April 10, 2017 at 2:08 am #93606
Kathy already updated her surgery story under another thread, but in case anyone was searching for HIPEC and sees this thread the surgeons ended up not performing HIPEC during her procedure because they didnt think Kathy had any peritoneal spread of disease (the omentum and peritoneal node were negative on initial and final path reports). She did end up with one positive lymph node (periportal, one of the 2 removed) though according to her pathology report.
Thank you all,
BillyMarch 11, 2017 at 12:09 am #93605
Billiy….thanks for sharing. We have few reports on HIPEC none of which have been reported from patients within the US. Fingers and everything crossed for a successful surgery.
MarionMarch 10, 2017 at 10:14 pm #93604
Just to update/close this thread (Kathy posted in the Gen discussion a more detailed account of her latest update)- we ended up meeting with Dr. Kato who did not think HIPEC would offer any benefit and was willing to operate ASAP, but Kathy decided to wait the extra month and thankfully Dr. Schwartz and the Hipec team at Mt. Sinai are willing to resect now also as Kathy’s last scan (Feb) showed even more shrinkage. So after 5 months of neoadjuvant chemo, Kathy will finally be operated on. In our last meeting we tried to ask if they were willing to perform the HIPEC regardless of node status as a prophylactic measure, but the HIPEC surgeon said they will only do the HIPEC if there is evidence of disease outside the liver (although if there is frank peritoneal spread/metastasis on initial laparascopy the resection/surgery will be stopped just like in all cholangio cases). Hope this helps explain our HIPEC options to anyone else who is presented with it.
-billyDecember 20, 2016 at 2:17 am #93603
Billy……it appears that the surgeons are looking for the most optimal time to resect hoping to achieve the best possible i.e. curative outcome. In this case, the doctors recommend neoadjuvant treatment with chemo before surgery to try to shrink the tumor. Then, if the cancer shrinks, surgery can be done to try to remove all of the cancer. It seems plausible to me that they are awaiting further shrinkage then what has been achieved so far.
You are so right in wanting this “dam thing out” but getting it out may not “be getting it out” if and when residual disease continues to drive this cancer.
In any case, you are pursuing all available options and not too much longer you will have more precise answers to your questions.
Hang in there, dear Billy, as you know this cancer is puzzling and situationally based. What works well for one patient, may not necessarily transfer to the next patient.
I hope you and Katherine can relax for the Holidays. I realize it’s not easy (I have been there with my husband) but ultimately worrying now and the next few weeks does not change the situation.
Katherine is young, otherwise healthy and has an incredible partner in you.
Sending tons of good wishes your’s and Katherine’ s way.
MarionDecember 20, 2016 at 12:10 am #93602lainyMember
Dear Billy, Never apologize for writing us anything! It DOES help think things out on this Board. Besides, writing is very cathartic. I think the important thing to remember is that you do have options and soon, hopefully you will have some answers that will help steer you in the right direction. You are with excellent Doctors! We LOVE the shrinkage word and I want to wish you continued success on your progress.December 19, 2016 at 11:50 pm #93601
We havent met with Dr. Kato yet, but will ask those questions to both him and the surgeons we are currently consulting with. Kathy initially was seen at Sloan, and then we got a second opinion at Mt. Sinai, where Kathy felt very comfortable with Dr. Schwartz. Considering both (at the time) as well as the tumor board at Fox Chase agreed that Katherine was resectable but wanted to try chemo first to clean up whatever microscopic cells they might miss (and probably to make the surgery easier for clean margins I’d presume), we agreed with the plan. Dr. Schwartz pushed for earlier scans which thankfully show some improvement (as do her CA19-9 numbers).
