MY CC is inoperable and incurable
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Dear Aroha,
This is Fay – one of your MANY, MANY, MANY cheerleaders on this site;);););) My mom’s oncologist said those exact words to her on Sept 29th/2017 – that her disease had progressed to stage 4 (in less than a year since her resection), and is now considered inoperable and incurable. She too was given 12 months to live……unfortunately she was not in very experienced hands from the start, which is why I believe, she progressed as quickly as she did…….we have an experienced oncologist now and she just finished cycle 3 of gem/cis and is tolerating it well.
I think it is fair to say that when the patient, as well as family members hear those words, you almost go numb. However, what I told my mom (after I got over the shock, tears, etc.) is that :a) they are generalizing and stating overall statistics, not to mention that every case is unique and different from the others b) As much as I respect oncologists, last I checked, they are not God and c) It is crucial to try to have a positive outlook as stress only lowers your immune system even more and increases stress hormones (eg cortisol) which together, will not be beneficial to your body healing.
I too would strongly encourage you to get a second, third, fourth opinion if you need to (but second opinion for sure). And not just from any oncologist, but one at a major cancer institute who also has A LOT of experience with this disease. Additionally, if they have not taken a biopsy already, ask your current oncologist to do that and send it off for molecular profiling (including PDL1 and MMR testing). You may be a candidate for immunotherapy and not even know it;) You yourself are your strongest advocate. Even though everything is a choice, please do not make any decisions without getting a second opinion, as well as learning more about your tumor itself via molecular profiling first. This way you can make more of an informed decision, with a lot more information at your finger tips.
Hugs,
Team Aroha member (aka Fay)
Glad you are finding a way to navigate all this and glad you feel a sense of community. A discussion group on line is such a limited way to express connections yet there is a power in it that many of us , including myself have found profound. Even though most of us will never meet, I feel your strong presence in my life.
Blessings,
Wayne
Thank you positivity i have learnt alot from this forum so much wonderful information that we dont get from our oncologist/experts, my oncologist said nothing would work for me but I have to try and see if it does or if it doesnt. I made alot of decisions outside this forum and now with these forums my decisions have change and i am happy with this. Without this forum i think i would be f*ck!d.
Hello,
I am responding to the post I made earlier as there was confusion. I am speaking of personal experience with my mom and not speaking for all. It’s important for people with CC to be aware of what is going on with other individuals experiences so we can determine what is going on in the oncology field with our disease. We chose not to have chemo/radiation and that does not mean this does not work for other patients with CC, and currently the oncologist said in her case it will not work. Again, this is our case and not necessarily for another CC patient. The same oncologist said immunotherapy will not work for her. That does sound negative and it is not my words, but the oncologist speaking. I hope this provided clarification for the post above. I want to be positive, but I must be honest and share with the forum what we are being told by oncologists. I also stress for everyone to choose doctors you are comfortable with and willing to try everything at their disposal. Immunotherapy, chemo/radiation has been a success for some CC patients. You will find with this disease it is very individualized.
I wanted to comment on the concern about cancer treatment and the risk of developing a second cancer due to that treatment. As several have noted, we were saddened when one of our board colleagues did develop a second, therapy-related cancer that seemed to stem from her chemotherapy.
Thankfully, this is a rare event. I do not recall any other reports of a therapy-related second cancer posted on this board. You can internet-search any treatment name plus second cancer and see some numbers on the risk – they will be tiny. Also, if a second cancer develops, usually this occurs some years after treatment, in these rare cases.
Our scans, our chemo, and our radiation treatments all can carry small risks of second cancers down the line. If you are concerned about such risks, this is a question to ask when discussing possible treatment. In my experience, doctors generally believe that the benefit of cancer treatments vastly outweighs such risks. Doctors are very aware of this concern – it comes up for example when considering the frequency of scans
In my own case as a patient, I have embraced every treatment offered. This is a tough cancer, and if I am fortunate enough to survive the amount of time it takes (in a small number of cases) to develop a second cancer due to treatment, that would probably be a better outcome than what would have happened with no treatment.
These are all very personal decisions each patient faces.
Regards, Mary
Hello Love4life,
your concerns are well understood and it is true since one on this forum did get MDS from chemo. My mom did not get chemo and already had a case of chronic anemia and did progress. It’s tough and better treatments need to be offered or alternatives to chemo.
