Advance metastatic prostrate cancer with widespread bone mets

Hi Rosiejen.

Good morning it's great to meet you today sorry that it's under these circumstances but hey ho!!!!

Yes I was diagnosed with Metastatic Prostate Cancer last June 2023. 

Please please don't feel guilty as mine like many on here had no symptoms pre diagnosis.

Yes I have had a permanent catheter fitted for a number of years due to bladder problems following a Stroke at the age of 32.

I was having a scan pre bladder operation when the consultant noticed a large mass pressing on my bladder.

My PSA was initially 1000+ and once I started HT this dropped to single figures.

The main thing is that he has started HT which will put the Cancer into hibernation for the time being.

Once you meet your Cancer Consult your husband's PSA should have dropped and then they can make a plan going forward.

I have just had Radiotherapy myself to my pelvis to calm down my bone pain which has made a big difference.

Please come back to me if I can help you further???

Prostate Worrier.

Hello Rosiejen

I’m  so sorry to hear of your husband’s diagnosis. It hits us all very hard!  

First, the hormone injection will reduce the testosterone circulating in your husband’s body. This is what the cancer needs to ‘feed on’ to grow and spread. The problem with the hormone therapy is that it has side effects such as hot sweaters, weight gain, loss of energy etc. I would suggest you look up the information provided by www.prostatecanceruk.org for more explanations of diagnosis and treatment .

The older method of doing the biopsy was by going through the back passage with the risks of infection and missing the tumour altogether. The newer, less risky and more reliable way is a ‘template biopsy’ which is guided by scan and goes through the perineum. Neither is particularly pleasant but not unbearably so ( my husband’s summing up of the template biopsy). Knowing what I now know, I would push for the template biopsy.

Don’t be surprised if more scans are requested after the biopsy to give a complete picture of the extent of any spread.

after that, your husband’s team will have a clear picture for the best way forward. A more recently introduction has been that of ‘triplet therapy’ which is a combination of medications including chemo. This ‘hit it hard’ therapy seems to be producing good results. There is a whole armoury, however, of therapeutic interventions out there - all of which can manage the cancer even if they can’t cure it. The important thing to hang on to at this stage is that in most cases prostate cancer is slow growing, can be well controlled , if not cured, there are lots of things to throw at it and research means new treatments are coming down the track!

I would just add something for yourself! The diagnosis comes as a big shock accompanied by a lot of different emotional responses. My own responses have been grief ( for the future I felt had been lost), fear ( would I lose my husband) and sheer anger directed at the NHS and what I saw was ineptitude at the hospital. I cried enough tears to fill a reservoir! It’s now 2, years since my husband was diagnosed! Looking back, I realise that I needed support to support him. The picture is not all bad! We have joined forces in fighting this illness and, in doing so, we have become much closer and have both realised we must enjoy life while we can! We do things that bring us happiness and satisfaction - whether it’s hobbies, family, gardening or just being darned lazy!!!

I do wish you both well as you step out on this journey that we are all on! I hope you will find the same amount of support and information from all the wonderful people on this forum as I did when things looked so bleak! 

.

.

Hello Rosiejen 

Another warm welcome to the Macmillan Online Prostate Community - I am so sorry to find you here.

I am a bit late to the "party" but it's Saturday so I have had a few hours off!

So first off - don't get cross with yourself - we men are the problem - we don't get ill and are too proud to tell you if we are! But he's now on the cancer pathway and that's great. Worriedwife has put up a cracking reply so I would just add a few other bits-

Prostate Cancer lives on testosterone so the hormone therapy is to reduce your husbands testosterone and starve the cancer of it's food - after the biopsy  - your oncology team will give you both a diagnosis and a treatment plan.

Whatever the treatment plan - the treatments will have side effects - the most common is fatigue - so he needs to keep as fit as possible ("hard on hormone therapy"). There are may more side effects but he won't get them all.

Hormone therapy can weaken his bone structure - so ask his team if he needs to be on Calcium and Vitamin D tablets (often overlooked by the medical team).

Here at Macmillan we have a guide to Advanced Prostate Cancer and here's the link-

https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer/advanced-prostate-cancer

We as a Community are here for you - any questions - however trivial you think they are - ask - someone will have an answer.

We also have a Support line on 0808 808 00 00 (8am to 8pm 7 days a week) there are a great bunch of people and if you need any extra support please feel free to contact them.

I hope the above helps - we are with you on this journey.

Best wishes - Brian.

Hi

I have bone mets, plus a few other things, but I’m f your urology team is up to speed, then after the intial scans etc then they will plot out a treatment for you, in my case it was chemotherapy six treatments, followed by twenty sessions of radiotherapy.

They may go another way, depends on your state of health.

Always have questions ready, in my case I always wanted a plan B.

Never feel bad about having PC, it’s one many suffer from, I’ve been fighting mine for well over eight years. I had a Gleason of 9/10 a PSA of 893 so you can live for a long time.

Stay Safe

Joe