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

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User
Posted 07 Oct 2019 at 07:14

I have mainly been reading posts since I joined this forum recently but now I feel ready to say hello.

My husband was recently diagnosed with advanced prostate cancer. It has spread to lymph nodes in pelvis and abdomen, PSA was rising quickly and Gleason score is 8. I have put full info in the bio.

We are totally in shock still even after a couple of months. He is on Prostrap injections and started chemo very quickly after the oncology appointment and has recently had his third session. His PSA has come down from 287 to 37, then to 7 and I know this is good but I remain scared for us and for the future. 

I just wanted to say hello to people who know exactly how I feel and try to find a strategy of enjoying the good times which are now and not jumping into upsetting thoughts of the future.

Mrs MAS

Edited by member 26 Oct 2019 at 16:51  | Reason: Thread now includes radiotherapy questions

Mrs MAS

User
Posted 07 Oct 2019 at 07:14

I have mainly been reading posts since I joined this forum recently but now I feel ready to say hello.

My husband was recently diagnosed with advanced prostate cancer. It has spread to lymph nodes in pelvis and abdomen, PSA was rising quickly and Gleason score is 8. I have put full info in the bio.

We are totally in shock still even after a couple of months. He is on Prostrap injections and started chemo very quickly after the oncology appointment and has recently had his third session. His PSA has come down from 287 to 37, then to 7 and I know this is good but I remain scared for us and for the future. 

I just wanted to say hello to people who know exactly how I feel and try to find a strategy of enjoying the good times which are now and not jumping into upsetting thoughts of the future.

Mrs MAS

Edited by member 26 Oct 2019 at 16:51  | Reason: Thread now includes radiotherapy questions

Mrs MAS

User
Posted 07 Oct 2019 at 13:50
Hi,

It is inevitable that you are going to worry about the future but it’s impossible to know what will happen. Everyone reacts differently to the disease and the treatment. It’s great that your husband is tolerating the chemotherapy well and his PSA is coming right down. As he is on the third cycle it is likely it will come down further.

Whenever I get a bit anxious and looking for answers my oncologist always tells me that he doesn’t have a crystal ball and guessing doesn’t help anybody. I was diagnosed with metastatic PCa just over three years ago and have just about got the hang of appreciating life as it is now. It’s been a bit of a struggle at times but physically you would never have known there was anything wrong with me either, not at diagnosis nor since. My bio is up to date if you want to take a look.

All the best and make sure you look after one another.

Dave

User
Posted 08 Oct 2019 at 18:45

Hi Mrs Mas

Rob, my husband was diagnosed about 6 months ago - PSA 18, Gleason 9 and lymph involvement in pelvis, behind stomach and near one shoulder (9 in all). Just finished 5th docetaxel and on 3 monthly prostap.

I am only mentioning the following because what I learnt then is helping me now.  Rob had stage 3 bowel cancer 10 years ago. He has done very well, but we weren't to know that then.

What kept me going then was focussing on the present, and the knowledge that his consultants had a plan. I hung on to that, although I also learnt to question them if things weren't clear or I wasn't happy (Rob is not like that). When things got too much for me, I phoned Macmillan and spoke to a wonderful nurse. I have now done the same with the excellent Prostate Cancer UK nurses. I also used to tell myself  'it's as good as it gets' and at the end of the day would focus on even the smallest good thing that had happened that day. I used to be a 'glass half empty' person but I have gradually become 'glass half full'. It didn't happen overnight, but it has made life easier for me and I have learnt to live in the present and stop worrying about the future.

It's not easy to concentrate on anything when you are in shock - it is a frightening time.  Cheshire Chris hit the nail on the head when he referred to  the 'new normal' and I hope that gradually you will be able to move towards this. When you do, seize life by the horns and make the most of it.  I have healthy relatives who are not half as happy as we are!

Also, I have just found our cancer hospital's new Maggies centre. It is wonderful, so if there is one near you, it is worth visiting. I found support, laughter and a great cup of tea.

My best wishes to you both.

Shelagh xx

 

 

 

User
Posted 09 Oct 2019 at 20:00

Hi again,

Just a comment along the lines of what Shelagh said about her and Rob.

I’m sure that if a couple already love one another unconditionally then something like a cancer diagnosis is almost certain to strengthen that love. I know that if you have read my profile you will have seen I have been having some emotional issues but even so Chris and I are incredibly happy - both of us try not to look too far ahead. Admittedly she is better at it than me but her outlook helps me tremendously.

