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Bladder Cancer and BCG shortage

10 Sep 2014 01:10

Hi everyone, I'm facing another major challenge with this bladder cancer. I'm advised now that there is a (worldwide?) shortage of BCG, which is a treatment for bladder cancer, at least here in Canada, but I was also told this shortage is worldwide. I am due to start another round of treatments likely next month, but now this is uncertain. I hear that some patients may receive one third of the regular dose, but how they will determine who gets even a reduced dose, is beyond me. Its' even being said that some patients may end up having their bladder removed. (which is a major operation, especially for women) because of this shortage. There isn't any information out there as to when or if this problem will be rectified. This is really upsetting. Its' bad enough to be dealing with cancer period, without now having this shortage to worry about. I guess it just never ends.

Anyone else out there dealing with this problem? Is there a shortage in the UK?

Lorraine

Re: Bladder Cancer and BCG shortage

10 Sep 2014 06:59 in response to LorraineD

Hi Lorraine

Was really sad to read your latest news as regards shortages in the drugs used in your bladder cancer treatment.   Its certainly not what anyone would want to hear as they are about to enter another phase of treatment.  Have you managed to have a chat with your medical team about it I wonder?  I do not have any medical knowledge or firsthand experience of bladder cancer (maybe other forum users will help here or our specialist nurses may be able to offer some advice (maybe worth posting on their section of the forum) and have no idea about availability here in the Uk or whether there may  be a 'good alternative' as the option of major surgery must be causing you anxious thoughts.Sending you a big virtual hug and hope you hear better news soon. Jules x

Re: Bladder Cancer and BCG shortage

12 Sep 2014 02:13 in response to jules54

Thanks so much for your reply Jules. I never thought of posting to the nurses and perhaps I will do that. At least they would know, or have some idea of how widespread this shortage is and whether or not its' likely to last. I haven't contacted my treatment team as I'm sure they are being bombarded with phone calls. I have an apt. for a cystoscopy next week, so will question my urologist at that time. It is stressful to think that the treatment that can extend, or even save my life may not be available for me.

I'll keep you posted on how this unfolds.

Lorraine

Re: Bladder Cancer and BCG shortage

12 Sep 2014 09:29 in response to LorraineD

Hi Lorraine

Hope, when you have your appointment next week you will get some better news  from 'people in the know' and at least you will have the chance to get your concerns 'out there'.  Its an old cliche but try not to overthink things in the  meantime (easier said than done I know) as I know from previous threads that you do not give in easily. Be kind to yourself and let us know how you get on as will be thinking of you.Jules x

Re: Bladder Cancer and BCG shortage

12 Sep 2014 14:40 in response to jules54

Thanks Jules. As you probably have guessed it so far, I don't give in easily. I'm like a dog with a bone and most often, I will continue to chew on it until I get answers. I know that the medical profession can only tell us what they know and sometimes they don't have all the answers - I get that. What I get concerned about is when they do have the answers, but for some reason, they don't think we're entitled to know what they are.

After I see my oncologist next week, I will post here what I learn from him.

Take care.

Lorraine