HIPEC

dezysmith
dezysmith Member Posts: 6
in Colorectal Cancer #1
Diagnosed with Stage 2A colon cancer April 2010, had resection and complete hysterectomy, which was all clear except for fibroids and endometriosis. Did not have any chemo as standard protocol does not recommend it (had 2 opinions on that decision and felt very confident). I am being treated at Johns Hopkins Hospital in Baltimore. Completely trusted my doctor. At 18 month CT scan found a mass in my peritoneum .... did PET was inconclusive, waited 1 month to retest PET and now believe it is highly suspicious for recurrent colon cancer (even though the SUV uptake was only 1.7 but it grew .2 cm in the 1 month, so it is now 1.8 cm soft tissue nodule located inbetween 2 bowel loops), as you can imagine I am just devastated. Cannot do biopsy of tissue for 100% confirmation therefore they will not administer any chemo Went to HIPEC specialist at Hopkins, she thinks I am a good candidate. I would like to hear of some stories of success with this procedure if any of you out there have had it. It seems a bit radical but hopeful for a longer remission? Please I am hanging on to hope and prayer here ... so nervous I am ready to be committed to a mental hospital. Thanks much everyone!

Comments

  • buckeye2
    buckeye2 Member Posts: 428 Member
    #2
    My husband will be
    My husband will be undergoing this procedure at Ohio State on Tuesday 11/30. We believe it is our one and only shot at remission and maybe even a chance of cure even though it's a long shot. Lisa
  • dezysmith
    dezysmith Member Posts: 6
    #3
    buckeye2 said:

    My husband will be
    My husband will be undergoing this procedure at Ohio State on Tuesday 11/30. We believe it is our one and only shot at remission and maybe even a chance of cure even though it's a long shot. Lisa

    Wish him luck
    I wish him much luck .... at what stage was his cancer diagnosed and how long ago? Is this is first recurrence and, if so, how and where did they find it? I am just besides myself. I did not ask about how much time, as it is all just too upsetting for me to endure. Did your husband's dr. tell him it would take about 3 months to recover? Are they going to remove a lot of his organs during his surgery before the administering the HIPEC?
  • tommycat
    tommycat Member Posts: 790 Member
    #4
    I did not have HIPEC but
    I did not have HIPEC but there are others on the Board that did, and did well with it. I hope they chime in soon with their experience.
    Very sorry to hear your news. You will find the courage and faith to go through this procedure.
    Your Friend in California~
  • dezysmith
    dezysmith Member Posts: 6
    #5
    tommycat said:

    I did not have HIPEC but
    I did not have HIPEC but there are others on the Board that did, and did well with it. I hope they chime in soon with their experience.
    Very sorry to hear your news. You will find the courage and faith to go through this procedure.
    Your Friend in California~

    Hi ... thanks for the encouragement. I too hope that someone will chime in here with some good news because all I can find is gloom and doom. Great news for you that you came to the 2 year mark -- I thought for sure I was going to as well. This is actually worse than the original diagnosis, and I am barely able to put one foot in front of the other. It's almost as though I've already become "the patient" ... I feel weak from all the crying and anxiety and not eating. I am trying to put on a cheery face and decorate our Xmas tree today ...
  • buckeye2
    buckeye2 Member Posts: 428 Member
    #6
    dezysmith said:

    Wish him luck
    I wish him much luck .... at what stage was his cancer diagnosed and how long ago? Is this is first recurrence and, if so, how and where did they find it? I am just besides myself. I did not ask about how much time, as it is all just too upsetting for me to endure. Did your husband's dr. tell him it would take about 3 months to recover? Are they going to remove a lot of his organs during his surgery before the administering the HIPEC?

