Hi everyone, MERRY CHRISTMAS!
My husband was diagnosed with squamous cell carcinoma of the base of the tongue on Dec. 1, 2006. He began his treatment on Dec. 18. Chemo 1x per week for 7 weeks and Radiation 5 x per week for 7 weeks. I am overwhelmed by his diagnosis. He is young (42) and very healthy. Has never smoked or used any tobacco products. He has never even been sick! I am so scared for him as well as our sons, ages 16,14 and 12. Anyway, I'm new here and I just wanted to say HI and thanks for being here for me. I think I will need your support. Amy

Amy,

Welcome to the OCF forum. I'm sorry you have to be here -- especially to be in the position of joining on Christmas Day -- but you'll find a lot of support and help here. There are many of us who also ended up with SCC at a fairly early age without ever smoking, so we have a good sense of what you're feeling right now.

Take advantage of the wealth of information you can find about oral cancer on this site. It will help you gather questions you want to ask of your husband's medical team as you go along. It will also give you lots of good ideas about getting through the toughest parts of treatment. Feel free to post here as often as you need to get advice from others or just to vent.

Cathy

Amy
Sounds like they have caught it very early.
This is a roller coster ride for all family members. You and your family will have lots of support here. Great information. Keep your family informed of what Dad is going threw.
We have 12 and 15 year old boys. 4 years ago my wife had breast cancer, surgery and recovery I was worried for them then. Then I got this great Cancer. The kids will do well if they are informed of what is happening. Let them vent as well. Good luck and our prayers and thoughts are with you.

Amy --

Perhaps not the merriest Christmas for you guys but hang in there, and think of Christmasses to come.

Your son sounds like he could be one of the so-called "new demographic" for head and neck cancer, younger, non-smoker, cancer presenting in tonsil and/or base of tongue -- and most of these seem to be due to the human papilloma virus (HPV) (the same virus that causes almost all cervical cancer). If your cancer center has not already suggested it, you probably should get his tumor tested for this. It will not change his initial treatment but it improves his prognosis (HPV cancers seem more sensitive to chemoradiation) and also, there is far less chance of recurrence -- less than 15% per Dr. Maura Gillison (Johns Hopkins) one of the major researchers on HPV SCC.

If your center does not do HPV tests, a tumor sample or even the pathology slides can be sent to Johns Hopkins for testing:
http://pathology.jhu.edu/labservices/hpv.cfm

Amazingly, despite quite a few papers in the last 5-6 years, a lot of doctors are unaware of this aspect of HNC. Dr. Gillison recently had a paper published on this "changing demographic" (You can also search this forum and the OCF web site itself for more info).

Not all non-smokers have an HPV cancer, but it probably factors in a majority of such cases, There are other causative factors, however, including certain pollutants, other viruses, genetics etc.

I know my husband was pleased to hear that his Stage III/IV cancer was HPV+, it made him more optimistic and that in turn made him stronger in getting through the rigorous treatment period. We just celebrated his second Christmas since he was treated, he is essentially back to normal and we are back to all our normal activities -- off birdwatching in Panama in a week, for example!

So hang in there and be strong for your son -- this Forum wlll be a big support in weeks and months to come.

Best of luck, Gail

Amy,

Sorry for your news but this site and it's participants will be very helpful to you and your family.

I also was a non smoker, social drinker, exercise nut and never sick a day in my life. That doesn't seem to matter to this cancer. What does matter is that he completes the Tx and you and your family give him the support that he will need. You also may/will need support as his caregiver which can be found on this site as well.

It is always helpful for us to know as much as possible about his Dx and his Tx. For example what type(s) of chemo; what type of radiation; what stage; where is he being Tx? That way people with perhaps the exact Dx and Tx can address your questions. You can add these particulars below your signature so that every time you post a question, readers will be able to see a much bigger picture and respond accordingly. It will also be helpful to interact with patients, caregivers and survivors at many different stages of Tx and post Tx periods.

Learn as much as you can and feel free to ask any question as in ANY QUESTION.

Amy - My son was also a non-smoker and only occasional drinker and diagnosed with SCC . He had his last radiation treatment on 12/21/06. This site has been such a tremendous support to us and I know it will be to you, too. You have definitely come to the right place! My son's doctor told us that they are seeing more and more younger people with this type of cancer and he also mentioned the HPV connection. Gail - your post about the prognosis for HPV type cancers was so encouraging to me as well. I'm going to find out about the HPV testing at our hospital.

Thank you everyone for your replies. Since we live in Maryland, we are fortunate to have Johns Hopkins Doctors on our team and they did tell us that this cancer is quite possibly related to the HPV virus. My husband got his
peg tube yesterday and had his second round of chemo today. He is receiving radiation 5x per week and chemo: Taxol and Carboplatin 1x per week for 8 weeks. His is a high grade stage IV tumor.

Hi everyone,
I was hoping to get some insight into the surgery to remove lymph nodes in the neck. My husband's ENT seems to think it will definitely be necessary and would like to shoot for late March/early April. The radiation oncologist told us yesterday that it may not be necessary if the lymph nodes continue to shrink. What can we expect from the surgery? How bad is it?

Hi Amy,

Sorry that you and Bob are going through all of this. I wish you luck.

As far as the neck dissection is concerned, it really was not a big deal in my case. Compared to the tongue surgery, it was a piece of cake. There was no real pain in that area during the healing, but there were a lot of stitches for about a week. A common problem after neck dissections is lymphedema. This is swelling from the build-up of lymph fluid in the area of the surgery, as there are not as many nodes available to move the fluids away. A good massage or physical therapist can help a great deal if this occurs. This doesn't happen to everyone and the occurence may be related to the number of nodes removed and therefore, the number still left in.

My scar is well hidden in the creases of my neck and is therefore almost invisible. I had an excellent surgeon and despite his expertise, as expected, I am still numb in the area of the incision. This is really no big deal and is certainly a small price to pay for the advantage gained from the removal of the nodes.

Please keep us posted as to Bob's progress and I hope my post has been helpful. Please don't hesitate to keep asking questions.

Jerry

Amy,

I had surgery first (partial glossectomy and modified neck dissection), followed by radiation. The neck dissection included the removal of many lymph nodes and, for me, was probably the least difficult part of the entire course of treatment. Most people here who have had surgery and radiation will tell you that their surgery was much easier to take than radiation. I do remember that my appearance shortly after surgery was pretty scary to some of my family members, but I'm sure I looked worse than I felt most of the time, and the incisions healed rather quickly.

Cathy