Hello all,

What a wonderful community.

My Father was diagnosed today with SCC. My lingo may be a bit off, but here is what I know:

He has a relatively small lesion on the base of his tongue, about the size of the end of one

BOT cancer, in the opinion of this non doctor, should be approached with radiation and concurrent chemo before any surgical considerations are in play. A surgical solution to this location can leave him with significant quality of life issues for the duration. Please see that he explores this with a radiation oncologist before moving forward in any other direction.

Welcome to the board, and a group of people I am sure will take good care of your concerns and issues as you and your father move through the treatment process.

When my husband was diagnosed with a base of tongue/tonsil cancer and spread to two lymph nodes, we went to two of the top CCC for consultation -- Johns Hopkins and Memorial Sloan-Kettering. Neither one would have considered starting with surgery, for precisely the reasons Brian gives. The Hopkins surgeon said -- "surgery to the base of tongue will leave you with significant swallowing and speech issues." The oncologist at Sloan said the same thing, and added, "we are getting such good results with concurrent radiation and chemotherapy that we do not do surgery at all in the vast majority of our cases."

My husband ended up being treated at Hopkins -- 33 radiation treatments and 7 weekly infusions of carboplatin and o subsequent surgery. In any case, although this is a very rigorous treatment and in no way a "walk in the park" he made it through quite well and his initial post-treatment exams have found no cancer. Of course we are monitoring everything carefully and keeping all fingers and toes crossed.

Brian as usual gives excellent advice -- please make sure you consult, if possible, at a comprehensive cancer center (CCC) and get a radiation and medical oncologist involved in your Dad's treatment planning. Take time to get educated and do not be afraid to ask the hard questions --

Best luck,
Gail

Thank you Brian and Gail,

The only way I know to deal with this is to educate myself as quickly as possible.

I want to be able to provide as much support as I can, without getting in the way.

From what I have gathered so far, we should be seeking a major cancer center rather than depending on our local doctors.

Any and all comments, suggestions, warnings, etc. from those of you with experience are greatly appreciated.

Dear Gloveman,in my humble[but with 12 months experience under my belt as a caregiver] I think a caregiver's role is to GET IN THE WAY unless told not to by the patient! There is so much to absorb and sort through after diagnosis.In our experience, we were swamped with information-alot of which we didn't understand and were asked to make decisions very quickly. Go with your Dad to every appointment if you can and take written questions with you, then take notes so that you can digest them [and research or post questions here]later. How old is your Dad? Are you going to be his primary support or are there other family members available? Amy

Thank you for replying Amy,

I am going to ask to be the note taker on each appointment, but my Father and Stepmother may find that too intrusive. I have learned that, even at this early stage, one person listening and one person taking notes can be very valuable.

My Stepmother will by the primary caretaker, with many family members in a supporting role. We will be available to provide whatever support is necessary.

My Father is 62 and prior to this, active and in excellent health.

Dear GM, my husband was 63 when he was diagnosed. Just what we think of as the prime of life. It's so tough. If you and your stepmom have a good relationship, then please share with her that everyone on this site would encourage her to have you along at every opportunity[as a 3rd set of ears]. She will need all the help she can get,to absorb all the information unless she has a medical background. Good communication and understanding the issues here is vital. Amy

I totally agree with Brian. Radiation coupled with Chemotherapy is the treatment of choice. The odds are on your side and you lose less quality of life. However, radiated tissue is radiated tissue. Post treatment surgery becomes extremely difficult, but recurrences are rare.
Stage 4 would be a pretty large tumor but it can be KILLED with radiation/chemo. Lymph node involvement is a throw of the dice.
Darrell

Update and questions.

We just returned from the Doctor who had the final pathology from the biopsy taken Tuesday. The final diagnosis is Poorly Differentiated Spindle Cell Carcinoma with a BOT Primary. T2N2bM0 to be exact.

Treatment recommendation: Removal of lesion through the side of the throat and a left side neck dissection followed by concurrent radiation and chemotherapy.

They want to put a tracheotomy and PEG in as well.

We are seeking a second opinion from MD Anderson as this recommendation is coming from our local ENT Cancer specialist. He is highly qualified and competent, but something this serious needs a second look.

What is the difference is between poorly differentiated and well differentiated?

Does anyone on the board have any words of wisdom to help me at this stage?

Any input is appreciated.

Thanks,

Scott

Hi,

according to the literature. In cancer, the term "differentiation" refers to how mature the cancer cells are in the tumour which also refers to the way they developed. Differentiated cells resemble to normal cells but then they grow and spread at another rate then undifferentiated or poorly diffrentiated tunour cells. The poorly differentiated cells lack structure and function and subsequently grow uncontrollably. There are 3 ways of indicating it, well differentiated, moderatly differentiated and poorly differentiated. Consequently, the first being the optimal one.

Having said all this with cancer and its prognosis especially with this kind of cancer they are many other factors to consider. Differentiation is only one of many!!!

Hope this helps and think positive,

Marie-Lyne