Hello everyone,

This is my first post, and I have only found the forum today. I have read some of the basics, but have not looked around much, which I will do in time.
I am a 35-year old female, and was diagnosed last week with SCC in my left tonsil. It is T2, and the N stage is not certain. Original radiologist's report shows no definite lymph node involvement, so for now the doctors are labeling it as N0, but another radiologist thinks that it has spread to the nearest lymph node. This is all based on PET/CT and classic CT with contrast. The team of oncologists I have seen a couple of days ago warned me that it even might be N2 or such. The cancer is also HPV+.
I am scheduled to have a surgery next week - they are doing TORS and selective neck dissection. Once the full biopsy results are in we will know the N stage for sure.
I guess I am not asking anything specific at the moment, just introducing myself. I don't think I have quite recovered from the shock and am absolutely terrified. I am foreigner, all alone here in the USA (no family, no significant other). I am very lucky to have some close friends which will be helping me throughout this, and an understanding and supporting boss at work.
Thank for reading this.

Hi Ambra - So glad you found this place to be! There are lots of people here who will give you some really knowledgeable and compassionate help to get you through your treatment. With the HPV type, there is much better expectation for recovery and as well as with the TORS or robotic surgery. Be sure and check out the main pages and use the search options - upper right, this page or on the main pages of the Oral Cancer Foundation. It will help you to think of questions you might have for your doctors or for anyone here with more direct experience similar to yours than I have. I was caregiver to my son with SCC and he is doing just fine, now 7+ years later! It's good that you have supportive friends and an understanding boss. You will get through this! The waiting part is the worst, so try to keep busy and check back here often to let us know how you are doing or let us know any questions you might have.

Welcome, Ambra. I can understand the initial shock and fear, especially being from another country with no family, and all the uncertainties. Many have walked these same steps, and doubt few were not similar, so ask away. I had tonsil cancer initially in 2009, with two metastases, which is not uncommon with HPV oropharyngeal cancer with a low T size. My samples were not tested for HPV at that time, but assume were HPV, and as Anne-Marie mentioned has better response and prognosis than being HPV negative.

A lot is unknown until the the biopsy results, pathology, as far as the next step. Not saying the doctors are wrong, but wondering how your cancer was confirmed being a biopsy is the only way to confirm it?

A doctor told me once, you can have the best docors, treatment in the world, but what matters equally important is the support, and after care one gets, and seems like you have supportive friends, and boss.

Good luck with everything.

Welcome to OCF! You have found the very best place to get correct up to date medical info and support.

You will need help to get thru this. Everyone who offers to help you, tell them that when the time comes you will let them know what they can do. Write down every single person (weather they are a close friend or not) and their contact info. I would then suggest taking your closest friend and first making sure they are up to it, then making them your contact person. They can be the one person you go to and let them pass things about you to others. Call the American Cancer Society, ask for help with a volunteer driver and if you need it they also can help with pharmacy or travel costs ($300 max). It takes time to get this set up so do not delay with calling, they are available 24/7 so call anytime.

Next thing to do to get ready is to eat. If you are slim, try your best to gain a few pounds. Oral cancer and its treatments can alter your sense of taste and ability to swallow. For most patients its temporary but it could be a few months before you can eat like you do currently, so eat now. You dont want to have cravings so enjoy everything now.

You should visit the dentist and have any questionable teeth pulled or fixed. Get flouride trays made and begin using them. this takes weeks so do not delay.

Get your hearing checked and a full blood count including thyroid levels.

If you have not selected your treatment center now is the time to do so and get a second opinion. I can provide the list of comprehensive cancer centers if you need it.

Stick with us and we will get you thru this. Best wishes!!!

Welcome Ambra. We are both in our 30's which is something I don't see a lot of on here, my cancer also started in the tonsil area and was HPV+. You will find loads of good info and suggestions on here. Anything you can't find feel free to ask away, there are lots of helpful and friendly people here who have been down this road before you. Its not easy but it is doable, we will all be here for you helping you through.

Hi welcome!!!!

Thank you very much for your support everyone.

PaulB, the cancer was detected/confirmed with a regular biopsy from the affected tonsil. The new biopsies I was talking about will be the done from the dissected lymph nodes, as the PET/CT has radiologists confused when it comes to the lymph nodes status. That will also determine what the oncologists will want to do after the surgery - very small option (20%) of nothing if no cancer cells are detected which I am hoping for with all of my heart, or radiation or chemo-radition.

