Metastatic prostate cancer

Hi Myrtille, thank you, getting married has been a long time coming, but she's well worth the wait. Unfortunately no chemotherapy or surgery involving a general anaesthetic for me as I wouldn't survive either, aggressive radiotherapy worked really well, much better than we hoped, though only possible once, and though my cancer adapts to HT quicker than most I still have options B, C and D to come and who knows what new treatments will be available over the next few years, physically i am doing well, just having a tough time emotionally with family, Good luck with triplet therapy, It's an excellent treatment, best wishes to you both.

Eddie xx

Hi again Myrtille ,

l have just read through the various (some detailed) replies, and it reinforces my admiration of our small but very caring, thoughtful & knowledgeable community,

The usual suspects are there, so well done Millibob eddiel jacobanddafna Alwayshope David2017 Worriedwife , along with relative newcomers Grantyo12 Robert1 Slartibartfast 

I can imagine how comforting your replies were for Myrtille - especially how all this input appeared in less than 2 days. Well done all of you!    AW

Hi Myrtille,

I love your optimism, it is so refreshing and it will help you great deal in this fight.

Well the chemo question - this is a big one for me and it did bothered me lots in the first 2 months. Although Jacob is 75 he is fit and healthy and very strong man mentally and physically. In our first meeting with the oncologist I opened the meeting by saying he can take anything you throw at him and to prove that the oncologist and Jacob gone into arm wrestling and of course Jacob won. But... the oncologist was strongly insisting that the chemo is not right now and he should have 2nd generation HT plus RT. He said Jacob has great quality of life and lets keep him with no chemo.

Why not chemo? In my opinion two reasons:

first the age. Although your husband diagnosis is almost identical to Jacob ( he also have 3 bones involved) I think the medic school of thought is that young people will take the chemo better.

Second is the trust. Different hospital trusts go in different treatment routes.

The HT Jacob is getting is very strong: Zoladex + Enzulatemide plus RT.

We both decided not to fight for chemo at the moment and when the HT will show signs of fading to go back to the table for that.

Lots of love

Dafna

‘Arm wrestling with the oncologist” - that’s a new one!!!        AW

 Myrtille ,  I am so pleased your OH is starting to open up with other people, partly for his own good and also to make others aware of this illness. Having a positive attitude goes a very long way to help his outcome.

You mentioned that he is on Bicalutamide which is definitely the right start then a few weeks later, the regular monthly/3 monthly HT.  Apparently, Bicalutamide is given to prevent flares once the main HT starts, so you can now relax knowing that treatment is underway and nothing else should be done for a few months.  You mentioned that you were researching and our advice on here is to avoid Google and just use the official Prostate or MacMillan sites.  Ask any questions and you will get some great advice from Brian’s (Millibob ) flock!

You asked if I had chemo and the answer is yes.  You can see other peoples bio by clicking on their avatar (in my case St Brelades Bay, Jersey).  Best wishes,  David

Hi Mytrille.

Good morning and welcome to our prostate cancer family it's great to meet you today.

Yes I am also a Treatable not Currable on here. My journey started last June when my cancer was picked up following a bladder scan.

My PSA came back at 1000+ and things looked very bleak. My consultant put me onto Hormone Therapy straight away and nearly 12mnts on my PSA is now 0.9 which is crazy.

My consultant has now introduced some calcium tablets as the cancer has spread to my bones. The calcium tablets should help strengthen my bones helping my condition going forward.

Please please let me know if there is anything that I can help/support you with??

Prostate Worrier.

Hello Myrtle

Thank you for asking. My husband has just finished his 18 months hormone therapy ‘sentence’. He is making a determined effort to lose weight and get back to peak ( for him) fitness. He is active all day, everyday right now as he’s trying to catch up on maintenance etc around our home.

it sounds very much as if you are working very much as a team through these worrying times? My experience is that we had no choice but to fight this together. We each brought our own knowledge and skills to the fore and supported each other. I have said many times that prostate cancer is a ‘couples illness’! It impacts you both! 

