similar experiences

User

Posted 19 Aug 2021 at 10:55

Hi All

Having being diagnosed in June this year, Gleason 9 , Hormone implant in-situ , hot flushes and very low libido already kicking in, I thought it was time to join like suffering survivors and listen to the feedback from those in the know, as listening to my medical team is like a repeat prescription, Same old, same old. Not that I am NOT HUGELY GRATEFUL FOR THE SPEED AT WHICH THE SCANS, BIOPSY, DIAGNOSIS AND TREATMENT, was all put in place, because I am !

However, answers to questions I ask seem to come back verbatim as if from a text book. Not a very humanistic approach, especially as now all correspondence and concerns are expressed by telephone.

So talking to the "boots on the ground" seems like a healthy additive.

Concern: I am informed that the radiotherapy prescribed in addition to hormone implant (for a minimum of three years) is delayed due to the Hospital backlog of patients waiting for treatments, obviously due to Covid. Any comments on what period of time is "safe" to delay RT ? What is the norm, if there is one ? and will the HT hold back any threat of spreading whilst I wait???? Feedback on Your experiences please!

User

Posted 19 Aug 2021 at 23:25

Hi,

It can seem there are limited answers to questions. Sometimes hospitals only tell you what they have on their own menu. You can ask them or find somewhere else yourself. In theory they should transfer your case but still give you aftercare although I stayed with the hospital that treated me as it seemed like a guarantee.

I've never heard of a hormone implant for Prostate treatment. For women it works for 5 years, I just read. Three years sounds a long time for a prostate case as they normally say your body gets used to it and the treatment becomes less effective. That can be anything from months to years. There are several types of hormones so they can give you another one.

I find it hard to believe they'll wait 3 years. Normally it's around 3 to 6 months or sometimes based on a low psa level and then radiotherapy. I've never had hormones or radiotherapy so don't know the full ins and outs. Someone else will probably give a better reply.

All the best,
Peter

User

Posted 19 Aug 2021 at 23:56

Peter

Thanks for your comments which were helpful.
For your information should you want to research further: the implant treatment therapy is called ADT(Androgen Deprivation Therapy) to reduce the production of testosterone . Brand name: Zoladex
Zoladex contains a medicine called goserelin. This belongs to a group of medicines called 'LHRH analogues'. In men, Zoladex is used to treat prostate cancer. It works by reducing the amount of 'testosterone' that is produced by your body.
The Implant is replaced every three months.

Regards

Colin

User

Posted 19 Aug 2021 at 23:57

You normally have to have hormone therapy for 3-6 months before starting radiotherapy, to allow the hormone therapy time to shut down the prostate cells. 3 months used to be the norm, but some oncologists had upped this to 6 months (and that was before COVID).

I would suggest extra delay is beneficial providing your PSA is still dropping at a reasonable rate, since there's some evidence that getting it low (<1.0 or <0.1 in different papers) before radiotherapy has beneficial outcomes. (Not everyone will be able to get it that low.) Delaying radiotherapy if PSA is no longer dropping is probably not beneficial and might be detrimental, and you might even risk becoming resistant to the hormone therapy, which you don't want to happen before the radiotherapy. So, I would suggest getting your PSA checked at least every 3 months while waiting for radiotherapy, so you can make sure it's going down and not bottoming out.

The delay starting radiotherapy will not result in you being on hormone therapy for longer, except you probably do want 18-24 months on it after radiotherapy as a G9 patient. If you got to 9 months on hormone therapy and still no sign of radiotherapy, then you need to start making a fuss.

User

Posted 20 Aug 2021 at 02:27

Have to be careful here because some aspects such as Gleason and staging could make a difference. However, I was diagnosed at a time when 6 month of HT prior to RT was just being adopted to replace 3 months previously given. However, due to a delay in commencing my RT treatment, I discussed this with my consultant at the Royal Marsden and he authorised 2 further 28 day Zoladex HT to take me to 8 months and about the end of my RT. When asked about this extension, I remember him saying "it will do no harm, no harm at all". In fact due to my peculiar situation, I was not offered HT again until fairly recently but rejected it in favour of more salvage therapy but that's another story.

