Recent Diagnosis

Hi there 

I’m really sorry you find yourself here and I can totally relate to how you feel!

My husband was diagnosed Gleason 9 last April and had surgery to remove the prostate in June! 

Like you it was a massive shock and I think more so because of the high Gleason score I went into panic mode. 

His results  from surgery were Gleason 4+5 T2c it has been found in both sides of the prostate, initially only seen on one side on the MRI and thankfully the bone scan was clear. 

It is all a whirlwind at first and like you when I found the forum I got a great deal of comfort from people sharing their stories and giving advice. 

I thought at first it was game over but the surgeon has given us such positivity even with the high Gleason that cure is highly possibly and those with more advancement still have plenty of options to provide longevity! 

Im Hoping you get a negative bone scan and your husband dosnt have too many side effects from treatment which I can’t comment on as my husband had a prostectomy! 

If you know your husbands PSA number it would be helpful for others to know and comment on to you! 

Best of Luck 

A 

Thank you so much and I’m sorry to hear of your husband’s expertise.  I hope he is doing well.  Yes, it’s so helpful to meet people on here albeit in such difficult circumstances.  I’m not sure of the PSA level but I’ll check and share it with the group.  Any information that helps to understand helps us all.  Thank you again. 

Good afternoon. 

Ask my friends on this forum have done better than me in giving advice, so I'm only going to mention 2 things that struck me was really important. 

First, there is going to be some treatment for all types of this illness, even the most advanced. Many well be cured, but it will take time. If there was evera case for using the saying "it's a marathon, not a sprint" this is it.

I have been on hormone therapy for sixth months, and am half way through a longish course of radiotherapy. The side effects have not been a real problem, although they are definitely present.

Second, men often take pride in being "male" - and if they do some of the sexual side effects - moobs, erectile dysfunction and loss of libido - are a real hit. It is hard to explain.

The only one of those I have missed out on is the moobs.

It sorted of made me do a stock take of just how important these things are, especially as my wife has her own set of (non-cancer) problems. She and I decided that there was nothing we couldn't work through.

My own decision over the last few months is that I am changed, but not diminished.

In a whole lot of ways, and somewhat to my disbelief, my life is probably better.

He may need help, but I am sure that he can reconcile himself to all this once the treatment plan is together.

Hi AMasG,

Another wife here - we are actually waiting to see the urologist for the biopsy results but we know that it is PC and looks like it has spread as we rang the MacMillan nurse to see if she could tell us anything as the suspense was awful. She gave us the results but not the finer details which we will receive next Thursday, and we can't remember if she said it had spread, might have spread or could have spread which is making things a bit unclear but she was amazingly reassuring. My husband is already on hormone therapy as a 'just in case' move by the urologist and after 2 weeks on bicalutamide he had his first injection of hormones just after Christmas. This has been amazingly reassuring although we also know that PC is very slow to grow so waiting for a few weeks isn't likely to make things worse. You have had lots of great advice from other wives/partners/ who are much further ahead on their journey but I wanted to post just to say hello, but also to encourage you to ring the MacMillan Nurse about anything you are fretting about, as they are wonderful and will never make you feel you are wasting their time. Best wishes, and I'm sure we'll cross paths on here again  Hug coming your way!

Alison

Thank you Alison.  Such positive and wise advice.  Fingers crossed for your husband’s results.  The waiting and feeling out of control is definitely hard isn’t it? Hugs to you too x

Good morning AMacG

My husband has just received his diagnosis a week ago.  
it is so scary. I have just retired, he has been retired a year.  I was going to work until the summer but it Seems now that this was meant to be. 

He is Gleason score 6.5 his PSA was 8.8 and the radiologist has recommended Active Surveillance. 

We have discussed this together and he has decided to go ahead with the surgery.  There is a 3 month waiting list.  I have read some of the experiences with AS and I think he has made the right decision.  He is 67 and if he leaves it a couple of more years he might not be able to deal with the recovery as well

He has spoken to a friend of ours brother, who had radical surgery 5 years but also went on to have radiotherapy as the cancer had spread to his lymph nodes.  He is doing really well. 

We have factored in all the risks and although some are really worrying I think they are hurdles we can get over together. 

I think staying positive is the key, not to look at all the scenarios but focus on the here and now. 

We have accessed a drop in centre which we visited last week.  The team were really good.  Although there are no right answers they talked about support groups, they have an exercise group to help with pelvic floor strengthening and a group which talk about diets and even do cookery sessions.

Please keep positive, support each other.  

Thank you for sharing your AS experiences 

best wishes 

So many echos of our situation.  My husband is also 67 and retired last year.  I don’t know what Active Surveillance is so will look it up.  It’s a huge learning curve isn’t it? Someone referred to their partner as OH on here and I don’t even know what that means either! Feeling a bit useless but I’m determined to learn as forewarned is forearmed as they say. 

I hope your and your husband’s journey and treatment is successful, just as I pray ours is too.  Sending hugs. X

Hi Sofia.  Just commenting that the Gleason score is always stated in terms of whole numbers, e,g, 4+3=7, not using decimal points e.g. 6.5.  If you have the opportunity to correct this, the easiest way to do so is by editing the original post.

But anyway your decision has now been made - very best of luck with the RP in a few month's time. 

I'm on AS myself - details accessible by clicking on image on left of my name.

Hi AM

In your original post you stated a fairly high Gleeson and a T3a which means cancer just outside the gland but nowhere else so still potentially curable.

Active surveillance not really possible at this stage, the best way forward (obviously just my opinion)  would be HT and RT

You asked about diet.

I cut out nearly all sugar, cut back on meat especially red meat, little alcohol.

Good luck

Steve 

 AMacG there are a few abbreviations used on here.

OH = Other Half

PCa = Prostate Cancer

RT = RadioTherapy

HT = Hormone Therapy

ask any questions, someone will answer.  David