36 year old with CC update
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I haven’t had HIPEC, but I have had two resections and an HAI pump insertion. My first resection was at age 32 and they took my whole left lobe and the second was at age 33 after a recurrence and took wedges out of my right lobe and did RFA. After both surgeries, I was back at work after three weeks. I pushed WAY too hard though and I don’t recommend that course of action. Since you’re young like me and if you’re otherwise generally healthy, then hopefully the recovery won’t be terrible. My pain was well managed. My worst surgery was the third when I had an HAI pump inserted. The recovery does seem to be getting harder for me, but I know I am chock full of adhesions and scar tissue at this point, so they have to get through that mess before even doing the surgeries. None of my surgeries were laproscopic. I have a big chevron scar, which some younger doctors surgeons I have seen is from an older technique. I trust my surgeon though.
I had six months of neoadjuvant chemo and three months of adjuvant with the first surgery. Then I had my first recurrence and we went right to surgery. I was taking Xeloda when I had my second and we went right to the pump insertion. I had three months of HAI chemo as a part of a clinical trial at MSKCC, which was stopped because it did massive damage to my bile ducts. Luckily the tumor was gone by that point and (knock on wood) I haven’t had to have treatment for the cancer since February 2015. I’ll be dealing with the collateral damage from the HAI chemo (which is significant and a very long story) for the rest of my life.
So I guess my point is that there’s no “right” way. Everyone is different. If you’re confident with your doctor and have sought out at least one more opinion (preferably two), then trust their judgement. I completely understand the instinct to have that thing out of your body as soon as possible though. It’s very strong.
Be well
To add to Katherine’s post, I think the big question is, what is the optimal length of time for neoadjuvant therapy to allow surgery? I know others have had it, was anyone afraid of waiting too long to get the surgery if they were responding to chemo after the first few rounds (first treatment was 10/10/16)? Did anyone wish they did more chemo before surgery to optimize the outcome?
We will of course be asking the surgeons these question also.-Billy
( I just posted this on the surgery, resections and treatment options thread, curious to see what people think about this topic)
I just completed six treatment sessions of chemotherapy (gem/cis). On my first follow-up Ct scan I am happy to report that there has been shrinkage with my intrahepatic tumor as well as the surrounding lymph node involvement. This afternoon I heard from my surgeon about his next plan of action. He told me that since my tumors seem to responding well to the chemo, he wants me to continue with chemo for a total of 6 months at which point he will perform a resection as well as a procedure called HIPEC where “heated chemotherapy solution is pumped through your abdomen for 2 hours. This is performed at the same time as the resection” He says that with the removal of all detectable tumors and HIPEC there is now hope for long-term survival. I have to admit that I was slightly disappointed with his plan. I was hoping for surgery ASAP. I know that CC is an aggressive cancer and I keep fearing metastatic growth. Has anyone had this HIPEC procedure? How long have your surgeons wanted to wait to perform your resections while continuing on chemo? When I first sought out opinions when diagnosed I was told by 3 surgeons that I was a surgical candidate but they want to try chemo first. What worries me is the “most aggressive” surgeon is the one suggesting this course of action which involves waiting a total of 6 months before resection. Im assuming the HIPEC is to take care of my lymph nodes in my abdomen that were swollen on initial scan and have now shrunk.
Thanks,
KatherineHi, Katherine, just wanted to say we LOVE the shrinkage word! Congratulations. Glad to hear you advocate for the port but above all else you seem to be on a good road. Please continue to keep us posted as posts like yours give hope to everyone!
I just got the results from my first follow-up CT (abdominal/pelvic and chest) after 6 chemo visits. Thankfully my liver mass is shrinking as well as lymph nodes (peri-portal and mesenteric). No bone/organ or soft tissue involvement seen. I am still waiting to hear from my surgeon whether I can have my resection now vs having more chemo since it seems to be working and have it shrink more. If it were up to me I would have my resection tomorrow. The longer it is in me the more I worry about metastasis.
On another note I had my first chemo session after a port insertion last week. I have to admit everyone who said to go for it was absolutely correct. It made chemo so easy and even took an hour off of my drip time.
For those of you who have had a resection, how long was your recovery time? Did you continue chemo therapy afterwards? What can I expect post-op.
Thanks,
Katherine
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