June 17, 2016 at 4:32 am #92460marionsModerator
ASmith…..they may only release the testing results to the treating physician. In any case, I would consider molecular testing with Foundation One or one of the other certified labs. Please note, a physician has to order the test.
Most likely, Art’s tumor tissue has been archived. Dr. Schwartz should have an answer to that.
MarionJune 16, 2016 at 3:10 pm #92454
Regarding molecular testing, I went back to the pathology report and saw this;
The following statement applies to Histochemical, Immunohistochemical, Immunofluorescence, In Situ Hybridization
(ISH or FISH), and/or molecular test(s) if documented as performed on specimens reported in this case: The test has not been cleared or approved for the specific use by the U.S. Food and Drug Administration. FDA does not require this test to go through prernarket FDA review. This test is used for clinical purposes. It should not be regarded as investigational or for research. This laboratory is certified under the Clinical Laboratory Improvement Amendments 1988 (CLIA) as qualified to perform high complexity clinical laboratory testing. All stains and tests are performed with appropriate positive and negative control reactions and all controls show appropriate reactivity. However, stains and tests have not been validated on decalcified tissues. Results should be interpreted with caution given the likelihood of false negativity on decalcified tissues. Certain tests utilize Class I
Analyte-Specific Re·agents (ASR); these tests are developed and
their performance characteristics determined by this laboratory. ASRs used in this laboratory have been established and verified for accuracy and precision. Additional information about this type of test is available upon request.
So I suppose that it would be available upon request?June 16, 2016 at 1:11 pm #92456Lainy wrote:DJust please make sure that the DOC you end up with is experienced in treating CC as it is still so rare. B
The only doctors we found who had actually had treatment history with cc was the one at Memorial Sloan Kettering. We did not like their approach, all of their patients needing treatment were put through the same protocol, and that differed from what our surgeon told us was the best way to go forward. I have to say here that Art really liked and respected our surgeon. He is the head of the liver transplant department at Mt Sinai, and he is the one doc who has seen more cc than anyone, I think. Our current oncologist, actually both (we still use the one in NYC as a consultant) have experience with liver and pancreatic cancers, and I think the NYC doc also has treated cc patients.
For something so rare, its strange that we personally, since Art’s diagnosis, have met 4 people who had this same thing. One woman’s son, in his 40’s is dealing with chemo, not a surgery candidate, and the other three had the tumor in the same place, only it was benign in their case. Once was a girl in her early 20’s.June 16, 2016 at 1:04 pm #92455marions wrote:Art’s weight will return to normal, but give it some time. You may find that he is sensitive to foods with high fat content and most likely he is plagued with indigestion, a common occurrence with biliary surgery.
I forgot to mention also that his appetite is good, its just the volume that is the limiting factor. He does try to eat all day long, which is what he has always done anyway. It is also amazing to me that he has no digestive problems with any foods, for someone with no more gall bladder. The only thing that bothers him still is cheesecake. But he can enjoy a cheeseburger. Go figure.
MarionJune 16, 2016 at 1:01 pm #92457marions wrote:You mentioned sugar-coating test results leading to a false sense of security. Would you mind sharing this experience with us?
Well, from the beginning, after we did get to see the radiologist report from his very first at scan, it clearly said that it was most likely Klatskin tumor. Both gastro docs declined to share that with us as they sent us off to the surgeon. Of course, we didn’t press them either, I’m sure we were scared to ask. Our experience has been that a decent percentage of these doctors are uncomfortable with just how to handle life and death situations with patients, especially new patients.
After Art’s surgery, the words that I will always remember were “just a microscopic trace” on the path report. Now, its true that all his tested lymph nodes were clear, but there was something in the path report that concerned our current oncologist, “Lymphovascular invasion and extensive perineural and intraneural invasion are present.”
I am wondering: has Art’s tumor tissue been tested for molecular alterations?
I asked about that once but if I remember correctly, the oncologist in NYC told us that there are no studies to help so it would be of no use. We will ask this new oncologist when we meet him for follow-up after his PET scan next week.
MarionJune 15, 2016 at 11:07 pm #92459marionsModerator
Lorri…thank you for the extensive introduction and welcome to our site. Most importantly, congratulations on the successful surgery. I hope that Art had a quick and uneventful recovery.
Of course, you are rattled by the events leading to diagnoses, subsequent surgery, and follow-up treatment. You were caught in an unexpected whirlwind of happenings, but you conquered and you are here to tell us about it.
You mentioned sugar-coating test results leading to a false sense of security. Would you mind sharing this experience with us?
You are correct, Lorrie, patients must make major life decisions based on little information in a short period of time. Unlike the major cancers occurring in a wide patient group, cholangiocarcinoma is little understood. We lack a better understanding (on a molecular level) as well as treatment options leading to optimal patient response. However; unlike the previous years when cancer was classified by origin, today’s cancer research is focused on faults within the genes across all diseases. This is why you see clinical research studies including patients with breast, lung, ovarian, pancreatic, colon and other disease specific cancers combined in one specific trial. This is a huge development for cholangiocarcinoma as historically few drugs were investigated for our cancer. Personally, I see a brighter future for our patients and one that Art may benefit from as well.