    My husband was diagnosed
    My husband was diagnosed with Stage IV in May. He began with a tumor at the top of his large intestine, a growth outside the colon, and one spot on the liver. What makes me mad is that he had a prioir colonoscopy 18 months prior to diagnosis and was told he didnt even have a polyp. His treatment so far has been 12 rounds of 5 FU. Right now he is feeling perfectly healthy. We have never asked the question, "how much time". I don't want my husband to live his life with a preconceived concept of when it ends because I believe we still have lots of days left to concentrate on living rather than dieing. Our doctor said he would start feeling like himself after about a month. The surgeon said he will more than likely remove some organs but it would be a game day decision. The two quotes I have learned from this board that give me comfort are "this is a marathon, not a sprint " and "feed the faith, starve the fear". The challenge to this disease is living not dieing. The people on this board taught me how to do that. When I realized they were continuing their normal lives, I realized I could do that too. That young man in your picture is pretty handsome. We have 13,16, and 19 year old daughters we are trying to get rid of but whoever takes them needs to know they are high maintenance. I hope for strength, peace, and normalcy in your days ahead. Lisa
  • geotina
    geotina Member Posts: 2,111 Member
    #7
    Hello and Welcome:
    We have no experience with HIPEC. Right now you are still very much in shock, worried and scared. HIPEC is a scary procedure but does give you an excellent chance at knocking this cancer down. there are several people on the Colon Club site that have had HIPEC quite successfully and perhaps their journey will be of assistance to you so you might want to check in there.

    Don't second guess any decisions regarding treatment made in the past. Most of us do the best we can with the information we are given at the time and simply do the best we can. You are suddenly thrown into a world you know nothing about. You are being treated at an excellent facility.

    Take care and don't read the stats they serve no purpose. My hubby was diagnosed advanced Stage IV in March 09 and is still here, doing reasonably well. He has never been off treatment except for short 3-4 week breaks.

    Take care and continue to let us know how things are going. Ask any questions you may have, no matter how small and someone will be on to let you know their experience.

    Tina
  • abrub
    abrub Member Posts: 2,174 Member
    #8
    It is more commonly done for Appendix cancer
    I know a number of people who've had it. At Memorial Sloan Kettering (NYC) they don't do HIPEC, but rather a variation of debulking, and intraperitoneal chemo, starting right after surgery and every other week for 4-8 cycles (which is what I had.)

    It's a rough procedure, often creating many problems of its own - get as much information as you can before hand; see what it will buy you.

    Alice
  • dezysmith
    dezysmith Member Posts: 6
    #9
    abrub said:

    It is more commonly done for Appendix cancer
    I know a number of people who've had it. At Memorial Sloan Kettering (NYC) they don't do HIPEC, but rather a variation of debulking, and intraperitoneal chemo, starting right after surgery and every other week for 4-8 cycles (which is what I had.)

    It's a rough procedure, often creating many problems of its own - get as much information as you can before hand; see what it will buy you.

    Alice

    Hipec
    Thanks ... Alice, what do you mean by it can create many problems of its own? Did you have the debulking and IPC at Sloan? ANd you're right, I am so scared, I can barely function. It is like being diagnosed all over again only this time much much worse. I actually thought I walked away from this horrible disease and for the past year and a half I lived my life like I had nothing wrong. And now this. How stupid of me! Sometimes, even though I want to live for my beautiful son and family, I feel like swallowing a vile of pills and just be done with it. I was seriously considering that last night. But in the eyes of GOd I would be a sinner?
  • here4lfe
    here4lfe Member Posts: 306 Member
    #10
    Take it 1 step at a time
    Easy to say, hard to do. My wife is Stage 4, diagnosed in 2009, being treated at GBMC in Baltimore. She has not had HIPEC, so cannot comment on that, thou others on the board have and may chime in.
    All I can say is get with your oncologist/PA and get something for your moods. The hysterectomy and removal of your ovaries probably put you into menopause, so you need something to help with that (my wife had the same problem) on top of the regular cancer anxiety.

