March 27, 2017 at 3:20 am #94225
She had her surgery at Vancouver General Hospital (excellent surgeon). And she is a patient at BC Cancer Agency (where I am unhappy with the person overseeing her care). We will likely either have to find someone else there, or, go to a private oncologist in Vancouver, BC.
xoMarch 27, 2017 at 2:02 am #94224
Faye….thanks for the explanation. I have been told (by a Canadian physician) that unlike the US, the regional cancer centers are highly trained.
Where was your Mom operated on?
MarionMarch 27, 2017 at 1:48 am #94223
Dear Mary, Marion and the rest of this incredibly caring CC family,
Thank you all for your input. I have reviewed the SWOG S0809 protocol and suggested it to my mom’s oncologist – and I just felt shut down by him. This is despite me mentioning the positive trends that were noted amongst patients with positive margins and lymph nodes, and we have both of those. We were not even offered the option of any clinical trials. There was mention of cis/gem and that was about it which I am not keen on since I am all too familiar with the SE of those drugs. And prefer the SWOG S0809 protocol or some derivation of that.
My mom lives in Vancouver, Canada. I brought her here to Seattle to get a second opinion at SCCA (I paid out of pocket but she is worth every penny). She is set on staying in Vancouver, so at this point, I have to scramble to find someone who is willing to work with us. Versus watch my mom just progress to stage 4.
Thank you all SO much for your love and support. I read and reread some of your messages over and over again because I value your input. And just knowing that there are people who care, means a lot.
FayMarch 27, 2017 at 1:11 am #94222
Fay….Mary provides a good example of how some physicians think out of the box (so to say.)
If I were you, I would contact a center treating a high volume of Cholangiocarcinoma patients or, a medical research center comprised of a tumor board. Of course, you must check with your Mom’s insurance, but if the consulting center is outside the network, you may be asked to pay for a consulting fee.
Given you location, I would consider UCSF San Francisco. Here is the contact information:
Brian J. Schillinger, RN
UCSF Medical Center San Francisco
New Patient Navigator
1825 Fourth Street
Suite M4279, Room M4212
San Francisco, CA 94143
Also, you should have received the genomic tumor testing results.
MarionMarch 27, 2017 at 12:18 am #94221bglassModerator
I am so sorry you and your mother are not getting the support you need from your medical providers.
Your doctor’s assertion he cannot consider adjuvant or further treatment due to lack of evidence is concerning. Because this is a rare cancer and because our health system is very decentralized, there simply are not (and may never be) volumes of statistically strong studies with definitive results. For many, our treatment will be part of the research effort, for example, participating in clinical trials. There is a difference, however, between negative evidence (e.g., that a treatment won’t work) and lack of evidence.
My impressions of the doctors who have been treating me is they combine the limited evidence out there for cholangiocarcinoma with what they have seen with other related cancers (e.g., pancreatic), plus the experience of other doctors they consult, plus their gut feeling about the patient at hand, in making their recommendations.
In my case, I was offered adjuvant treatment (chemo plus radiation) starting two months after resection based on a study called SWOG S0809. This study excluded intrahepatic cases and only focused on extrahepatic CCA and gall bladder cancer. My case is intrahepatic – nevertheless, my doctors recommended following the same approach adapted to my case because the SWOG S0809 showed effectiveness for patients with R1 resections or positive nodes, and my case while R0 involved a very slim margin, unexamined lymph nodes and other high risk factors. If you read the study, while it is not randomized, it is persuasive that the protocol carries a benefit for many patients. The alternative adjuvant treatment mentioned to me was one (chemo only) that showed effectiveness in research for pancreatic cancer.
Here is the citation for SWOG S0809 in case it is of interest. The study is also discussed in a webinar on this website presented by Dr. Abby Siegel.
This cancer is like being sent back to school. Sometimes I feel like I am researching term papers. This website has a lot of good info you can take to your doctor to look at if you think he is missing needed information.
Best wishes and prayers as you seek better treatment options.
Regards, MaryMarch 26, 2017 at 10:17 pm #94220
Great Fay! The worst part is not having a supportive medical team, no matter what route you choose. I eliminated one oncologist due to not agreeing with some of his suggestions and overall not comfortable with him. He was also pushy which is not a good characteristic.March 26, 2017 at 4:27 am #94219
Thank you. We had another appointment with him. He is so set on the lack of evidence that I think he just wants to ‘monitor’ my mom. Meanwhile she has stage 3 cancer. I feel overwhelmed by him and am asking around to get another opinion from someone who will work with us.
