Dad just diagnosed. Need advice

User

Posted 08 Sep 2020 at 17:54

Yes but he has been diagnosed so it doesn't matter now - it would get very complicated if they continued to double his reading every time for the rest of his life. What matters now is the change or trend from test to test.

Plus the 50% is an approximation, not an exact science. The actual PSA reading is an exact science.

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

User

Posted 08 Sep 2020 at 22:03

OK i see! I thought the higher the PSA the more exgressive treatment he would require.. that is why i assumed he would be on hormone therapy for 2 years or so because of a PSA of 11.

Makes sense now. Thank you so much Lyn.

User

Posted 08 Sep 2020 at 23:32

Originally Posted by: Online Community Member

OK i see! I thought the higher the PSA the more exgressive treatment he would require.. that is why i assumed he would be on hormone therapy for 2 years or so because of a PSA of 11.

Makes sense now. Thank you so much Lyn.

If that was the case, he wouldn't be having any treatment at all - the highest PSA we have seen on here at diagnosis was 13,000

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

User

Posted 08 Sep 2020 at 23:41

Totally makes sense now.

Thank you so much. Hopefully the planning session appointment will come through soon. Shall keep posting and updating on here.

User

Posted 28 Sep 2020 at 20:51

Hello all,

Hope people are keeping well.

Today was my dad's planning session at Mount Vernon. He has been told that his radiotherapy will be for the prostate only. He needs an empty bladder and bowel. They didn't tell us this before we went. So they couldn't do the CT scan as bowel was not empty. They gave him something to help him go, which did help but they still couldn't do the CT scan as there was too much wind.

He generally suffers from a lot of wind because he eats a lot of raw veg and a lot of fruit. They have asked him to cut it all down.

Rebooked for this Thursday. He will cut out the above food, so hopefully the scan can happen.

This is going to be tough for him as he loves his diet. He said he no longer wants the Radiotherapy and is giving up as he doesn't want to wait around in the hospital until his bladder is empty. The staff were fab and told him it is normal and just try to time it with food so he is empty before treatment.

Is there any advice on this at all? He has done so well up until now. Really need him to be positive for the RT.

The Macmillan nurse also recommended that he gets his PSA done before RT. Results today.. 0.18. is that good? He has only been on HT for 2 months so far.

I'm feeling a bit disheartened today.

User

Posted 28 Sep 2020 at 23:49

It will be easier to ensure an empty bladder - most men have to keep their bladder full for the RT. An empty bowel & reduction of gas is more challenging and as suggested, cutting out fruit & veg, anything fizzy, alcohol, caffeine will all help with the gas. If he isn't emptying his bowel well, they may suggest mini-enemas.

There isn't a good or a bad PSA once he has started HT - it is just what it is. It is certainly lower than at the start which shows the HT is working. You would expect it to stabilise or continue to fall at the next test.

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

User

Posted 29 Sep 2020 at 12:20

Thank you Lyn.

He generally suffers from gas and he feels it has got worse since starting HT. He has stopped fruit/veg from yesterday. He drinks only de-caf drinks. So fingers crossed.

If the planning scan is not successful on Thursday then they said they would need to speak to the Onco. I am so worried that RT could be delayed or not happen at all?? Am I just over thinking?

User

Posted 29 Sep 2020 at 13:45

I was done at Mount Vernon.

Normal protocol is to use the toilet for #1 and #2 when you arrive, and if you're being treated with an empty bladder, you'll be asked to have another pee (and could do another #2 as well if you wish) just before going in for treatment. It might be slightly different now that patients have to wait in their cars.

It took 6-9 months for my bowels to recover after RT, but they do now work significantly better than they did beforehand (albeit with some minor rectal bleeding which has no impact whatsoever on QoL).

If he's interested, I run the support group at Mount Vernon. Due to COVID, there is no meeting face-to-face at the moment though. I have merged it into The FOPS (Chorleywood) Zoom sessions for now.

Edited by member 29 Sep 2020 at 13:50 | Reason: Not specified

User

Posted 29 Sep 2020 at 14:45

No point you getting stressed about something that is out of your control. If the RT was delayed, it wouldn't make a huge difference as the HT is controlling the cancer and some research suggests that the longer he has hormones before the RT the better the outcome. If for some weird reason (highly unlikely) they decided that he was so gassy that they would never be able to do RT (and I have never heard of that happening) the HT could potentially still control his cancer for many, many years.

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

User

Posted 29 Sep 2020 at 22:02

Thank you so much Lyn and Andy.

I don't know what i would have done without this group. You guys have been such a great support. I feel calmer knowing it is OK if RT does end up getting delayed. Fingers crossed it does happen at some stage though. So happy to know that worse worse case HT can control the cancer.

Dad said he is less gassy today. The change in diet hopefully will help.

I did ask him last time about joining in the support group that you run Andy, however, he doesn't seem very keen. He is so busy with redecorating the house that his mind is just on that project at the moment! Probably good as it keeps him distracted.

I will definitely ask him again though. He may change his mind once he starts treatment.

I will keep you posted after the appointment on Thursday.

Thanks again.

User

Posted 01 Oct 2020 at 17:21

Good news - planning CT scan was successful today! Dad stopped all fruit/veg since Monday. He had no wind today. Was in and out the appointment in 10mins. They have asked him to carry on with this diet now until the end of radiotherapy, probably even longer, depending on side effects.

RT due to start on 15th October. 20 fractions.

Shall keep you all posted.

Sage/evening primrose has stopped all hot flushes. I think the cooler weather also helps.

Thanks again for the support.

User

Posted 19 Oct 2020 at 22:59

Hello!

Hope everyone is keeping well.