From first hand experience and tough experience.
Hi, I have been on chemo for 2 years now, 6 month with Gemzar and Cisplatin and 18 months and still am with Gemzar. All cases are different.t but chemo for me has controlled the tumor. They also did transarterial chemo mobilization which is putting chemo drugs directly on the tumor through a vein in your groin. It is quite effective and they can do it numerous time if needed. You may want to ask your oncologist. Wishing you good luck.
Brigitte
hi ive also read comments where some people get MDS due to chemo how often or rare is this, this sort of scares me alot?
Hi-
It definitely is an individualized choice. Chemo is different for all. We have members who have been able to continue working while having treatments and others that it is harder on. In general, for someone your age compared to my Mom, it should be better tolerated since you are young. For my mother, the first cycle was very hard and she considered stopping. However, they were able to give her more fluids and steroids to help with nausea, and then she was able to tolerate very well. Her thought was that she could always stop the chemo, but she wanted to at least try . And, we were fortunate that between the chemo and radiation, she had 3 years of very good health.
Take care,
Catherine
Again just sharing the same, mom had no chemo or radiation and the tumor has now covered more space after a year. Chemo has no guarantees, but I’m sure it’s so individualized. We need more treatment options and should be the focus. There are still way too many limitations with oncologists and not many options. This is one year of tough experience.
Dear Aroha,
welcome to our wonderful group, although, of course, we all wish you had no need to find us. In my experience, the general medical centers have very little experience with Cholangiocarcinoma, and will give patients the statistics you mentioned. Essentially, palliative care. However, the medical centers that specialize in biliary cancers try to find ways to get the patient to surgery, or to newer treatments. I’m no familiar with which centers in New Zealand specialize in Cholangiocarcinoma. I’m hoping some of our members from NZ will chime in to point you towards them. Hang in there!
debbie
Thank you for your replies. I live in New Zealand, the chemo treatment offered to me is “cisplatin and gemcitabine” there may be some radiation treatment but that depends on my condition. Im now in two minds about doing chemo after reading your replies. Been googling too much and can see some cancers can be cured without using conventional treatment.
Dear Aroha,
In Nov 2013, my mother was told 12 months and if she did chemo, it would add another 3 months. However, after she went through 3 months of chemo, they decided to also do Y-90 radiation treatments. Although her cancer is back now, she had 3 years of treatment free life and we hope to do some more treatments and get her back into remission.
It is VERY important that you get opinions/consults from a cancer center that is familiar with CC . Just in the past 4 years, we have seen very may treatment options available. Although still a rare and horrible disease, many who even if not cured, are living with this more as a chronic disease. Please do not give up hope if there are options. Where are you being treated?
Best wishes,
Catherine
Hi Love4life,
Welcome to our discussion board. The Cholangiocarcinoma Foundation website contains a wealth of information for patients and caregivers, so I hope you will take a look around at the various resources.
Most everyone feels blindsided or overwhelmed by this diagnosis. Cholangio – what? Many are diagnosed with few prior symptoms, and by doctors who may have seen few or zero prior patients, as the cancer is that rare. Doctors who are not specialists may not be fully aware of treatment options. If possible, patients should try to be seen by an oncologist who has experience with cholangiocarcinoma, for example, in a major cancer center.
Survival statistics are often misunderstood. It is best not to focus on them, but since a number is out there, here is one way to think about it. The prognoses are usually given as medians, which mean that half will live longer and some will live much longer than the number of months or years mentioned. Think about reasons why you could be in the longer half – you are otherwise in good health, or you are getting good treatment, or you are determined and have a good family support system. The 12 months mentioned to you definitely is not an expiration date stamped on your forehead.
The decision to pursue chemo is a very personal one. Many cholangiocarcinoma patients do have good results with minimal or manageable side effects. This discussion board has quite a few patient stories you can look through to see a variety of experiences with chemo.
Please let us know how you are doing and send us any questions you have. This is a welcoming community with lots of experience and support to offer.
Regards, Mary
Yes I can relate. Inoperable mom and we did not choose chemo and there is nothing offered that will work. Now after a year I hear the hospice word again and so disappointing. We have a similar situation. Research and studies are slow and I was told immunotherapy doesn’t work. Who are the fortunate ones that it worked? They must not have had perihilar CC.
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