Results Day

Hello Gilli

it sounds very much as if you and your husband are absolutely reeling with shock after your appointments. I’m so sorry that the results were not so good as you had hoped. 

im not a medical expert on hormone therapy but i remember vividly the prostate cancer nurse specialist telling my husband that as soon as he started taking the tablets, the cancer would stop growing and spreading. That brought me a tremendous sense of relief at the time. He took bicalutamide tablets for 28 days. On day 14 he was given a decapeptyl implant which lasted for one month only to make sure he could tolerate it. After that, the dose was increased to last 3 months. I think you can also have 6 monthly injections? These were never offered to my husband.

ive been reading posts on here for almost 2 years now. For me, there are some important take away messages. Prostate cancer is slow growing. Hormone therapy is incredibly effective at controlling the cancer as a first line measure. If and when the cancer learns how to get around the first line medication, there are ‘fall back options’ for controlling it . Many people posting here have progressed to these and can give you more info. I am very vague about the following but I think, too, that sometimes the oncologists decide to throw chemo at the cancer nearer to the beginning of the journey to absolutely give the cancer a hammering? Others will be able to advise you better?

meanwhile, as a wife, I know how frightening this all is, how horrible it is to see one’s husband struggle, how hard to accept this sudden twist of fortune in our lives and having to realise that all known certainties and plans seem to have been taken away from us. In a nutshell, us wives are hit hard by the diagnosis , the worry, treatment side effects etc too.

But - there are some positives! We realised that we are, as humans, very vulnerable and will not live for ever! It made us realise that we have to enjoy the here and now and the good days NOW! Tomorrow can take care of itself. It brought us much closer together - less taking for granted and very much joined in fighting this darned disease. I need him to be here with me as long as possible and he needs me to help him through. We have fought other, different, battles and got through. This is a different battle but we will fight it together as long as we can.

As your treatment pathway becomes more clear, I hope that your turbulent emotions will settle and you will find peace and strength. We are all here for you - ready to pick you up on the less good days and to cheer on the good days. 

take care and I send you both a big hug x

Morning GilliB,

I  understand the horrible feelings you have and the shock, my husband was diagnosed in march straight on hormone treatment which stops the cancer spreading. 

He has just had his 2nd round of chemo because he has extensive bone mets to his spine,ribs and pelvis.

His psa test at the beginning was 473 but would have been higher apart from he was on medication for enlarge prostate, this week his psa had dropped dramatically to 1.87

Sending all my best wishes for the future.

Hi GilliB

Good morning it's great to meet you today.

Yes like your husband I was diagnosed with Terminal Prostate Cancer last June nearly a year ago now and I had a PSA off 1000+.

We were told that it was also Aggressive and not Currable but Treatable .

Like your husband I had no symptoms and it was picked up by my Urologist whilst I was having a bladder scan pre operation.

I was started on Hormone Therapy (injections and tablets) straight away and instantly my PSA numbers dropped like a lead weight.

My PSA number now stands at 0.9 which is crazy. The Hormone Therapy has put my Cancer into hibernation stopping it in its track's.

I was in a similar situation in 1998 when I had a Stroke at the age of 32 and I fought back from that and even though I am now 58 boy I am up for another fight.

Please please come back to me if there's anything that I can help/support you with??

Prostate Worrier.

If you don't mind me asking ,how old is your husband?

Certainly don’t mind you asking at all. He will be 60 next month.

Wow seeing the terminal really hits home!

He had no symptoms but it was picked up at a medical when starting a new job.

Such good news about the hormone therapy stopping it in it’s tracks and well done on doing so well after your stroke at such a young age.

Thank you so much for your kind words. Not feeling quite so alone.

Wishing you and your husband well.

Hello Worriedwife

Thank you so much for your lovely reply. It resonates so much with me and how we were feeling and dealing with the results and then the diagnosis as it became more serious as the day went on.

I have to admit it made me tear up reading your comments this morning. I tried so hard to be strong and supportive yesterday. I think I was probably on auto pilot. We then had to tell our daughters by video call in the evening after the final horrible diagnosis from the consultant and that was so hard but ended with jokes and laughter which was a good thing especially as we had been avoiding making any plans for my husband’s 60th birthday next month.

 I remember reading your comment about the hormone therapy etc when I first joined the online community and was anxiously gleaning information and waiting for results and was not surprised when they said to my husband you’re going to start right now. He was very taken aback by that.

I want him to be around as long as possible. This has made us both realise nothing can be taken for granted and we aren’t around forever. Hearing the consultant be so honest was painful and brought the reality of the situation uncomfortably close.

I know that we can get through this as we’ve weathered some pretty tough times along the way and I’m determined to make it more than the timeline given. I should say “we” as it’s a battle we will fight together. The irony being I’m having HRT as I’m menopausal so he can now join me with the hot flushes etc unfortunately!

Thank you for being there. I’m finding it a strange place to be and I’m not ready to reach out to family and friends yet. It’s so helpful and comforting to know there are other people in the same situation who understand. X

Hello GilliB 

I am so sorry to read your news and thank you for being so brave to share your worries with us all - we as a Community are here for you.

GilliB said:

I should say “we” as it’s a battle we will fight together.

That's such a strong statement and having you by his side will be half the battle. A positive attitude and you both will go far.

As you know the cancer thrives on Testosterone and the Hormone therapy will deprive it of it's "food" and it will stop growing and spreading almost at once.

I have a feeling that your team are going to use the "Triplet Therapy" approach here to hit the cancer hard and fast - a great start to his treatment - and please remember new and more aggressive treatments are being developed all the time.

Feel free to ask anything - you will get answers - use the support line on 0808 808 00 00 (8am to 8pm 7 days a week) if you need anything and if there is anything I can do for the pair of you please let me know.

Best wishes - Brian.

Oh, I’m so sorry - I didn’t want to reduce you to tears! That said - when we were going through the thick of it, I cried morning, noon and night! I don’t know how I didn’t end up totally dehydrated!

it’s all so raw and so very scary for you right now. But, you will settle into the treatment and move on and, actually find that you can still enjoy life. For example, we’ve been working together on a garden project. Nothing special but just enjoying doing something together as and when we want. We enjoyed the sunshine, the peace, the harmony etc. little things become so much more ‘vivid’ and ‘real’ when you have learned that you have to make the most of everything. Similarly, we went on an (electric) bike ride. - just a few miles- looked around a garden centre and had an ice cream and then pedalled home this week. We went to bed that night and my husband said, ‘I’ve really enjoyed today’. Not a mega trip, nor a mega expense but just a day we enjoyed together.

I’m not sure about you both having hot flushes together! My husband only had a few and mostly at night. For me, the hardest thing was seeing him struggle with the lack of energy, brain fog etc. I began to feel that I was always on alert for his mistakes and forgetfulness. 

but yes - all we can do is stand by, support and encourage and hope for the best but always, too, we fear for the worst.

Best of luck and do call on us all here if you need us x