WOW - what a huge relief you must be feeling Susan. That is terrific news compared to some other advice that you have received.

Your experience over the last couple of months should send a very clear message to everyone how important it is to get at least a 2nd or 3rd opinion.


Karen

That is great news Susan and best wishes for your upcoming operation. It was great that you took the advise to get more opinions.
I was in such shock when I got the diagnosis that I just went along with everything that the doctors said. Had not found this site at that stage and did not even know where to go for another opinion.
Will be thinking of you on the 6th and looking out for your post.

Same here Gabe. If I knew then what I know now.....

Karen

Susan

CONGRATULATIONS on being persistent and getting multiple opinions. I did not comment before since I feel the consequences of my tongue surgery, free flap and neck disecction are not the norm. I had zero problems with the free flap, zero problems with the skin graft on the wrist and zero problems with the groin donor site yet I can no longer swallow at all (failed 4 MBS) and am on a feeding tube for life despite 9 months of swallowing therapy and even VitalStim. I'm glad you will avoid any such risks.
Again, good luck
charm

I had the repeat PET scan on 3/16 - the 'active' lymph nodes from the PET scan in January have quieted down, so neither my local doctor nor the doctor at Johns Hopkins feel a neck dissection is warranted at this time yippie! They definitely recommend careful monitoring of the lymph nodes in my neck via PET scan and physical exams to ensure nothing develops in the future, but for now they will leave my neck alone.

My surgery at Johns Hopkins is scheduled for 4/6. He will be doing frozen sections during surgery to ensure that all suspect tissue is removed, but he feels the surgery on my tongue will be minimal. He does not anticipate that I would need reconstruction, so no free flap (a big sigh of relief!). Although he said there is a small possibility I made need a graft (using my thigh as the donor site). The surgery will be 2 to 3 hours, and I would stay overnight.

This is a far cry from the surgery that was recommended at Fox Chase! The surgery they recommended would have taken 8-12 hours, 24 to 36 hours in ICU, 7 to 10 in the hospital, and 8 weeks recovery time. Plus I would need speech and swallow therapy and physical therapy afterwards. Not to mention the LT consequences and QOL issues caused by the surgery.

It sure seems like I got off lucky!

Thank you to all who responded with their experiences with a free flap.

Charm & Everyone Else,

I owe it to this forum to be persistent and to seek multiple opinions. The experiences shared by others and advise given here is priceless. Although I've had more than one doctor tell me that I ask too many questions, including two of the surgeons that wanted to do major surgery on my tongue. I now have a personal rule that no surgeon who feels I ask too many questions will ever operate on my tongue while I'm under general anesthesia - after all, he or she certainly would be in the position to limit the number of questions I could "ask" in the future!

I am also aware that everyone is different in their response to treatment. My path on this "cancer journey" has taken a few unexpected turns and my reaction to RT has been more severe than most. I am thrilled with the recommendation of the doctor at Johns Hopkins, but at the same time I'm being cautiously optimistic that this will "cure" me once and for all.

Thanks for being there - I'll let you know how the surgery goes!

Susan,
That is wonderful news. Looking at the hour you posted this, the euphoria must be keeping you awake. Here's hoping you are finally done with this and all future doctor visits give the same good news.

Take care,
Eileen

Hope your pain is subsiding by now and that you are starting to enjoy your new status.

Susan,

It is so great to read your good news! Congratulations and a big whew! I hope your recovery is swift.

Anita