The bolt from the blue which is advanced PCa... And beyond

User

Posted 27 Jan 2020 at 13:57

Thanks anyway Saintpaul. It is clearing up whatever was the cause. Maybe I panicked too soon.

We spoke to our nurse over the weekend and its sounding like he will be having radiotherapy starting end March.

We were told that even though it has spread to lymph nodes (including distant ones) it can be beneficial along with the chemo he has already had to keep the PSA low as long as possible.

Any words of wisdom or advice will be welcome.

Edited by member 27 Jan 2020 at 17:47 | Reason: Edit

Mrs MAS

User

Posted 21 Feb 2020 at 18:45

Just an update from us. My husband has had his post chemo restaging scan and we had the appointment for results today. The lymph nodes have shrunk and his psa is 0.57 the lowest its ever been.

They were very happy with him The next step is radiotherapy. Its not yet been decided whether this will be 20 or 37 fractions and also whether to include the pelvic lymph nodes as well as the prostate. The planning session will be around end of March so I may be coming back with more questions!

Edited by member 21 Feb 2020 at 18:46 | Reason: Spelling

Mrs MAS

User

Posted 21 Feb 2020 at 18:59

Great news

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

User

Posted 21 Feb 2020 at 20:06

Great news!
Shelagh xx

Edited by member 21 Feb 2020 at 20:07 | Reason: Not specified

User

Posted 10 Mar 2020 at 07:10

HI all

My husband had his radiotherapy planning session yesterday.

After the good news from the scan recently we were expecting to just have the 20 sessions. They have hIm down for the 37 sessions to prostate and including lymph nodes (even though the cancer in them had shrunk).

Are we right to just feel grateful he is getting the maximum treatment (and good scan results) as this will hopefully lengthen the time prostap works for ?

Edited by member 10 Mar 2020 at 07:12 | Reason: Spelling

Mrs MAS

User

Posted 10 Mar 2020 at 15:42

It sounds like they are just making sure they hit everything including lymph nodes hence 37 sessions rather than 20. They will hit the prostate with a certain dose and the lymph nodes will be hit with a dose of radiation too.
These links might help

https://prostatecanceruk.org/prostate-information/treatments/external-beam-radiotherapy

Ido4

User

Posted 18 Mar 2020 at 10:17

Hi all,

My husband starts his 37 radiotherapy sessions next week. Advice at the moment from the hospital is anyone who has had their planning session will still be treated.

Maybe I am being paranoid or maybe realistic, but just say if part way through the treatment, it has to be stopped due to the corona virus (hospital being short of room/staff etc.) can the rest of the session be postponed. Will that reduce the effectiveness of it or even would the chance to have his radiotherapy will be gone?

We had been told that for advance PCa there is an optimum time to have radiotherapy and that is now- around 3 months after finishing chemo.

Edited by member 18 Mar 2020 at 11:05 | Reason: Not specified

Mrs MAS

User

Posted 18 Mar 2020 at 11:15

Giving pelvic RT to a man with PCa mets is relatively new and not available to all men in all areas of the country so there is little data on the impact of getting the full dose, let alone what the impact might be of getting half of it and then stopping - I don't think anyone will have answers to your question about effectiveness.

On the basis that if you lived elsewhere or were under a different oncologist he might not have been offered this treatment at all you could -

- clarify with the oncologist / RT team whether a break in the treatment means it can't be started up again later

- clarify whether, with advanced PCa, compromised post chemo and on HT, it is wise to be visiting a hospital every day for 7 weeks

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

User

Posted 18 Mar 2020 at 12:33

Hi Mrs MAS

Wishing your husband all the best for his radiotherapy.

Shelagh xx

User

Posted 21 Mar 2020 at 12:41

Thanks for the advice Lyn and for Shelagh for your good wishes.

Double checked and treatment is going ahead next week.

Shelagh, how's Rob doing?

Edited by member 21 Mar 2020 at 12:42 | Reason: Not specified

Mrs MAS

User

Posted 21 Mar 2020 at 14:01

Hopefully the planned RT will not be interrupted but it's best to ask oncologist about the effect of this in the rather new experience. However, other than short breaks for weekends and Bank Holidays, longer breaks are not recommended for the standard RT to Prostate where a sustained course of RT causes maximum damage to the DNA of cancer cells..

