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Hormone & Radiotherapy treatment

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User
Posted 23 Dec 2020 at 20:55

Hi

My father was diagnosed with PC this afternoon. To give some background, there is a strong family history of PC  so my father took the brave step and had a PSA test in Oct which came up just higher than the threshold. He subsequently went for an MRI end of Nov which pick up a shadow on the prostate this lead to a biopsy mid Dec. Urologist called today to confirm it is PC with Gleason score 4+5.

Urologist has told my father to start on hormone therapy (tablets & injection) tomorrow followed by radiotherapy (not sure when).

A McMillan nurse is going to call my father tomorrow to go through everything in more detail.

I guess I am reaching out to see if anyone has had a similar experience? If there is any advice on questions we can ask the nurse tomorrow?

We are all in a state of shock but glad it's been picked up now. Staying hopeful for the long term prospects.  

Thank you

 

User
Posted 23 Dec 2020 at 23:57
Sounds like you have most of the information you need; the Gleason score is quite high but the hormones will starve it quickly.

You don't say how old your dad is but unless he is in his 40s or early 50s the family link is probably not significant - 60% of men in their 60s have some cancer in their prostate.

The hormones will start to starve the cancer very quickly. The radiotherapy is usually 3 to 6 months later.

If not already booked, ask when his bone scan is likely to be.

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

User
Posted 26 Dec 2020 at 23:08
Pelvic floor exercises for RT??? Nobody ever suggested them to me, and (to my mind) they’re unnecessary for RT.

HT has far more side-effects than RT, but they vary dramatically from person to person. Loss of libido is almost universal. Other common ones are hot flushes, mood swings, and fatigue. I felt as if my head was full of cotton wool my first couple of months on HT, but that went away again.

RT side effects are cumulative, and there’ll probably be no significant ones for the first few weeks of treatment. After that, the radiation may irritate the bladder, resulting in the need to pee frequently. I bought a plastic urine bottle (Amazon) so I didn’t have to get up a dozen times a night. Helped a lot. Radiation makes the prostate swell up, which can cause difficulty peeing. If this happens, ask to be prescribed Tamsulosin. It works wonders. He’ll probably have increased bowel frequency and urgency, and pass clear or bloody mucus. This is entirely harmless, although slightly alarming at first.

RT side effects peak several weeks after treatment ends. 6 weeks after I finished RT my bladder issues had returned to normal (although I still take Tamsulosin and probably always will). Bowel issues take longer to calm down - the best part of a year in my case. I’m now 2 years post-RT and have been off HT for 10 months. No “quality of life” side effects. I still have no libido, but that doesn’t matter to me. Occasionally I still pass mucus, but again now that’s just something you accept. Life is good.

Best of luck,

Chris

User
Posted 27 Dec 2020 at 17:14

Originally Posted by: Online Community Member
This helps me to help manage my Dad. He isn't talking too much about his diagnosis. I think it's all sinking in for him. But building up my knowledge will help him prepare for his treatment as much as we can.

It may be good to get him to talk with a local prostate cancer support group, where he can talk in private with some men who've been through it. I know you're helping him out, but he probably doesn't feel comfortable talking to his daughter about incontinence, sexual function, and other things he's likely worried about. Many men are not even comfortable talking with their wives about some of these things, but can find it much easier to talk with another man who's been through it.

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User
Posted 23 Dec 2020 at 23:57
Sounds like you have most of the information you need; the Gleason score is quite high but the hormones will starve it quickly.

You don't say how old your dad is but unless he is in his 40s or early 50s the family link is probably not significant - 60% of men in their 60s have some cancer in their prostate.

The hormones will start to starve the cancer very quickly. The radiotherapy is usually 3 to 6 months later.

If not already booked, ask when his bone scan is likely to be.

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

User
Posted 24 Dec 2020 at 18:31

Thank you so much, that's really helpful.

He is 72. 

We spoke to the MacMillan nurse today who went through his treatment plan and gave us a bit more info in terms of what was found in the MRI and Biopsy:

- cancer located edge of prostate capsule and in the seminal vesicle, graded T3B 

- doesn't seem to have effected lymph nodes or bones, however a bone scan to will be arranged to confirm.

- Bicalutamide (50g) started today. One tablet each day for 21 days. 

- injections to start from next Thursday/Friday. This will be every month or every 3/12 until radiotherapy treatment begins.

- radiotherapy to start in 8 weeks time. This will be a course of daily sessions for 4-6 weeks. 

- from there, the oncologist will decide on further hormonal treatment and how long for. 

We are all in a state of shock however, speaking to the nurse today reassured us that this is treatable. 

Any more information or advice you have would be really helpful.

 

Thank you again for taking the time to reply! 

User
Posted 24 Dec 2020 at 19:07

Probably the most useful advice at this point would be to find out how to do pelvic floor exercises, and start doing them. This can make life easier during the second half of the radiotherapy and the period just afterwards.

8 weeks is quite a short time to have hormone therapy before the radiotherapy, but maybe this relates to when you'll have the initial planning scan, which is usually some weeks before the radiotherapy treatment starts.

Wishing you all the best.

User
Posted 25 Dec 2020 at 14:17

Thank you Andy

Would you be able to suggest any or point me in the right direction for pelvic floor exercises?