ChristineB, my friends are great - they have already organized themselves for the 2 week post op recovery period- they are on a email list, made a schedule of who gets to some make me company when etc. so that I am never alone. I can not find words for how grateful I am.

Food&eating - this will be a huge issue for me I am very afraid of. I am very slim - 5'6" and 110 lb, which I have been for the past 20 years. I naturally do not eat much, loose weight very easily and it is not easy to gain it back. Whenever I am very stressed my I tend not to be able to eat much, which of course has been hapenning for the past two weeks. I also get dehydrated very easily - in the past 10 years I have ended up in the hospital about 4 times because of severe dehydration caused by simplest stomach bugs, they would usually keep me on continuous IVs for at least 48h. My surgery is scheduled for Thursday so there is really not much I can do about my weight in three days.

I would like to use this opportunity to ask for advice regarding diet after the tonsillectomy (via TORS) as I wasn't able to obtain clear and precise information. I have read the basics about ice chips, liquids and soft food, and know that I should stay away from acidic stuff such as orange juice. I have found disagreements of whether dairy should be avoided or not. How about Ensure - should I start with it already, and if yes, then regular or clear kind? And there was some talk of "magic" numbing mouth wash, what is that exactly? I am hoping to stalk my fridge with the appropriate stuff in the next couple of days.

I have already visited the dentist, and basically I need to get my three wisdom teeth out and one old root canal redone. There is no time to do it now, and my surgeon did not want me to do anything before the surgery, so that will have to wait till afterwards. I will also have to find a new dentist as I am quite unhappy with the way my current one has treated me.

I am having lots of pre-op stuff done done tomorrow, including blood work, chest X rays etc. The thyroid has already been assessed as a nodule was discovered on it last year which turned out to be benign after the biopsy results. However, it did show very big FDG uptake on the PET last week so it might need to be reassessed. I am trying really hard not to think about that one right now.

My treatment center is in John Hopkins and I have already obtained second opinion which did not differ from the original one. Everybody agreed that I am ideal candidate for TORS. They even want to put a picture of my cancer in the revised edition of their textbook as a textbook candidate, urgh.

Rosymonroe, it is comforting to know that there are other people in their thirties dealing with this as I have been feeling like a freak. Although I am aware that HPV+ SCC reacts better to treatment, it has been and it still is extremely difficult for me emotionally to deal with the virus as the cause. I will be writing about it more on some future threads, but for now I will just say that I have had Gardasil as soon as it became available on the market and was in a 6-year long monogamous relationship with my first boyfriend at the time. The odds are really dumbfounding. Sigh...

Thanks again everyone, will be checking this out again tomorrow.

Ambra,

Things are moving at a fast and furious pace. I just wanted to comfort you that your choice of JH is assuring as it is very well established in treatment of cancers.

They do use an integrated team approach and have a tumor board to gather input from many doctors. You are in good hands and it seems you have great friends ready to help you during recovery.

"T" will likely chime in as he had surgery at JH not that long ago.

don

Ambra - you asked about the "Magic Mouthwash" - Everyone is different of course but some have a rougher time than others during the Radiation Tx when mouth sores tend to develop and the doctor may prescribe the Magic Mouthwash to help numb the inside of the mouth so that you can eat more comfortably. My son used it off and on and there was also an over-the-counter type that he got at the drugstore that also helped. But whatever goes into your body should always be checked out with your doctor first - even vitamins - as it can affect your treatment. Do try to eat as much as you can now, all your favorite foods - it can really make a difference later in how you feel. I know what you mean about stress affecting your appetite. I was like that at your age, so try to keep busy with other things, to get your mind off all the negative stuff. Maybe you could eat while doing something else like watching TV or lunch with friends or seeing a movie. There are some high calorie drinks that can help, too. You will do great and you will be ok!

Hi Ambra,

Welcome to the club no one wants to be in. I had a selective neck dissection and TORS at Johns Hopkins prior to starting treatment but we never found the primary. I ended up getting 6 weeks rads and chemo. NED as of 8-6.

You'll be Ok. While it wasn't a walk in the park, the surgery isn't that bad and you'll have pain meds. Once they have an idea of what they're up against they'll plan treatment.

Positive thoughts and prayers.

"T"