Take care

Dave

Edited by member 11 Oct 2019 at 09:28  | Reason: spelling error

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 09 Oct 2019 at 06:56

Hi Shelagh

Thanks for your reply. My husband is a bit behind yours as he has just had his third Docetaxel. They sound similar, he would also not question things, it is me who has a notepad in the appointments. 

I rang the PCUK nurses the day after we found out, I was devastated,  they were excellent and really calmed me down. Your post has reminded me they are still there if I need them.  We are in Preston, so not close to a Maggies Centre.

I know the new normal will come, even though I don't want it. My husband is positive and upbeat and carrying on as normal as much as possible. We are sensible of course in terms of avoiding germs and being vigilant whilst on chemo. 

Im going to try your tip about finding something good about each day to focus on instead of rushing from one day to the next worrying about the usual stuff (which it turns out isn't important at all ) as well as the diagnosis/prognosis/treatments/side effects etc. 

Thanks for your support and best wishes to you and your husband also.

Mrs MAS x

 

 

Edited by member 09 Oct 2019 at 06:57  | Reason: Not specified

Mrs MAS

User
Posted 10 Oct 2019 at 16:33

Hi Dave,

Yes I have read your profile and see you have some emotional issues. This thing is a lot for anyone to get their heads around even after the shock has subsided I guess. 

What I have seen from reading posts here is the sheer number of couples hit with this news and how much love they have for each other.  You and Chris and Shelagh and Rob included.

Thank you for your thoughts.

Mrs MAS

Edited by member 10 Oct 2019 at 16:36  | Reason: Not specified

Mrs MAS

User
Posted 24 Oct 2019 at 10:31

The side-effects of radiotherapy are relatively mild for most men. There may be some diarrhoea in the latter stages of the treatment, and the radiation can irritate the bladder resulting in the need to pee frequently (which can be pretty exhausting). Generally the side-effects peak about 10-14 days after treatment finishes. In my own case (I also had "wide beam" radiotherapy to treat possible but undetectable lymph node involvement) I was pretty much back to normal about a month after RT finished. For several months after I had occasional doses of prostitis (a burning sensation in the back passage), but on each occasion it cleared up after a couple of days. I'm now 7 months after the end of treatment and the only side-effect I'm left with is very, very occasionally (less than once a month) passing clear mucus (produced by the lining of the bowel).

RT is a reasonably "gentle" treatment in terms of side-effects. Nothing to worry about.

Best wishes,

Chris

Edited by member 24 Oct 2019 at 10:32  | Reason: Not specified

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 07 Oct 2019 at 10:48

It can be very difficult to come to terms with mortality. There's a tendency for us all to think we're going to live for ever, and when we get a medical diagnosis that puts a definite limit on our life expectancy, it's a huge shock, both intellectually and emotionally. I don't think there are any magic solutions; we all have to come to terms with a diagnosis such as this in our own way. Counselling can be a big help for many people - it would be worth contacting Macmillan and seeing if there's counselling available near you.

I can't really offer any words of comfort other than to say that you will come to terms with it. Cancer becomes the "new normal". There's every reason to believe that your husband will be with you for some years yet; there's a large and increasing array of drugs and other treatments that can extend life. Although every cancer drug is only effective for a limited amount of time (the cancer eventually becomes resistant to it), when one ceases to be effective, your oncologist can switch to another, and so on. Don't be alarmed if there seem to be delays in treatment at times: because of the limited timespan of the efficacy of drugs, your oncologist may well want to delay some treatments to the time that they will have their maximum benefit.

Very sorry that you find yourself in this situation, particularly at your young age. You're definitely in the right place to get support, and if you have any medical questions don't hesitate to phone the wonderful PCUK nurses on the Freephone number at the top of the page.

Very best wishes.

Chris

Edited by member 07 Oct 2019 at 10:49  | Reason: Not specified

User
Posted 08 Oct 2019 at 14:13

Thanks Lyn, Chris and Dave. All you say makes sense of course. I will read your stories. It is strangely comforting to know there are others going through similar times,  though obviously I wish none of us were.

I expect I will be posting questions/looking for advice on this forum again in future.

Thanks.