Considering the 4 to 6 weeks of external radiotherapy what possible side effects could we expect? I know this will be different for each individual.

In terms of quality of life in the long term,post treatment (the plan as it currently stands) would it have a detrimental impact?

I understand there is no right answer, just want to tap into knowledge from the online community.

Many thanks

User
Posted 26 Dec 2020 at 23:08
Pelvic floor exercises for RT??? Nobody ever suggested them to me, and (to my mind) they’re unnecessary for RT.

HT has far more side-effects than RT, but they vary dramatically from person to person. Loss of libido is almost universal. Other common ones are hot flushes, mood swings, and fatigue. I felt as if my head was full of cotton wool my first couple of months on HT, but that went away again.

RT side effects are cumulative, and there’ll probably be no significant ones for the first few weeks of treatment. After that, the radiation may irritate the bladder, resulting in the need to pee frequently. I bought a plastic urine bottle (Amazon) so I didn’t have to get up a dozen times a night. Helped a lot. Radiation makes the prostate swell up, which can cause difficulty peeing. If this happens, ask to be prescribed Tamsulosin. It works wonders. He’ll probably have increased bowel frequency and urgency, and pass clear or bloody mucus. This is entirely harmless, although slightly alarming at first.

RT side effects peak several weeks after treatment ends. 6 weeks after I finished RT my bladder issues had returned to normal (although I still take Tamsulosin and probably always will). Bowel issues take longer to calm down - the best part of a year in my case. I’m now 2 years post-RT and have been off HT for 10 months. No “quality of life” side effects. I still have no libido, but that doesn’t matter to me. Occasionally I still pass mucus, but again now that’s just something you accept. Life is good.

Best of luck,

Chris

User
Posted 26 Dec 2020 at 23:25
I guess PFEs are a good idea for any man who isn't sure he can hold a full bladder for 30 minutes without dribbling. Otherwise, I would agree that PFEs are not generally seen as important for a man preparing for radical RT. However, having a strong pelvic floor is good for all adults, male or female, for a whole host of reasons.

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

User
Posted 27 Dec 2020 at 06:44

Both urinary sphincters get hit and temporarily weakened by the RT. Holding a bladder full during the treatment gets progressively more difficult. Then, if you get a treatment delay just when you're bursting to go to the loo - if you can pop in there are pee out just 100ml without fully emptying, that can prevent you having to go around the whole emptying out and refilling cycle again. I could do this, which the radiographers were very surprised about towards the end of RT, and that was down to doing PFE.

We were all told to do them when we had the pre-RT teach-in session (which they apparently no longer run due to COVID). It can make a significant difference to your continence from about halfway through the treatment, and for a few weeks afterwards.

User
Posted 27 Dec 2020 at 08:46
This must be advice which varies regionally, Andy. I had my treatment at Clatterbridge on the Wirral, and they certainly made no mention of it. I didn't personally experience any continence issues during RT.

Best wishes,

Chris

User
Posted 27 Dec 2020 at 13:04

Thank you Chris. I will look into getting the bottle you suggested from Amazon. Lots of useful information here. This helps me to help manage my Dad. He isn't talking too much about his diagnosis. I think it's all sinking in for him. But building up my knowledge will help him prepare for his treatment as much as we can. 

User
Posted 27 Dec 2020 at 13:05

Agree. PFE are always recommended for women post birth. up until now i didn't know how important these exercises are for men too. 

User
Posted 27 Dec 2020 at 13:17

I had a bowel tumour removed with ileostomy bag and reversal. PFE were essential and made a massive difference. On a side note, which I’m not sure affects PC, but the most important thing I learned regarding bowel movements is that you need to sit for 15 to 20 minutes, relax and go on your tiptoes. Prior to that I was sit, poop and run guy! Sounds daft but believe me it works! Really clears you out!

Edited by member 27 Dec 2020 at 13:33  | Reason: Not specified

User
Posted 27 Dec 2020 at 17:14

Originally Posted by: Online Community Member
This helps me to help manage my Dad. He isn't talking too much about his diagnosis. I think it's all sinking in for him. But building up my knowledge will help him prepare for his treatment as much as we can.

It may be good to get him to talk with a local prostate cancer support group, where he can talk in private with some men who've been through it. I know you're helping him out, but he probably doesn't feel comfortable talking to his daughter about incontinence, sexual function, and other things he's likely worried about. Many men are not even comfortable talking with their wives about some of these things, but can find it much easier to talk with another man who's been through it.

User
Posted 29 Dec 2020 at 12:28

Hi Andy

Thank you for your email. I have made a note of the contact details you have provided. I am going to send this on to my Dad. 

At the moment he may not feel comfortable reaching out but i know over time this may change.

 

Many thanks once again

 

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
This helps me to help manage my Dad. He isn't talking too much about his diagnosis. I think it's all sinking in for him. But building up my knowledge will help him prepare for his treatment as much as we can.

It may be good to get him to talk with a local prostate cancer support group, where he can talk in private with some men who've been through it. I know you're helping him out, but he probably doesn't feel comfortable talking to his daughter about incontinence, sexual function, and other things he's likely worried about. Many men are not even comfortable talking with their wives about some of these things, but can find it much easier to talk with another man who's been through it.

 
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