Followup appt this noon. PET shows there is still cancer in the bone. 50/50 chance it is false/positive because of the bone infection. ENT wants a biopsy this Tuesday to verify it to be cancer. Surgery is the only course of action to remove a significant amount of the jaw bone, any residual cancer and the front of the tongue.A neck dissection will also be necessary. There is also a 50/50 chance this cancer will return because of the aggressive nature of SSC. Should that be the case, there is no further treatment available to me. I found that surprising; no chemo, no radiation, no surgery. From all I've learned on the site, her predictions seem more dire than anything I've heard so far. I'm pretty much reeling from the visit and glad it's a weekend so I can clear my head and hopefully make a decision on the next step...Third opinion? Scared and stunned!
Pat

Hi Pat:

I will pray, pray, pray that what you are experiencing is indeed a false positive. Hopefully, it is the bone infection that showed on the PET scan. Sounds like you heard all the negative things, but there is always hope for something else. It has happened to others, so maybe yours won't be as bad as you heard. I'm sure others will post messages too that will help you feel better.
julieann

Julieann,

Thanks, that's why I post here! Thank God I have the whole weekend to get my head on straight so I can make an informed decision. I thought I was prepared for today, but I wasn't.
Pat

I am constantly asking my surgeon - "if it is back, are there options". He tells me there are always options - just a matter of whether I want to go there or not. I don't know how I would react if a doctor told me there was nothing further for me - I would undoubtedly, get another opinion, so probably the only thing you can do right now, is find the name of someone you would go to for a second opinion.

But, We're putting the cart before the horse. At this point you need to take a deep breath, relax those shoulders, and KNOW that you are not there yet. It isn't cancer until the biopsy says its cancer and that has not yet happened.

Know that WHATEVER the results, we are here with you.

Hugs

Donna

Im so sorry to read you need another biopsy to determine if you have cancer again. PET scans have false positives, it happened to me. Ive had the jaw surgery you are talking about. It can be done!!!! Sorry, I dont remember, have you had a second opinion? I know you are in an area where there are several great hospitals. I know Jerry mentioned some to you previously.

Christine,
This was my second opinion. I'm now taking the weekend to decide if I'm going for a third. This is all so overwhelming for me. I saw on one of your posts that you are waiting for reconstructive surgery. I thought jaw surgery included reconstruction. Did I misunderstand?
Pat

Pat,
Sorry to hear your news, it seems sometimes when we are trying to handle all we can something else happens that knocks us down again. I don't know what to say except get back up and keep fighting. Get another opinion! It aint over yet!

And know you are in my thoughts, you are not alone.

thinking of you.
Gina

Pat - if I were you, I would go for the 3rd opinion, and I would go to either Johns Hopkins or MD Anderson, both the 2 best places in the US (and perhaps the world?) to treat complex oral cancer cases. I went to MD Anderson but seeing where you live, you might want to consider Hopkins.

Pat,

I agree with Me2. Get another opinion. I am so sorry that you had bad news. I think it was Davidcpa who had 5 opinions before he received his treatment. Go to another CCC. The larger, research based hospitals are on the cutting edge of treatment way before the smaller local places. We are very happy with Penn and highly recommend it. You are in my thoughts and prayers.

Anita

I got the biopsy results yesterday and happy to announce the PET was a false/positive reading...NO CANCER!!!!!! Now we deal with the plans for surgery. The ENT is talking a mandibulectomy, tracheotomy and left neck dissection. She says she doesn't need to take as much of my tongue as initially thought...now just a small section under the tongue. The neck dissection won't be as extensive as initially thought either.She'll take a few lymph nodes mostly to give the PS as much to work with as possible. I hope I'm interpreting this properly; this is my understanding. As it goes to the trach.. I hope I understand that this is only temporary for the two weeks I'll be in the hospital recovering.
I have also set in motion a request for Medicaid to approve a third opinion at John Hopkins while I go ahead with the surgery plans at Fox Chase which she is estimates to be mid-May. I guess now it is just a waiting game and planning a list of questions that will come up between now and then. Hoping "you guys" can help me with that.
Pat