Husband recently diagnosed with Stage 4 Prostate Cancer.

Hi WW2,

We had a second opinion at the Royal Marsden while waiting for the first opinion ( which is tomorrow)  and we are still working out what we are going to do  NHS-vs-Private. you can phone the Royal Marsden direct and inquire as to their fees. I think the consultancy is around £450ish, I can't remember exactly it does say on their website, but we felt it was worth every penny at this initial consultancy stage for speed. We also had a PET scan and hormone treatment steroids etc, you also get pampered with a direct email to the consultant with an almost immediate reply, for any questions.  My partner flashed me the bill the other day and I was too scared to look. It came in at about 4k plus. I'm not suggesting private is the way to go by any means, but at this stage for us we wanted to know everything and fast. Tomorrow we will make a judgement after the NHS consultancy. To be honest I think its going to be exactly the same option and treatment,  probably not the Abiraterone but a similar alternative. here's a link to their website.    https://www.royalmarsden.nhs.k/your-care/cancer-types/urological/prostate-cancer

I think a second opinion from a top hospital is worth having, that way you've picked the brains of some of the best people in the country. They have a vast knowledge of whats new and also my partner was offered to participate in some generic testing research. Consider this one consultancy meeting as a one off spend for peace of mind. 

You don't need to go through your MDT team. We spoke to our GP and contacted the Royal M. all the scans that we had were sent over to the consultant at the RM.  just phone, the enquires number on the website. It's very straight forwards. 

Best wishes to you both'

Hi Barry

I've had a couple of second opinions privately and as u say, well worth it. opinions only though not treatment.

If u decide on going with the RM could  u

not change  NHS hospitals by asking your GP for a new referral.

Steve 

Hi Steve,

Yes possible I guess, good point i'll look into that. Our main concern at the time was to get treatment ASAP with the PSA reading and we basically just run with it. Now things have calmed down a bit and he has HT, we feel we have a bit more time to see whats available. We are really near Addenbrookes hospital in Cambridge which is really good , so I would think that's where he will go for Radiotherapy with the NHS. It's just that initial wait thats alarming. I feel that if someone has a PSA over 100 they should automatically be given HT not wait for 3-4 months to see a consultant or have to actually ask a GP to prescribe it off your own back.. There's too many people waiting politely and in line to be seen. It's really wrong, I'm not going to get all political about how the NHS is in crisis to some degree, But it's really not fair. It causes a divide between people that wrong. Anyway, don' t get me started on that... So, we will see how my partners actual first opinion with the NHS Consultant goes tomorrow, just over three months from his initial diagnosis.

All the best L

Yes, just reminded myself of your profile, certainly looks like HT should have started as soon as high PSA and escaped from gland was obvious..

Good luck 

Steve 

Thank you BarryW so much for that info, I really hope you guys get the top treatment that's right for.  I will now book a consultation with royal Marsden to get quick idea of what the options are, and what works best for other half's cancer . we then can talk  with NHS with at least options from an independent  professional,   respected consultation. 

Hi there, 

I’m not sure if you’ll see this as you posted a year ago, but I am skimming forums re:prostate cancer as my Dad (77) was just diagnosed late stage prostate cancer and we’re absolutely heartbroken. Not sure of options yet as he needs a bone scan and CT this week to check for spread. I want to equip myself with research, knowledge and patient stories and experiences as we embark on this dreaded journey that too many people are sadly on. 

May I ask how your husband is doing? 

Thanks so much..
 

Hi LaurenPed,

I am so sorry to hear about your Dad diagnosis. My husband, 75 was diagnosed almost 3 months ago. You can read about his diagnosis if you click on our name and the profile will come up.

The first thing to say is, you are now in the most darkest days before the full diagnosis and start of treatment. I was absolutely heartbroken in the first few days. I thought it is the end of it! When i discovered this community and start reading the profiles I realized it is not the end at all. Your Dad and family are in the start of a journey of treatments. They are so many options and medicine especially prostate cancer come a long way in the last few years.  We are now into a treatment routine. We met the oncologist and the team ( which will be the most important people in your Dad life) and my husband started treatment right away. He is on hormone therapy and will be on Radiotherapy later in the spring. He lives normal life now. Good quality life. He is a bit tired from the HT but fight it with being active physically and mentally.

Please, stick with this community, it is amazing, the people here are so knowledgeable and helpful and they all had hugh experience first hand.

I know from our experience that when the full diagnosis end and treatment began we just relaxed into it. 

Do not shy away and ask the community here any questions you want.

Best wishes

Lots of love

Dafna

Hello LaurenPed  A warm welcome to the online Prostate Community. I am so sorry to find you here.

To get the best out of the forum may I make a few suggestions.

* You "join" the Prostate Forum - you can do this be clicking on the black banner at the bottom of the page.

* Once you have joined the forum, can you add to your dad's profile. it would help to have his diagnosis TNM stage, Gleason Score and PSA. To do this go to the chair - top right on your home page - then "profile" and then "edit".

* You can then introduce yourself by starting a thread (+New) in the black box at the top right of the page. That way more Community members will see your post and you will get a bigger response.

I hope this helps - if you have any issues in navigating the site (or anything else) please do come back to me.

Best wishes - Brian.

LaurenPed - it is bleak and really dark at first , i found the first 3 months all i did was cry and all my husband and I did was argue - we were both handling it different .

i feel for you as you don’t know the full results yet and that is the hardest part.  

im not an expert on this but from reading Prostrate cancer treatment has come a long way and there are many many treatment options . my DH had short term hormone treatment and then radiotherapy . this gave the all clear in 2020 and a zero  PSA (blood marker for prostrate cancer ) and for most men this a cure . 

my husband is doing well all considering .

its been a year since we found out his had spread and is incurable . we ended being forced to change  consultants due to location ,  which was the best thing ever -  

new consultant suggested caution and delayed any systemic treatment , which was terrifying. however it has meant we have had a year with no HT and No Chemo - my hubby was going to refuse chemo as he didn’t feel he was strong enough .

The PSA has been stable, and the scans don’t show any further  spread this year which is fantastic - new consultant doesn’t rely on PCMA scans as he feels they are not as reliable for prostrate  cancers where prostrate has been removed and that produce low PSA which is the type DH has. This consultant treats based on pain and quality of life, so we are on a watch and wait process .

DH has been very fatigued at times and has become an old 62 yr old if you know what i mean . his incontinence is getting worse as is the 4-8 times to the bathroom each night. he  has had blood in urine which is being put down to the side effects of the radiology  as its vascular and coming from the area where the prostrate was . 

we know we have a long way to go , and i think about his cancer less than I used to and we are doing practical things like trying to pay more of the mortgage to cover times when i can’t work and doing bucket list activities while he is well enough .

all in all a much better year than i could ever have hoped for - 

Thank you so much for taking the time to reply. I’m happy to hear your husband is doing okay. 

would you please be able to share your husband’s Gleason score? If you’re not able to share, no problem. My Dad was diagnosed with a score of 10 which is the highest :( he doesn’t have any painful symptoms as of yet. He looks great and feels good. We’re still waiting for the bone scan and PET to check for spread…hopefully it hasn’t. The doctor did say at this stage it is incurable ..I’m praying it is still treatable though! 

I’m in Toronto Canada, although I joined this forum because I have found it to be helpful in sharing information and experiences and it has given me a little glimmer of hope.