    Best
  • tommycat
    tommycat Member Posts: 790 Member
    #11
    dezysmith said:

    Hipec
    Thanks ... Alice, what do you mean by it can create many problems of its own? Did you have the debulking and IPC at Sloan? ANd you're right, I am so scared, I can barely function. It is like being diagnosed all over again only this time much much worse. I actually thought I walked away from this horrible disease and for the past year and a half I lived my life like I had nothing wrong. And now this. How stupid of me! Sometimes, even though I want to live for my beautiful son and family, I feel like swallowing a vile of pills and just be done with it. I was seriously considering that last night. But in the eyes of GOd I would be a sinner?

    Do you have a sister or a
    Do you have a sister or a beloved friend who can come stay with you for a bit? This is tough stuff you are dealing with, and having someone there who you can lean on could save your life. Please do call your Dr. and tell him/her how you are feeling....the depression needs to be addressed STAT.
    You can do this~
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #12
    Traditional surgery
    Is there any chance that the nodule can be removed with traditional surgery? I ask because this has been my doctor's approach for me-I've had four surgeries with number 5 this week to remove various bits and pieces from my colon, small intestine, and peritoneum. The latest is a small tumor in the abdominal cavity that looks like it may have been a cellular escapee from the intestines up above during the previous surgery. My doctor's hope is that this repeated clean-up surgery will eventually get everything out and leave me cancer-free. He's very resistant to the idea of HIPEC, in part because he's always trying to balance quality of life with results. Are there studies out there that show how well HIPEC does at improving prognosis? I guess given the harshness of the treatment, that would be something I'd want to ask my doctors before making a final decision. Good luck, stay strong-Ann
  • abrub
    abrub Member Posts: 2,174 Member
    #13
    dezysmith said:

    Hipec
    Thanks ... Alice, what do you mean by it can create many problems of its own? Did you have the debulking and IPC at Sloan? ANd you're right, I am so scared, I can barely function. It is like being diagnosed all over again only this time much much worse. I actually thought I walked away from this horrible disease and for the past year and a half I lived my life like I had nothing wrong. And now this. How stupid of me! Sometimes, even though I want to live for my beautiful son and family, I feel like swallowing a vile of pills and just be done with it. I was seriously considering that last night. But in the eyes of GOd I would be a sinner?

    HIPEC - some of the details
    HIPEC is often done with a major cytoreductive surgery that includes removing any "unecessary"organs in the peritoneum, so that they won't become sites for further cancers: gall bladder, spleen, and possibly the peritoneal lining. You then have heated chemo poured into your belly, and circulated around, before it is ultimately drained out. Chemo can cause its own damage.

    My cytoreductive surgery (at Sloan) only removed areas that had visible tumor: my omentum, portions of my colon (I'm reconnected perfectly in 3 places). Some bits of my peritoneum were removed as well; my surgeon does not like to remove the entire peritoneum, as it serves to contain things. My ovaries and uterus were removed earlier, in the surgery that found my cancer. I then had IP chemo (also at Sloan - 5 cycles). That was very hard in and of itself, as I developed a chemical peritonitis (very rare - no one else I know had this problem.) However, the chemo resulted in severe internal scarring. I should note that everything functions perfectly now; I do have some discomfort from adhesions, but am otherwise able to eat, drink, and exercise normally.

    Digestive problems are common post-HIPEC, as are bowel obstructions. You need to ask about quality of life issues. I do know that another appendix cancer patient who uses the same local oncologist as I do, and went to Sloan for a referral decided to go to one of the HIPEC experts. While she and I are both in full remission, with great outlooks for the future, her quality of life has been severely impacted by the consequences of her treatment. I should add that some people get through HIPEC with few or no problems. However, it is a more extreme procedure than what I had (which was difficult enough.)

