Hi,

I'm new at this, so I hope I'm proceeding in the correct fashion.

I'm the supporter of a loved-one with cancer. A year ago my 49-year-old sister-in-law was diagnosed with stage 4 base tongue cancer. She had radical 18-hour surgery to remove her tongue and to have a free flap attached. Unfortunately the first free flap didn't take, and she underwent two more surgeries until the third-attempt finally took. She was in the hospital for 25 long days.

She and my mother-in-law moved in with my husband and me, to ensure she didn't need to worry about anything except getting better. In December of 2009, after 60-days of RT and 3-rounds of intensive chemo, we got the "congratulations you beat it" statement from a relatively small-town (but patient-loved) Oncologist.

On Monday, much to our dismay, we were told her cancer was back, just three short months after her original treatment ended. We're being told it's more aggressive than her original cancer, and that the Oncologist was surprised it came back so fast and so aggressive.

This re-occurrence is "resting" on her jugular and they're worried it will compromise the main artery and she'll bleed-to-death. We've been told surgery is not an option as she had radiation, and I get the feeling the Dr's are at a loss on how to proceed.

Naturally I now want her to now go to the best doctors in the north-east, perhaps ones that are well-versed in her type of cancer. With that being said, I'm only a supporter; and for the time-being, she is content with her current medical team. It's difficult as I know she's slipping away from us. I just want to scream THIS IS YOUR LIFE! DO ANYTHING TO SAVE IT! But I know I can't say that. And she�s been through a lot over the last year. I just smile, hug and kiss her, and tell her that I love her every day.

Thus I've turned to this forum for support, and as a way to voice my frustration and fears...

Thank you for having me,

Tracey

Hi, Tracey --

Given that the cancer has returned quickly, and in a difficult place, she will have the best chance at beating this if she is seen at a comprehensive cancer center, or CCC. Probably the one closest to you is the head and neck clinic at Dana Farber in Boston, and several people who post here have been treated there.

If you type Dana Farber in the search box in the upper right corner of each forum page, any post with that term will show up -- then you can contact the poster for additional information (click on the poster's name to view his/her profile, which will give you e-mail or private message information).

The quote below was posted by a relatively new OCFer after her husband was diagnosed with OC by an ENT. Since she lives in New York City, several people here encouraged her to get a second opinion at Memorial Sloan Kettering, one of the top cancer centers in the country. She posted this in mid-February after making an appointment there:

[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]
You say you believe that your sister-in-law's doctors are at a loss as to how to proceed. The staff at Dana Farber (or Sloan Kettering or Johns Hopkins, to name two other leading cancer centers on the East Coast) have seen thousands of cases of oral cancer and should have a much better idea what the next steps should be. I hope that you can, at the least, persuade your sister-in-law to get a second opinion about her treatment from one of these centers. She is not being "disloyal" to her current doctors by seeking another opinion; in fact, they should welcome the input from experts who see this every day.

I wish your sister-in-law -- and all of you -- all the best. You've come to the best spot around for information and support.

Tracey,

I echo what Leslie says...get her to a CCC ASAP.

Don't take ANY answer except YES. Her life depends upon it.

Read my Signature Line.

Not all surgery is ruled out after having had radiation. I had a total laryngectomy and a Modified Neck dissection 4 years after I had radiation due to a new occurence on the larynx so just maybe they can do surgery on her. I too would strongly suggest she get a second opinion from a CCC. If you already have a diagnosis of cancer, they will usually take you fairly quickly and if this is aggressive, the sooner she gets there, the better.

Take care,
Eileen

Tracy, I live on the VT/NH border and you should get to Norris Cotton Cancer Center at Dartmouth Hichcock in Hanover asap!! The Cancer Teams are excellent and they will guide you and your sister-law thru this!!! They have some of the best Doctors in New England!! If you have any questions about NCCC send me a PM and I will try and answer your questions!!! Semper-Fi Bob

Tracey:
Welcome to OCF. Im so glad you have found this site to help guide you along. Right now is such a traumatic time for your family.

I agree with the other advice that was given.... Monday morning call the cancer center and get her in there immediately. While waiting for the appointment, make a list of questions, get a copy of her medical records. This would help her new doc and save lots of time. If the recurrance is spreading as quickly as what the docs say, then you dont have time to waste.

A year or two ago there was a new member who decided to quit going to radiation. Thru the efforts of OCF members encouraging her, she returned to treatment. She successfully finished all the radiation and was very greatful for all the support she received. She said without OCF she would have quit. This is an example of what a difference can be made by a group of people who have been thru the same thing. Please get her to agree to go to the cancer center.

I understand that you must choose your words carefully right now. Please think of it this way----those words you are holding back may save her life. I would suggest talking with her and calling the cancer center. You could even print out all the responses from OCF members and show her. Our responses are from people who have gone thru oral cancer as patients and their caregivers. Im close in age to your sister in law and Ive been thru the fight 3 times in 3 years!!!! If I can do it, anybody can. But they cant beat it if they dont try. When going to a doctor who doesnt have a game plan and time is of the essence, its critical for her to get to the cancer center immediately.

Please keep posting and let us know how she is doing. We are a big family here and welcome all.

You just got some very good advice. Now you have to find a way to get it into her head this is life and needs to be not taken lightly. Talk to her like you would a kid if that is what it takes, but do it. Make her think!!!Make her be like Christine who has really been a fighter in the 1st degree.

Tracey

I agree with the other posters. Seriously, print this out and hand it to her or go with her to her next appointment as any reputable doctor will AGREE that she can and should get a second opinion on this highly questionable evaluation, hence your correct intuitive feeling
[quote]We've been told surgery is not an option as she had radiation, and I get the feeling the Dr's are at a loss on how to proceed.[/quote]
I had the "maximum" radiation of 7200 rads or 72 grays yet one year later I had massive surgery on EXACTLY the same area that had been radiated. Yes, it is not optimal. Yes, I healed much more slowly. Yes, it does require additional surgical skill and experience. But those are all the more reasons to get to a CCC. It's a fact that radiation does not necessarily bar subsequent surgery, just like its a fact that some doctors don't have enough experience to know that. The worse that can happen is that the second opinion backs up the first one. Again, the doctors will help your sister in law get that second opinion and won't be insulted at all.
Keep the faith
charm

There's another toughy that knows the ropes on this stuff. Listen to him and Christine.

Hi Tracey- So sorry to hear about your sister. You sound like a wonderful, very caring, and thoughtful sibling. I'm sure you are a big comfort to her. Yes please have her see the top Drs.in this feild from the hospitals that were listed to see if there is a treatment they can recommend for her. It certainly sounds like she's absolutely been through the ringer with all of this. Your family is in my prayers.

Kate