I think Peter has not fully understood your original reference to 'implant'. When Zoladex is injected, it contains HT in an implant that dissipates the HT over 28 days or 84 days (nominally one or three months) depending which one of the two types has been prescribed. HT is in most cases continued for upto 3 years although depending on how things work out, some men are originally told it would be three years, come off it earlier

As im my case, HT tends to drop the PSA to a low level very quickly and indeed there was a time when consultants wanted you to keep on with this until your PSA dropped to a certain level before you had your RT. However, even prior to the pandemic, it was not considered so important to wait for a drop in PSA that might not be achievable. So, I wouldn't disagree with Andy when he said that if you haven't heard more about the RT in 9 months from now, you could ask when it might be administered.

Barry

User

Posted 20 Aug 2021 at 10:28

Thank you, that was very helpful and somehow reassuring

Colin

User

Posted 20 Aug 2021 at 10:29

Very helpful, thank you !

Colin

User

Posted 20 Aug 2021 at 15:30

Colin,

Barry is correct that the term 'implant' is new to me. Although I've read hundreds of comments on here that's the first time I recall seeing it. I always thought the hormone lasted 3 months and not that it was an implant dissipated over 28 or 84 days. Perhaps different hormones have different methods as well. We live and learn.

It sounds good advice to chivvy them from time to time through as many mediums as you can. If you're uncomfortable they should know. We read that people are not coming forward because they don't want to be a bother, it's understandable but shouldn't be the case.

All the Best
Peter

User

Posted 20 Aug 2021 at 17:02

Colin, the "three years" is the total time that it's common to be on HT for, not the length of time you'll have to wait for RT! It's normal to be on HT for six months prior to the commencement of RT to allow the HT time to do its job of shrinking the cancer. This maximises the effectiveness of the RT. In my own case, for example, I started HT in August 2018 and had RT in Feb/Mar 2019, so thus far at least your treatment timetable has been entirely normal.

Best wishes,

Chris

Edited by member 20 Aug 2021 at 21:11 | Reason: Not specified

User

Posted 20 Aug 2021 at 18:16

Thanks Peter

Ive only been on this forum a couple of days, but learning so much about PC and how it is seen by others, and how it impacts on health and wellbeing .

So thanks for your contribution

Colin

User

Posted 20 Aug 2021 at 18:20

Thank you Chris

If only the medics had told me that ! I was told that I would have to wait 4 - 6 weeks before RT would be offered.

Ive only been on this forum a couple of days, but learning so much about PC and how it is seen by others, and how it impacts on health and wellbeing . So thank you for your contribution

Colin

User

Posted 20 Aug 2021 at 21:51

Reverting to Zoladex, it should be only be given by somebody who has been shown how to administer it, as the very small 'implant' it contains has to be carefully delivered at approximately the correct angle and depth to be fully effectively. (One of the nurses at my GP's surgery had to be shown how to do this by another). The Zoladex is usually placed in one side of the stomach and then the other alternately. Some men bruise for a two or three days or so afterwards. It seemed to me that rather than plunge the needle in at at 90 degrees as we see being the way the Covid vaccine is administered, with Zoladex, at least in my case, the skin was pinched somewhat and the needle entered at a much shallower angle. Other forms of HT may be administered in a different way and or site. The Zoladex I had was preceded by Bicalutamide in tablet form taken for 3 weeks.

All of us on this forum absorb various snippets of information from our consultants, fellow forum members and research of various kinds and as PCa becomes better understood and treatment is refined and evolves, there is ever growing information and things for us to become aware of. So quite understandable that you were not aware that the Zoladex injection carried an implant Peter.

Edited by member 21 Aug 2021 at 14:43 | Reason: spelling

Barry

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