Mrs MAS

Mrs MAS

User
Posted 26 Oct 2019 at 16:32

Hi Mrs MAS, 

We are 13 months into our journey.  This is unchartered territory for us as well.  I found this forum and it has been a saving grace for me to simply talk with and read about others who are going through this, and a wealth of great info.  There are many people on this forum who very kindly take the time to reply to posts and share their experience and knowledge.  They are angels to me.  I share limited info with my husband.  He is fragile, been extremely athletic and healthy his entire life so it has been a shock.

We have strong faith and I pray a lot.  I feel it is important I am able to function and stay strong for him.  He is depending on me completely.  I quit my full time professional job in Dec of 2018 to take care of everything.  Hubby is still working.  I am an adjunct professor at a college part time.  We say every day is new grace and we live life.  This has kept us in the present.  We got a new puppy, again keeping us in the present.  We are kind to ourselves, do what we want to do, don't get caught up in drama, keep life simple.  We surround ourselves with supportive people.  

Please keep us posted on Mr MAS progress.  Hope is a wonderful thing!

Saint Paul

User
Posted 13 Nov 2019 at 11:21
Hi Mrs Mas

Notice you are in Preston that's where I had my radiotherapy sessions in March/April this year.

I was diagnosed August 2018 with Stage 4 Metastatic Prostate cancer, see my profile.

My Onco said because I was fit with no other underlying health problems he was proposing throwing the kitchen sink at it.

I've had HT, Prostap which is continuing, 6 sessions of chemotherapy which I tolerated pretty badly and 20 Radiotherapy sessions which were fine.

I'm feeling well 15 months after diagnosis, got a 6 week trip to Australia planned in the New Year and next appointment with my Oncologist in March.

Hope this helps.

John

User
Posted 13 Nov 2019 at 13:07
Yes there is a risk of bladder/bowel problems with RT. This was spelled out by my Onco before I signed the consent form.

What sold it to me was when he told me that initial trials of chemo/RT in quick succession has shown an average increase in life span of 12-15 months I thought it would be worth the risk.

Fortunately I've had no after effects from the RT apart from in the case of a number 2, when I've got to go I have to go😖

User
Posted 15 Nov 2019 at 08:31
You can certainly continue to lead a normal life, although the RT does eat up a large chunk of your day. In my case the hospital was 40 miles away, so I had an hour's drive to get there, about an hour and a half there, then an hour's drive home again. You have to arrive at the hospital about 45m prior to treatment, use a micro-enema to make sure the lower bowel is empty, and drink three cups of water to ensure the bladder is moderately full and lifted away from the prostate, to minimise radiation damage.

Best wishes,

Chris

User
Posted 15 Nov 2019 at 09:19
On the other hand, it may not be like that. John's appointment was first thing every morning, he went on the way to work and was usually there for about 15-20 minutes, except on Wednesdays when he also the oncologist. At our hospital, you don't do mini-enemas; it varies from area to area.

He worked throughout, still went to the gym every day and carried on playing rugby. Towards the end, he had an afternoon nap at his desk sometimes. The one thing you will definitely need to do is buy some PH neutral shower gel.

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

User
Posted 15 Nov 2019 at 12:10

Originally Posted by: Online Community Member

Cheers Chris and Lyn. Dare I ask why the PH neutral shower gel? 

I didn't use it myself, but RT can make the skin around the treated area sore (like sunburn), so a harsh shower gel may irritate it. 

Chris

 

User
Posted 15 Nov 2019 at 21:05

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Cheers Chris and Lyn. Dare I ask why the PH neutral shower gel? 

I didn't use it myself, but RT can make the skin around the treated area sore (like sunburn), so a harsh shower gel may irritate it. 

Chris

 

It was an absolute rule in the RT department when J had RT. The info leaflet said a) perfumed soaps and gels could irritate sore skin and b) some of the shower gels contain metallics and plastics which could impede the carefully planned radio beams from arriving exactly where they are supposed to. 

Baby wash or pure shower gels are easily available in all supermarkets. 

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

User
Posted 28 Dec 2019 at 12:39
Regarding RT and advanced PCA it is now considered even if there are distant metastasis. This is because research has proven it to be beneficial.
User
Posted 08 Jan 2020 at 00:05
I would hold the Radium back for future use if he isn't having any problems from the bone mets at the moment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 09:49
Hi,

Just a quick bit about bone mets discovered after chemotherapy. I was given a bone scan soon after my six sessions to 1. Give a new starting point as in this is where we are now and 2. To see if any new bone mets showed up that weren’t visible on the original scan. In fact my consultant advised me beforehand that that might be the case.

