surreal

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User

Posted 03 Jul 2014 at 01:08

My Husband has just been diagnosed with prostate cancer 4 weeks ago. Its in both sides of his prostate and is aggressive. After having an MRI and bone scan it has come back that there is cancer in a rib on his right hand side and in his seminal glands. There is also something showing on his spine but they haven't confirmed that it is cancer we are awaiting another MRI scan. He has been started on hormone tablets (casodex) and next week he will get his first Decapeptyl injection. Its very frightening and surreal and we don't know what to expect and what the prognosis will be. Can anybody share their story with me good or bad

Many thanks

Senga

User

Posted 03 Jul 2014 at 08:27

Hi Senga
There are many men on here who will have had a similar dx to your OH. I can't really comment as I have had my prostate removed and had radiotherapy.
I do know that for a lot of men the hormone treatment your OH is on can work for many years and then there are other treatments. You can download the toolkit from the PCUK website that gives lots of useful information.

This is the most worrying time but believe me as you get more information it will become easier as you adapt to the new 'normal'. Please ask any questions, you will find the people on here to be very supportive.

Perhaps read the stories of others eg Siimons story or Yorkhulls ever decreasing circles, they should give you some hope

Bri

Edited by member 03 Jul 2014 at 09:14 | Reason: Not specified

User

Posted 03 Jul 2014 at 09:59

Hi Senga,

Sorry that you have had to join our little club, can you give us anymore information at diagnosis, Gleason score, PSA and your husbands age this will all help us give you some answers

Best Wishes

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 03 Jul 2014 at 10:14

Hi Senga,

Welcome to the forum but sorry that you find yourself here. Those first few months waiting for the full diagnosis are as you say surreal and very scary. OK its not the best diagnosis BUT and it is a big but there are many treatments available for your hubby. You didn't say what your Husbands PSA score was, there are quite a few of us on here in a similar boat to yourselves we call it (The mets club).

It has been just over a year since my Hubby was diagnosed he had a PSA of 13000 we had the usual wait for scans etc and all of the worry that comes with it. He has Mets on his ribs, spine, shoulder blades and his pelvis. His kidney and lymph nodes are also affected. With this diagnosis and combined with how ill he was at that time I thought he had only weeks to live.

His last PSA test was 15.2 so his treatment for now is working very well, he is much more mobile and not in the pain that he was in. He is taking Bicalutamide and 4weekly infusions of Zometa.

There are many new drugs being developed all the time, as Bri has suggested the Tool Kit is very helpful . I see Si has also replied for you.

Stay as strong as you can, we are a very friendly bunch and for me personally the forum has been a life saver.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Jul 2014 at 10:27

Hello Senga. Well you've made a start in helping your husband by joining this club online.

I will leave advice re treatment etc to others on here who have the relevant knowledge for you.

What I would suggest is that you obtain, through this site, THE TOOLKIT, since it gives a lot of information and might be helpful.

Initial shock at the diagnosis will eventually wear off and you will both be more positive in what to do next.
Good luck both of you.

We can't control the winds - but we can adjust our sails

User

Posted 14 Aug 2014 at 23:19

Hi evryone,

thanks to all who replied to my first post.

Matt is 57

Since then we have found out the cancer is on his spine too. Matt has been put on Decapeptyl monthly hormone injections and has had two. In April his PSA was 13.3 and after his first injection and 21 days of Casodex in July it was down to 7.2 :)

We are going to the Beatson on the 26th of this month and he is being put forward for a clinical trial, the Stampede Trial, so fingers crossed he gets picked.

Does anyone have any suggestions of how to overcome the hot flushes brought on by the hormone injections or will they eventually pass

Thanks

Senga

User

Posted 15 Aug 2014 at 19:13

Hi, Welcome. You could try eating some soy products for the hot flushes. eg yoghourt, tofu,soya breads-I think M/S do one. Best wishes.

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