Met with the surgeon and the chemo oncologist this morning for the treatment recommendation (tumor board met on Wednesday). They've given us a choice of surgery followed by weekly cisplatin + 30 radiation treatments OR no surgery, only weekly ciplatin +35 radiation treatments.

The surgeon felt that the tumor could be removed without impacting the tongue muscles, as the tumor above the tongue at the left tonsil. Lymph nodes on the left side of the neck would also be removed.

I need to check with the rad oncologist to see what how surgery might change the radiation treatment. Less radiation would be desirable, I think.

Any thoughts or opinions? We need to make a decision very soon. Thank you.

I was originally told surgery, plus 30 rad plus chemo. The surgery was so successful, no rads or chemo were done (I was given the choice to still do radiation as I was in the middle of whether they would recommend or not).

The consequences of radiation are so severe, that I declined the rad option, so my view would be the least rad, the better.

Tina, thanks for the feedback. We were told that she would still need rad and chemo after surgery. I'll ask the doctors the following:
-with surgery, is there a chance that rad and/or chemo will not be necessary?
-what makes it more or less likely after surgery?

I agree with your view about radiation and chemo. I'm not a surgery person myself, and I've avoided it when it was an option, but I personally lean towards it in this case. But it's not my choice, thank goodness.

Is it HPV related?

Its not easy for any of us to weigh in on what would be best for your mothers situation. One of the most important things is to be treated at a comprehensive cancer center (CCC). These facilities have an entire team of specialists who will discuss your mothers case and make a treatment plan individually just for her. If she is already at a CCC then a second opinion at another CCC would be a good idea. Believe it or not, being treated at a CCC really does make a difference.

Best wishes!



PS... I have seen many patients in their 70s go thru radiation and go on to lead good healthy lives after treatments. Not everyone who has radiation (any age patient) will encounter problems, some sail right thru. Of course radiation can have its side effects, some long lasting. When it comes to treating oral cancer only surgery or radiation with or without chemo (or a combo of both surgery and rads) are the only ways to get rid of the cancer.

Most head and neck cancers are diagnosed in the 6th and 7th decade of life, ungil rcrntly, and most studies, I believe, we're done in this age group. I also read that this age group does well receiving treatment, just as a younger person, but I think any commorbities, underlying medical conditions, in any any age group, may have an effect. If the doctors recommended this treatment, they would not do so if they thought otherwise. Good luck with decision making.

[quote]Believe it or not, being treated at a CCC really does make a difference.[/quote]Hi Christine,
I know you are really pro CCC and I agree that these centers likely offer the smoothest workflows, most integrated inter-department procedures and computer systems, more focused and specialized, and in general just plain easier to go to a "one stop" solution.

However, I believe strongly that equal care can be had and possibly even better via point solution providers. I think there are HNC specialists in each key area: ENT, surgeon, MO, RO that exist outside the formal NCCN CCCs. You would likely have to do more research and also have a fair amount of luck to build your own team but I think it is realistic.

That said, given the way a cancer diagnosis is hurled at nearly all of us, leaving little time to do such planning and research then I agree going to a known NCCN CCC is a very good option.

So, why am I carping about this. Because I feel just plain fortunate to have a team that is combined from a couple different yet partnered medical systems that I trust totally with my life and care. I did not choose this option and it more or less fell into my lap but I have full confidence and trust in them all. The tumor board that assembles each week is from at least two different care systems so I feel this is even better than tumor boards composed of all members of the same organization. To me I get broader and more balanced and less biased recommendations as all are not under a single central authority which likely has some dictums and strong opinions on standard of care that they need to sing off the same song sheet.

Also, there are the logistical complications of traveling and getting all service from a CCC that might be hundreds of miles away, making it very hard for some folks to temporarily relocate due to family and job duties and such.

