vtkb
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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.
Marion,
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.
-BillyI 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:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13739
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)?
-BillyTo 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
Lainy,
Other than the initial diagnosis of UC in 2007, its been in remission. Her last colonoscopy showed no signs of UC, which is what made this diagnosis (cholangio) that much more shocking. I for sure thought Kathy had just an adenoma after the initial ultrasounds results.
On another note, especially as black friday/cyber monday is here, I’m glad I found the link for amazon smile . Perhaps this weekend would be a good time to remind the community that using amazon smile can benefit the foundation?
Allison,
Have you sought out secondary surgical opinions? Im not sure how Canada’s system works, but if your family member has the means to travel to the US, some surgeons here may have a different opinion on inoperable or not. Kathy also has a suspected lymph nodes involved but we met some surgeons who are willing to operate on her after her chemo and rescan if it hasnt worsened. It will however depend also on how much liver is involved, and which blood vessels are involved also. In NYC Kathy is comfortable with Dr. Schwartz at Mt Sinai so we are going to use him for surgery, but I’ve also heard good things about Dr. Kato at Columbia University, to mention 2 names. I’m sure there are surgeons in Boston or someplace closer to Nova Scotia that may offer a second opinion.
-Billy
thanks gavin
yeah Im pretty sure Kathy does not fit transplant criteria here in the US, i was just seeing if theres another way
Thank you all for your input. We ended up going away for the weekend on a drive. Good to get our minds off things. Kathy doesnt read the website much either, I’ve pretty much read every post online., much like rwpavocat . Honestly I’m more worried that in the future she wont be well enough to go away, so I’d like to get as many trips in as possible, because otherwise i almost feel like we are wasting time if we’re just hanging out on our couch on a weekend when we are both off, although I know that’s not really true. As for the port, I think for now Kathy wants to wait and see if she can get the resection (rescan in 2 weeks) and then get the port after or during that surgery.
Anyway, thank you all for the info, our next thread will be in the discussion section now that we’ve been introduced to the site.
I just wanted to introduce myself to the group as Kathy’s boyfriend Billy. This cancer could not have hit a more caring, lovely and whole-heartedly overall good person, which seriously sucks. In the past month I’ve read most of the posts on this website, and for that I thank all of you who have posted. Even as a physician, I must admit my knowledge of this disease was extremely low (I just knew it = bad news) as I’m pretty sure I only had about 2 minutes of medical school covering it, if that. So thank you to all who are fighting this disease and continue to post , giving those who are newly diagnosed hope.
On a side note, are there any air travel restrictions for those who are undergoing gem/cis? I know the DVT risks but would like to travel with Katherine if possible next time we have a 3 day weekend…if shes up for it.