Edited by member 21 Mar 2020 at 18:28 | Reason: spelling

Barry

User

Posted 21 Mar 2020 at 16:53

Rob is very well, thanks, Mrs MAS. His PSA is down to 0.2, although his right leg is swollen. He is having a scan in a week's time (unless it is cancelled). Radiotherapy would not have been an option as he had it over 10 years ago. I don't know if it would have been appropriate with the spread in his lymph nodes anyway. I'm so glad that your husband's radiotherapy is going ahead. All the best to you both. Shelagh xx

User

Posted 21 Mar 2020 at 17:25

Glad to hear Rob is well, aside from his leg. Please update me after the scan if it goes ahead. Look after yourself Shelagh. X

Mrs MAS

User

Posted 04 Jun 2020 at 11:37

Hi Mrs MAS

I hope that your husband managed to complete his radiotherapy successfully and that you are both doing well. We are both fine.

Shelagh xx

User

Posted 04 Jun 2020 at 12:41

Hi Shelagh

I was thinking about you only yesterday.

Glad you are both okay, how did Robs scan go and how is his leg?

My husband completed RT on 19 May with no problems, he's had a few side effects but nothing he can't manage and nothing like chemo.

He ll have a PSA test in about 5 weeks so fingers crossed for that.

Best wishes

Edited by member 03 Jul 2020 at 14:24 | Reason: Not specified

Mrs MAS

User

Posted 04 Jun 2020 at 12:50

Hi Melissa

I’m so glad your husband managed well with his RT. Fingers crossed for the results.

Rob has bloods and a phone appointment with his oncologist next week and we’ll get the results of the scan then too.
Take care.

Shelaghxx

User

Posted 04 Jun 2020 at 13:12

Best of luck for Robs results, Sheilagh. I'll be thinking about you both.

Will you let me know how it goes?

Edited by member 03 Jul 2020 at 14:24 | Reason: Not specified

Mrs MAS

User

Posted 04 Jun 2020 at 14:07

I’ll be in touch.

Shelagh xx

User

Posted 03 Jul 2020 at 14:22

My husband finished radiotherapy about 6 weeks ago with manageable side effects and without catching Covid.

Just got his PSA result from last week's blood test and it is 0.07.

We are very pleased.

Thought I would share the good news.

Mrs MAS

User

Posted 03 Jul 2020 at 14:42

Wonderful news x

User

Posted 03 Jul 2020 at 15:04

That’s such great news!

Dave

User

Posted 03 Jul 2020 at 20:36

Great news.

Ido4

User

Posted 03 Jul 2020 at 22:05

Fantastic news. Really pleased for you both.

Angex

User

Posted 03 Jul 2020 at 23:41

Excellent news👍

User

Posted 04 Jul 2020 at 10:15

Fab news. I was an “early adopter” of chemo followed by RT on diagnosis and relatively young at the time (49). Five and a half years on still here , PSA 0.12 for the last 2 years , I run thousands of miles a year , can’t complain so hopefully you and hubby will have many good years ahead just like my family and I have enjoyed.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 04 Jul 2020 at 10:26

Thanks everyone.

Irun, the first time I logged onto Prostate Cancer UK I found you and your story. I know you don't post much but your story gives me much hope.

Edited by member 30 Sep 2020 at 09:26 | Reason: Title change

Mrs MAS

User

Posted 02 Oct 2020 at 15:22

Hi,

So, just over a year after being diagnosed, Mr MAS's PSA reading is undetectable!

Of course I had to delve further and this means the machine can read anything over 0.05 so must be under that.

We are very pleased and wanted to share the good news.

Edited by member 02 Oct 2020 at 17:06 | Reason: Added a word

Mrs MAS

User

Posted 02 Oct 2020 at 15:40

Sooo chuffed for you. What a relief !

User

Posted 02 Oct 2020 at 17:27

Mrs MAS, excellent result, give him my regards 👍

User

Posted 02 Oct 2020 at 17:41

Cheers Jasper, will do.

Mrs MAS

User

Posted 02 Oct 2020 at 22:55

Fantastic news for you both x

User

Posted 02 Oct 2020 at 23:17

MrsMas

Great news, long may it continue.

