Dr. Sanoff is great, though of course she gave me news I didnt really want to hear. She too thinks it is back and my best outcome would be for more surgery, but it might be too difficult to perform because of its placement and that I already had so much of my liver taken out the first time. So surgery moght not be an option. What I found interesting was that she said surgery in Sweden would be as good if not better than in the states since they (like the UK) have specialised centers for such things and so therefore the doctors are more experienced with this type of surgery.
My mom said I made Dr. Sanoff blush when she told me that surgery was my best if not only hope for long term survival and I told her that was not good enough. I am looking for more than long term survival and I intend on having more than that. To which my dad said I was always contrary.
The meeting was both soul destroying and good. My parents went with me and this is the first time they have heard things come directly from the doctor. They need a little time (as do I) to absorb the fact that statistically I will die sooner than I would like. But Dr. Sanoff and I talked about why I was not given chemo or radiation in Sweden (that stupid statistics thing) and that she would have given it to me if I was in the states. That was hard to hear and I will forever wonder if it would have come back if I had treatment after my first surgery instead of staying in Sweden with my husband. The good news is that she explained that I am entitled to Medicare which I did not think I was and that radiation, chemo, and surgery are covered with it. I am going to fill out the paperwork today. Dr. Sanoff said that I could have my surgery in Sweden and if no after treatment was offered to come back to her and we would work out some radiation and possible chemo for me with medicare.
That information was the most important to me. I have had this horrible fear about the progression of this disease. I never wanted to make the decision to stop treatment in Sweden to come back to the US to die. Now, I know that I can have treatment in the US and I will never have to decide to give up just so I can come back home. I can not explain how important that was for me to find out.
Thanks Carol for passing along Dr. Sanoff's details to me. I , like you, trust her and appreciate her dedication. This community is amazing and I owe so much to it, and I never would have found out about Dr. Sanoff and medicare without your help. Thanks again.
I will be back in Sweden on Monday where I will begin pushing for surgery and radiation/chemo. Dr, Sanoff said it needs to be done in a month. One more Christmas for me in the hospital--have any of you had Christmas dinner in the hospital? Not good.
Other things I found out from my visit-1)my original tumor was T2, not T1 like I thought. And I am 5'5'' not 5'7'' like I have always believed. So not only did I find out the cancer is back, but I am short to boot.
Cancer is a word, not a sentence.
36 year old patient with buckets of hope