Hi everyone,
My name is Del, diagnosed in February, after asking for a blood test, much to the surprise of the doctor, never had one in 66 years ,no symptoms at all, saw consultant had a biopsy, that has to be the single worst thing ever, hurt like hell, can still feel it now, undignified embarrassing horrible, oh well ,then scans etc, had hormone tablets now on second set of injection, bad day three flushes a day, getting worse now, worst thing losing my manliness, it still works ,more like mr soft, no sensation no orgasam nothing comes out, Horrible, finding it really hard (haha) to cope with that, and to put the cream on it ,I can burst into tears at the drop of a hat, going to have a radiation trial five days over two weeks, and give the lymph nodes a blast as well, sorry for going on, so hate the side affects
Hi Del,
I am slightly behind you in this.
Have second injection a week today, and am "looking forward" to more significant side effects after that.
My Radiotherapy is planned for the end of December. I have a prostate described by the oncologist as "chunky" - which I can't find in any medical dictionary - and it needs to shrink a bit before an extended period of radiotherapy.
Have all the mr soft symptoms, but I am dealing with that fairly well. I had expected it, and sort of rationalised it out of the zone of impertant concerns. My thought is that if that is what I have to worry about, there I can still life and joy.
My daughter, who is disabled, has been encouraging me to see this as a chronic illness, and to do what she has had to do. In the words of the Round Table (not a member) motto "Adopt. Adapt. Improve". She has succeeded well with this approach and I am blowed if I am going to be beaten by someone only slightly more than half my adge.
This, whilst not quite being a marathon, is certainly at the 15,000 meters of the foot race world. I am trying to increase my overall fitness and change my diet gradually to meet the radiation therapy when it comes.
One day this treatment will end, most likely with a level of success that will cure, or at least set it back years. When I come out the other end, my life will change again. It won't ever be the same, but I am beginning to see that as a good thing. I was becoming a grumpy old s*d before all this started.
I wish you very well.
One thing I have done is to write down the full plan of treatment for me. Whenever I get down I re-read it and take heart. It will change, because no plan survives contact with the "eneemy" but my feeling is that it will get better in the long term, rather than worse.
Keep going on this group. There are people who can answer pretty much all the questions you can think of. I'm not yet one of those.
Hello Del (delb)
A warm welcome to the Macmillan Online Prostate Community.
What can I say - you've been through the biopsy, I don't think any of us enjoyed that experience (I had the old fashioned TRUSS biopsy!!). I am also on HT/RT and I think I have had every side effect going!!
The great thing is you are on a treatment pathway so to fight the side effects:
* Keep using the old penis as the more it's used the quicker recovery after HT/RT so even if it's "Mr Soft" you are doing the right thing.
* Try and keep as fit as possible, walking, the gym etc as the fatigue will get to you at some point.
* As for the tears - I can cry for England - just buy more boxes of tissues!!
* For hot flushes, I cured mine by taking Sage Tablets (Menoforce from Holland & Barrett) they cured mine for good after about 10 days, (as with any supplements check with your team it's OK to take them).
To enable us to help you can you stick a bit about your journey to date and initial diagnosis on your profile. Initial PSA, Gleason Score and TNM staging. To do this on your home page click on the chair - top right, then "profile" then "edit". Once you have written something don't forget to click on "save". (you can read my profile by clicking on my avatar)
If you have any questions, however trivial someone will answer them.
Best wishes - Brian.
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Hi Del,
I am so sorry to find you here! Saying that, the only good think about this PC bastard is this forum. My husband diagnosed back in November with the full breakfast. Nodes bones etc. The side effects as you said are not nice at all. The fatigue, hot flushes and loosing as you put it his manliness. And he was at 75 going strong at that area before the treatments.
But, we made a decision to look at the half full. And we do have almost normal life. Yes, he wants to live and so he enjoy life with this new normal.
This form here is amazing. So many men and partners that share their experiences and knowledge without judgement. You can ask any question you want on any topic and there will be someone here to support or to know what next.
Lots of love
Dafna
Hi delb , welcome to the Club. I am with you on the biopsy not being pleasant and to date is up there with the toughest bits of the treatment. Just remember that when you stop the HT you will hopefully lose all the side effects and the little man will stand to attention again! Keep us informed of your progress, we like happy endings on here. Best wishes, David
Hi delb.
Good afternoon it's great to meet you today but I am very sorry to have you here under these circumstances.
Yes I have been on Hormone Therapy (Prostrap Injections and Apalutamide Tablets) since last June 2023
I am also experiencing the same side effects: Hot Flushes and Fatigue.
Sorry to hear that you didn't like the Biopsy but it was a small price to pay upon diagnosis for me. At the end of the day as everything is a worlwind from start to finish.
I do hope that your radiation trial goes ok please please keep us updated if you don't mind???
Prostate Worrier.
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