FayMarch 13, 2017 at 4:24 pm #94218
Please Fay, Don’t settle with an oncologist who is unwilling to work with you. Don’t be afraid to get several opinions. I had to turn down a couple of doctors for personal reasons and it was the best decision. I definitely don’t like pushy doctors who only see one road or very narrow minded.March 11, 2017 at 6:47 am #94217
Thank you. We had our oncologist appointment and our CTs are clear however, there is a large fluid collection that needs to be drained. This is also unfortunately blocking the ability to visualize certain portions of her CT so we’re not really sure if she is in the clear.
Also, the oncologist seems to be leaning more towards no adjuvant treatment which makes me nervous in view of her positive boarders and one positive lymph node. He keeps saying that the evidence is lacking which I’m fully aware of, but just bc there is no statistically significant survival benefit doesn’t necessarily mean we just sit on it. I’m getting tired of dealing with physicians who don’t seem to want their patient to fight as hard as possible. I’m almost tempted to find another oncologist.
FayMarch 6, 2017 at 7:43 pm #94216
I totally understand as my mom got pancreatitis and prolonged her hospital stay from an ERCP and finally went away, but it took time to heal. That is always my fear with ERCPs, but she still needs them.
Good for you in asking for molecular profiling.
Keep us posted.March 6, 2017 at 2:02 am #94215
Fay…… So sorry to learn of the many unfortunate circumstances converging at once. Hang in there, dear Fay, the scan results will shed some light on the situation and dictate the next step of action.
Please keep us informed.
MarionMarch 5, 2017 at 9:11 pm #94213
I don’t believe the surgeon was aware of lymph node involvement prior to taking her to the OR. And the boarders being positive was a microscopic finding and I’m guessing not visually apparent during surgery. Unfortunately she was an overnight case so a pathologist was not available during the procedure to assist in determining how much tissue needed to be removed.
Additionally her pancreas was still quite inflamed which made surgery more challenging.
The pain, I believe is likely secondary to the perineural invasion as well as possible ongoing pancreatitis (she developed acute pancreatitis post ERCP) as well the surgery itself. The CTs will clarify this for us hopefully. The pain is steady and constant but there as an element of gastroparesis post ingestion as well. She has metoclopromide but that does not help much. I will tap her in with the pain service because the pain is her biggest cause of unhappiness at the moment.
And yes I have requested for molecular profiling to be conducted. As for the constipation, I put her on docusate 200mg BID and senna 2 tabs QAM and it is helping with her BMs. If I have to add something else, I was thinking about miralax. Thank you for being so kind and supportive.
FayMarch 5, 2017 at 6:36 pm #94214
Fay…..prior to the whipple procedure, was the surgeon aware of the positive lymph node as well as the extend of tumor invasion?
I agree, your Mom’s pain has to be addressed, immediately.
Also, has her tissue been tested for molecular alterations?
As mentioned, mucinous CCA is extremely rare. I wonder how many specialists actually have come in contact with this type of CCA subgroup?
Agree, dear Fay, the pain has to immediately be addressed. Is it a steady pain or does it increase following food intake? Does she have regular bowel movement?
Sending tons of good wishes your way and hoping for the upcoming appointment to shed more light on the situation.
MarionMarch 5, 2017 at 5:55 am #94212
Thank you so much for your very kind reply. It’s nice to have this type of support when you’re going through something so emotional. I read the article, and am trying to be hopeful, but unfortunately my mother’s case progressed to stage 3 mostly because of provider negligence as far as I am concerned. So I don’t think the surgery alone was sufficient since we have a positive lymph node, positive margins, perineural invasion as well as tumor extending beyond the walls of the bile duct and into adjacent tissue.
As for my mother herself, she is in a lot of pain which is concerning but she just repeated CT scans and her oncologist will be reviewing those with us on March 6th. I will also ask for a referral to the pain service I think since her level of pain is unacceptable. I don’t even know what the next steps will be since we are dealing with a low grade cancer, and low grade tumors tend to be even less responsive to chemo. So I’m scared and I don’t sleep at night. The most frustrating thing is that I am in healthcare myself, but can’t do anything to help her other than advocate for her and provide emotional support.
FayMarch 1, 2017 at 11:35 pm #94211
Fay…..I believe this is the first case of the rare histological type of cholangiocarcinoma reported on this site. According to this article, your Mom should do well.
How is her surgery recovery coming along?
- You must be logged in to reply to this topic.