Just a quick update. Dad started RT last Thursday. Today was his 3rd session. So far he has been OK.. early days but fingers crossed he will get through it with little side effects.

He has stopped all fruit/veg so wind is no longer an issue. He is managing to empty is bowel and bladder before treatment so he is literally in and out in 10mins. Hopefully this will continue for the duration.

He still walks 40mins twice a day and has been doing the resistance exercises since his first HT injection! He has lost a lot of weight from all the exercises!

Shall keep posting on here through his RT treatment.

Keep safe. Take care.

User

Posted 19 Oct 2020 at 23:38

Hi SR12,

Nice to hear from you. How many RT sessions is your dad having? (EDIT: just seen your previous post 20 fractions) It's nice to know active treatment has started. I only had 15 sessions as most of my radiation was delivered via brachy, but it is good to start counting those sessions down, before long he'll be halfway through. Once started those radiation doses have to hit that cancer every day (except weekends, when the cancer cells, I presume, go away and play golf; ready to be back on Monday to start all over again) so hopefully no covid interruptions to his treatment.

Best wishes

Edited by member 19 Oct 2020 at 23:40 | Reason: Not specified

Dave

User

Posted 20 Oct 2020 at 11:08

Hi Dave,

Nice to hear from you. Hope you are getting on well post treatment.

Yes 20 sessions for dad. 3 done, 17 to go!

I did ask what would happen if we go into any lockdowns again. They said radiotherapy would continue.. who knows though. I am hoping he can get the RT out of the way. After that he needs one more 4 weekly Zoladex implant. Then he will go onto monitoring.

He is having prostate only RT hence empty bowel and bladder. So far he has been OK with this.

Take care. I shall keep posting.

User

Posted 20 Oct 2020 at 11:35

Well done, Dad - I hope it works out fine, what part of the country are you in?
I had my RT done in Cambridge last year.

User

Posted 20 Oct 2020 at 17:12

Hi. Regarding lockdowns just to say I had all 20 of my RT sessions during the big lockdown earlier this year. The hospital would be very unwilling to interrupt your dad's treatment once it has started so I think you can rest assured it will proceed as normal even if another lockdown is imposed.

Once you get into the routine you'll be amazed how quickly they go.

best wishes

Stephen

User

Posted 20 Oct 2020 at 17:53

Originally Posted by: Online Community Member

Once you get into the routine you'll be amazed how quickly they go.

best wishes

Stephen

I agree with that. Though I never really got used to holding the amount of fluid...
I told the Nurses "Don't stand in the way, following the fraction!" They were very good. 😄

User

Posted 20 Oct 2020 at 22:16

Thank you so much for that! That is very reassuring to know that his treatment can carry on, even if we go into lockdown.

We are in Harrow. Dad is being treated at Mount Vernon hospital. So far they have been excellent. He calls them once he is in the car park. They call back a few minutes later, tell him to go straight to the loo then in for treatment. Literally takes 10mins in total.

4th session done today! Dad is having treatment on empty bladder and bowel so he doesn't have to worry about drinking all that water. His main concern is ensuing bowel is empty before treatment and that he has no wind/gas (so far so good!).

16 to go now. We are doing a countdown to keep him motivated!

Thanks for all the support. We would be lost without this group.

User

Posted 11 Nov 2020 at 22:47

So today marks the last day of dads radiotherapy! 20 sessions done and dusted. I have to say time did go very quick. One of us went with him daily. The wait in the car wasn't too long. Luckily he controlled his diet really well so he didn't have any wind or any need to take meds which would make him empty his bowel. Once he was called in for treatment, he was in and out in 20mins maximum.

They have been pleased with how smoothly it all went. He will receive a follow up call in about 3 weeks time from the radiologist.

He has a telephone consultation with the Onco in February. He needs to have his PSA test done 2 weeks before so the Onco can read this and let us know how well the treatment has worked. I do remember a few people mentioned on here that the first PSA test maybe higher to due radiotherapy causing the PSA to jump up. Is that correct?

He has the last (we hope!) 4 weekly Zoladex implant mid December. After that his initial treatment will end and he will be monitored from then on.

Side effects wise, he has done really well up until now. We are aware that side effects could start at a later date. The only side effects he has is getting up nearly every hour at night to wee. He has had increased bowel movements too. Some days he is more tired than others. However, he has kept up with all the walking and the resistance exercises. He has also lost a bit of weight which the radiologist thinks is down to the diet and exercise.

The hot flushes are still there but he only gets a few in the mornings and they literally last a few seconds. He is still on sage and evening primrose x 2 daily.

So far the treatment really was not as bad as we thought and we hope he doesn't get any major side effects moving forward. We also hope the cancer is in remission.. time will tell i guess.

We would be absolutely lost without this group. I learnt sooo much and got so many tips which i passed on to dad.

I will post again with his PSA results.. what happens after all this now? Will it just be blood tests on going? Any scans?

Any post treatment advice would be fab.

Hope everyone is keeping well. Thanks again for all the support. Massively appreciated.

User

Posted 11 Nov 2020 at 23:51

Originally Posted by: Online Community Member

I do remember a few people mentioned on here that the first PSA test maybe higher to due radiotherapy causing the PSA to jump up. Is that correct?

Yes, that can happen sometimes which is probably why the onco wants to wait until Feb. The lowest reading (the nadir) is usually about 18 months after the RT finished.

If December is to be his last Zoladex (unusual - they usually go for 18 or 36 months of HT with radical RT) then he will just go to regular PSA monitoring, which might be every 3 months to begin with but then will extend to 6 monthly and, if his PSA stays low for 5 years, to annual testing for the rest of his life. They do not usually do any more scans unless the cancer recurs in the future.

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

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