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An Unexpected Journey

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User

Posted 06 Sep 2022 at 16:36

Well, to be honest, not that unexpected after seeing obvious evidence of blood in my semen back in May, followed by a PSA of 20 from a blood test a few days later.

I have recently received a diagnosis of T3a, Gleason scores ranging from 6-9. My treatment has already started with Bicalutamide tablets and, today, the first Zoladex injection (sounds like I have some fun to look forward to on that front!). The present treatment plan is for radiotherapy, probably in the new year.

Because I was already pretty much resigned to the diagnosis, it didn't hit me too hard when it was confirmed. The hardest part has been deciding how to let people know about it. As a single person living alone, I had the option of just keeping it to myself, but I found I do need to have others with whom I can talk openly about my condition.

I've tried to get a bit ahead of the game by increasing my levels of exercise and losing some weight (in the hope that I can mitigate some of the debilitating effects of the hormone therapy). I'm thinking of getting an e-bike (it's a bit hilly where I live!) to add another option to my exercise regime - walking is good, if the weather is OK, but the exercise bike at home is not much fun (I think it was designed by Torquemada).

Anyway, I plan to remain positive and live the life I want to lead to the best of my ability. This forum will be a new part of that, and I look forward to making some on-line friends and contributing where I can.

User

Posted 06 Sep 2022 at 22:10

Zoladex is every 3 months for me, so next is at the end of November.

I admire your self-discipline re coffee and beer - first is easy for me as I haven't drunk the stuff for 20 years, but beer is another matter! I will be looking at diet more generally though.

Whatever the side effects of Zoladex, I'm determined to keep up the exercise, and walking is something I really enjoy.

I think this site, and the support from fellow travellers, will be a great help. I hope I'll be able to give back by sharing my experiences too.

User

Posted 07 Sep 2022 at 09:17

Having being down the bical/Zoladex path I don't think you should get too worried about the side-effects of the drug regime. I know we are all different and will all have different experiences of the drugs but I can say that I haven't found things that bad.

Yes the sweats are a PITA but for me they have generally being/are manageable. Given, as I am , to a certain corpulence, the weight gains have also been negligible.

Hopefully the HT won't be too bad. Sounds like you have a good plan to keep the weight off

User

Posted 18 Sep 2023 at 01:49

Well the low PSA and nothing showing up on scans all sound good. Most people diagnosed with metastatic disease,the PSA is in the hundreds and the four year life expectancy is credible. For you it may be an aggressive cancer which doesn't produce much PSA, in which case four years still is realistic, but those cancers are rare, if you have normal adenocarcinoma, a moderate PSA of 20, only a small amount of metastasis and have responded well to treatment I suspect you have decade(s) to live.

Is the plan for you to be on HT for the rest of your life? If so, I have heard of people having "hormone holidays". The advantage is it would delay things like osteoporosis, it may even delay how long it is before the cancer becomes castrate resistant. At the moment you haven't even had 18 months of HT which is pretty much the minimum anyone has, who is having RT. If everything is still looking good in a year's time it may be worth investigating the idea of hormone holidays.

Dave

User

Posted 18 Sep 2023 at 08:16

Staying positive on this ordeal(journey🤣🤣🤣🤣) is I think so important and it sounds like you are managing to do that. I’ve been on Prostap for 15 months now and have had many side effects, most of which I have managed to mitigate as below. Don’t know if this will help but might be worth trying?

Anxiety….Sertraline, exercise and being good to myself. Also Maggies has been a saviour for me.
Hot flushes….tried everything but now taking Vitamin E and wow! What a difference😊
ED + Peyronies Disease……..Specialist Private diagnosis, Tadalafil and SomaCorrect on NHS
brain Fog and No, it’s not just old age……I just Laugh about it but try and do things to work my mind
loss of Libido….EXperiment, try sex toys, you can still get pleasure and orgasm
Weight Gain….now on a strict Herbalife diet and exercise and it’s working
Joint Paint…this is the worst ATM and still work in progress, gym, swimming, cycling(e-bike) and walking. You need to keep moving and stretching.

Did you ever get your e-bike? If not, go for it! They are so much fun and you get really good exercise without it being exhausted at the end of it. I find it’s very good for my knee joints as it loosens them up without putting strain on them.

you mentioned in an earlier post talking to others in the same boat. This site is great but getting together with others is even better. Find out if you have any local men’s cancer support groups such as Maggies, it has made a huge difference for me.

All the best,

Derek

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User

Posted 06 Sep 2022 at 20:25

Hi your diagnosis seems about the same as mine. I am assuming you are N0 M0. Are they planning on RT in about 6 months?

I didn't have a problem telling people, like you the diagnosis didn't bother me (much). I have a dry sense of humour, by making jokes about the cancer people realised it was not upsetting me, and they could talk about it openly.

I wouldn't be seen dead in a gym, but walking cycling are all sensible, and if you do enjoy the gym even better.

Dave

User

Posted 06 Sep 2022 at 21:05

A level headed response I found it hard telling my mum , it really helped me personally knowing other guys who had treatment , I started a ‘ reasonable ‘ diet and did a lot of walking I cut out all coffee and beer while of tablets and zoladex , side effects differ to each person , but quite bearable , a strange drug for sure I mean you (I ) got weepee and slight depression but a good walk helped enormously . ONLY use this site and nhs pc site nothing else . Being retired deffo helped not worrying about work etc , also knowing this cancer is so so common , a lot of us in same boat ! One thing that I wish I knew was try and keep penile health while on the tabs and zoladex if you don’t, after treatment you might suffer ED , when is your next zoladex ? Still a lot of good tips on here when you start RT ? But that’s further down the track . Cheers

User

Posted 06 Sep 2022 at 22:00

I've felt a bit frustrated that the exact details of my diagnosis haven't always been clear (e.g. the T3a level was something I discovered somewhat by chance - by asking my GP surgery to print off copies of letters I hadn't seen). I think I'm probably N0 M0, but no-one has actually specified that for me.

