Results Day

Hello Millibob

Thank you for your reply. I don’t feel brave today. Yesterday together we were strong. Today on my own I feel sad and shocked but comforted by this online support. Husband has gone into work. Commutes into London.

I suggested my husband join but he says he’s not ready yet. I think he’s still processing it. I had already started the campaign by joining here and gaining knowledge for the battle ahead.

I think he was hoping it was not so serious as surgery, ht and radiotherapy were on the cards to begin with. I’m still feeling a bit “why is surgery not an option”, despite being told it’s not by the consultant.

I'm also concerned about the 12 week wait to see an oncologist. Setting off the anxiety again.

I need to re read the Triplet therapy. And all of the paperwork we’ve been given. Still trying to get to grips with the bicalutamide and LHRH injections.

Thank you for the support.

Don’t worry!! It’s just the situation and probably my hormones too!! 

I had a couple of moments yesterday after the diagnosis from the consultant as we were driving home when I felt tearful as it was such a shock and I could see my husband was shocked too. He just wants to make sure I’m ok financially whereas I’d rather he was just around longer!

Mourning all the holiday, trips, experiences we’ve sacrificed for his work, which he enjoys but is very stressful and realising that we now should be living in the moment.

It is so raw and scary right now. But your advice about settling into treatment and life etc is so helpful. I think the energy and fatigue is something that concerns me but I’m sure we will find a way.

I haven’t even shared it with my parents in their mid 80s as I’m not sure they’d understand and I’ve had to help them through many health issues. They’re a 2 1/2 hour drive away so it’s going to be fun keeping up with everything.

Thank you for being there. X

Hi GilliB.

Sorry to use the word "Terminal" as I don't have that word in my diary!!!

Yes I was given "No Chance" in 1998 so that word was also"rubbed out of my mind "

So the only thing that has changed in nearly 12mnts is the dramatic drop in my PSA number.

The consultant at the first appointment was very very "doom and gloom" but yet again I have showed him that "anything is possible"

So being "Positive" really really makes a difference believe me!!!!

Prostate Worrier.

Hi Gilli B I’m very sorry that you’ve had to join our club with your husbands diagnosis and your heads will be all over the place,regards hormone therapy I started it 3 weeks ago and have had little side effects so far apart from hot flushes now and again,but it’s reassuring to know that this stops the cancer growing in its tracks which I was worried about before I started treatment,everyone on here knows what your going through and I hope you’s both get some comfort soon xxxx

Hello GilliB .

This was definitely not the diagnosis you were expecting and it takes a while to come to terms with. Both my husband and I had tears at the beginning, and still do occasionally when I see how he struggles with the side effects from treatment but these low days are rare and the brilliant people on the forum pull us up and life carries on. We have learnt to take advantage of the good days and enjoy doing things together - definitely priorities changed.

Your husband's diagnosis shows that the cancer has spread out of the prostate capsule into the seminal vesicles, as well as into near and distant lymph nodes. The good news is that there is no bone spread. Surgery is usually taken off the table once spread has been diagnosed because there is a real risk that it cannot all be taken out and may seed into other areas. Bicalutamide has started the process by blocking the cancer from getting at its food, no matter where the cancer is in the body- testosterone. The injections/implant stops testosterone being produced. Many things then come into play before a treatment plan is finalised but the goal is to give your husband a good quality of life for as long as possible. The injections/implants are given either every 28days 12 weeks or monthly, 3 or 6 monthly and probably be continued for life. After the Bicalutamide a second generation antiandrogen is often added in and normally involve Abiraterone, Aptalutamide, Enzalutamide or Darolutamide. These drugs rapidly reduce the PSA and help to shrink the cancer. The triplet therapy also adds in Chemotherapy which works systemically to kill the cancer. Radiotherapy in several different forms are also effective at destroying the cancer but in a more targeted way. 

Here is some information on advanced prostate cancer which may give you a starter.

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/advanced-prostate-cancer

We are very much further down the line as hubby was diagnosed in July 2020 but thanks to all the recent advances he is still going strong, and there are more treatments available for the future. It has brought us closer together and we can say that we still have a good quality of life but we do have to work round the fatigue.

Hi Gilli

I am sorry to hear about your OH . I do have a couple of queries, though and maybe they will help you .

I assume that u had the Pet scan done privately and then u went to NHS and gave them the scan results to study and then you went to the private hospital to see what they said?

The first result obviously just outside the gland and in one or more nodes as would be normal with a T3.

The second result shows . apparently, that  there are mets elsewhere so not sure why it says T3, if spread elsewhere should be a T4. obviously could be a mistake,

Not sure if it's right to give a life expectancy at this stage.

I would say that it's crucial to double check on what the Pet scan is actually showing because after all he is saying 'more likely to be' which isn't the same as def.

sorry to ramble on but  important to know what's what before embarking on a treatment plan

also sorry if I'm querying incorrectly

best wishes

Steve

Hi Gill,

I'm sorry about your husbands diagnosis, it's a terrible shock to have such news and also the prognosis is a massive slap in the face. But things can change, the treatments are very good and what was 5 years several years ago is now more like 10 plus now. Things are discovered all the time and there are men here that were only predicted a couple years and are still going strong years later. What is available now will be outdated within a very short time and other combinations of treatments will take their place. Am I right in thinking that you have a private health plan? Are you fully covered? If so why not take advantage of that and move over to your other consultant? 

Best wishes to you both

Lorraine

Hi Grundo .

I am wondering if this can help with our understanding of T3 and T4 cancers.

https://radiopaedia.org/articles/prostate-cancer-staging-1

Hello GilliB 

My friend Alwayshope has put up a cracking post and as per usual has stolen my thunder about testosterone and triplet therapy.

Easy for me to say - you now know where you stand - you are going to have a hard 6 months - plans will go out of the window.

Remember the word "treatable". I know I am different and on a "curative pathway" but I was quite close to death at one point - now - work and money don't matter.

This blasted cancer has brought me and Mrs Millibob closer and even though the HT has put a stop to many things - i have reduced work by over a half (I am a self employed accountant) and we try and have 15/16 weeks holiday a year - as I write this I am on my balcony in Turkey .

You need to look after yourself as well - as he will need you (he doesn't think so now - but he will!!).

Relax tonight - have a glass of wine and you are not in this fight alone - it's OUR Community and WE are all with you.

Best wishes - Brian.

Yes thanks Always hope, always helpful to highlight the staging

Regards 

Steve