Rare form

Email this conversation Print this conversation

User

Posted 17 Feb 2020 at 13:53

i have just joined this forum and just looking for some advice.
my husband 43 has just been diagnosed with a rare form of cancer in the prostate.
We have just come back from seeing consultant and he said they are going to try and shrink it with Chemotherapy but he will probably have to have specialist surgery in England ( we live in Northern Ireland) he said about removing the bladder, bowel and rectum obviously on hearing this I’m in absolutely pieces and can’t get my head around this.
Seeing specialist on Thursday. im absolutely terrified.

Leigh

User

Posted 17 Feb 2020 at 17:09

Firstly, if this is your real name it would be sensible to change your profile name to something less identifiable - if you can't work out how to do that, the moderators can help you. Using your real name and living in quite a small geographic area leaves you open to spammers and trolls.

It seems that your husband does indeed have a very unusual form of prostate cancer; the most common is adenocarcinoma but there are at least 26 other types. Some of these do not respond to the usual treatments such as hormone therapy so having access to a consultant who knows about rare types is essential to getting your husband the best outcome.

I am not sure whether you have started / finished having a family but if not and you did hope to have children, it would be a good idea to seek a referral to ask about sperm freezing before the treatment starts.

Edited by member 17 Feb 2020 at 17:11 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Feb 2020 at 19:37

thank you for your reply I appreciate it. I’m really new I never use forums or anything but I’m totally lost with the whole thing and terrified.
Leigh

User

Posted 17 Feb 2020 at 20:05

MODERATORS, please could you help this new member to protect her identity a bit?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Feb 2020 at 00:13

So sorry for the situation in which you and your husband find yourselves and at such a young age. If your local consultant feels it would be best if he was treated in England, I would ask who he feels he could recommend. If all your husband's histology with scans and other tests are passed over to the more experienced consultant in England perhaps a telephone appointment might be a good way to start.

I don't know how the set up for treatment in England would be affected by your being in Northern Island as regards the NHS but this is something you will doubtless ascertain if you don't already know. Naturally, you will both want the very best treatment possible but not overtreatment and this will be discussed with your new consultant in England.

Do let us know how this goes.

Barry

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.