36 year old with CC update

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  • #93622
    bglass
    Moderator

    First of all, what wonderful news you are scheduled for surgery.

    I was trying to remember how I felt in the weeks before my resection. What I recall is rushing through a massive to do list, getting the house and family organized. I felt like closets had to be cleaned, papers filed, supplies laid in. I had about the worst luck in this regard as our heating system failed the week before surgery and had to be replaced and then my parked car got smashed by a hit and run driver the night before surgery. I was on the phone with the insurance company as I was being wheeled into the surgical suite. In retrospect, while not fun at the time, all my household issues kept me distracted and I ended up not worrying that much about the surgery itself. I am not sure the exact lesson in this, perhaps it is to keep busy and focused in the days prior.

    As to the rigors of the surgery itself, I was initially in the ICU for maybe two days, somewhat out of it, then increasingly more alert over several more days until I was discharged after a week. I was fortunate not to have complications. If I had to do the experience over, I would try to walk more while in the hospital, which is hard initially. Also the drugs are initially pretty intense – my first act after waking up after surgery was to send a selfie to my boss showing all my tubes and machines in their glory, so maybe another piece of advice has to do with prudent access to the cell phone while in the ICU.

    Once home, I did need occasional oxygen for about a week. I had a drain that had to be emptied periodically, which was removed after three weeks. Showering was complicated due to the stitches and bandages plus the drain. I ended up wrapping my midsection in Saran Wrap before taking a shower. After a few days home, I was walking outside a bit. I got myself off the pain medication within three weeks so I could drive again, and stitches were removed also after three weeks. I was back at work (to a desk job) after two months.

    The hospital arranged a visiting nurse who came about five times over the first ten days, to take vitals and check my incision. Diet was initially soups and juicing, it took maybe a week to get back to more normal eating.

    This is what I remember. All this said, each person’s experience is different so hopefully others will chime in with additional experiences and advice. Looking back it was not the easiest period of my life but all manageable and my recovery was steady over the weeks following. My advice to someone going into this surgery would be that — like most challenges in life — it is something to work through, with time and patience and accepting there may be possible bumps along the way.

    P.S. I found helpful prior to surgery reading the blog of a British fellow named John Finch who describes his day-by-day experience with a liver resection in extreme detail – if you would like this level of detail. http://www.johnfinch.me.uk/diary.html

    I wish you the best possible experience and results. Regards, Mary

    #93621
    kbyrnz
    Participant

    Surgery scheduled!!
    Two weeks ago I had my second abdominal/pelvic/chest CT scan after completing 5 months of Gem/Cis. I am thankful to report that my tumor has continued to shrink (a decrease in size of 30% since diagnosis), my abdominal lymph involvement could not be seen on the current CT scan and my CA 19-9 (which has been an good indicator for me) has decreased from 17,000 at diagnosis to 1,700 after three months of chemo to 112 two weeks ago. I met with my surgeon (Dr. Schwartz at Mt Sinai hospital in NYC) and we are “go-ahead” with a surgery date…. 3/23/17. Dr. Schwatrz says that the tumor shrank in such a way that it shrank pulling away from ducts and major blood vessels making getting clean margins more likely. I am still also scheduled for the HIPEC (hiperthermic intra- peritoneal chemo) to be performed while I am still in the operating room. I have stopped chemo until then to optimize healing post resection and am feeling pretty good. The cumulative effects of the chemo was kicking my butt fatigue wise. I must admit that at the time of diagnosis this is the best result I could have asked for and I am very thankful for that, but the anxiety I currently feel about the actual operation is insane. I have daily crying spells thinking about my own mortality. Does anyone else have experiences like this? Dr Schwartz says the operation should last about 5 hours and I should be in the hospital for about 5 days. How long did it take before those who had a resection felt like they were “back on their feet” and able to get around their house with ease? I am a physical therapist in a rehabilitation center…constantly transferring patients in and out of their bed/wheelchair so I know it will be a while before I am cleared to go back to work.
    Any tips or suggestions that you have are greatly appreciated.

    #93620
    kbyrnz
    Participant

    Today I met with the surgical oncologist who would be performing the HIPEC procedure during my resection. She made a lot of good points as to why I would be a good candidate for this additional procedure which is to use the localized chemo to hopefully kill any cancer cells found in my peritoneal cavity. I have already received 3 months of chemotherapy and the surgeons are still saying that my surgery would only take place after I finish the 6 month course to make sure that the cancer is still responding well to the chemo. They say that the tumor already in my liver is not my enemy.. it is the free floating cancer cells in my system that are looking for a place to settle down and grow…which is what the chemo is supposed to be taking care of. The only apprehension that I have is the waiting until April/May to have this surgery performed. If the surgeon that I am using for a second opinion proposes surgery before that (and not performing the HIPEC procedure) I don’t know which direction I would pursue.

    #93619
    jessrose
    Participant

    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

    #93613
    vtkb
    Participant

    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

    #93614
    kbyrnz
    Participant

    ( 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,
    Katherine

    #93615
    lainy
    Member

    Hi, 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!

    #12831
    kbyrnz
    Participant

    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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