Hello friends,

Today I saw my beautiful Aunt Rosemary right after she left her doctor's office, and found out that her cancer has returned. To recap her case, three years and three months ago, Aunt Ro was diagnosed with BOT SCC, Adenocarcinoma in one salivary gland and a mets of SCC to the floor of her mouth and one cervical lymph node. What she has now is a recurrence of the Adenocarcinoma in a gland under her jaw bone on the same side. Her first surgery was the traditional center jaw split, free flap graft, and radical neck dissection. Her surgeon is now talking about doing the same surgery again- although I'm not sure about another neck dissection. If they took all of her lymph nodes out on that side, what would there be to remove and send to pathology at this point?

I have a couple of questions just to start. I'm sure I'll have more later. Has anyone had this same surgery twice? Splitting of the jaw- twice?? Is there ANYTHING new that can be done? Her surgeon has strongly advised that radiation be done after this surgery, but again she is against it.

Please post anything and everything that might help, as I will be faxing Aunt Ro responses and info every day.

My thoughts and my prayers are with you all as you continue to do battle with this beast.

Have you been evaluated by radiation oncology and what is their perspective? I am a little stunned that they had an advanced cancer to begin and a single modality treatment. That is not typical protocol. The NCCN guidelines do not recommend that.

If there is ANY chance of getting a second opinion from a CCC I would do it now.

I'm with you on this one Gary, I had to read the post twice to make sure I was reading it correctly.
Lisa, if I were in your Aunts position, knowing what I know now about this cancer, I would get surgery and then BEG to get my radiation going. If your Aunt won't do the radiation, then I would suggest that she save herself the difficulty of the surgery, because without radiation the chances of surgery being successful are lowered considerably.
Why didn't she have radiation three years ago?? Did the doctors suggest it but your Aunt didn't want to have it? Radiation is something we can all get through, it's tough, but saves our lives. Hope your Aunt gets the treatment she needs.

Hello, Lisa.

I remember talking to your aunt and how incredibly set against rad she was three years ago, even though you tried your darndest to change her mind. Have you explained bluntly that although rad is hard, death is worse? If ever she needed to change her mind, this would be the time. It seems to me that going through that terrible surgery again, without the backup of rad, will give no peace of mind that the cancer will not stage a third recurrence. The objections she has should be put on the table and reexamined. Rad now is not the same as it was years ago. Bottom line, this may be her last chance. It might help a lot if she could talk to a radiation oncologist, and if I can help to change her mind, I will be glad to give it a try.

Gary and Minniea, thank you for the responses and Joanna, thank you very much. You said it all in your post. Aunt Ro and I haven't had the time to talk seriously yet as this is brand new news, but I'm faxing her everything that's been said thus far. The only thing I did say to her the other day is that she HAS to throw something else- something different into the treatment mix since surgery alone can and often does leave behind stray cancer cells that can't be detected by any means that we have available to us now. Having been a member of this Board for the last three years, I wouldn't put any stock in a third occurrence. I'd like to see her doctors roll out the cannons and blast this thing now while she's got a fighting chance.

Joanna, I'll get back to you privately about your offer.

Love to all. Keep fighting the good fight!

It's taken me two days for this news to sink in. My Aunt Rosemary's Pet scan shows that her cancer has spread to her right lung and there is radio-tracer uptake corresponding to the right tongue base and right tonsil. These areas are opposite her original problematic side. She's scheduled to see a Pulmonary specialist tomorrow, but her surgeon has already told them that the tongue/jaw/gland surgery scheduled for later this month will do her no good. She's been offered palliative chemo/radiation, but she says she doesn't want any more of any of this. Of course we won't know for sure until they biopsy her lung next week but it looks pretty damned bad or else the surgeon wouldn't have said all this. Meanwhile the tumor under her jawbone is growing larger and is collecting fluid..... Frankly, I don't even know that she'll consent to the lung biopsy at this point. I know she's tired and fed up. This time, I can't bring myself to pressuring her.....

I'll keep everyone posted.

Just a point of interest - they told my husband he had lung cancer too. But, after two needle biopsies were done - at two different hospitals - the PET scan was wrong. Nobody knows until they can test it, but it is certainly worth going through the test to find out. Once she knows all of the facts she's the only one who can decide what treatment she will/won't accept. But, you need to be sure she has facts to base her decision on.

Keep your chin up. Your support and knowledge is invaluable to her - especially if she is ready to give up before the fat lady has sung.

'Nother point of interest. They told me I had lung cancer also, based on the PETscan. The upper lobe of my right lung lit up and my RO wanted me to have a lung biopsy before starting chemo. When I went in for the biopsy, whatever was there was gone-there was nothing biopsy.

Everything that lights up under the PETscan is not cancer. There are other infectious/inflammatory processes, especially in a lung.

Oh, Lisa, I am so sorry to read this about Aunt Rosemary....0h my, please let us know how she is doing...this is horrible news for her, I know she has been having such a bad time anyway...let me know if I can be of ANY help. Love, Carol

Lisa, one more thing I forgot, when I was initially diagnosed, my doctor sent me for a pet scan, and something lit up on my lung, another doctor called my home and told me the tongue cancer had possibly spread to my lung (this was pre surgery, etc), I remember crying and calling my husband at work and thinking this is it. However, it turned out to be scar tissue from bronchitus so I have been told. again, anything I can do....please let me know....you can email me or pm....Love, Carol