I am new to this forum but can already see some wonderful and very supportive people that are here. I have just found out this week that my sister's tongue cancer has returned. She was treated with surgery only 3 years ago. I became her caretaker following the surgery to allow her husband, who was self empolyed, to return to work since they did not have insurance. They had cancelled their insurance only a couple of months prior to the diagnosis. Fortunately this time they do have insurace. But aside from this, I am terribly scared because just 5 years ago we lost our brother very unexpectantly in his sleep. He died of a seizure. My sister is schedule for surgery again next week on the left lateral side of her tongue which is where it occured before. I suppose that there should be a question in there but I am mainly terrified. Any thoughts would be appreciated....thank you.

I'm so sorry to hear of the recurrence of your sister's tongue cancer. I hope the surgery goes well for her next week. Did she have radiation last time? Do they have it as an option this time? Let us know how things turn out.

Andrea

Thank you Andrea. They did not use radiation last time. They felt that all went well with the surgery and my understanding was that wanted to keep it as an option in case of a reoccurrence. Is this the traditional course of therapy or do you know?

Suzanne

Suzanne,

As you read more about people's experiences around here, it becomes clear that sometimes it's hard to say what a "traditional" course of treatment. It's not unusual if your sister had stage I or stage II cancer (and especially stage I) to have it treated with surgery alone the first time.

But since it has recurred, she should definitely be in line for radiation and quite possibly chemo as well. Also, if she is not being treated at a CCC, she should go to one. If not ebfore the surgery then following it for an opinion about what other treatment she should have.

I wish her the best--she's lucky to have a supportive sibling like you to help her through this--and it's lucky you're close enough that you are able to.

Nelie

Hi Suzanne,

Sorry to hear of your sister's recurrence. As Nelie said, there really is no "traditional" treatment. I too, had left lateral border scc and only had surgery. I am, however, one of the few on the board that followed that protocol.

This decision was made based upon there being 30 clear nodes in my neck on that side and the size of the cancer when biopsied. You don't mention if your sister had any lymph nodes removed or the staging of the cancer. These are usually considerations in making a decision about radiation.

Good luck and my prayers are with you, your sister and the rest of your family.

Jerry

Suzanne:
You will find this forum both informative and supportive.
We will always be here for you.
Yes, I would guess that radiation therapy and possibly Chemotherapy is in order after the surgery. But I am not a physician.
I could not help but notice that you chosen alias is southernlynx.
I went to a small liberal arts college (Rhodes)(Memphis), our mascot was a lynx. You would'nt happen to be a lynxcat of that gender?
Darrell

It was isolated to only the tongue 3 years ago. I hope that we can say the same this time as well. She is 42 and has 2 young children. My brother died five years ago from a seizure when he was only 38. I am very scared this time but know I have to show a very positive face.

Sorry Darrell....the "lynx" from southernlynx is just the user name I have been using for awhile. It actually was a take from a local golf course (Southern Links) and the fact that I am a Leo...a cat hence the lynx.

I do appreciate all the advice that has been given or any more to follow. I also recognize that each treatment is very individualized based upon each case. I have an illness as well that also requires it's treatment plan to be very individual.

Suzanne,

Given your sister's history of tongue cancer, I hope the course of treatment in this case is not being determined by a single surgeon. There are plenty of people on this site who can attest to the need for an aggressive attack on this disease, as early as possible. Where she's now dealing with a recurrence at a relatively young age, it can be extremely important to get a consensus from radiation, chemo and surgical points of view at a major cancer center.

Cathy

Sorry to hear about your sister's condition. I agree that she should get at least two opinions about how to treat this. The ENTs are surgeons and they often offer surgical solutions. The oncologists are the chemists and they think in chemo terms, etc. Get more than one opinion. Talk to a doc outside of ENT discipline. Get a 'team' of docs and docs from different disciplines.

Ask every one of them: "What are ALL the options for treatment?" Get them to talk to you about the relative pros and cons of all the different treatment plans - and there are many. If the doc you ask doesn't seem to know much about options other than what s/he is offereing you, find another doc. You don't have to become a doctor to make sense of it either. You will begin to hear some ideas and options from more than one doc. Certain things will make more sense than others. Confidence in the doc you choose is really important.

This type of cancer is not common, so find people who have treated THIS particular cancer before (and more than once!) Question everything and keep all your treatment team accountable. The good ones have no problem with that. Keep us informed. Be strong. Tom