PBC and bladder cancer

[jrobertson1]

Hi. Has anyone here with PBC also been diagnosed with bladder cancer? Have had tumour removed and awaiting treatment plan possibly chemo using mitomycin into bladder or immunotherapy using BCG Wondererd if options might be limited due to having PBC?

[Hidden]

I had colon cancer treated with surgery, chemo and radiotheray. The liver specialist wrote in his referral that for the purpose of surgery i could be regarded as anyone without PBC. With hindsight, I wonder why he did not say same to radiology and chemotherapy. It is worth asking if the "belt and braces" approach, (surgery and adjuvant chemo-rad) is absolutely necessary in your case IF it was a primary tumor the margins are sufficiently clear and the ratio of lymph nodes positive for cancer is favourable. I'm not a doctor, just a survivor of treatment, but it is something I would ask with hindsight. Best wishes for you to remain positive and be strong to put up with this part of your life at present.

[jrobertson1 in reply to Hidden]

Thanks for your advice. I will certainly use this when meeting to discuss possible treatments. Best wishes for the future.

[Hidden in reply to jrobertson1]

I'm really pleased if this helps. If nothing else, a puposeful question will get an answer that informs you more than you would have been had you said nothing. I am learning from this site to be my own advocate and to think about what is offered to me. I'd want to do an awful lot of investigating to go against the advice of doctors I trust, and I'd want to make myself as sure as I could be that if I went against advice, I would have a plan of my own that I was happy to live with if it turns out not to have been the best plan. It's a hard road. But the best we can do.

[2bear]

hi sorry about the bladder ca. We’re u thinking it is related to having PBC or just seeing if treatment because of PBC is different .. were u having any symptoms beforehand - blood in urine etc - has there been to ur knowledge any info regarding Urso and its relationship to bladder cancer. I wondered about if there was a relationship .. take care.

[jrobertson1 in reply to 2bear]

Probably both. Wondered how common it might be to have BC and PBC also what the experiences were of anyone who did. Seems it is not common as only 2 replies. Waiting for stage and grade of tumour before treatment is decided. Will make sure I investigate effects on liver of anything on offer.

[2bear in reply to jrobertson1]

Hi and thanx for responding. - the number of replies u got may not have anything to do with whether there is a connection between the two , the Urso etc. the funding has to be there for the research to happen. Probably best to direct this to PBC foundation Robert to see if the question can reach the best possible practitioners to note this and review and offer whatever they can. Do u agree ?

[billhunter]

Interesting. Diagnosed PBC 12 years ago. December 2018 diagnosed bladder cancer. Fortunately superficial and low grade. Tumour removed. Check in April required a biopsy. Biopsy was clear of cancer so not needed for recheck till December, but Ca deposits found (kidney stone found in December from CT scan).

I also have high Ca in blood (hypercalcaemia).

Personally I think that PBC and bladder cancer are coincidence. But am intrigued if there is a Ca connection between urology system and liver (PBC can cause osteoporosis). Sorry to rant on.

[Hidden in reply to billhunter]

Hi billhunter, may I ask, do you take any supplements and were any prescribed when you were diagnosed with PBC? Do you also have gall bladder issues?

[billhunter in reply to Hidden]

Thanks for your interest. I have always taken cod liver oil, and vitamin c and zinc, both of which I thought were harmless. Gall bladder? - not that I am aware of. Many thanks.

[Hidden in reply to billhunter]

billhunter - thank you for your reply. I'm interested to read that you have hypercalcemia and that you do not take Vitamin K. I wonder if it would correct the high Ca. I have no diagnosed gallbladder issues, yet scans show stones. I do sometimes have upper right quadrant pain. I have seen many people on this site say the same. So much to ponder!

[billhunter in reply to Hidden]

Yes I wonder too. I've started the k2 book!

[jrobertson1]

Hi Bill. Not a rant at all! The link between Ca urology system and liver is interesting. I swear I passed a gallstone and was also told I had a few small ones after a scan of liver, gall bladder etc. GP says he was not told this but I definitely was at the time. I don't take calcium or Vitamin D tablets as I was worried they were causing deposits

[Hidden in reply to jrobertson1]

jrobertson - further from billhunter's post, and from my own above, a possible connection is that with PBC we have inflammation in the body. I was told that PBC pre-disposes for colon cancer. It is understood that inflammation is a condition in which cancer takes advantage. It's why we need to change if necessary or maintain if we had it, a diet that's low in foods that are inflammatory. Recent 2 scans showed first sludge, then small gall stones. I don't know if this means sludge turned to stones or if sludge passed and more stones formed and will be broken down by Urso. I was advised to take alphacalcidol at PBC diagnosis 8 or 9 yrs ago. I didn't. They caused gastric problems. Vitamin K was not mentioned. I take it now, along with vitamin D. It is needed to steer excess calcium (absorbed by Vitamin D) into the bones and not into soft tissue, including arteries, where it would otherwise be dumped. Did you stop the supplements after diagnosis, or have you never taken them? I was recently recommended Kate Rheaume-Bleue "Vitamin K and the Calcium Paradox". I found it a good read! Best wishes

[jrobertson1]

Very interesting. Will read the post you mentioned. May well begin my Vitamin D again although I work outdoors and get plenty over summer, winter in Scotland does not help.

[Hidden in reply to jrobertson1]

Vitamin K and the Calcium Paradox is a book ISBN 978 0 062 32004 9. You may also be interested to read M. Hollick's The Vitamin D Solution. He is a US endocrinologist who has studied Vitamin D for decades. He does promote named brands in his book which can be off-putting. I ignore that.

[billhunter]

OK. So I'll read the book! Interesting about inflammation as I've just had a massive set of blood tests at Addenbrookes (Cambridge) and I think some indicated inflammation but am awaiting feedback consultation. I don't take calcium or vitamin D, my latter natural level being quite good as I'm often out in the sun playing golf.

[Hidden in reply to billhunter]

You may be interested in M Hollick's Vitamin D Solution book too...