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My husband diagnosed with metastatic PCa -trying to understand it all!

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User
Posted 07 Oct 2015 at 06:52
Hi everyone, I was reading some of the other posts and see this is a very caring online community. My husband who just turned 66 in September was diagnosed with metastatic prostate cancer. I'm still trying to make sense of it all, as he goes for checkups each year, and within a six month time it seems his PSA double from 3.6-7.13 and when a biopsy was taken he had a gleason score of 4+3 with a met to his iliac bone on the pelvis! What I didn't understand is having a spot on the bone with a PSA being that low of a number. I thought mets turned up in scores over 10. He is now on hormone therapy, pills and a shot and a shot to strengthen the bones. What I don't understand is at what point did this all happen? His PSA was not overly high- how could he have gotten a met in six months? To top it off I lost my mom last year from colorectal cancer and as her only child I lived a nightmare with her through her illness and my hubby was my rock. And now this?????? I just don't understand!
User
Posted 07 Oct 2015 at 11:59

Hi Sammyswife,

Forgive me as I can't answer all of your questions, but I am sure that other more knowledgable guys will respond to you in due course.

As I understand it PSA is reckoned to be a very good tool, for doctors to use once you have been diagnosed, they can monitor the progression of the cancer, and check how well their medications and treatments are working.

Where PSA is far more hit and miss is when it's used to diagnose cancer in the first place, lots of guys with high PSA's go through the fun of a TRUS biopsy only to be told that there is no sign of cancer.  Others have low PSA scores, no obvious symptoms and suddenly find themselves with advanced prostate cancer.  The American doctor who discovered PSA, a Dr Ablin, was on TV last month describing PSA monitoring as a public health disaster, if you check out on the Internet he has written that tossing a coin is as useful as a PSA test in determining who has cancer.

Hopefully it helps you and your husband to know that it doesn't really matter how often you have PSA tests prior to diagnosis, so there is nothing you could have done to prevent things developing the way they have.

I guess you are fairly devastated if the diagnosis is only recent, but take heart lots of us survive many years with prostate cancer, we have fun in our lives, we try to remain upbeat, the philosophy is 'I've got cancer, but cancer hasn't got me'.

A very good cure for prostate cancer, at this time of year, is a holiday, somewhere warm and sunny, so your other half can get lots of vitamin D, have a few beers and enjoy a curry, they are all good anti-cancer remedies.   

:)

Dave

User
Posted 07 Oct 2015 at 12:45

Hi Sammywife,

Sorry that you find yourself here but you will get loads of advice from a great bunch of people.

Myself i was diagnosed with a PSA of 4.6 and spread everywhere but three years on i am doing pretty good.

i have put a link to my thread and there is a picture of my scan there somewhere.

http://community.prostatecanceruk.org/posts/t9186-Simon-story#post9186

come back with any questions you might have

Best wishes

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Oct 2015 at 13:09

Hi Sammywife,

Sadly low PSA does not eliminate PCa nor advanced metatastic cancer. My PSA was 7.5 and I had a Gleason 9 and spread into the bones. So not unusual to get the outcome you have got. But and there are many buts you have a Gleason 7 and the spread is minimal so there should be plenty of time on the clock yet. Be interested to see if they offer you earl chemo which is the latest researched evidence of best success. There are other threads on he which has discussed this so worth finding out about it and discussing with onco. I have survived nearly four years, am still working and though the impact of the treatments can be hard,mi am here, enjoying life and looking forward to a year or two yet.

It's early days and no amount of logic makes this any easier to deal with. Give yourselves time to make sense of this, look for support here it is a great site, and listen carefully to what the onco offers by way of treatment. Good luck on your unwanted journey!

User
Posted 07 Oct 2015 at 16:03

Hello from me too sammyswife.

You're in a horrible place aren't you, but without exception we've all been there with the dreaded cancer diagnosis so do understand your concern and frustration.

You've already heard from men with similar scores to Sammy and there will be lots more advice at some stage.

Could I ask, are you in America/Canada? Not that it makes a difference to our caring, it's just that treatment might be different.

I'm sorry you lost your mum. My own daughter lost her lower bowel to colorectal cancer a few years ago. I'm sure you gave your mum all the love and support that you could,and now you're doing that for Sammy. Good for you.

Take heart, treatments are very good these days for those with mets and as yorkhull says a gleason of 7 and minimal spread is quite encouraging.

All the best Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 Oct 2015 at 17:19

hi Sammy
so it looks like you are from the good old usa, so we across the pond will do our best to hold your hand and give out what help we can, from what I have read on the replies they make sense to me
I assume you are waiting for scans or results of scans this is a very stressful time it seems ages,
I hope you have not been on google to much looking for answers, can get a bit mind blowing doing that, my self like a few who have replied already are on hormone treatment
its been a tough year for you, as always see if you can download the toolkit off this site as I don't know if they will post it to you, has loads of info it will help you
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 08 Oct 2015 at 07:17
Hi Sandra, I'm here in the United States.(thought my Yankee baseball hat might have given that away) It's so nice to see this caring support group here. I thought the treatments are pretty much the same for each stage worldwide unless I'm wrong. I wish everyone here good health to both the recipients and caretakers and I hope one day there will be a REAL cure for this cancer and all the other cancers. Maybe one day soon hopefully. My son is in his first year of medical school. You never know!

Edited by member 08 Oct 2015 at 07:20  | Reason: Not specified

User
Posted 08 Oct 2015 at 08:11
Hi Sammyswife,

I don't have great knowledge about metastatic prostate cancer but I just wanted to welcome you to our community.

I'm sure the love and support you find here will be of help to you in the coming months. It helps me.

Take care.

Steve x

User
Posted 08 Oct 2015 at 12:10

My only excuse Sammyswife is that I answered without checking your profile where it says quite clearly that you are in the good old US of A.

Apologies

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Oct 2015 at 00:51

Oh goodness no apologies needed! So glad to find the nice,kind,caring,concerned people on this forum, support can bring rays of sunshine in on a gloomy day! And we all need a bit of sunshine! Thanking you all for your support

Regards, Joyce from the "good ole USA" 😃

User
Posted 11 Oct 2015 at 02:57
Thank you for the welcome Steve yes, it does seem like a good,caring community

Regards,Joyce

User
Posted 11 Oct 2015 at 09:20
Welcome to the forum Sammyswife

There are lots of partners here, quite often it's the partner who does the research, certainly in my case my man doesn't want to and let's me do it, so I can give him a quick summary when he needs it.

My hubby has bone and lymph mets, is. Gleason 10 and has been doing well for five years, he was 61 at diagnosis. I'm telling you that as I could find very few examples of a G10 person surviving that long at the outset in 2010. The future looks good, Pca is a disease that is unpredictable in nature but with the very limited spread your hubby has, he could be a survivor if treated correctly. There is a view that men with less than 5 mets should have radiotherapy to the prostate, which is rare but I think it's a good idea myself.

Lots of advice here, feel free to ask any question, there's always someone to help

Lots of love

allison

 
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