Thanks Chris

User

Posted 03 Oct 2020 at 08:54

👍

Always good to hear that wonderful word "Undetectable"

User

Posted 03 Oct 2020 at 10:54

Fantastic news.

Ido4

User

Posted 04 Jan 2021 at 19:25

Hi everyone,

Another 3 months gone by and Mr MAS has his PSA test this morning. Very pleased to tell you it is once again undetectable.

He has some bowel urgency issues which seems to have come on in the past 4 weeks (his RT finished 7 months ago) and has been advised to try fibogel and look at diet.

But we are very pleased with today's results.

Edited by member 04 Jan 2021 at 19:27 | Reason: Not specified

Mrs MAS

User

Posted 04 Jan 2021 at 22:28

Great news Mrs MAS. Happy New Year John x

User

Posted 05 Jan 2021 at 10:00

Fantastic news. Happy New Year!

Ido4

User

Posted 05 Jan 2021 at 10:26

Great news to start off the New Year. Just read your thread.

My husband finished adjuvant RT the week before Christmas (RALP in July). He’s to get PSA checked late March. I try not to think about it too much just now but it’s always lurking.

Best wishes.

User

Posted 05 Jan 2021 at 13:55

👍Always good to hear good news, but especially now

Cheers

Bill

User

Posted 05 Jan 2021 at 17:28

Good news indeed!

User

Posted 05 Jan 2021 at 18:29

Thanks all, and happy new year to you all too.

Wishing you well for your husbands next PSA, Lexi26.

Edited by member 05 Jan 2021 at 18:30 | Reason: Not specified

Mrs MAS

User

Posted 05 Jan 2021 at 18:39

Mrs Mas

Great news, long may it continue.

Thanks Chris

User

Posted 15 Apr 2021 at 11:38

Hope you will be as pleased as we are with Mr MAS' latest PSA result which was undetectable again.

He is still awaiting an appointment for polyp removal but the colonoscopy in February showed nothing untoward. His bowel urgency (and accidents) still going on, but are gradually improving and getting further apart, though no real pattern to them which can be upsetting.

He is coming up to a year since he finished RT and they do not seem to be linked to diet at all (or the polyps) so can only be late effects of RT and hope they may tail off some more.

Best wishes to you all.

Edited by member 15 Apr 2021 at 11:39 | Reason: Not specified

Mrs MAS

User

Posted 15 Apr 2021 at 12:07

Good news all around. It took a good year for the bowel impact of RT to fully settle down for me, too, so it's not unusual. It was never more than a minor annoyance, though. When I was going out for the day I'd take an Imodium tablet before leaving home just to be safe. I'm now just over two years after RT finished and things are pretty much back to normal.

Best wishes,

Chris

User

Posted 15 Apr 2021 at 18:02

The PSA result is excellent. I still have unpredictable bowel events, I can be fine for a while but can have issues when least expected. I can get down about it but then I think just get on with it!
I hope they resolve for Mr MAS.

Ido4

User

Posted 15 Apr 2021 at 22:51

Great PSA result 👍🏼

User

Posted 16 Apr 2021 at 08:00

Thanks all and for info Chris and Ido4.

He is a very positive person and tries not to get down about it, its the unpredictability which is the problem.

Thanks for imodium tip Chris.

Mrs MAS

User

Posted 16 Apr 2021 at 10:19

Tremendous result Melissa I'm delighted for you both. Undetectable has become my favourite word.

Give my continued good wishes to Mr MAS.

User

Posted 16 Apr 2021 at 15:16

Thankyou John, I certainly will.

I think next update I'll start a new thread as this is a long one.

Best wishes to you, hope you are making the most of the sun.

Mrs MAS

User

Posted 25 Oct 2021 at 06:46

An update from us is that the recent PSA Mr MAS had was undetectable again.

He returned to have the colon polyps removed last week (found in Feb) and has now been told both have worrying features. They were also in a difficult position on the right side of colon. We feel unable to properley celebrate the pleasing PSA result as we are await the pathology results of the polyps.

It also says that he will be checked for recurrence of polyps in 2 months but any recurrence will not be able to be done via colonoscopy so also worried if he needs an op.

These polyps were found incidentally, he has had some fecal incontinence that started 6 months after finishing RT and the original colonoscopy was to see if there was any visible damage there.

Mrs MAS

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