Carol had her scan done yesterday and it was a PET/CT after all. She was given the wrong info when radiology called with the appt. last Friday. I wish some of the nurses took better care of the patients. It can be very frustrating. We went to the Tumor Board in the afternoon to find out it was canceled until next Tuesday due to the holiday. Carol never got the memo! I hate this hurry up and wait crap. Even with this delay Carol is staying positive, not much else to do at this point. I'll post next week with the results and battle plan.

Linda

Linda,
I am so sorry about this most recent occurence. I am glad they checked it out. This post also worried me as I too have a new mass on my left cheek. I am having a PET/CT if my insurance will approve to find out what this is. I pray for your partner that they will get this out ASAP.

Angelia,

I am so sorry to hear about this new mass. I have read many of your posts. You have been through hell and back. You are a fighter.

Carol's new mass has stumped the Doctors...We are praying the PET/CT Scan doesn't show any false positives or light up like a heavily strung Christmas tree. Except for the pain in her chin, jaw area she feels pretty good or so she tells me.

Linda

Linda,
For now I am praying that Carol will not need a replacement. If she does, I will be happy to give you some practical advice. The healing is slower in the leg than in the jaw but eventually other than a scar, the surgery leaves no long term problems. The plastic surgeon who did the reconstruction of my mandible said that he prefers to use the free flap from the same side as the original mandibulectomy.

Malka,

I have read that the healing of the leg does take longer than the reconstructive surgery. I don't know if they will be able to use the free flap from the same side (left) because of her leg being broken as a kid. I'm sure it would depend on where it was broken? Carol can't remember now, damn chemo.

I appreciate your offer of providing advice with your own personal experience, I'll take you up on it, if that is the battle plan. I will post later today with the results of the Tumor Board.

UGH! 6 hrs and 15 mins to go.

Linda

Best of luck with todays meeting.

We went to the Tumor Board yesterday and was told the cancer is localized at the left lower jaw. Originally the surgeon was going to do a fibula free flap which meant having her legs scanned first, check blood vessels, etc., delaying the surgery. I told him Carol had broken her leg when she was a kid and was concerned about the viability of using the fibula. He then went on to explain he could take a free flap from the shoulder, hip or wrist. Carol told the Dr she didn't care where they took the free flap from, just do it! Boy, I never saw Doctors pull out their appointment books so fast and at the same time! It was comical to see even with the seriousness of it all. (Gotta keep the humor going) Carol is scheduled for surgery Aug 4th and will be using a free flap from her shoulder.

The surgeon said the surgery could be anywhere from eight hours and up depending on the complexity and she will be in the hospital from a week to two weeks, depending on how well she heals. Carol has an appointment with the Surgeon next Tuesday and will go into greater detail then.

Neither one of us asked what stage it's in.....the minds went into a fog....knowing she'll need surgery and then having the date set really puts it into perspective.

Forgot to mention...no more radiation due to the aggressive radiation therapy done in Feb/Mar and no chemo.

Any advice, suggestions, experiences (good/bad) from patients and caregivers? Surgery, post surgery? Side effects, medications, etc? Surgery after radiation, chemo?

Linda