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Back pain following hormone therapy

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User

Posted 14 Sep 2019 at 17:16

In December 2017, my dad started hormone therapy for Prostate cancer that had returned (he previously had radiotherapy). He had a really hard time with side effects from the hormone therapy - hot flushes, fatigue, loss of appetite etc. But thankfully, his PSA reduced to 0.3 which he was very pleased about. He’s 78 and is still having a hard time with some of the side effects, less than they were but still bothering him. His particularly struggled with weakness in his legs and has complained of lower back pain for a while. I went with him to the Dr yesterday where he saw a lovely registrar who examined him, couldn’t find anything clinically worrying and agreed with what we thought - that it was likely due to feeling rubbish as a result of his treatment, a bit of muscle wastage or general old age. However, she’s recommended an x-ray in case the cancer has spread. Is this possible despite his PSA reducing so considerably following treatment? Could it have started spreading around the time his PSA was at its lowest (in recent years)? Before he started treatment, an MRI confirmed that the cancer had not spread out with the prostate. He’s now due to have an x-ray, blood test and will see his GP again in a month. This also coincides with his next appointment with his consultant. Any advice would be welcome, we’re all feeling a bit fraught again. Thanks

User

Posted 15 Sep 2019 at 00:58

Generally speaking, if the PSA is stable then the cancer isn’t active. If it is low but rising, the hormone treatment may have stopped working as well as it should and the cancer may be active. Was dad’s PSA still at 0.3 when you went to the appointment this week?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Sep 2019 at 07:17

Thanks so much for your reply. Dad hasn’t had his PSA tested since October 2018, he’s due to have a blood test on 23rd September and will follow up with GP on the 9th then his consultant on the 10th.

Prior to starting hormone therapy, his PSA steadily rose for around a 5/6 year period following radiotherapy (it was stable to begin with) at around .5 every 6 months. When he started hormone therapy it was around 7 (I think) which I know is still quite low - an MRI confirmed it had returned at this point but was contained within the prostate. We took a lot of comfort from this as knew if it had spread, things were much more serious. The fact he responded so well to hormone therapy was also great news to us, despite the side effects.

I’m just not sure if it’s possible that despite his PSA going down, could it still spread out with the prostate?

I think the Dr he saw on Friday was trying to be through which I appreciate, and I also know GP’s are not experts in specific cancers. It’s just a worry that they think it’s worth an x-ray to check for any spread.

The pain he is experiencing is only when he’s standing for a while and/or walking. It’s not constant and doesn’t wake him. He is starting physio tomorrow to see if that helps.

Thanks again

User

Posted 15 Sep 2019 at 10:23

Thanks for your reply, it’s really helpful to hear from somebody else. I think we were all so relieved when we found out in 2017 that it hadn’t spread and the thought of hormone therapy to get things back under control seemed like a small price to pay.

However, I think we were all (especially dad) taken aback by how rubbish he felt, and still does to an extent. He’s been told it can take a year for the effects to wear off which would take us to dec 2019, I guess the problem then will be if his PSA has risen and he needs to start the HT again. It’s such a vicious cycle, I think he feels so rubbish at times, he doesn’t want to do anything - that coupled with muscle weakness which I think can be a side effect, has made his back sore (I’m no Dr but that’s my thoughts)

Thanks again

User

Posted 16 Sep 2019 at 15:45

I was diagnosed in June last year with PC (PSA 19 Gleason 4+3) and went on HT pills immediately then HT injections for a year. Also had Radiotherapy daily for a month in November as part of a PIVOTALboost trial that I signed up for. The diagnosis was actually a spin-off from being diagnosed with Myasthenia Gravis (MG) at the same time.

The treatment for the PC was parallel with MG treatment but meant I was getting i.a. steroids too.

All of this resulted in feeling absolute rubbish for a year with most of the classic side-effects, but especially tiredness, back ache and ballooning out due to the steroids (with resultant muscle wastage).

I finished the HT injections in June and am gradually feeling better but still get the odd back ache and the tiredness. PSA now down to <0.1. However...I am back in the garden and I am determined that the tiredness is now due to exercise.

I'm not sure if the above helps but I would encourage your father to try to exercise and recover the muscle wastage if he can. It was, for me, a very slow process and I understand that I am one of the lucky ones in that my side-effects are actually disappearing quicker than the average.

As everyone says, no two people are the same but I should hope that with your support and encouragement and your father's determination he should start to feel better soon.

User

Posted 16 Sep 2019 at 18:28

Originally Posted by: Online Community Member

I’m just not sure if it’s possible that despite his PSA going down, could it still spread out with the prostate?

The pain he is experiencing is only when he’s standing for a while and/or walking. It’s not constant and doesn’t wake him. He is starting physio tomorrow to see if that helps.

Thanks again

But if he hasn't had his PSA tested for a year you have no idea whether the PSA is going up, going down or holding steady??? In that case, no-one can say the cancer is or isn't active or spreading - the sooner he has the results of the blood test the better. If he finished HT last December, the cancer could have spread since then.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Sep 2019 at 18:34

Thanks so much for your response, it’s reassuring to know he’s not alone in dealing with some of the side effects.

I hope you continue to feel better - all the best 😊

User

Posted 16 Sep 2019 at 18:36

Thanks so much for your response, it’s reassuring to know he’s not alone in dealing with some of the side effects.

I hope you continue to feel better - all the best 😊

User

Posted 16 Sep 2019 at 18:37

I checked with him yesterday and his PSA was 0.1 in April 2019. It’s being checked every 6 months.

User

Posted 16 Sep 2019 at 20:54

0.1 is very low and very encouraging.

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