If anyone has anything to add or suggest, I am devistated. I had 30 HBO treatments, then a biopsy for a non healing ulcer on my tongue. I am 2 yrs post hemi-glossectomy,neck dissection (48 nodes, 3 positive), radiation and chemo treatments. Biopsy around ulcer and an area of dysplasia revealed no clean margins. PET in 2 days, then surgery for removal of right half of tongue, floor, free flap and some if not all bottom teeth.I am scared it has reached my jawbone too.
Can anyone give me any advise on questions to ask or what to do or not to do. I only have one week to make these decisions. I do not have insurance that allows me to go outside of the Allentown, PA area, so seeing someone in Baltimore or Phila is not an option. I have already drained my bank account on insurance deductibles and coinsurances. I am a self supporting homeowner and fear losing it all.

Cindy721

Hi Cindy! Small world, I am also from Allentown. Most hospitals have programs where they will give a reduced cost to patients who are in your type of situation or uninsured. I understand what you are saying but a second opinion before having a major surgery is a wise decision. When you have the PET results, your doctors will be able to tell if the cancer has spread and to what they will need to remove. But when they actually go in there is when the doc will know for sure what needs to be done.

Questions I would ask....

How much tissue will you be removing?
Exactly where?
Will I have a graph?
How will this affect my eating? my speech?
How many of these surgeries have you preformed?
What stage is my cancer?
How long do you think I will be hospitalized?
How long of a recovery should I expect?
Will I have a trach? (Ask for a possey muir valve so you can talk)
How swollen will I be?
Will I need a feeding tube?
Will this interfere with my career?
What other side effects should I expect?
Are there any other limitations I should prepare for?
How many teeth will need to be removed?
Please show me in detail and explain everything you will be doing during this surgery.
Will this surgery eliminate my cancer?
Is there any other treatments I will need afterwards?
Will I need rehab?
Is there a dietitian available who can help me with eating when this is over?
Will this surgery leave me disfigured? to what extent?
Will I be kept in a medically induced coma after the operation?
If any jaw is taken, what will replace it?
Will I get to choose if titanium, cadaver bone or my leg bone is used?
How long do you think I will be out of work?
Have you ever seen anyone similar to myself go thru this without a struggle in recovering completely?


Hope I didnt overwhelm you. Please click on the flashing mailbox, I sent you a private message.

Yikes - I'm not sure what the question is.... The way i read this is - its a recurrence? As in you've had the hemi - ND - rads and chemo (2 years ago) - and HBO What was the HBO for? The non healing ulcer? Now you've had another biopsy with a positive dx for more cancer and no clear margins? Did you have a flap done too? Is the recurrence in the same area?

If this is the case then depending on what your pet results are then then the surgery is a good thing. But do find out the particulars - the dr. Should be more than willing to answer any questions, and if not do get a second opinion!

Have you had clear scans and check ups up to this point? if so then hopefully it's just a small area. They are doing some kind of study on protein therapy for people with recurrences 2 or more years out - I'm not sure what the protocol is but I'm assuming if it's a study this might help with the lack of insurance, maybe try to get into a clinical trial to help with the costs? However christine's advice is invaluable - and far more knowledgable than mine!

Good luck, and hugs, and most importantly I'll say a prayer for you! Hopefully it's just a small area,

Cindy,

I�m glad to see you posted your situation on the OCF forum.

Christine gave you a great list of questions to ask. You can also do research on the OCF website. There is a search box in the forum (upper right) which enables you to search the forum and also on the OCF home page which will search the OCF website.

I know Cindy personally and it is a recurrence in the same area. She had surgery, chemo and radiation two years ago, so radiation is not an option this time. The HBO was for a non-healing ulcer. I pray that the PET scan results show no other areas of concern.

If you have any advice or suggestions for Cindy, please let her know. Also, please keep her in your prayers.

Prayers are for sure. And Cindy sorry about the recurrence. I would definitely look into a clinical trial- there is a proton therapy someone was talking about in the forum I believe they are using on patients will a recurrence after 2 years - again as I said before I'm not sure if the trials are covered cost wise - in my opinion they should be since they are using you kinda as a guinea pig! But there is section here about clinical trials and what's available out there - it may be helpful if there's a need for further therapy post surgery - I think there is also a forum area for help with information on financing - etc... (this is kinda one stop shopping).
I'm so sorry you are facing this again - I know its terrifying I wish I could be of more help. But I will keep you in my prayers - take care!!! And hugs!