Prostate bone and lymph nodes

Hello Enya 52, Sorry to here your news, please don't despair. My husband is the same age and has multiple mets on his bone spine, ribs and pelvis.

He was started straight on hormone treatment tablets and injections also steroids, he is having 6 rounds of chemo and has had 2 rounds so far, luckily he has not had to many side effects from tablets or chemo.

At the moment he has been diagnosed with type 2 diabetes not help by the steroids, he recently also been diagnosed with degeneration of the spine nothing to do with the cancer.

The hospital will help you and my not be able to cure you but give you good treatment. My husband's psa was 473 but would have been 973 but on medication for enlarged 

I had a thought I didn't say my husband's psa has dropped to 1.87 and he is still active, mowed both of our lawns today, put in our last fence panel and did some painting.

Yes your life will change,  it is all you will think about for a while, I'm hoping that will get less as time goes on.

All the best for your journey. 

Hi Enya52.

Good afternoon it's great to meet you today!!

Yes I am now 12mnts into my Terminal journey and I have now been on Hormone Therapy since the beginning.

My PSA was initially 1000+ and following the HT it is now down to 0.9.

HT is generally the starting point I was told in the beginning that I would have chemo next but since the HT has worked so well nothing has been mentioned since.

There are many members who have been on Radiotherapy and Chemo as well as HT.

Yes it is best to see what you're oncology team think is the best treatment plan 

Please please don't worry & stay positive as this will make a big difference believe me.

You will soon be having some of the other members posting with their help and support but please let me know if there is anything else that I can help/support you with???

Prostate Worrier.

Hello again Enya52 .

Not necessarily. There are many of us on the forum who have either got T4 cancer or are the partner of someone with it. What we have learnt is that there is no standard treatment route. What the experts will be looking for is how well your husband is responding to the first line of treatment - in his case the Degarelix so I would expect he has had another PSA test to check on progress before the next injection? Chemotherapy could be an option but different treatments are also being trialled. It all depends on where you live and whether your oncologist has signed up for them. Sometimes HT is sufficient for now. My husband started with HT and radiotherapy, then chemotherapy after 3 years. 

No it is not a bleak outlook as there is a whole battery of treatments available now to keep the cancer under control. No one will give you a prognosis because it depends on how the cancer reacts to the treatment and how well your husband tolerates it. Stay positive - I know it is difficult and we all have wobbles along the way. 

Hi Enya52 , I think you have been given some great advice already. I know that at the start, your mind just goes into overdrive, but gradually you will get back to normal.  I am 7 years into my journey for non curative cancer and still hanging on!  We all react differently to treatments but the way new treatments are progressing is very encouraging.  Best wishes. David

Hi there

Thank you! How long did it take for your psa to drop that low? My husbands was 1356 on diagnosis and he has been on HT since mid April, he recently had another psa test of which we will get the result on Tuesday? 

Hello Enya52 .

The rate of PSA reduction will vary depending on what hormone therapy you are given. With Degarelix there is a rapid drop in Testosterone within a couple of days so I would expect a more rapid PSA drop compared to someone who is initially given Bicalutamide and then a follow up of something like Prostap or Decapeptyl. The data suggests that men on Degarelix should have a significant PSA drop with 8 weeks of first having the therapy, whereas for those on the other treatments it is between 10 - 12 weeks, possibly due to the lag time of having the implant/injection due to needing prior treatment with Bicalutamide to prevent testosterone flare. Degarelix works in a different way in that you do not have the initial flare.

Ok yes I understand that. I'm so nervous about our appointment on Tuesday, I hate sitting there whilst they tell my husband these things as he takes it all so well and all I want to do is cry, but I don't because it won't help him. At the moment I am also worried as he is not keen on having chemo.

Also the urologist said 'spots' on his thigh, chest, spine and skull bones and lymph nodes in localised area? Does this mean only small breakout? And only lymph nodes around the prostate? Is there any chance the digarelix will be sufficient enough? Or radiotherapy instead of chemo? Is that possible with bone mets and lymph spread? 

Hello Enya,  I often said on here about how much I cried in those first weeks/ months after the diagnosis! Yes, it could be, in one way, something that might upset our husbands but, in another way, it shows them how precious they are to us! My husband went through the diagnostics at a time when we were still having to wear masks. I don’t cry gracefully! I cry floods of tears and my nose streams! I never did work out how to blow my nose and mop the tears with a mask on !!! 

Fortunately we did not have to go through chemo but I know it’s

 there waiting for us if we need it. I would be worried about side effects ( probably besides myself., ) but I would also recognise it as hopefully a means of keeping him here longer at my side.

i do know that some people here seem to be offered the proverbial ‘kitchen sink’ to be thrown at this darned disease to blast it into the long grass, I am sure they will tell you about their experiences and hopefully you will not feel you are battling this alone and have the support of everyone here.

Hello Enya52 .

Oh how I know about not wanting to cry in front of my husband but then doing it in private. Staying strong can feel very difficult at times but somehow we manage and in fact this diagnosis has brought us closer together.

The Degarelix on its own will suppress the cancer for a while but the experts will be looking to provide a longer term solution to controlling the cancer. Yes, if the reports say that the lymph node involvement is local then it is confined to those in the pelvic area of which there are many so you need to know how many and what size are they. The bone mets are distant and widespread which is why they are talking about a systemic approach with chemotherapy. My husband was not keen on this, in fact he was adamant that he did not want it initially. It takes a while for our men to assimilate their diagnosis and come to terms with the risk/benefits of the different treatments. All I can say is that at the end of hubbys chemotherapy his comment was that it was not as bad as he had feared. The doctors will be looking to keep your husband with you for as long as possible and will offer treatment to give him the best quality of life long term. 

I forgot to say that radiotherapy is a possibility for the pelvic area, and has been proved to be successful. A more targeted radiotherapy is possible on distant mets dependent on the number and is sometimes used further down the line if the systemic treatments have not worked on them. It is also an option if new mets appear.