Elisabeth age 63 blind and disabled due to diabetes. Doctors just removed large mass in my neck after saying for two years it is just a swolen saliva gland. They were obviously wrong for two years. Now I question thier honesty once more. They removed toncil with HPV 16 virus and 7 lymphnodes positive as well. Plus about 60 negitive surounding lymphnodes. I am already completely blind and disabled. I have very high blood sugar and blood presure and doctors say this wont effect my cancer treatment or vise versa. My doctor is also telling me that this cancer is 100% treatable and I will live another 20-30 years. He is sure of it, trust him.. Yet my oncoligist says it is 90% curible with treatment and only 40% without treatment. And the Chemo doctor says 70% cureable with treatment and 30% without.. All different answers and all talk about different side effects.. Side effects like not being able to eat again, to swallow, posible loss of hearing,posible saliva loss, posibly loss of bone and ability to walk etc..
So now I am more concerned with quality of life. Thinking about doing no treatment (Radiation/chemeo) and ejoying a posible shorter life while I can. Rather then do treatment and loosing other valuable senses. Doctors are pushing me to start treatment now and say that I cant wait but wont tell me why it is so urgent to start since the treatment will kill everything anyways. Ild rather have 2 good years of life then 10 miserable. I am already unhealthy, blind, have trouble with legs and walking.What more can I take and why risk all the posible side effects. They got everything in the surgery and I actually feel really good now 6 weeks later.

Welcome to OCF. It sure sounds like you have already been thru alot. Its hard to put your faith in doctors when you have not found them to always be upfront in the past.

Please understand none of us here at OCF are physicians. We do not come from a medical background or have years of training and schooling. We also do not have your entire medical chart to help understand your history including your current health status. That said, we can only give you our opinions as fellow patients and caregivers. Second guessing your physicians would only be speculating on your situation.

My suggestion would be to go to a major comprehensive cancer center (CCC) for the very least a second opinion. Maybe that would help to ease your mind.

The side effects your doctors told you about can happen. But will they all happen, probably not but it is a possibility that cant be predicted. Every patient is different and will have a slightly different experience. Without treatment Cancer probably will take your life. Many patients (myself included) go on to lead productive, happy lives after undergoing often brutal cancer treatments and side effects. Some wise friends once convinced me that before I just quit and packed it in, I had to at least give it a shot at being treated. Thankfully I listened as Im still here today 5 years later.

Here is a link that will give you a list of cancer centers. Find the very best medical care you can.

Best wishes!!!


NCI Cancer Centers

Thank you so much for taking the time to write that response. Very nice and helpful advice.

I would contact a CCC and get their opinion. I also wouldn't concentrate very much on the high % but the low without Tx because IMO I would give you a ZERO % chance of survival without Tx. I was a Stage IV, HPV+ SCC patient and I probably have 90% of my pre Tx taste and saliva. I do have some permanent high frequency hearing loss but I don't require hearing aids. My Thyroid was damaged and all I have to do is take a small pill once a day to compensate. That's all of my long term side effects. I know this is all new to you, very confusing and very scary but as long as your docs say do it, then listen to them and do it. We will be with you the entire time and trust me we will make your Tx and recovery as easy as possible.

Elizabeth,
I don't blame you for being frustrated with your doctors' flinging statics around. HPV related tonsil cancer is very curable, but the problem in your case is that a large number of lymph nodes were positive since it took so long for your diagnosis. Adding the chemo and radiation to the surgery will help take care of anything the surgeon missed. Your doctor is full of it with the 100% cure rate (but you knew that already), however your oncologist and chemo guy provided estimates that are really pretty closely aligned. The surgery did the heavy lifting, but the additional treatment will do the mopping up.

If you go for a second opinion (and I think you should), you should discuss your concerns about quality of life. If you go to a CCC as Christine suggests, they will be very much aware of the most recent results with HPV related cancers FOLLOWING SURGERY and should be able to recommend a reasonable plan.

Maria

Welcome to OCF. I am sorry to hear about your condition. You did not state the staging of your cancer but if it was in the nodes and tonsil and surgery has been done to remove what they found then that is a good start.

As stated earlier we are not doctors, some observers, most survivors or patients. From my time here it seems almost universal that your case would involve radiation and chemo to ensure the cancer is killed off.

But radiation and chemo bring the most side effects. With the type of cancer you have it is quite good chance you will survive through this all. But there are those who suffer long term side effects with varying levels of discomfort and pain.

