Husband not responding to hormone therapy

Out of curiosity, how did they know? Did they do some repeat imaging after 4 months on hormone therapy, or was this the planning scan for the radiotherapy?
What's happened to his PSA while on hormone therapy?

In his biopsy results, what type of prostate cancer was found? The most common type is acinar adenocarcinomar, but there are around 27 other known types of prostate cancer.

Usually time spent on hormone therapy before radiotherapy is beneficial in knocking back the cancer, but if it isnt, then are they intending to move quickly to radiotherapy?

Hello Seasgair 

Welcome to the group although I am so sorry to find you joining us.

Radiotherapy has come on in leaps and bounds in the last few years and is now very accurate and can target the precise area that needs to be treated so try not to worry. There is a protective gel called "SpaceOAR" which can be injected before treatment to protect the rectum - it's not generally provided on the NHS but it's worth asking about.

As for Hormone Therapy - quite often if one set of HT drugs fails others work so there's Leuprolide, Degarelix and Zoladex along with the second generation alternatives Xtandi etc so I am sure your Oncologist will have a plan.

It would help us to help you if you could add your husband's diagnosis details to his profile  - PSA results, Gleason Score and TNM along with any other information. You say he does not have a high PSA count - is he a low secreater?

Best wishes - Brian.

Hello Andy

Thank you for getting in touch. 
Yes, they carried out a repeat scan after 4 months on hormone therapy, in preparation for potential radiotherapy treatment. 

His PSA has reduced while on hormone therapy from an initial reading before he started of 5.1 to 1.3

I’m afraid I don’t know what type of Prostate cancer he has but I’ll try and find out. 

Yes, they want to move onto radiotherapy quickly but the oncologists wants to discuss his case with other colleagues to get a consensus on the best course of action because his results have not been as expected. He’s suggested that his cancer may be heterogeneous and it may be that they need to try and work out if there is another type of hormone therapy which would help him. He is wondering if the cancer might have started outside of his prostate but that enquiry seems to have been dismissed. Perhaps it’s not possible? 

The oncologist  explained that with radiotherapy he’d like to give him the highest dose possible but that the ‘gold seeding’ option was not currently available until June (he implied this was because of the lack of physical resources but we’re uncertain if this is people or the gold ‘seeds’) and thinks therefore than the consultant group  may instead recommend a lower dose standard form of radiotherapy in mid April, following a further CT scan. 

I’m still learning the terminology for this journey we are on so please excuse me in this. 

He’s been very stoical and optimistic up until now but yesterday has knocked us both and I’m just trying to understand what this all means for him and perhaps to be more informed so that we can ask the right questions. 

We visited a Maggie’s centre for the first time yesterday and that was such a help. I’m hoping he will take up the offer to join a support group, but I think that will take time. 

Sorry for the scrappy response. I will have to log in later after work, but have really appreciated you getting back to me. 

Hello Brian,

Thank you for getting in touch and  for your advice regarding ‘spaceOAR’ which we’ll follow up. 

It’s also incredibly helpful to read of the many other therapies which might be offered. That gives me more hope. 

My husband hasn’t joined this forum yet so doesn’t have a profile, but his initial diagnosis was T3B / N1 /M0,  with a 4:4 Gleason score (I think). Perhaps this has changed over the last 4 months given the lack of success with the hormone therapy?

His PSA was initially 5.1 dropping  to 1.3 but the Consultant  explained that this type of prostate cancer does not exhibit in the same way.

I‘be added a little more detail to my previous response which I hope is helpful in explaining where we are. 

Thank you, 

I think it unlikely they would offer a rectal spacer (such as SpaceOAR) for T3bN1. It would increase the risk of pushing any micro-mets (mets too small to show on a scan) outside of the treatment field. If there are significant delays in treatment, ask about being referred somewhere else, although that might mean more traveling.

I'm wondering if they're talking about doing Brachytherapy Boost treatment, which is a combination of brachytherapy radiotherapy and external beam radiotherapy. Not all brachytherapy centres can do brachytherapy for T3b. Mount Vernon Cancer Centre does pick up referrals where this is required, and also where hot lymph nodes (N1) need to be included in the treatment plan. I don't know where you are in the country or which hospital you're currently at.

Chemotherapy might be beneficial in this case - I'm sure that's something your oncologist will be thinking about.

HiSeasgair 

Sorry to find you in this position, you may want to have a read of my husbands profile as there could be helpful bits within it . (RT and SpaceOar.) He was also a T3b at diagnosis. Possibly a good blast of RT and killing off a large bulk of cancer cells could make a big difference. Unburden his body of the “mothership “of cells and then another go of HT to suffocate the rest . It’s made a big difference to BW. Just go for it all guns blazing.xx

L

Hello BW,

Thank you for getting in touch and for your kind, wise words and encouragement. ‘All guns blazing’ is exactly what we feel is needed. We had some good news this morning - the Cancer team have discussed his case and somehow managed to find the elusive ‘gold seeds’ and he has been given an appointment for these to be inserted next week, is waiting for another CT scan and a date for the RT to start. Mentally this has really lifted his mood. 

I read through your account of your husband’s treatment  and recognised that roller coaster of emotions and was especially grateful for your honesty and humour. We are a similar age with three grown up children. My husband has been continuing going to the gym onow or twice a week, plus squash and occasional game of golf. Mentally it all helps but it’s a balance not to overdo things. 
Nx 

Hi Andy

Thank you for your detailed response and advice. We’ll follow this up with the oncologist. 

We haven’t been given much detail on the proposed therapy yet but it does sound like it could be the Brachytherapy Boost treatment, you describe.  

We received the welcome news today that my husband is being offered the ‘gold seeding’ treatment next week in readiness for RT.  Given that yesterday we were told that it wasn’t available to my husband this has been a welcome boost to us both. We are based in Scotland with our closest Cancer Centre being provided by the Western General in Edinburgh. 

I’ve really appreciated the support offered here in allowing me to ask all these questions. Thank you. 

I think the 'gold seeding' is probably a reference to gold fiduciary markers, rather than brachytherapy. They put in 3 gold markers around the prostate, which show up well on X-rays, to get the positioning spot on for the radiotherapy. (The other way to do this is to do a cone beam CT scan just before each treatment.)

Hello Seasgair ,

Your diagnosis matches mine, with the exception that my Gleason Score was 4:5. 

My PSA fell faster than yours, though that may be because it started higher. Radiotherapy will be likely I would hope. I was offered 74 Greys of radiotherapy over seven weeks. It was not the most wonderful thing I have ever done, but a long way from the worst either. The side effects were minimal.

There is an idea that knocking out the origin of the tumour helps with other treatments on anything that remains.

You can talk to a specialist nurse for Macmillan on this number, 0808 808 00 00, or someone in a similar position at Prostate Cancer UK on 0800 074 8383.

I am pretty sure that, with talking to people who actually know what they are talking about (unlike me), and looking through this group, you will come to see that, in the words of the Oncologist treating me "if that doesn't work there are a lot more tools in the box".