Hello,

First of all I thank you all for being here and to my friend Jim, a bottom of tongue squamous cell carcinoma cancer survivor. Jim said his wife found a lot of useful information shared by patients on your forum.

My name is Roger and I�m 67 years old, self-employed from Santa Cruz, CA.

Monday, July 14 I was diagnosed with squamous cell carcinoma cancer on the base of my tongue and bilateral lymph node cancer with the right lymph node more prominent. The week before I was called in to the ENT doctor because an order CT scan prompted him to take biopsies of the suspected bottom of tongue and lymph node tumors. The ENT doctor said it was Stage 3, T2N1MX and that the biopsies indicated �p16 positive�. He said patients with p16 positive markers do really well with the radiation and chemo treatment. On Tuesday (July 16) I went to the radiation oncologist and appointment has been set for me to get a Petscan and a simulation on Tuesday July 20. While at the radiation oncologists office I had some questions as to why they did not have surgery as on of their treatments (as I had noticed robotic surgery on the Stanford Medical website) and the doctor showed me a website that had all types of cancers, along with the Standard for Treatment. This tree diagram did not call for surgery. Then, on Thursday (July 18) I went to the medical oncologist (my friend Jim accompanied me) and he summarized that the base of tongue was the primary cancer and that it had spread to the lymph nodes. He also said the Petscan would tell us if the cancer has metastasized to other parts of the body and would make the stage of cancer definitive.

Stanford University has a Tumor board that meets every Thursday, and it was agreed upon that I would be referred there if they could see me soon. I have not heard back from the doctors on that yet.

Yesterday, I spent some time studying the Anderson MD website regarding their Proton radiation therapy. I intend to call them tomorrow morning. I have two friends who have survived their cancers: one was base of tongue and the other was tonsil cancer. At my friend�s recommendation I read your founder�s story. The common thread in each of those descriptions of the therapies is that the therapy side effects are hellish and that they could not have done it without their wives.

At this point, I�m very seriously considering going to Houston for the Proton radiation (and whatever else they deem appropriate) which I understand is around 8 weeks. Can anyone give me insight as to their experience with Proton radiation therapy. Can I do this therapy without a family support person? It�s possible that significant other who lives in New Orleans can get off work to be there, but that is not certain. Does Anderson have a living facility to accommodate persons without a family support person?

Thank you for reading this. Any thoughts or suggestions would be appreciated. Thanks again, Roger.

Welcome to OCF, Roger! Thanks to Jim you have found a great source for info and support to get you thru the next few months.

You are talking about 2 top notch comprehensive care centers (CCC's). This is the best places to go for treatment. Not many here have done the proton therapy but a couple have. Most of us have had IMRT.

I think there is a Hope Lodge next MD Anderson. There are several members who are from that area so hopefully one of them will confirm this. From what Ive heard about these facilities, the patient needs a caregiver with them. Oral cancer treatments are not easy for most of us, unless you are one of the very few lucky ones who sail right thru you will need help and want someone with you.

Yes, you are correct... the after effects can be terrible and long lasting, some are permanent. But, its so much better to be alive to complain about issues than the alternative. One common link Ive noticed over the years is that the better a patient does with their intake, the easier of a time they have of everything. Beginning right now start taking in a minimum of 2500 calories and 48-64 oz of water every single day. Keep that up until (at the very least) you hit your one year post rads anniversary and you will fare better than most. Also start eating all your favorite foods now as your sense of taste and ability to eat will change for several months making eating a challenge. Most OC patients have lost significant weight which is NOT good at all. It mean they are malnourished and this in turn makes them struggle thru treatments and recovery.

Begin making a list of everyone who offers their assistance. Take down their name and number. tell them when the time comes you will let them know what they can do to help. This could be important later.

Get a thorough dental exam and flouride trays made. Have a complete blood work up including thyroid and testosterone. Both things have a habit of being affected by radiation.

Find things to do to keep your mind occupied. Reading a book, watching movies, or anything that takes concentration will help keep your mind off worrying and make waiting easier.

We are here to help both you and your caregiver. When the going gets tough its ok to lean on us. We have been there and done that and speak from experience.

Best wishes!

Hello ChristineB, thank you for your kind reply and suggestions. Its been a lot to take in and absorb in a short period of time. I totally agree with life alternative. When the radiation oncologist told me that they would make me miserable, I thought to myself, I can do miserable if it means Life.
Thanks again, Roger

Roger you sound very well informed and it sounds like you're in the best of hands. As it was explained to me they keep the surgery in reserve for this type of cancer, mainly because it responds so well to radiation. Also the surgery on advanced tumours tends to impact certain structures in the throat causing ongoing problems swallowing etc.

You've had your first warning from Christine about the 2500 calorie minimum, it won't be the last time you see that. It is so important to the recovery. Start eating well now, especially proteins.

Every cancer journey is slightly different and some people struggle more with some areas more than others. You have a lot of information to absorb, a lot of questions. Keep any information you receive from the internet (including here) in perspective, and don't worry unduly until you've had a chance to ask your doctors about how it relates to your particular case.

Every journey is different but most likely we've been over many of the same bumps. Be sure to pop in and let us know how you are going.

Unfortunately I welcome you to this terrific site.

