was married, had a girlfriend that could help; but the isolation alone plus having to deal with the stress of driving too and from treatments 5 days a week in a stressful city would be too much; especially being in pain, nauseated, and depress ( I would want to be home in my own bed)!! This diagnosis is depressing enough; I wouldn't be able to handle being isolated from my friends who I rely on for support!

Having said that, Yes Memorial Sloan said I should take the cisplatin too be safe. He agreed that my surgeon may be correct that I could be cancer free right now after surgery and that all I need is radiation to be safe. He also agreed that in the future hopefully trial studies will prove that less doses of radiation and cisplatin will be needed for HPV+ tumors; but right now it's too early! DAMMIT WHY COULDN"T I HAVE GOTTEN THIS 10 YEARS FROM NOW WHEN THERE IS MORE RESEARCH ON THE SUBJECT !!!!

The thing that upsets me at 2nd and 3rd opinions is that they don't present your case at a tumor board like your the treating hospital does. Wilmont (UofR) had a tumor board that met twice on my case and agreed both times that I only needed radiation. FYI for newbies: Tumor board= Surgeon, Radiology, and Medical oncologist;a team approach all deciding in a meeting what is best. Memorial Sloan was only 1 medical oncologist opinion who gives chemo; so of course he is going to say I think you should have chemo! At both opinions Roswell and Memorial Sloan I asked if the doctors could call my Rochester doctor and ask why they felt so strongly that I only needed radiation. They both said well he can call us if he wants too; I'll fax my opinion. What a bunch of crap!! It's all about money and I feel they don't care since I won't be being treated at that hospital!

Getting these 2nd and 3rd opinions was so frustrating!! I just feel like my body and my life is a big dam/sinking ship with HOLES and I'm frantically tying to find ways to plug the holes!

I guess I will be just another experiment/statistic in the oral cancer journals!!

It isn't about the money - it is about liability. If you got treated at Sloan, you would have a team. For an opinion you got a person. All the big centers have a "gate keeper" / evaluator that helps the people that come for opinions make decisions, but also evaluates if they could actually be helped by coming there. In many cases, that gatekeeper decides that your local treatment team's opinion - compared to what he/she knows of their own institution's protocols regarding similar cases, is similar enough to not warrant a move to their treatment facility. There is also a huge liability to recommending treatment protocols that are going to be administered by someone that you don't even know at another institution. That is why the reverse "have them contact me" approach.

The big institution systems have mandatory tumor boards, and no single doctor decides treatment, not only because it is best for the patient, but because it ensures that the institution, from a success standpoint, and a liability standpoint, is doing what they believe from multiple multidisciplinary experiences, to be the best possible treatment.

By the by, I am one of those people that traveled across the country to get treated because I didn't like the treatment plan, and reputation of my local facility. 8 weeks in another city, in an apartment. Since I was sleeping all the time from the radiation treatments beating me up, it passed rather quickly. The tough part was the next 5 months back at home after treatments when I was NED, but still suffering from the impacts of the treatments. Still on a PEG, still on morphine, still in pain, still emotionally fragile, still getting every bacterial and fungal infection that came around... those were the months when really needed my support team of friends.

My experience at Moffitt was entirely different. Moffitt was my 5th opinion. My ENT had called 2 days earlier to "try" and get me an appointment with his college friend. I was told that I didn't have an appointment but the doctor would try and fit me in once I got there. I first saw their Chief of Oral Surgery. After his videoed scope he told me he would like to put me under to try and find my Primary, then he sent me over to meet a RO who then sent me over to meet with a MO, all before I had decided to turn myself over to Moffitt. After a nearly full day there I decided that Moffitt was the place I wanted to be treated and they scheduled my exploratory for the very next day.

Hi, Charles,

You plug the holes by getting as much reliable information as you can, sorting it out, deciding on a course of treatment and committing to it. It's a lot to deal with, but many of us had to travel that path on our own. The point is, you are the most important person in this battle, and you have to decide you're worth fighting for. We do.

Yeah, it would be nice to get this disease when there is more research on treatment, or there is better treatment, or ... But we didn't. Take a deep breath. You'll make it, too.

Good luck.

Marlene

Our experience was similar to David's at Moffitt. The first day we were seen by a surgeon (daughter of the Chief) and the same RO that David saw. Both scoped, both explained that Bill's diagnosis was more advanced than our local ENT had indicated. But....after the tumor board met on our case, the RO called and gave his blessing for us to be treated locally as he was familiar with the RO and MO here. The local ENT has not been consulted again (he was a dufus.) We would have relocated to Tampa if they had suggested but we were happy to be able to stay home. We now return to Moffitt for checkups.

By the way, I know that a lot of CCC's have a facility on or near the campus run by the American Cancer Society (Hope Lodge) that provides housing for patients undergoing treatment. That would have been our choice had we stayed at Moffitt for treatment. Very nice accomodations, great support help. All at no charge.

Deb

(he was a dufus.)

Deb,

Don't hold back now...how do you really feel! lol

Oh David...I could say so much more. He was referred by our PCP reluctantly because of insurance issues/network, etc. PCP told us he could do the initial workup and biopsy without too much problems. He was the worst communicator I have ever dealt with..waited till we were in the exam room and with us to read the pathology reports and stand there saying nothing for about 8 minutes while we were sweating bullets about the results. He was just awful. Decided right then and there that we were going somewhere else. I took our slides and the pathology report and headed north to Tampa. We never heard from him again..no one called asking how we were. So glad we made the decision to seek another opinion. He was just a fluke but I feel sorry for anyone using him. Our MO and RO here were wonderful.

Deb

Decided to use the whole kitchen sink. Met with my MO at Wilmont for the first time he even showed me the logarithm from national Comprehensive cancer network (NCCN) google it; decided that cispaltin with chemo is the better bet! Now my nursing mind is working in overtime because after my 1st dose yesterday I was thinking if I make it through 2 doses why notlower the 3rd dose if they didn't think I needed it in the 1st place. I know I'm crazy; but you have to admit it is a rationale thought!

cisplatin: 206mg x 1 every 3 weeks; thinking abou tlowering dosage on week 3.
Radiaition IMRT via TOMO 57 gry back of through; 65 gry right side of neck; they want to do left side but Roswell and my ENT disagree!

Be careful with the larger doses of Cis as it can cause permanent hearing loss. If you experience any "ringing" in your ears tell your MO ASAP. Nothing can be done about what's already in your system but they usually switch you over to Carboplatin for any remaining treatments.

Never heard of reducing the quantity for the 3rd bag in a large series treatment but some have gone with smaller quantities once a week for 6 weeks.

I was left with a left ear that is almost useless and it keeps getting worse. It does help keep the sides of my head separated tho. Alive and smiling but missing many things.

Dianne and Charles I am Annette and my Dad is currently undergoing tx at Lipson for recurrent SCC of buccal mucosa now stage 4 . My Dad is also happy with his team. He esp is fond of his radiation oncologist. Charles he is getting Rad and round 2 of cisplatin and has tolerated it very well. Just tired. I live in MS but I am one of his caregivers along with my aunt from Boston and sister who lives in Webster. I wish both of you the best. I'll be up again next week we may run into each other. Hang in there be strong.