Hi from Australia – synchronous CCA diagnosis (dad)
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Hi Nick,
Thank you for sharing your father’s story. Reappearance of the cancer is hard psychologically after recovering from surgery, but the better news is there are a lot more treatment options now than even a few years ago. As others have noted, although BRCA2 is a rare mutation for cholangiocarcinoma, there are clinical trials and research seeing if PARP inhibitor treatments used for other BRCA cancers can be effective for cholangiocarcinoma.
I see on ClinicalTrials.gov there are some PARP inhibitor trials in Australia but I saw only maybe one that might be open for all solid tumors. The medical jargon was beyond my laymen’s knowledge, plus the U.S. trial registry may not list all relevant trials in Australia, so I am regretfully not a very good judge of what might be available. Your father’s doctor should be able to help him navigate clinical trial options or possibilities for compassionate or off-label access to PARP inhibitor treatment if the medical professionals believe it might be helpful in your father’s case. There may be other treatment options they see as good ones in his case.
Palliative care is about alleviating pain and treatment side effects, and can be beneficial for any cancer patient receiving treatment regardless of prognosis, so please don’t be overly worried if it is mentioned.
Regarding Hannaha’s observation about traffic on this site, I also wish it was higher. We do have a lot of readers. It is really helpful to patients and caregivers to have a searchable bank of patient stories to look at, which is not as feasible on FB or other social media platforms. So I do hope more of our readers can take a few moments to post their own stories. I spent a lot of time searching stories here when I was diagnosed, and patient stories were helpful for me in understanding this rare cancer and what to expect from treatment. So thank you again, Nick, and please stay in touch.
Regards, Mary
Dear Nick,
Please do keep us in the loop. I hope that the BRCA link bears some fruit for you, and that there are other options as well.
This board has been quieter than it once was. I think a lot of discussion has moved to FB groups and similar. There is a lot to be gleaned in those communities as well, although I find them a little stressful as many of the posters are working their way through the first shock of diagnosis. The CCF as a whole (and the discussion board, by extension) feels to me more like a long-term resource for support. Even if the board seems quiet, there are, I think, a fair number of people who lurk, and it has been really helpful for me to learn about how people’s treatment processes have played out over time. Please do drop on by here with questions or just to update us.
Hannah
Hi Hannah,
Thanks so much for your lovely note and comprehensive response. I too am very sorry to meet you here however it is comforting knowing I am not alone and neither is my family, in our unfortunate battle with this cruel cancer. My sister’s father-in-law died suddenly in 2019 and I keep reminding myself that in his case, neither he nor his family had any time together at all – it was instant. Every day that I wake up with a father is something to be thankful for. I hope he gets his spring in his step again and mentally hits this hard – I have no doubt it is critically important for cancer battlers to stay optimistic and mentally tough.
I am really glad to hear that your mum is doing well and living with the beast as well as possible. I hope that continues for many, many years ahead.
I have been researching the BRCA2 mutation relationship with BTC and there certainly are links – which may or may not give us other options to explore for different treatments.
Thanks again Hannah, I hope to remain in touch with you, and all the best to your mum and whole family.
Best regards,
Nick
Many thanks indeed – I have put this on the list of discussion items for his oncologist appointment on Monday next week.
Best regards,
Nick
Parp inhibitors have shown increased effectiveness in those with BRCA family mutations- something to talk to your dad’s oncologist about.
Hi Nick-
So sorry to “meet” you here. Reading your family’s story reminds me so much of our family’s story. If you look through my old posts you can get the detailed version, but the short one is: my mom (who like your dad is otherwise in great health) was diagnosed in Aug. of ’18. She responded brilliantly to gem/cis, had resection in Feb of ’19, more chemo for mop-up, and after a year of living “cancer free” there were new spots in her ct-scan in regional lymph nodes. Anyway, the good news is that here we are and it’s July ’21, and she’s out living life, going jogging most days, healthy and happy. We of course live in fear of her regular CT scans, but for the present she’s had great success with Tibsovo/Ivosidenib, which is a targeted therapy for patients with IDH1 mutations, and her cancer has remained stable. I know it is horrible to have this cancer return. We also wanted desperately to free ourselves from this cancer. But we are really grateful to find that, for now, we are able to find ways to live with this beast. I hope your dad is lucky in finding an effective treatment this time around.
You mention that you’re undergoing genetic testing. I am hopeful that they will uncover an actionable mutation there. I know there have been some studies re: BRCA2 and cholangio, although I don’t remember the details. It would certainly be a good idea to read up on it (don’t necessarily trust that your doctors will know about it… you are going to have to be your own expert here). Please let us know what you learn after the testing results return.
