Hi, I joined here just this week and have a zillion questions. Caregiver to my husband who has BOT SCC T2 Stage 4, HPV+ and left LN's affected. He's just started RT this week and had 2nd Cisplatin. We had choice of Robotic Surgery to remove tongue tumor and same time surgery to remove affected LN's. Surgeon said he would have to have RT after anyway with 50/50 chance of Chemo depending on Pathology report. So we thought if he had to have RT and Chemo anyway why go through the trauma of surgery as well? Doc said both choices (Surgery +RT and poss Chemo, or no surgery and RT + Chemo) would have same results. We asked Doc if the RT would be less if he had surgery and Doc said only a little. So we chose RT + Chemo. We are still worried that the amount of RT he is getting, 1X daily 6X wk X 7 wks is too much. I noticed that most people here have had surgery so is that the best way to go and does it have a better outcome?
Thanks.

The very best thing a patient can do is to be treated at a major cancer center. There will be a team based approach with all the specialists getting together to discuss the patients individual case. They will collectively make a recommendation of a treatment plan. Cancer centers will go by a guideline when selecting what course of action to take. The patient can get second or even a third opinion just to ease their doubts and be certain they have the best team for treatment. Once the treatment plan has been selected, sometimes its hard to not second guess yourself. But put your faith in the doctors and your selection. At OCF we are not medical professionals so its not easy to attempt to second guess what the treatment plan is for another patient. I agree, it does sound like alot of radiation treatments but there is alot which goes into this, maybe the rads are a lower dose but with more treatments to equal the usual amount. There could be all kinds of things that come into play which would be why the treatment choices you were presented were given to you. I wish you both the very best with everything!

Hi Pamela

My Love of Life, Alex, also had HPV+ve BOT and tonsillar cancer stage 4. We did not have surgery either as the team thought there would be too much structural damage done for very little gain.

Because Alex was quite young (52), they also decided to treat extremely aggressively prior with induction chemo. This approach is still a bit controversial with one camp saying it is too much treatment for not enough gain whilst the other camp believes that if you can tolerate the potential added side effects (some of them long term and permanent), the gain is worth it. I am still not sure where I sit with this having read just about every clinical trial I could get my hands on and watching Alex go through hell.

Your treatment sounds fairly standard. The NCCN Head and Neck guidelines suggest 35 radiation treatments (7 weeks at 5 days per week).

I will also echo Christine and say that the most important thing to consider is the experience of your oncology team. Someone who sees 10 patients a year can't possibly be as well practised as a doctor who sees 100.

Once the treatment has been selected, don't look back - you will do your head in if you do.

There is no absolutely right path to take although there is a well trodden one that involves a a single agent chemo in combination with radiation. Things are a little bit fuzzy around the execution of the radiation, dose of radiation, dose of chemo, type of chemo, etc. Cisplatin is the most studied chemo agent in combination with radiation and remains the standard for this reason. Others may be just as effective but are not as well studied. Radiation is most commonly 5 days per week for 7 weeks (35 treatments) but there are legitimate variations on this too - such as more daily dose for less time or less daily dose for more time. The end result is the same in total Gys(the measure of radiation) administered over the course of treatment.

Next time you are in front of the doctor consider asking the following:
1. Is this a standard treatment and if not, what is their thinking around whatever variation they have chosen?
2. Are there any other options and would the doctor please take you through what was considered and then why were they rejected (or why was your treatment finally selected)?
3. If there are options that in the doctors opinion are equal in value, what are the pros and cons of each? Sometimes doctors choose less side effects with slightly less efficacy or vice versa without asking if the patient has any preferences. A 1% increase in survival in return for a miserable 3 months of swallowing issues might be a preference for some whilst others would much prefer to avoid side effects if they see the potential gain as being negligible.

Take heart in the fact that your husband has HPV +ve cancer which responds better to treatment than other types of cancer.

Alex just passed his 3 year mark and the doctors were amazed at his immediate response (even though they nearly killed him). He is now their poster boy for success in a smoking + HPV+ve patient They were convinced he fit the profile of a smoking drinking caused cancer so didn't initially see the point of testing for HPV until they realised it was the only way to stop the annoying girlfriend clogging their inbox .