Yes do investigate alternatives but stick with those offered by CCC's. Paul is our resident Proton Therapy or IMPT expert and I'm sure you will hear from him. I'm not sure if it's applicable to your Dx but do listen to what MDA says.

Do get a dental exam by a dentist that regularily does pre oral cancer treatment exams.

Do get the fluoride trays and start using them asap.

Do get blood draws for TSH pre Tx.

I assume they will also recommend Cisplatin and I would get a pre Tx hearing test to establish a baseline.

Do start eating all your favorite foods and start adding pounds.

Do keep us posted.

Hello Roger - welcome to the family. We have a lot of people with first hand experience here in most any aspect of diagnosis or treatment that you can face. They will give you straight, honest answers to your questions and problems without trying to sell you anything like so many of the other websites do.

You will hear the nutrition and hydration mantra over and over while here; that's because it is so important. I ate pretty good over my treatment phase, but still lost 42 lbs overall. It's easy to lose too much weight during treatment and even post treatment. Sadly, you will likely lose your taste for food, or worse yet, food will taste bad. As you already know if something tastes bad you spit it out. If everything tastes bad you can easily get no nutrition or not enough nutrition, and significant weight loss is the result. I personally had days where I lost one pound plus in 24 hours. And it's not all fat loss, lean muscle loss comes into play pretty soon in treatment if you don't eat. I now have plenty of lose skin on both my legs and belly. It doesn't hang, but I can grab a handful of it easily.

Additionally, treatment can cause the mouth and throat to be sore, really sore. That just makes it that much harder to eat. Between bad tasting food and a really sore throat you can become mal-nourished quickly. If you reach that state they put you in the hospital with intravenous feeding. Worst thing of all radiation treatment stops while you are in the hospital, so your cancer can start growing again.

Cancer and it's treatment are calorie hogs; we use the term hyper-metabolic to describe it; your cancer eats about 1/3 of the calories you ingest, your treatment eats about 1/3, that means your body gets the other 1/3 for all it's metabolic functions. Talk about a pregnant woman needing to eat for two, well you need to eat for three.

I hope I have your attention. Now you know why nutrition and hydration are so important. Eat now, before the throat hurts, before you lose taste. Eat like a pig, eat everything, including dessert, at every meal. Try to put on weight. I promise you will lose it later, without even trying.

Stick with us, we will get you through this. Many have come before you and done well, you will too, but there will be rough patches along the way.

Tony

Welcome Roger,

I concur with what everyone has said, and would like to add to have a baseline eye test. I lost my vision from chemo, coincidently I have an appointment with my Opthomologist today. Reading through your post I noted bilateral involvement, which is not that usual, but can occurr in BOT, and the staging to be T2N1MX, which is one node, which is good, but they may still treat both sides bilaterally with radiation. The same happened to me. p16, a tumor suppressor gene, is also good, in cases of HPV involvement, otherwise it's a negative prognostic factor. They should follow-up with HPV testing, although p16 positivity is a good indication of HPV involved, but not always.

Different hospitals have different treatment modalities. Chemoradiation was used, still is, in organ preservation in the oropharynx, larynx, and other areas, but transoral (TORS) and laser microsurgery is being used with good outcome, along with neck dissection, possibly radiation and or Chemoradiation. The same with some using induction chemo, and Chemoradiation withradiation at reduced dosage, ipsilateral. Options are good, and seeking out several consultations is
also.

As far as MDAnderson, Proton Therapy, there is no HopeLodge, yet, in Houston. It will open in 2015. I heard, and like many they may offer their own housing. Hope lodge has about 26 other locations throughout the country, and you can stay alone as long as you have a doctors note that you can care for yourself. Other proton therapy centers offers grabs from $400-$14,000 for lodging, transportation, etc. I stayed at Hope Lodge in NYC for 6 weeks, and at another date had Proton Treatment at ProCure, in NJ. Both are amazing facilities.

Most I know had Proton Therapy for a recurrence in the head and neck. It's very precise, so I don't know if it's applicable for large areas to be treated. My two radiated locations took 30-45 minutes, most of it set up time, changing locations, apperatures, brass snouts, so I can imagine doing how long it would take compared to IMRT. MDAnderson has IMPT, the only one in the U.S., Intensity Modulated Proton Therapy, with Pencil Beam technology. It's the same protons, but can conform the proton beams to the tumor, so there is no need to change positions, apperatures, no brass snouts to conform radiation to the tumor, the computer does it all with magnets.

I hope this helps. If you have any other questions, ask.

Welcome Roger.

Sounds like you are up and running and gobbling up the knowledge to be an informed patient. You have chosen excellent facilities so you are in great hands. You have many great places without having to travel very far. Standford is just over the hill as is UCSF a few miles more. A short hop to LA gets you UCLA.

Proton is also available in socal. In fact the first facility offering it is in Loma Linda (something like that).

My advise is to keep reading up and be aware of the various options. It sounds like you may have seen the NCCN Standard of Care document. That is what the majority of doctors follow unless there are special circumstances.

Remember the collective professional experience at tumor board is surely 100+ years so the very best any of us can expect is to barely be able to understand the most basic principles of cancer diagnosis and treatment.

Ask your questions but do your very best to absorb what is being said and recommended. They are the experts and select and recommend different treatments based on your unique situation.

Good luck