I think RT will be early in the new year, so between 3-6 months.

Good luck with your journey - stay positive and keep in touch.

User

Posted 06 Sep 2022 at 22:10

Zoladex is every 3 months for me, so next is at the end of November.

I admire your self-discipline re coffee and beer - first is easy for me as I haven't drunk the stuff for 20 years, but beer is another matter! I will be looking at diet more generally though.

Whatever the side effects of Zoladex, I'm determined to keep up the exercise, and walking is something I really enjoy.

I think this site, and the support from fellow travellers, will be a great help. I hope I'll be able to give back by sharing my experiences too.

User

Posted 07 Sep 2022 at 05:12

"but I found I do need to have others with whom I can talk openly about my condition."

Hi,

This forum is the best places you can talk with lots of lovely people could help you out. Do not keep it to yourself, The more you talk here and elsewhere better is for you and more information you get. More knowledge you have the better you control this unwanted gust.

Good lock.

User

Posted 07 Sep 2022 at 09:17

Yes the sweats are a PITA but for me they have generally being/are manageable. Given, as I am , to a certain corpulence, the weight gains have also been negligible.

Hopefully the HT won't be too bad. Sounds like you have a good plan to keep the weight off

User

Posted 10 Dec 2022 at 15:02

Some way into this journey now, and the latest news is mixed.

On the positive side, my PSA levels have reduced markedly - down from 20 when first tested to just 1.2. Zoladex is clearly having a beneficial effect, so I can put up with the sweats and slight weight gain.

On the negative side, a PET/CT scan showed that there were cancerous cells in some lymph nodes and possibly in a site on one rib (this latter is still unclear - the bright spot showing up on the scan could have a different explanation). This is a worse situation than had been originally advised in the consultation with the urologist (when the cancer was believed to be contained within the prostate).

Having digested the new information, I suspect that the spread outside of the prostate had already happened before treatment started, but it wasn't identifiable through the MRI scan. It does appear that the treatment I have been receiving - Zoladex - is having a positive effect. I am still on a curative treatment path, but that may change if the site on the rib does turn out to be cancer.

In response to the revised diagnosis, I am being prescribed an additional course of anti-hormonal tablets - Enzalutamide(?) - which should start in the next couple of weeks. I have been warned that this is likely to amplify the side effects of Zoladex (any advice or observations from people who have been on a similar treatment path are welcome). The step after that is still expected to be radiotherapy, but that won't happen until late spring or early summer 2023. There will be further scans and PSA tests between now and then.

So, the news is a bit disappointing on balance, but not completely unexpected. I still feel well, and I remain positive about my prospects going forward. I think this new diagnosis will reinvigorate my exercise regime, so the recently purchased electric bike (great fun - what hills?) should see plenty of use.

User

Posted 18 Sep 2023 at 00:57

Just over a year after initial diagnosis, and things have moved on.

In December 2022 I received the unwelcome news of the spread to nearby lymph nodes and a single site on one rib. The consequence of this is that the cancer was classified as advanced, and there was no longer a curative treatment path. From now on, treatment would all be about managing and containing the cancer. The consultant was guarded in his response to the 'how long' question - basically saying that about 50% of people presenting with metastatic cancer would not survive beyond 4 years, but that he had patients who are still thriving well beyond that point. My perspective is that my level of disease is comparatively low, so I very much expect to be in the 50% surviving beyond 4 years.

I've been on Zoladex for a year, and Enzalutamide since the start of 2023. I've also had RT to the main tumour.

My PSA has dropped consistently, and was just 0.02 in the latest test. I've had CT and bone scans, and the lymph nodes are no longer showing up on the CT scan. I'm still awaiting the results of the bone scan.

So the news appears to be pretty good. The hormone therapy isn't much fun - frequent sweats and almost total loss of libido - but I can take that if it means staying around for several years longer.

User

Posted 18 Sep 2023 at 01:49

Dave

User

Posted 18 Sep 2023 at 04:21

Dave - a big thank you!

There's nothing like seeing such a positive perspective to lift the spirits.

I have seen comments and articles regarding "hormone holidays", and it is on my list of questions to ask going forward (especially if the news from the bone scan is good). 18 months of HT would take me up to March 2024 so I'll explore that option then.

My initial diagnosis doesn't sound very different to yours, so reading about your progress is very encouraging.

User

Posted 18 Sep 2023 at 08:16

All the best,

Derek

User

Posted 18 Sep 2023 at 16:42

Thanks for the tips Derek. I'll definitely give Vitamin E a try.

The exercise regime has been on the back burner during the warm weather, but I'll be getting back to walking, cycling and e-biking soon, now that it has cooled down. I've also booked to go ski-ing over Xmas.

Good luck with your journey too.

Edited by member 18 Sep 2023 at 16:42 | Reason: Not specified

User

Posted 18 Sep 2023 at 18:06

Might be better to check with your Clinical Team about the Vitamnin E. I was actually recommended it by my ED Nurse for penile rehab but either that or the Tadalafil(????)has made the difference as I started taking them at the same time. I still get them but nothing like as often or severe.

Im very envious of your skiing. I couldn’t ski at the moment as my joints are not strong enough…but I’m working on that and my target is to get back to Copper Mountain in Colorado 💭💭💭 before I’m too old!

we don’t have the problem of having to tone down the exercise regime during the hot weather as we don’t get much of that up here in the Frozen North of Fife🤣🤣

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