I am wondering: has Art’s tumor tissue been tested for molecular alterations?
Art’s weight will return to normal, but give it some time. You may find that he is sensitive to foods with high fat content and most likely he is plagued with indigestion, a common occurrence with biliary surgery. Our great members are here to help you navigate through these issues, please don’t hesitate from asking questions. Someone within this group will share information based on personal experience.
Again, thanks for joining in. Although; we wish it had been for different circumstances, we are happy to have you on board.
MarionJune 15, 2016 at 9:53 pm #92458lainyMember
Dear Lorrie & Art, Welcome to our most remarkable family but sorry you had to find us. Know that you have also come to the best place to be for CC support. Do not question yourselves as you have totally done all the right things. You have seen several Doctors and with that already gained a ton of knowledge which by the way is the best way to fight CC. Knowledge! Yes this CC is what we call a roller coaster ride. Just please make sure that the DOC you end up with is experienced in treating CC as it is still so rare. Below is a site I hope you find helpful and please do keep us updated on Art as we truly care.
http://cholangiocarcinoma.org/newly-dx/June 15, 2016 at 5:08 pm #12528
My husband, who will reach his 70th birthday this August, had a bad night last Oct 5th on our anniversary. He thought I tried to kill him with a piece of cheesecake. We were held up late at work (we work together) so we decided against eating out that night. So we picked up something and I got a Costco cheesecake and we ate at home. That night he had severe gastric pain and felt like he had a bowling ball in his stomach. Since we were scheduled for our annual physical in three weeks he planned on letting the doctor know then. He continued to have gastro issues however, and so made an appointment a few weeks later just for this. She took blood and gave him some Prilosec – both of them thinking it might be an ulcer. That was on a Friday, and on Monday morning she called us at work and told him to go to the emergency room because his liver function was through the roof.
We did go and they did bloodwork and one CAT scan. We had an appointment with our gastroenterologist the next day. He also ordered more bloodwork and scheduled him for an endoscopy. By then, they knew that they were dealing with an obstruction in the bile duct area where the two joined. The endoscopy was unable to reach the blockage, but did take some tissue samples from nearby lymph nodes. The then attempted an ERCP for a biopsy but had to stop it when the instrument punctured the duodenum, resulting in his having to stay in the hospital for 3-4 days. This was not good, weight loss wise. When he was cleared to leave, our gastro told us that he was sending us to a surgeon in NYC. We then saw Dr Myron Schwartz at Mt Sinai in NYC who operated on my husband on Nov 30th. After the surgery that they said went very well, we got the path report indicating some positive margins on two of the 4 bile ducts remaining. Just microscopic, they said. We told Dr Schwartz that we would like him to refer an oncologist, but in NJ where we live. He did not know any doctors in NJ so we said we’d look ourselves. I found one who had experience with cc at Memorial Sloan Kettering. We did not like their “cookie cutter” approach (everyone gets the same protocol no matter what) so we went back to Dr Schwartz and got a doc from Mt Sinai. Dr Max Sung agreed with Dr Schwartz that radiation or chemoradiation was appropriate for the first step. We arranged to have him complete that here in NJ. We then went back to Dr Sung for follow-up but after waiting 3 ½ hours to see him for 10 minutes, we told his nurse that we could not handle the hardship of going into the city and then wasting all day there. We have since gotten a third medical oncologist back here in northern NJ in the same building where his radiation oncologist practices. We have seen this new oncologist once (last week) and he has ordered a PET scan for next week. Because of some notations on the path report he told us that my husband was in the high risk category for reoccurrence. His CA19-9 bloodwork has been going down, after a small spike after chemoradiation (which the nurse reassured us could be the dead cancer cells expressing themselves in the blood sample). It was 200 before surgery, 19 after, and then 40 after radiation. Last week it was 22.
So we are cautiously optimistic at this point, although still very rattled. His history of Hemochromatosis is what we believe led to this. Although we discovered it about 15 years ago and he deironed that year, we think the damage had already been done. He was in a clinical trial monitoring HH patients at NIH in Washington DC and when we let the Doctor running this trial know about the recent events, she agreed that it was definitely a link.
What I have learned so far is that many doctors are afraid to be up front with you. Some sugar coat test results and put you into a false sense of security. At the beginning I was vaguely aware of this but too afraid to ask right out. We have been getting all test results and reading them ourselves so we weren’t too influenced. From what I’ve read here, it is so true – the highs and lows. The other thing that bothered me is that as a non-medical person, you are put in the position of making the most important decision of your life, and in a very short period of time. Every doctor seems to have their own protocol. With Art, my husband, this new oncologist indicated that he would have done the IV chemo first, and then the chemoradiation. He has been the most blunt with us, and at this point, I think I appreciate that.
Right now our main goal is to get his weight back up. His normal is 170 and he’s been around 150 since gaining 10 back after the surgery. The weight gain stopped during the 28 days of chemoradiation.
Well, I think that about sums it up for us. Art will be posting his questions later on, but I wanted you all to get the background story.
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