Apr 18, 2014 - 11:03 pm
I am writing this in the hopes I can get some opinions and feedback. My Mom was diagnosed 6 weeks ago with cancer under her tongue and floor of mouth near her jawbone on the right side. At the time the biopsy results were told to us, the doctor said it was definitely cancer and that she would need either surgery, radiation, or both. He is an ENT and so referred us to a surgeon and explained she would need what is called a fibula flap procedure and reconstruction. My Mom, at 82 years of age, reluctantly agreed to go and talk to the surgeon as opposed to starting radiation treatments. She was told that radiation would probably destroy her jawbone. So off to the surgeon we went. After examining her, the surgeon explained that he didn't think the cancer had spread to the bone but could not tell without a CT scan. He explained the fibula flap procedure to her (mimimally). I have since done much research and gotten the information on my own. She was scheduled for a CT scan, pre-surgery testing, and another consultation with the surgeon to get the CT results. There was also a question as to the results of her biopsy. The pathologist had written down in situ but both the ENT and surgeon agree that the exam indicated this was not the case and it was not pre cancerous but cancer and possibly in the bone. Very confusing to my Mom and myself. When we went to the surgeon for the second visit to get the CT results, it was confirmed in situ, however the surgeon still recommends a 10-12 hour surgery for my Mom, with reconstruction of the jaw and a tongue resection as well. This would include 6-8 weeks in rehab with the possibility of additonal radiation. The CT results were "inconclusive". The surgeon made the statement "We don't really need those results". What??
We decided to get a second opinion, had all the records sent to an oncologist. We were told that she did not need surgery but he could get rid of her cancer (his words) with approximately 25 radiation treatments and a few sessions of chemo. He said the surgeons were to eager to do her surgery. OK...now were are really confused. So back to the surgeon and the surgeon says there is no way the cancer can all be removed with radiation and chemo. We feel like we are in a tug of war and stuck in the middle. But the bottom line is that my Mom is 82, has Celiacs disease which affects her immune system, (when under stress, the risk of an attack is greater...when my Dad was ill, she got down to 85 lbs. and ended up in the hospital herself). She weighs in at about a hundred pounds now, says she prefers to let "nature take it's course" and has decided not to do anything. I am so afraid for her and don't know what to do or who to turn to. She is of sound mind and can make her own decisions. I want to support her and be there for her in all of this. She is active, eats well, works around the house and outside and looks so good for her age. The surgeon has now told her (after the pathology report confirmed in situ) that she can wait if she prefers but the cancer will eventually develop and spread. I am going to find another oncologist to take her to...that will be able to care for her for the duration and one that will offer palliative care as well as the possibility of a referral for surgery should she change her mind. I hope this is the right thing to do for her because I don't know what else I can do for now. Thanks for letting me vent and tell my story. Any feedback would be appreciated. I have been reading some of the posts in the discussion boards and am amazed at the courage and determination some of you have expressed. I can only hope my Mom and I have the same.