    Let me know if you want direct contact with me so that we can talk this through.
  • laurettas
    laurettas Member Posts: 372
    #14
    buckeye2 said:

    My husband was diagnosed
    My husband was diagnosed with Stage IV in May. He began with a tumor at the top of his large intestine, a growth outside the colon, and one spot on the liver. What makes me mad is that he had a prioir colonoscopy 18 months prior to diagnosis and was told he didnt even have a polyp. His treatment so far has been 12 rounds of 5 FU. Right now he is feeling perfectly healthy. We have never asked the question, "how much time". I don't want my husband to live his life with a preconceived concept of when it ends because I believe we still have lots of days left to concentrate on living rather than dieing. Our doctor said he would start feeling like himself after about a month. The surgeon said he will more than likely remove some organs but it would be a game day decision. The two quotes I have learned from this board that give me comfort are "this is a marathon, not a sprint " and "feed the faith, starve the fear". The challenge to this disease is living not dieing. The people on this board taught me how to do that. When I realized they were continuing their normal lives, I realized I could do that too. That young man in your picture is pretty handsome. We have 13,16, and 19 year old daughters we are trying to get rid of but whoever takes them needs to know they are high maintenance. I hope for strength, peace, and normalcy in your days ahead. Lisa

    Hi Lisa
    Just curious. Is your husband's cancer the normal colon cancer or is it a mucinous type? My husband's is signet ring cell and from what I have read, they don't think it forms polyps and can grow from nothing to stage 4 in a year or two.

    I don't know, you may want to keep those girls around to help out with the turkeys. Of course if they could bring a young man into the family who liked turkeys, then hey all the better!! That's what we were hoping for with our son-in-law but so far work keeps him so busy he has no time at home. We may have to go talk with his boss one of these days!
  • westie66
    westie66 Member Posts: 642
    #15
    annalexandria said:

    Traditional surgery
    Is there any chance that the nodule can be removed with traditional surgery? I ask because this has been my doctor's approach for me-I've had four surgeries with number 5 this week to remove various bits and pieces from my colon, small intestine, and peritoneum. The latest is a small tumor in the abdominal cavity that looks like it may have been a cellular escapee from the intestines up above during the previous surgery. My doctor's hope is that this repeated clean-up surgery will eventually get everything out and leave me cancer-free. He's very resistant to the idea of HIPEC, in part because he's always trying to balance quality of life with results. Are there studies out there that show how well HIPEC does at improving prognosis? I guess given the harshness of the treatment, that would be something I'd want to ask my doctors before making a final decision. Good luck, stay strong-Ann

    Traditional Surgery
    Hi: This is the surgery I have been trying to get - just removing the 5 little nodules I have (all cancerous) on my peritoneum rather than the more drastic debulking, peritoneum stripping, and HIPEC. If more come in, then remove them via surgery. There are only a couple of places in Canada that do the HIPEC, none where I live. So far, the surgeons on my "team" say they can't remove just the nodules as there are micro-seeds of cancer that can't be seen. In my mind, if they haven't become visible in 2 years, are they even there? You're the first person on this discussion board and others whose surgeon has gone this route. Thanks for posting.
    Cheryl
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #16
    westie66 said:

    Traditional Surgery
    Hi: This is the surgery I have been trying to get - just removing the 5 little nodules I have (all cancerous) on my peritoneum rather than the more drastic debulking, peritoneum stripping, and HIPEC. If more come in, then remove them via surgery. There are only a couple of places in Canada that do the HIPEC, none where I live. So far, the surgeons on my "team" say they can't remove just the nodules as there are micro-seeds of cancer that can't be seen. In my mind, if they haven't become visible in 2 years, are they even there? You're the first person on this discussion board and others whose surgeon has gone this route. Thanks for posting.
    Cheryl

    Are they visible on the PET?
    How are they tracking the nodules, and have they grown in 2 years? I had several spots that looked possibly suspicious, doctor kept an eye on them via PET for about a year. During that time, they were unchanging, and in the last scan they were completely gone. So whatever they were, I guess it wasn't cancer. My doctor would never have recommended HIPEC for those-it was definitely a wait and see situation. The only difference is that mine were in loops of small bowel rather than the peritoneum-maybe that would somwhow change the approach?

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