RT getting closer now ...

Hi Able, testosterone production is not confined to the testicles, the adrenal glands and certain cells can produce it too, up to about 5% of your usual amount. the adrenal glands also produce DHEA which can also be turned into testosterone by your body and if it is overactive maybe more, and the test/treatment for this is done at endocrinology. Maybe no news is good news regarding your phone appointment and your rise was just a flare, I too had blood in urine after HT, though mine was aggressive and bleeding i not uncommon, best wishes with RT

Eddie

Hello Able 

Great to hear from you again, and by the sound of it you are doing very well.

I don't think I would worry about the testosterone too much as your PSA is going down.  I am 30 months into HT and have had 1 testosterone test and it was so low I am not even a woman!! I did ask why they are not routine and the official answer was as long as your PSA is going down, there's no need (and then she said in reality it's an expensive test!)

There are a few side effects connected to radiotherapy and here's a link to Prostate Cancer UK's great publication:

https://shop.prostatecanceruk.org/our-publications/all-publications/external-beam-radiotherapy

When you are doing your "sunbed" fractions if you notice any changes in your bodily functions - tell the radiologists they are great at sorting any issues.

I wish you well on the sunbed - please keep us posted as to how it goes.

Best wishes - Brian.

Hi Eddy and thanks for your reply and info.

So are we saying that any reduction of testosterone because of the HT would only impact that that was made by the testes? I ask because if it did (and was working), I'm not sure if the other sources would be likely to make up  a measure of 16, after being 8 when it was supposed to be nil?

Eg, if the HT countered all the testes created testosterone and the normal level was 8, wouldn't I only then see a value of .4?

Just trying to make sense of it etc.

May I ask how may weeks after your RT the bleeding started and finished (roughly), so I can give my friend some sort of guide please?

I have previously worked on the 'no news is (likely to be) good news' edict but with the NHS in it's current situation, I feel I also need to 'keep on top' of some stuff, just in case?

Like, whilst waiting for my planning I asked reception if they were running behind because I was aware I was supposed to be drinking water before I had it and still hadn't started. That didn't seem to jog any other action so another lesson to make sure I ask such questions in future, rather than just assuming they have it all under control.

Thanks for your thoughts as well. ;-)

I'm assuming Ill still be able to drive (safely?), even towards the end of my RT? People mention tiredness and depending on appointment times and traffic I might also go by train (with a 10 min walk each end).

Millibob said:

Great to hear from you again, and by the sound of it you are doing very well.

Well, if I hadn't been told I'd got PC I wouldn't know to this day, other than the night time trips to the loo etc? I've not even had that many reactions to the HT (maybe the odd and short hot flush). The only real side effect being my libido being on the floor and I think that impacts the Mrs more than me. (Oh, and the trip to breast surgery dept for a dynamic ultrasound because of a sensitivity and lump that appeared in my boob).

Thanks for the link to the publication. I will try to read but best I'm likely to skim it because read it or not, 'what will be will be' and often when I have read such things, it's not how it works out in the real world.

I guess all I need to know is how much might I be impacted during the treatment (how well I'm likely to function through it) and how long might I typically suffer any impacting side effects.

Anything else is out of my hands. ;-)

HI  Able, any androgen blocker, prostap is a very good one, will halt testosterone production everywhere but may not always be as effective on the adrenal glands as it is on the testes, though any production wouldn't, as you say, give you a measure of 16. but there are variables, EG addisons disease or hyperactive adrenal glands to consider, this my answer to the Endocrinology question, from my limited knowledge i would lean to you having a flare and as your appointment has not come through maybe I'm not the only one. Able as I had a TURP Feb 2023, bleeding started, 73gy of aggressive RT April 2023  with spread to bowels, bladder and rectum, I am still bleeding, still most days anally, but none in urine for 5 weeks and it was never a problem or concern as it was expected for ME. It's good your keeping on top of things, asking questions and telling them any concerns you have is so important, I was in healthcare 15 years and was in cancer care for 5 so know a little about how things work but always ask questions, the therapeutic radiographers at RT are so nice, never heard anyone say a bad word about them. if you need help or advice just ask, they can even get a Dr to see you. I drove to my RT, about a hour away but parking could take just as long, luckily there was a patient transport charity there, so switched to them. I felt fine all through RT, it wasn't until about a month after side effects became a problem and driving became an issue at times.

Eddie

Hi Eddie,

Thanks very much for your thoughts and I hope you make a complete mend asap.

It's good to get a real-world feel of the impact of the treatment and aftermath because as a carer I need to try to factor that in.  e.g. The Mrs hopes to spend some time with her sister to both see her and give me some slack and we aren't sure as yet when might be the best time for her to take it.

She is still mostly self-managed (dementia) so doesn't require much from me effort wise but I do have to consider her re transport other than driving, especially long flights of stars and so not having that responsibility during my treatment may be a good thing. However, if I'm likely to be more impacted after, then maybe that might be a better time for her to be away?

Hi Able, I have done a little caring, so understand how much time and effort it takes as well as the emotional side, a calling if you have never done it, you can never understand  how consuming it can be. regarding side effects, we are all different, some guys sail through unscathed others seem to get them all, but most are manageable and treatable, Your main concern will be fatigue, which is one of the commonest, most will get it to some degree but it is the one you can prepare for and lessen Its impact by getting as fit as you can before it starts, as for when your wife should visit her sister, I would be guessing, best wishes. 

Eddie

Hi Eddie,

When we got together (33 years ago) it was forever and that hasn't changed, in sickness and in health. ;-)

We try to walk to places if we can, taking her wheelchair that she uses as a walking aid, till she gets tired, then she can get in and I can get some exercise. We often do about 5-6 miles with most of that with me pushing her in the chair.

I replaced the solid tyres with puncture resistant pneumatic ones so it's a bit more comfortable and easier rolling on the trails and tow-paths.

When we went to care for mum for the day (she had a stroke before Xmas and to give my sister a break) she told me to sit down for a bit and have a rest. ;-)

Hi  Able 33 years together is wonderful, and forever no matter what is something i totally agree with, though my partner and I have only been together 17 years, we are getting married this October. All the exercise you have been getting will help you through treatment and hopefully shorten your time with fatigue, though there is always a chance you may not get it or just a mild hit, good idea puncture proof tyres and being able to do 6 miles is amazing, best wishes to you both, take care.

Eddie

Good Morning Able

In simple terms, the RT made me tired and towards the end fatigue was setting in. Mid fractions for a couple of days there was also a change in my bowel movements but it soon cleared up.

The RT didn't stop me from driving or working (I have a desk job) and as the hospital is only a mile away I walked or went by bus (although for RT patients they had free parking).

Whilst on RT you don't want "wind" so leave the beans, pulses, green leaf veg, fizzy pop, booze and caffeine alone and you will be fine.

The Radiologists will look after you and answer any questions.

Best wishes - Brian.