To add to the above, you already commited to not having surgery first, so you can't second guess now. Anyway, most oropharyngeal patients (BOT, Tonsil) have chemoradiation, instead of surgery, being it preserves swallowing function, and other structures, as opposed to having surgery, which can be debilitive, and use "Surgery as a last resort" or as "Salvage Surgery."

Oral cancer is usually with surgery first, which you may be seeing more often here with these patients, and some have radiation, and or chemoradiation in addition. There is some difference in treatments in oral, and oral tongue as opposed to oropparynggeal, which includes the BOT, tonsil.

NCCN guidlines also include different methods for IMRT delivery, including 6 days, Stimultaneous Integrated Boost (SIB) between 66-74Gy to the gross disease, and is used in both "conventional treatment" and 6 fractions/week "accelerated" schedule. 180cGY for 7 weeks comes to 7560cGY or 75.6Gy, which seems over some some toxity levels, and above the target level above (66-74GY), but depends on the type of delivery, which can add more safely. If it's 2Gy daily, for 6 weeks, which serms used more often in the "accelerated schedule", that comes to 7200cgy or 72Gy, which is within the NCCN target levels, and below the unaccptable toxity level above 75GY. You may want to ask the dt about this, and if you want 6 weeks, if it can be done, the daily fractions may have to increase to 200cGy instead of 180.

Below is a randomised, multi-center trial for five versus six fractions of radiotherapy per week for squamous-cell carcinoma of the head and neck showing to be more effective.

http://www.ncbi.nlm.nih.gov/pubmed/20382075

Good luck with everything.

Thank you all for the info. We understand what you are saying and although we thought we had seen or got the opinions of enough doctors (and from John Hopkins no less!) on surgery +RT& Chemo or just RT+Chemo we made the mistake of 1- not going to a Cancer Center and working with a "Team" and 2 - getting a second opinion from another RO. It was such an agonizing time weighing up all the pros and cons and we were so confused with all the information. We thought we had made the right decision. We are very happy with the surgeon who will continue to monitor my husband over the next few years and also we really like the MO but we do not like the RO who is arrogant, does not like us asking questions as he believes we should do whatever he says and thinks he is God! We worked out that my husband will be getting 75.6GY over 7 weeks of 6X p.wk RT (42TX) . He gets 180 Rad, 1.8GY daily, 10.8 weekly. So as this seems to be over and above what anyone else here has had, and seems to be the overall opinion that it exceeds the toxicity level, we were thinking of just not doing the last (7th) week, which would make my husband's total RT 64.8GY (36TX). We are, however, getting a second opinion from another RO at Hopkins early next week. It's obviously too late now to change RO's as he has already started TX but we can at least get a qualified opinion as to whether we should skip the last week of RT.
Sorry if Im being annoying and going on and on and on and on!
Pamela

Hi Pamela,

Sorry you find yourself here. I'm a newbie to this site but it's proven to be full of information and support.

I'm a firm believer in 2nd opinions and don't count out switching doctors or hospitals. Leave that decision up to the team you decide on.

I started locally (Winchester VA) and quickly found the facility I was considering was no where near qualified to treat me! I sought a 2nd opinion at Johns Hopkins and that's where I'm seeking treatment. For me and my situation, they opted for surgery first and chemo/rads as a "mop up" operation. I'm getting 6 weeks worth (30 rads and 6 weekly chemos - Cisplatin).

I can tell you this... the "Team" I'm working with are top notch! They were all over it when I visited. They had reviewed everything up until my visit and had already gone over their plan of attack by the time I got there. I was poked and prodded more in 30 minutes than I was the entire time locally! They took about 10 minutes after examining me, came in and laid it out there. All in agreement and all confident they would get this beast out of me!

Contact me thru a PM if you would like further info about my physician.


She has been wonderful in helping us navigate the flood waters of all of this.

Positive thoughts and prayers

"T"

Hi Pamela! My Dad has the same case as you and we are crappling with the same decision. He is Stage 4A with Lymph involvement being treated with Mayo. Do you feel like not doing the surgery was worth it. To me it seems like the surgery was the logical thing to do just to get the tumor and lymph nodes out....and then clean up crew with chemo/radiation. And advice on this is greatly apprecaited:)))