Those with other conditions like you makes any sort of educated prediction that much more difficult. Ask the questions until you get a solid feeling of what the landscape ahead looks like for you then decide which path you will choose.

Best of luck,Don

Welcome to OCF Elisabeth. One of the observations to make about statistics is they are often from studies 5 or more years old. So a doctor saying someone in your condition with this treatment has an xyz% cure rate, is often basing it on old numbers, and the prognosis today might be much better than that.

Every cancer journey is different, and you have complications of your own that you have to work through with the doctors. I can understand your concern about the harshness of the treatment, it can be pretty brutal. Again with the caveat I'm not a doctor but we do know a few things about this cancer. It is very treatable, it responds very well to radiation and the prognosis is very very good compared to other cancers. Its aggressive, and thats why they would want to start treatment as soon as they can.

If you are considering leaving it untreated, have a very clear discussion with the oncologist and have a good understanding about what it means for your quality of life for your last 12 months.

I'm not an expert I just say this stuff from the heart Elisabeth. Your story is very close to home for me and I'm sure many here. Love and prayers from Australia for your journey and please let us know how you are going.

Welcome Elisabeth. I'm sorry for all your troubles, and understand your concern of further debilitation being I had, still have the same concerns. I'm blinded in one eye from chemo, was bascally paralyzed from the waist down, and coud not walk for over 10 months, hospitalized for 6 months, plus others I still have. The good thing was my initial treatment with 5 days of high dose chemo killed all my cancer in the tonsil and lymph nodes, but that does not last, as I found out in the 8th month, but apparently responds well.

My new oncologist would not do chemo for my 2nd recurrence. I only had radiation, bilaterally, because of a 3rd suspect node on the right side, plus bot, Vallecula initially lit up the PET, but not biopsy. They may be able to radiate on one side, spare salivary glands, even reduce dosage being its HPV positive?

For other later recurrences, I had 8, but had two treated in one shot, they would not do Cisplatin again. All my consultations said Erbitux, which was easier, and had Taxotere with that. The Taxotere was cut off midway due to neuropathy, but the erbitux was still doable. For my last treatment, I did Proton Therapy, and carboplatin. Proton therapy had lesser side effects than IMRT, and the carboplatin was the easiest of them all, for me, but everyone is different.

So there may be ways to still have radiation or Chemoradiation with less toxicity, which can be further discussed with your doctors, and if they thought you could not handle further treatment, it wouldn't be recommended.

Good luck with everything.

thank you so much. who is CCC?

Hi Elizabeth - Welcome to the family, though I'm sure you would just as soon not be a member. We weren't too thrilled to become members either, but it is what it is.

CCC stands for comprehensive cancer centers. There are about 20 in the United States and they are the best at what they do. They have the best doctors, the ones with the most experience. One of the earlier posts on this thread had a link to the list of CCC's in the U.S.

I know you already have a lot going on in the way of quality of life issues. I would be lying if I said oral cancer treatment was easy; it isn't. For some it's harder than others. My treatment was actually pretty easy, but everyone's isn't. This cancer is very survivable; it's worth the inconvenience and discomfort of treatment and recovery that you will face.

Good luck with all this, we will be here for you every step of the way.

Tony

The term "Comprehensive Cancer Center" can be attached to any oncology practice but it is better used to describe levels of certification by one of two bodies, The National Comprehensive Cancer Network or the National Cancer Institute.

The National Comprehensive Cancer Network� (NCCN�), a not-for-profit alliance of 25 of the world's leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.

NCI-designated cancer centers are institutions dedicated to research in the development of more effective approaches to prevention, diagnosis, and treatment of cancer. There are three types: Cancer Centers, Comprehensive Cancer Centers, and Basic Laboratory Centers. Cancer Centers must demonstrate scientific leadership, resources, and capabilities in some combination of laboratory, clinical, or population science. Comprehensive Cancer Centers must demonstrate reasonable depth and breadth of research in each of three major areas: laboratory, clinical, and population-based research, as well as substantial transdisciplinary research that bridges these scientific areas. Basic Laboratory Cancer Centers conduct only laboratory research and do not provide patient treatment. There is a total of 68 NCI-designated Cancer centers; 20 Cancer Centers, 41 Comprehensive Cancer Centers, and 7 Basic Laboratory Cancer Centers.

I believe you have enough input from members here for your questions....

good luck with everything...