I see you have had a lot of replies and support from fellow ‘passengers’ on this journey. I hope it has given you hope and comfort . The first few weeks and months are the hardest and then things somehow settle and you adjust and adapt.

take of yourselves and I hope all goes well on your own journey. Do let us know how you get on! Xx

Good morning, my husband was diagnosed 2 weeks ago with advanced PCa. Spread to iliac node and pelvic wall node. No biopsy done as they biopsies a node. Psa 143 and no bone mets. He has been given bicultimide and had his first zoladex. He has been referred to oncology and not sure what comes next. Any advice welcome as I’m still in turmoil. 

Hi Majestic 

of course you will be in turmoil. We all were, during the diagnostic and confirmation stages.  However, all is not lost. Your hubby has, correctly, been given the pills and jab to stop the cancer in its tracks - yes, literally.  My PSA dropped within a week of the tablets and a day of my first jab!  I think it unlikely that he is a candidate for surgery ( as it’s in the nodes, it’s already escaped) but those nodes are in the pelvic area.  This means that full pelvic radiation (a course of 7 weeks, M-F) is probably on the cards …. With CURATIVE intent.  No bone mets - that’s great news - so let’s hope that the very accurate LINAC radiation will kill all the cancer and you can both get on with your lives.

have a read of my bio - I had radiation for four and a half weeks and it was fine.  Don’t worry.  Keep in touch with our little gang, and take this as your initial welcome.  Our gang leader is Millibob , who I’m sure will be long shortly.  Incidentally, his PSA was 183 (I think)  and I’m sure he can offer much advice as your hubby will have a similar treatment (hopefully without any complications).   AW

Hello Majestic and welcome to this forum - which was, for me, a life saver when I was going through the turmoil you are experiencing right now!

The first few weeks and months are the worst part of this journey! I think all of us wives and partners experience the shock, the fear and the worry for their loved ones. All known certainties and plans seem to have been swept away and replaced by something so threatening, unknown and scary.

However, these emotions do settle in time and you find that life can still be lived and enjoyed! There are lots of different treatments out there for all stages of prostate cancer. It might not be curable but it is certainly treatable! There are many people posting on this forum who are working their way through plans ABCD....etc. There is also a lot of ongoing research and so who knows what might be coming down the track!!!

You ask for advice! Well, my first bit of advice would be to make sure you are as informed as possible about this disease, treatment options etc. www.prostatecanceruk.org is a website that has loads of easily understood info for different stages of PC, different treatments, side effects etc. If you do decide to 'surf the net' make sure that you are looking at responsible, evidence based web sites such as NICE guidelines, peer reviewed academic papers etc. There are some sites out there which I would suggest are less reliable and, sometimes, inredibly scary or misleading. Armed with good knowledge, you are better placed to take an equal part in any hospital consultations etc.

My next piece of advice is to write out a list of the questions you want to ask before any consultation. Print out 3 copies - one for the consultant, one for your husband and one for yourself. Some people here have suggested recording the consultations. To do this and out of courtesy, I would suggest you ask the clinician first. I used to take notes!

I also kept a diary - dates, names and their contact details and what was said. This was really valuable in challenging 'you said but this has happened' etc. Similarly, many of us have agreed that, if dealing with the NHS, you have to be politely assertive in trying to get timely appointments. We found that saying we would drop everything and get to the hospital for an appointment that had been cancelled worked wonders in getting quickly through the 'treacle' in the system!

Your husband will no doubt have some side effects of the hormone therapy eg, fatigue, sweats, muscle weakening, weight gain, erectile disfunction, loss of libido, brain fog. Some of these are distressing for them and distressing for us to watch. I think there is a balance between being supportive and understanding and being too sympathetic etc  so that they sink into their depths of misery! So, there needs to be some encouragement (dare I say it, cajoling?) to keep going. 

Finally, I would advise arranging treats, special outings, holidays etc. Travel insurance might be a cost but the benefits of a change of scenery and knowing that life can and does go on and can be enjoyed are the benefits for both of you!

I am sure others will reply with lots of their own advice and support! Don't be afraid to ask! We are all on the same journey - at different stages and along different pathways but this darned PC is no respecter of persons!!!

Best of luck to you both x