confused wife

Hello Lucy lucy 25 and welcome from another wife. Being confused and might I add frightened and upset are what we all feel when our bodies decide to misbehave and having an unexpected bleed can be most upsetting. With the information you have been given it looks as if your husband is going through the tests to find out the cause of his bleeding, whether it is associated with the bladder, the urinary tract from the kidneys and all points south, plus the prostate. The urologist should give you the results and will probably suggest further tests like a prostate biopsy and a bone scan as your husband's results suggest a possibility of prostate cancer. Don't panic. When caught early prostate cancer can be treated with curative intent and men can expect to have a normal lifespan. If you want to learn about how prostate cancer is diagnosed, what the results mean, and how it can be treated then there is a good book you can download for free.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Back pain can have many causes not related to cancer so the Urologist is the first port of call to try and find out if the bleeding and pain are as a result of problems in his area of expertise. At the moment it is one step at a time to get a full diagnosis. Keep a note of all conversations and meetings along with names and contact details so that you can hold the NHS to account on starting cancer treatment (if it is cancer) within the 62 days from referral. Ask for copies of all your husband's test results - your husband has a right to have them. Ask your GP for FULL ACCESS to records as this can sometimes allow you to see results earlier than waiting for the information to be given to you.

You will have many questions so ask away and we will try and help, no matter how small or silly you might think them.

Good Morning Lucy (lucy 25) 

Welcome to the group although I am so sorry to find you here.  The  "abnormal DRE" is where the GP has done the "finger up the bum" test, felt the prostate and it didn't feel smooth. The PSA of 15.92 would indicate possible Prostate issues as the normal range is less than 3. I can't comment on the blood and pain but I suspect they could be related.

I would anticipate a Prostate Biopsy to be next to stage and grade any possible cancer.  As we all have different questions to ask - here's a list to help you with some ideas:

Questions To Ask.

Do come back to us with any specific questions and we will do our best to help.

Best wishes - Brian.

Thank you for your reply. we have just managed to find out result PI-RADS 3 LESION. I am setting up his access to records. he seems to be very depressed and almost convinced he is going to die. i am encouraging him and explaining that there are new treatments and he hasn't been officially diagnosed yet. Our GP spoke to him and told him that already putting himself in the grave was not he correct attitude. he is scaring our children although they are grown up. i understand he is frightened but he will not talk just makes very dark comments. Sorry to off load.

Hello Lucy. Don't worry about unloading. There is a support number he can ring at Macmillan which might help him.

0808 808 00 00

It is natural to think that cancer is a death sentence but this is not so with prostate cancer. My husband is on the treatable but not curable pathway and was diagnosed almost 5 years ago - he is still going strong. It will take your husband a little time to come to terms with what is happening to him and us wives and partners have to act as gatekeepers for tests and then treatment. It can be hard so look after yourself as well.

Hello Lucy (lucy 25) 

This IS the place to off load - it's better here than causing disruption at home.

I am a man - we bury our heads in the sand - other men get prostate cancer, not me - I am never ill - until we realise yes it is ME and I need help. It's very much a couples cancer and he will realise he needs help.

 Prostate Cancer is the "best" cancer to get if you get one - 98% of men with a diagnosis die WITH it not OF it! I will say a positive attitude helps and even some dark humour as during his journey there's nothing as sure as he will lose his dignity!

We are here for you - stick with us and ask anything - we are all happy to help.

Best wishes - Brian.

Hi Lucy (lucy 25 ), I hope your husband is able to chat on Wednesday to the team, but I suspect he is still in shock.  See how the meeting goes but at the end of it you should both have the following.

Does he have prostate cancer.  If so, Is it curable and if so what are his options.  If it is incurable, what are his treatment options

I am incurable and have been receiving treatment on and off for 8 years.  Yes it’s a drag, but my philosophy is sh*t happens.  Please let us know how you get on and come back if you have any concerns. David

A year ago at about this time I was diagnosed.

Like your husband, I thought I was going to die, and was in a dark place.

This was dispelled almost completely when I met my oncologist and a treatment plan was decided on. The treatment was with curative intent, and the oncologist was very positive.

When I came out I understood that death was still a threat, but that there was a lot to do before them, and the treatment made it unlikely that death was going to be caused by this.

It reminded me of a discussion I had with daughter no. 1, who is terribly concerned about flying.

This was the conversation:

Me: "I know that you have researched it, so you know the odds of encountering a problem on a plane, don't you?"

Daughter: "Yes, I have checked that". (She's a chip of the old block.)

Me: "The odds are very, very good on completing the journey safely, aren't they?"

Daughter: "Yes"

Me: "Much better than a car journey?"

Daughter: "Yes"

Me: "And yet you've just asked me to drive you to the airport......."

This is a similar thing. The odds are not zero that any of us will die of prostate cancer. They are pretty good that most of us will die of something else.

If you don't believe that, you can always ask me to drive you somewhere......

We are so confused, we saw the consultant today, who was less than helpful. said no cancer and will come back in 3 months. going by the results i thought they would at least do a biopsy/ we are of course absolutely delighted but some what confused by the dismissive attitude. 

Hello Lucy (lucy 25) 

A PSA of 15.92 is way above what it should be. You don't say how old your husband is up to 3.5 say 4 is normal for a 50-60 year old man. 15.92 is ALMOST 4 TIMES THAT.

Personally I would contact the urology department and ask for your husbands notes to be reviewed by someone else. If that fails you need to get onto the hospital PALS service (Patient Liaison and Advice Service) and ask for a review.

To diagnose cancer you need an MRI Scan and a biopsy - To say "no cancer" with that PSA is just wrong!!

Best wishes - Brian.

Hi lucy 25 , I think you have every right to be confused but it is great that in his opinion it isn’t cancer.  I am not medically trained but from your first diagnosis of PIRADs 3 I just don’t see how he can make that claim.  From his experience he is probably right but I think you need a second opinion.  David