Today Kathy went to Sloan- her oncologist (we do chemo at sloan) spoke with the surgeon at Sloan, who asked for Kathy to continue treatment until end of January and rescan then to see if can operate. Her oncologist was a bit surprised that the surgeon didnt want to operate now, but we didnt get a chance to speak to the surgeon. – so that is option 1
She also spoke with Dr. Schwartz, and we will have an appointment with the doctor who delivers HIPEC next week. After the scan Dr. Schwartz told us he’d like 4 more months of chemo to then do HIPEC, in the hopes of turning what historically has a poor survival outcome (surgery with positive abd lymph nodes, high ca19-9) into a higher chance of long term survival. He said they have done this with a few cholangiocarcinoma pts at Sinai. We will try to see if it can be done sooner, but this is option 2.
We sent the scans to Dr. Kato last week and are awaiting his response. His course of action would be option number 3.
As tempting as the “just get this damn thing out of me” is as an option, we’d like to hear out the HIPEC surgeon and Dr Schwartz and see why they want to wait so long, how many cholangio patients they’ve worked with that had Hipec and what the results were. I’m also not sure why/if HIPEC requires such a long pretreatment chemo or if we can push it up. Im guessing its to try and kill as much as possible bc once surgery happens you cant have chemo for a few weeks and the resistant cancer cells will now grow, sort of like the reason you have to keep taking all your antibiotics for a full course even if you feel better earlier than the prescribed course. I think the biggest fear with option 1 (no hipec, surgery sooner) is having resection with residual disease, and subsequent high chance of recurrence, while the fear with option 2 is having a met occur while waiting on chemo, or the hipec not working.
sorry for rambling just trying to think this whole thing out.December 19, 2016 at 7:21 am #93600
Billy…..it’s best to ask Dr. Kato, -who will respond promptly- as to why surgery may or may not be recommended at this time. Is it a matter of shrinking the tumor away from major blood vessels? Is it to achieve clean margins with surgery. What is the advantage of a resection when there is residual disease?
Perhaps the surgeons want to make sure the other lymph node is necrotic?
Following the phone conversation with Dr. Kato, you will be much more informed.
Best of luck to you and Katherine and tons of good wishes are heading your way,
MarionDecember 19, 2016 at 3:12 am #93599
Katherine’s tumor showed a 1 cm shrinkage of the main tumor, plus 2 abdominal lymph nodes shrinking, but one other lymph node in the chest staying the same size. So overall good shrinkage, but we were hoping for a surgical opinion of lets resect sooner than the response we got of lets try chemo a little while longer. That being said our surgical opinions are coming from Sloan and Mt Sinai, and we also reached out to Dr. Kato at columbia … if presented with the option for resection now (but no hipec) with Kato vs the current option of waiting longer to do resection +HIPEC (but taking the risk of developing a distant met), Im not sure which choice is better.
-BillyDecember 18, 2016 at 2:35 am #93598
Billy…..neoadjuvant includes addressing measurable disease i.e. decrease of tumor burden, hence most of the reports will not use the neoadjuvant terminology. What you will see instead is reports on treatments with the hope of a resection. You mention Kathy’s response was positive, does it mean there was shrinkage?
MarionDecember 17, 2016 at 5:37 pm #93597
I tried searching through this section and others to see about neoadjuvant therapy, but most were re: transplant. I did find this one from Gavin posted on page 5:
but it was with chemoradiation. Kathy is just doing chemo as a neoadjuvant. I wonder if anyone who went straight to surgery when offered chemo first regretted not getting the chemo first to shrink the tumor and zap the microscopic cancer cells ?
Should we push for radiation in addition to the chemo (according to the first scan Kathy’s responsive to chemo which is good news)?
-BillyDecember 14, 2016 at 9:50 pm #93596
Katherine…..the tumor shrinkage is demonstrating response to treatment, great news and good reason to think for metastases to be kept at bay.
We don’t have previous postings regarding HIPEC and I hope for someone to come forward and share his/her experience with it. I know it’s used for other cancers.
I learned that experts disagree in their approaches, perhaps you would want to consult (again) with the other 2 surgeons.
Again, congratulations on the tumor shrinkage, you are doing great.
MarionDecember 14, 2016 at 1:23 am #12826kbyrnzParticipant
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.
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