I'm just offering a different perspective that if you do not make it to a CCC, you can still have great odds and not feel like you are receiving second class care or a death sentence by seeking alternate provider options.

don

True, in some sense, Don, and also for better outcome in CCC. There is only one NCCN hospital in NYC, Memorial Sloan Kettering, out of hundreds, and doubt few are better than some here in NYC, that are also top in the U.S. and internationally. Just a few off my mind are Mount Sinai, Columbian Presbyterian, NYU, Montifiore. I don't know what the NCCN inclusion entails, and maybe these do not want to belong, and are not just cancer centers, but top in many other specialties, which matters to me too. There are other listings like U.S. News Reports Best Hospitals, NCI designated cancer hospitks, Chase Connely's Best Doctors, New York Magazine's Best Doctors, and Hospitals to name a few.

I was treated at Mount Sinai, and now at Beth Israel, both CCC. The other thing is top hospitals pick you, you don't pick them. Memorial Sloan Kettering did not even want to see me for a consultation, and said I was in good hands when hearing where I was treated, and seeking another consultation. Also, many of the high profile doctors in CCC, are probably further away, may have a limited schedule, are often away, may spend less time with you, and or have an assistant see you. I go for having a local doctor for certain care, and top CCC for my major care, like surgery, testing, which I do. Trust and gut feeling, also factor in.

Several reasons I did not go to MSK initially, is Mount Sinai had an office locally, where my ENT had office hours once a week, and was recommended by another ENT. They also rated higher rate for ENT thsn MSK. and I had a mental block for a hospital for only cancer patients, thinking these were for sick people only lol, and I underestimated this cancer, and also did not belong to an support groups or similar. and did not ask any opinions, which I still rarely do.

My current Radiation Oncologist wrote the book on Multidisciplinary Care, and sort of chastised me for having doctors all over NYC lol. He said I have to be treated at one place, which was my initial plan in 2009, but after my severe debility from chemo, I did not want to see anyone my local oncologist didn't suggest, but did keep my ENT, and formed my own team later on. She visited me every day while I was hospitalized for several months, oversaw my care, and saved my life , but last July, I did have to go elsewhere after a recurrence, which few could treat, but I still see her for the anemia, other issues, and at least would go to our local hospital in event I'm admitted here.

Of course a patient can find qualified medical care anywhere. There are good doctors all over just like there are bad ones. We all need to find a team where we trust them, after all this is a battle for our lives.

A CCC is where they attract the brightest and most talented physicians and specialists. These facilities will normally have the best of everything including equipment. At a CCC a team based approach is used where all the specialists meet weekly to discuss each individual case. They will all be on the same page making a treatment plan with all the specialists weighing in as what is best for the patient.

Regular hospitals do not normally use a team based approach, nor do they always follow the NCCN guidelines. Too often the radiation oncologist advises the patient they need radiation, the chemo doc says use chemo and the surgeon says lets operate. Ive seen many instances where these places are not familiar with treating oral cancer patients so they are inexperienced which has a major negative impact on the patient.

It is not only my opinion that a cancer center is better, this is a proven fact. There have been studies done supporting why cancer centers are better equipped to deal with oral cancer patients. Of course a patient can have a successful outcome at other locations as well. Some patients will have only one shot at this and if given just one chance at eliminating the cancer then they will want to go to a CCC. This is also important in complicated and recurrence cases to give them the best chance of survival. Why not go to where they treat hundreds of cases a year and are the most experienced to increase your odds of successful treatment. Treatment and getting rid of the cancer is the most important thing, everything else including finances arent as urgent.


Where you are Treated Matters article

Hi Littlebird,

My case is different, but it seems that I have a body that was built by the Timex folks, it takes a lickin' and keeps on tickin;.

I had 8 weeks of max radiation, and it didn't bother me. I had but three (massive) doses of Cisplatin, three weeks apart; and it flat kicked by butt! I lost 38 lbs in 90 days because I simply could not keep more than a single bottle of Ensure Plus in my stomach, and that only after smoking some illegal substance (cannabis).

But in the short time I've been here, I've seen that there is a wide response spectrum to the various treatments (Rad, chemo and surgery). My point is that you should choose the therapy that offers the best chance of success, and ignore the potential consequences.

You know what the consequences of not surviving are. I can't advise what the best treatment in your (mom's) case might be, but I'd put the question to my MO and go with his/her recommendation. Consequences can be dealt with, death takes care of itself.

I hope goes without saying, but I'll say it anyway; with al my heart, I wish your mom and you the very best possible outcome