What you say about family heredity is interesting. In our family, my great grandfather was known to have died of “pancreatic cancer” sometime mid-century. I wonder whether it is what they claimed it was, since until recently bile duct cancer was usually misdiagnosed or given a vague “cancer of the upper abdomen” type id. The pancreas being adjacent to the liver, it makes me suspicious. My grandmother (daughter of the great-grandfather just mentioned), who lived to the grand old age of 94, was diagnosed a year or two before her death with a “thickening” or perhaps mass in the common bile duct. This was never investigated further because of her age and her death did not appear to be bile-duct related, but it makes me wonder if our family has a predisposition.
Hannah
Hi everyone,
I tried to sign up on the forums last year but didn’t have success. Had hoped to be able to turn my back on Cholangiocarcinoma at the end of 2020 but here I am.
I’m a 39 year old man in Australia and my father has CCA at age 69. He was first diagnosed last July at age 68 by sheer fluke. He has previously had an enlarged (benign) prostate and therefore has regular tests. Our family GP actually picked up that dad’s liver enzymes were elevated and ordered further exploration.
The family didn’t get too worried until we heard the dreaded C word for the first time and then googled it. What nightmares are made of, right?
When further exploration was done, it was found that tumours were in the left side of the liver, with some lymph node activity. He was absolutely borderline with regard to having a resection as an option. He responded famously to chemotherapy (apart from his veins in his arm regularly collapsing and hurting) which was the commonly prescribed gemcitabine and cisplatin (3 weeks on, 2 weeks off from memory).
In November 2020 he was given the go ahead for a resection. Around 75% of his liver was removed and 12 lymph nodes. The surgeon could barely find evidence of the cancer in his liver (still performed the op as planned), and cancer was detected in one lymph node. He had a few rounds of chemo afterward to be on the safe side. No complications from surgery etc.
Christmas and the first half of 2021 was fantastic, given we had received the best possible news that there was no evidence of cancer, despite the qualification that CCA is notorious for coming back.
Fast forward to one year almost to the week, after his first diagnosis, and dad has elevated liver enzymes again.
Exploration was undertaken and a stricture was found in the bile duct. The pathology company came back with a “no cancer – scar tissue” result – the surgeon disagreed and ordered another pathologist to investigate – who came back and said microscopic evidence of cancer was in the scar tissue (very concerning of the pathologist to mess that up – wonder how often that happens).
Anyway a stent was inserted into the bile duct during that procedure, and over the last few weeks the surgeons and oncologists have been meeting.
This week, after deliberation, they have undertaken RFA as the cancer appeared to be under 3cm in length, and chemo will follow. Unfortunately as many medical specialists have a tendency to do, they delivered matter of fact news to him to say the RFA went as planned but is no way a cure, and that he will likely need it every 3 months and chemo regularly for the rest of his life. “Palliative care” was mentioned, which has really shaken dad, my mum (69yo), sister (41yo) and me. This diagnosis is being referred to as synchronous not recurrent.
Reports I have read, show that RFA has positive outcomes, I’ll hang onto that for now.
We aren’t going to give up hope, and I’ll keep you updated. We just hope he responds well to the chemo again, and if we had a few more years with him, and he has them with us and his 4 grandchildren with a decent quality of life, who knows what drugs may come out etc.
I’ve raised Keytruda with his oncologist a few times and it’s been considered but dismissed. Will keep looking into other options and trials. I do wonder about it still.
The worst part is that my dad looks 50, is otherwise extremely fit and healthy, and has a really wonderful family and life. It’s just not fair is it.
Anyway, of potential interest to others – we have always been told that CCA is not hereditary however, my dad’s first cousin was battling CCA for 3 years, unfortunately losing it earlier this year (which also makes it hard for dad to be optimistic). Dad and his cousin have lived in different states in Australia for their whole lives, which rules out anything environmental. There has to be a genetic link. This cancer is so rare, it would be an amazing coincidence if not.
Dad and other family members have the BRCA2 gene mutation, which dramatically increases the risk of cancers mainly in women (breast, ovarian etc.) but I do wonder if years from now we will see a common link between BRCA2 and CCA. Our family is currently undergoing genetic testing to determine who else has the faulty gene. Im waiting on the results myself which is nerve wracking.
I guess we all just have to be thankful every day we wake up. The thing which tears me apart is seeing how flat my mum and dad are. I am a problem solver and whenever there is an issue in my family, I like to find a solution. This situation is one which I can’t let defeat me, but keeping hopes and spirits up for others is a difficult thing to do when I am mourning and fearful of losing my dad myself, and my mum losing her soulmate.
I’m hoping this forum will give me a bit of a place to talk.
Anyway, that’s me and that’s our predicament. Very familiar for many of you I am sure.
Keep fighting,
Nick x
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