My husband's prostate journey

Thank you Millie I had no idea it was a legal requirement that we have access to all our medical information, I have obtained mine but they are not compleat, though my first medical notes regarding my initial diagnosis mentioned 5 important  details i was not told about, details which would have made me change my treatment, best wishes.

Eddie xx

Hi MillieM .

A warm welcome and this is a good place to express your frustration before you explode. I can fully understand your frustration and fears. Like you, I do have a scientific background with some medical knowledge, whereas my husband doesn't know the questions to ask. My brain is wired that I have to know all the details, the what if's, and to have a clear plan of action, and I want it NOW. Having to sit back and say nothing is difficult when you know what is being implied by the fact that your husband has been put on hormone therapy. I must admit that I also tend to overthink which leads to sleepless nights whilst hubby snores away in blissful ignorance. 

The thing to concentrate on now is getting all the tests done as quickly as possible so that you can come up with a proper diagnosis and treatment plan. In a sense you have already short circuited the system due to the urine retention issue. The bone scan was necessary, and advisable before hormone therapy started for most accurate results, - done. The MRI is being done today which is the best type of scan to detect IF there are any suspicious areas and where -tick. The PSA is 130 which is suggestive of prostate cancer, but not definitive. If the MRI indicates suspicious areas then a biopsy is needed, preferably a transurethral one, as this will give you a Gleason score, grade and stage plus type. 

Once you have your results you may then have to make treatment choices which is where this group can guide you to information but as a starter I have attached a link to the PCUK site on tests for prostate cancer which will then lead on to how it is diagnosed.

https://prostatecanceruk.org/prostate-information-and-support/prostate-tests

Unfortunately all of these things take time and the waiting can feel the worst part. The positive is that hormone therapy has started and will put a brake on things - so containment. How long your husband has to be on them is yet to be determined. It is natural that we think the worst when cancer is suspected. One statistic to remember is that 98% of men die with prostate cancer and not of it.

By the sounds of it you know your way round the system in the UK so know to keep notes of dates, names etc if you feel a complaint is necessary but that can be dealt with at a later time when you have all the information.

Please come back with any questions or if you just want a rant or a chat - there is always someone who understands how you feel.

Mistake - I meant to say trans peritoneal biopsy, and preferably MRI guided. 

Good to hear that the edit facility on mobiles will soon be reinstated Brian.

I'll get it right eventually. Transperineal. It is 5 in the morning.

Hey there Eddie, nothing has yet been said about biopsy, mainly because, as I said, my husband has yet to have contact with anyone other that the nurse who prescribed bicalutamide, which was exactly 2weeks after his hospital admission. MRi and bloods today, so we will see what that brings. 

Kind Regards,

Millie.

Hi this my first post my husband has prostrate cancer his been on hormone tablets then had his first infection one month ago just wondered if any body had week legs in the last week his legs have seem unstable a couple times also his suffering from slight incontinence 

thanks fir any advice 

• Oh my, Alwayshope....thank you for that, I truly am grateful for you kindness....you appear to understand what I mean when I say that I want to take all this and run with it myself, and  to ask all of the questions my husband cannot and will not. I think the worst thing is I have taken to researching like I did at uni...lol ,,,anything and everything, it is sort of consuming me and I really am beginning to understand why men are getting a raw deal with this cancer. I am shocked by the number of  men that it affects and how many cases are mismanaged! Your information was so welcome, and yes it is important to remember that it is a treatable cancer....but so prevalent....I truly never realised. Head in the sand probably, you see it has never been on my radar before and no one in my family has been diagnosed before. Well, it's MRi day and more bloods, will let everyone know how things go this week....once again thankyou so much, you are all so thoughtful to this rambling woman, and indirectly to the man she has adored for 16 years.....and counting. 
• Warm Regards,
• Millie

Hello Lodge  A warm welcome to the online Prostate Community - I know you don't want to be here but it's a great place for help and advice.

As far as I can recall (and I have been here for a couple of years) I can't remember anyone with those two particular side effects from Hormone Therapy. The HT does indeed introduce fatigue but not normally that quick.

My view is that this is a question for his GP or as another option you could pose the question to one of our Macmillan Cancer Nurses - here's the link

 Ask a Nurse 

It may take a couple of days for the nurses to get back to you with a reply.

I hope this helps.

Best wishes - Brian.

Alwayshope said:

Good to hear that the edit facility on mobiles will soon be reinstated Brian.

There is a site update due and the information we have is "within the next few days" and "it should fix all the bugs previously reported" and I know the edit facility on a mobile was one of them.

Best wishes - Brian

Morning Millie, best wishes for today,

Eddie xx