Results of CT scan and biopsies

Hello MrsC66. I’m sorry to hear your husbands results. When you receive them and it’s bad news it’s like somebody has hit you with a sledgehammer.  I happened on a really insightful video the other day in which they explain the difference between cure and remission. What really struck, though, is that, to me, is that they seemed to suggest that prostate cancer should be considered a chronic disease which can be managed

https://m.youtube.com/watch?v=5Sfub1QpY74

I extended this to think of other chronic diseases such as diabetes or rheumatoid arthritis etc. I found that, for me personally, looking at prostate cancer as something that is a long term illness with hiccups along the way rather than a death sentence and immediately life threatening, gives me some hope. I don’t know whether or not I am clutching at straws but having some hope through these dark days is a life raft!

I hope your husband gets all the best medical care available and that his illness will be appropriately ‘managed’

im sure you will receive lots of supportive comments here and that you will hear some very positive accounts from people who are ahead of you in this journey. 

in the meantime, please rest assured, you are not alone in this nightmare - I’m reaching out to ‘hold your hand’ virtually as we all walk this path together. 

xx

Good Morning MrsC66

Very sorry to hear of your husbands diagnosis - as WW said above it's awful when you first receive the news but there is always treatment and they are fast improving.

I am a Gleason 9 and it was thought my cancer had spread to my bones and lymph nodes. However once the oncologist reviewed my MRI scan it was decided the spread was only lymph nodes - if any. I am on the old hormones and have just completed my Radiotherapy and all is going well - so there is hope in your husbands case. 

I have found the support of Mrs Millibob in this journey to be important and it's great that you are there for your hubby.

(You can see my journey by clicking on the image of the beach).

Good luck and keep posting - we as a community are all with you both.

Brian.

Hi Wooeiedwife and MrsC,

i totally get this cognitive shift idea ladies and it really makes a lot of sense. I’ve just read your post to my husband and we are going to think of it like that from now on.
 When stage 4 hit us with the sledgehammer it was pain the likes of which we had never felt before. Then there was the shock, unknown, uncertainty. But this group has been the best therapy. Thank you!

…holding hands too girls!! Xxx

The further along this journey I get, the more angry I become!  I feel so cross that there is no easy treatment, so much uncertainty, such a callous attitude from some medical professionals etc. then there is an absolute disregard of the impact of all this on wives, partners and other family members! It makes me boil when they approach my husband, ask him how he is and completely ignore me!  I get even more angry when my husband replies, saying, ‘ok, thanks’ and I know he’s not but they don’t inquire further and just assume he is ok because he said so! it’s easier for them if he says he’s ok!

what distresses me, too, is when I read on here that men are receiving the prostate cancer diagnosis when they are in stages that are too late to be cured. What on earth can’t all men be offered routine screening ? Why, for example, can’t my son, aged 48, not get a PSA test  - because he’s not 50 and doesn’t have symptoms - despite a high family incidence of breast and prostate cancer ? ( fortunately he argued with the jobsworth surgery nurse and managed to get one) 

I’d better get off my soap box! But yes, I agree, the shift of mind set to looking on this as a long term, manageable, chronic condition with different defences and management along the way really helped me.. Take care of yourself x

Yes I know you have to argue to get a PSA test at the surgery I even had to do it when I was under the care of a urologist and needed more frequent tests with rising results at age 70 - eventually I had to have mine done at the hospital over an hours drive away.  I was just at the point of diagnosis about to pay for private tests at a local private hospital.  It is always an option if you can't get one.  Luckily my son's have had no problems getting them before age 50 at their surgeries.  We have prostate cancer on both sides of the family - Their Mum's brother died of prostate cancer, their Mum had thyroid and then ovarian cancer and died at 57 (her little sister had the same journey but luckily because of heightened awareness has survived .  My Dad died with, not of prostate cancer at age 88 and both my brother and I were diagnosed with prostate cancer at age 70.  Luckily diagnosed early enough (though it was close with me) for us both to have successful treatment and 7 years on for me and 5 years on for my brother we are both still here with undetectable PSA.

Whatever you do be proactive with your healthcare and don't be afraid to politely "argue" your case  for tests and the correct treatment for you.

Brilliant that you and your brother have been treated so successfully. My husbands father and grandfather died of prostate cancer and his mother, her mother and his cousin died of breast cancer before they were 50. We are now waiting for genetic counselling but have been told it will be at least a year.

When I think back to my father in laws care and treatment about 25 years ago, there have been advances in the management of the disease but it’s not going quick enough! How many more lives are going to be lost, for example, because of lack of routine screening?

Yes absolutely.  It really annoys me with how resistant GP's are to PSA testing when asked.  I know it costs money if they were to do it for everyone - that's what I was told.  I quote "If I was to test everyone over 70 with rising PSA and PSA over ...  ...  ... every three months this practice would be bankrupt"   I wasn't asking him to do it for everyone but for me only.  NICE guidlines at the time indicated that with my PSA I should be offered 3 monthly PSA checks and my urologist had asked for one 6 months after previous PSA test.  As I said I then had to travel to the hospital for the  one the urologist had asked for and was about to organise 3 monthly private tests for the next ones when I was called in to be told I needed more tests.scans and a biopsy.  My wonderful rad.onc.  said I should definitely have been having quarterly PSA checks since my PSA reached 5 points below what it was when he saw me as he would rather have started my treatment at 3 points lower than it was when I first saw him as it would have probably have meant different treatment.  I shouldn't grumble because I was lucky to be still (only just) at a stage where I could be, to all intents and purposes "cured"  but a couple of months longer or if I hadn't pushed to get further PSA tests and waited for another 6 months and have the one offered by the surgery the story may not have been the same - though I may still have been here to tell the story I would not be in the same state of health that I am currently.