So, I've been lurking and preening information since back in May when my wife was first diagnosed. This year has been nothing short of hell. She joined the boards a little while ago. She has not been active on since her initial post. I understand her reasoning completely. However, I have questions and concerns that I would like to ask around about form time to time, and thought I would go ahead and sign up!
So I threw most of her history down in my signature. She is 33 initially diagnosed back in May, had a "complete" removal of the initial tumor that had perforated her colon wall. No mets to lymph nodes and clear margins. The initial surgery was an emergency surgery performed at a local hospital, amazing surgeon but a general surgeon.
We went to UAB, about an hour and a half down the road. Got an Oncologist and he started her on Xeloda, granted this was 6 weeks post op. Her tests and paths that UAB did separately came back with the same assumption the General Surgeon had. The main tumor mass was removed, no signs of spread, carry on with oral chemo. Her oncologist did go ahead and order a PET.
The PET came back with "hot spots". One at the resection site, one near and ovary, and one in lower right quadrant near her hip. He refereed her to the Chief of Surgical Oncology at UAB, his specialization is gastro-intestinal cancer. He took a look and assumed residual tumor left behind from initial surgery. So, he went in to remove. Within 5 minutes of being "in" he realizes the tumor had spread t peritoneum and there was nothing surgically he could do.
So now we are Stage 4 and palliative. Enter more shock and more depression. It seems like every trip to a doctor has resulted in worse and worse news. There has to be something good somewhere right?
After the surgeon gave me the news I went straight to Google, because that is always the first response these days. This led me to some horrendous survivability numbers and also HIPEC. Which seems to be the best treatment option, if she can qualify. So scrounged around for doctors and facilities and sent out a few emails. Within 30 minutes I had a response back from a Dr. at Emory. I talked to him that day and a few more times over the next few days. I also talked to admitting people at MD Anderson but I could not even talk with a doctor until we had been accepted as patients and had an initial visit. We are a young family with two sons, 3 years and 9 months, a pane trip to Houston is not out o the question but currently I am not seeing the benefit over the Doctor I have talked to at Emory.
I know the positive outcome results from HIPEC can be significantly increased by surgeons with vast experience in the procedure. The Dr. at Emory does about 30 HIPEC procedures a year, and his team does a combined 100 annually. That seemed like a decent amount of experience to me.
He knows Dr. Fabian Johnston at Johns Hopkins, who is the Dr. her ontological surgeon at UAB has recommended. I believe they were in residency at Pittsburgh together. Anyways, we know that HIPEC is the ultimate goal, we just have to get her to that point.
Right now she had two abscesses two weeks ago, both appear to be at previous tumor sites. The optimistic thought is that these are the result of residual bacteria attacking necrotic tumors, which would mean the chemo is doing its thing. The down side to what ever the reason is that no chemo while she fights these. They drained one and as of an ultrasound Thursday there was no sign. The one on her ovary however was not reachable for aspiration and the antibiotics seem to have had no affect on it, it actually grew by a few mm.
We go for an MRI on Wednesday and to talk with her oncologist about all of this, I am hoping so hard that if they have to go in it can be laparoscopic. 3 major surgeries in a year is enough, she doesn't need a fourth. Also we could use some positive news.
With all of this being said I have a few questions I would like to throw out to the wonderful community here:
1. Any experience with abscesses and drainage/removal?
2. Anyone with experience of HIPEC at Emory? Good/bad/indifferent?
3. Any and all thoughts and recommendations are appreciated on any aspect of what I have said here.
Thank you all!