Metastatic prostate cancer

Hello Myrtille 

A warm welcome to the online Prostate Community - I am so sorry to find you here - but it's a great place to be for help and advice

I am not a stage 4 myself but we have plenty of Community Members who are and are "treatable", living an almost normal life (with slight adjustments). I am sure others will be along to answer your post.

If you do have any specific questions - however trivial please ask them - we are happy to help.

Best wishes - Brian.

Morning Myrtle I’m very sorry for your husband’s diagnosis but glad you’ve found us on here as we’re one big family,great your being positive as it must come as a shock,keep chin up and keep fightin ️️

Hi Myrtille,

Sorry to hear this - the bone scan result will have been a big shock after such a low PSA. We do have men on this site with similar figures and prognosis to your other half, so you will draw much comfort from this site, as they are all doing well on the advanced treatments that are available nowadays.  You’ve come to the right place.  AW

Hi Myrtille

Thats a low PSA result for stage 4

I can't comment on longevity as I am just coming up to one year since I went to the GP with a pain in my chest that was diagnosed as a partial pulmonary embolism

One the the tests they did at the time was a PSA test and that came back as 383

After multiple scans, tests and consultations I was diagnosed as stage 4 with mets to the lymph nodes and multiple bones.

They couldn't do a biopsy as I was put on anti coagulants after the embolism but I was put on a course of chemo and HT injections every 3 months for life

I did 6 sessions of Docetaxel that finished in December. It was quite hard at the time but I still managed to walk the dog 5 miles a day, every day. You have to stay active and fight it. Obviously the drugs help but 50% has to come from you.
I'm still suffering from the after effects of chemo and the side effects of HT are fun but "it is what it is" and it's better than the alternative

Keep a positive mental attitude, it's hard to do sometimes as it can get to you and wear you down and you start thinking about it in the early hours of the morning when you cant sleep

I was 61 when I was diagnosed and have read that as it's stage 4 I have a 30% chance of living more than 5 years, but 30% is better than 0%.

My last PSA was 0.43

I fully intend to still be here in 5 years and there are people on this site that have managed that and even longer.

I have gone back to training in martial arts. Karate twice a week and also Tae Kwon-Do once a week as well as still walking the dog. It can be knackering sometimes but I'm a fighter and refuse to give up.

I also ride big shouty motorcycles for fun.

Keep positive and good luck

Hi Myrtille .

A warm welcome from a wife whose husband has treatable T4 prostate cancer which was diagnosed in July 2020 and is still going strong. What we have found is that the treatment route is tailored to each persons individual type of prostate cancer - and yes, there are several different types with some being more aggressive than others and the biopsy report usually gives an idea of which type your husband has. My husband has a particularly aggressive form so he has been through more treatments so far than most as our oncologist believes in throwing the kitchen sink at it as soon as a recurrence starts but it has given us experience of Bicalutamide, Prostap injections, EBRT, Enzalutamide, Docetaxel and recently SBRT. Hubby was dreading the chemotherapy but didn't find it as bad as expected and some have very few side effects. The biggest impact has been from the injections so keeping as fit as possible plays a major part in maintaining quality of life. We also have a positive attitude - with occasional wobbles - but the friends on here will always lift each other up - also our doctors say this helps improve outcomes. Our oncologists told us from the start that he could do 50%, the other 50% was down to us in lifestyle changes and positive attitude even though hubby had only been given a possible 6 months because of his type of cancer. No one knows how the cancer will react to treatment but the triplet therapy you have been offered has shown positive results in keeping the cancer at bay and there is some evidence that it can be in remission for many years, even with T4. There is work ongoing to try and tweak the protocol and last month a study was produced which indicates that the second generation antiandrogens and docetaxel should be administered concurrently for best control and that the Darolutamide or Abiraterone should not be started before the Chemotherapy so one to query with the oncologist. - link below. It also suggests that there may be some benefit in coming off the drugs if the PSA is reduced to negligible as this may prolong the time until recurrence, plus it would give a better quality of life. Another question for the oncologist is should your husband be given bone protection drugs alongside Calcium and Vitamin D.

The range and type of treatments available has come on in leaps and bounds over the last few years so men are now living for a lot longer and with a better QOL than they were even a few short years ago.

Please come back with any questions and the great people on here will try and help but if you need support as a family then it is available.

https://www.sciencedirect.com/science/article/pii/S1558767324000028#:~:text=Triplet%20therapy%2C%20consisting%20of%20ADT,therapy%20should%20be%20administered%20simultaneously.

Hello Myrtille, 

I was diagnosed 5 weeks ago, similar stats to your partner, my stats are in my profile. You have definitely found a safe and supportive space here! 

Given I’m new to this too, the only pieces of advice I can offer that I’ve learned so far are:

Read some of the inspirational stories on this page McMillan and Prostrate cancer uk pages. There are many examples of men living with Advanced cancer for many many years. 

Avoid Mr Google like the plague! It’s not helpful and can be very destructive. Instead read the great literature produced by Prostrate cancer UK and McMillan.

Stay strong! 

Grant ️

Hello,

Thanks so much for your reply.

We were told while we were waiting for the bone scan results that a low PSA with a Gleason 9 sadly doesn't mean much as we both thought it was caught early due to the PSA being low.

He had his first blood test 6 months ago and we were both frustrating with how slow the NHS was in investigating this. I have private insurance through my work so I added him to it and things moved incredibly faster! From first appointment to PET scan results, less than 2 weeks, and now that's me wishing I had done that earlier... 

It sounds like you have received a similar diagnosis. I am glad you are doing OK and fighting this as best you can. Keeping a positive mind is key.

My partner is a cyclist so he exercises quite a lot. We also have a superactive doggy so walking loads and of course running after our toddler. We live a fairly healthy lifestyle but we are making more changes to it. I am convinced that treatment combined with lifestyle can majorly improve the outcome. 

I also ride a big shouty motorcycle 

I would love for him to join this community but he is currently refusing to speak to anyone about it and that includes our friends and family. The news is still fresh (6 days) so I am giving him a bit more time. However I believe it is also crucial to feel the love and support from our families and friends. I know I will not be able to hold this secret for much longer but I am giving him time to digest.

He will have his first injection in 2 weeks I believe and start chemotherapy in 6 to 8 weeks. 

Good luck to you too!

Hi Myrtille and a warm welcome from me, I am stage 4, Gleason 10 and metastatic  was in nine places. My PSA on diagnosis was 8.2 , which like yours is way below what you would normally expect, mine was due to my cancer being a low secreting type. Diagnosed two years ago on hormone therapy, had aggressive radiotherapy 14 months ago which worked much better than hoped, my cancer is in six places now and significantly reduced everywhere else, o a few more years yet and have 3 more treatment options lined up for when they are needed. Myrtille I'm not going to say life is normal, how could it be. but life is good, we do all the things we used to do, and we are even getting married later in the year. best wishes with the triplet therapy, have hard a lot of good things about it, take care.

Eddie xx

Can't beat a motorcycle to enable you to forget what's bothering you for a while and live in the moment.
When I was diagnosed I thought "Sod It!" and bought a Triumph Rocket III as motivation to kick the cancers arse.  I was determined to get fit enough to ride it.
Chemo can be horrible.  I had bad side effects after 2 of the 6 sessions but I made it through

He’ll come round to joining us, I’m sure.  Especially on a Friday afternoon when, quite often, discussions go off on a tangent and we all end up having a giggle about things.  As some of those who are regulars in this club will know, of my stock phrases is that you sometimes have to “laugh in the face of the devil” - you feel much better for doing it!   AW