Dave

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 20:06

Great news!
Shelagh xx

 

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

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 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 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 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

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User
Posted 07 Oct 2019 at 09:51
I see you are quite young and I think it is perfectly understandable to feel shocked and sad at an incurable diagnosis. How old is he?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Oct 2019 at 10:03

Hi Lyn,

My husband is 65 so I am much younger, you wouldn't notice to look at him. He, up to now, has been fit, strong, healthy and is still working in a manual job.   

It is only recent side effects from chemo and the hormone therapy which has made him feel a bit off. Other than that we honestly would not know anything was the matter.

Mrs MAS

Mrs MAS

User
Posted 07 Oct 2019 at 10:48

It can be very difficult to come to terms with mortality. There's a tendency for us all to think we're going to live for ever, and when we get a medical diagnosis that puts a definite limit on our life expectancy, it's a huge shock, both intellectually and emotionally. I don't think there are any magic solutions; we all have to come to terms with a diagnosis such as this in our own way. Counselling can be a big help for many people - it would be worth contacting Macmillan and seeing if there's counselling available near you.

I can't really offer any words of comfort other than to say that you will come to terms with it. Cancer becomes the "new normal". There's every reason to believe that your husband will be with you for some years yet; there's a large and increasing array of drugs and other treatments that can extend life. Although every cancer drug is only effective for a limited amount of time (the cancer eventually becomes resistant to it), when one ceases to be effective, your oncologist can switch to another, and so on. Don't be alarmed if there seem to be delays in treatment at times: because of the limited timespan of the efficacy of drugs, your oncologist may well want to delay some treatments to the time that they will have their maximum benefit.

Very sorry that you find yourself in this situation, particularly at your young age. You're definitely in the right place to get support, and if you have any medical questions don't hesitate to phone the wonderful PCUK nurses on the Freephone number at the top of the page.

Very best wishes.

Chris

Edited by member 07 Oct 2019 at 10:49  | Reason: Not specified

User
Posted 07 Oct 2019 at 13:50
Hi,

It is inevitable that you are going to worry about the future but it’s impossible to know what will happen. Everyone reacts differently to the disease and the treatment. It’s great that your husband is tolerating the chemotherapy well and his PSA is coming right down. As he is on the third cycle it is likely it will come down further.

Whenever I get a bit anxious and looking for answers my oncologist always tells me that he doesn’t have a crystal ball and guessing doesn’t help anybody. I was diagnosed with metastatic PCa just over three years ago and have just about got the hang of appreciating life as it is now. It’s been a bit of a struggle at times but physically you would never have known there was anything wrong with me either, not at diagnosis nor since. My bio is up to date if you want to take a look.

All the best and make sure you look after one another.

Dave

User
Posted 08 Oct 2019 at 14:13

Thanks Lyn, Chris and Dave. All you say makes sense of course. I will read your stories. It is strangely comforting to know there are others going through similar times,  though obviously I wish none of us were.

I expect I will be posting questions/looking for advice on this forum again in future.

Thanks.

Mrs MAS

Mrs MAS

User
Posted 08 Oct 2019 at 18:45

Hi Mrs Mas

Rob, my husband was diagnosed about 6 months ago - PSA 18, Gleason 9 and lymph involvement in pelvis, behind stomach and near one shoulder (9 in all). Just finished 5th docetaxel and on 3 monthly prostap.

I am only mentioning the following because what I learnt then is helping me now.  Rob had stage 3 bowel cancer 10 years ago. He has done very well, but we weren't to know that then.

What kept me going then was focussing on the present, and the knowledge that his consultants had a plan. I hung on to that, although I also learnt to question them if things weren't clear or I wasn't happy (Rob is not like that). When things got too much for me, I phoned Macmillan and spoke to a wonderful nurse. I have now done the same with the excellent Prostate Cancer UK nurses. I also used to tell myself  'it's as good as it gets' and at the end of the day would focus on even the smallest good thing that had happened that day. I used to be a 'glass half empty' person but I have gradually become 'glass half full'. It didn't happen overnight, but it has made life easier for me and I have learnt to live in the present and stop worrying about the future.

It's not easy to concentrate on anything when you are in shock - it is a frightening time.  Cheshire Chris hit the nail on the head when he referred to  the 'new normal' and I hope that gradually you will be able to move towards this. When you do, seize life by the horns and make the most of it.  I have healthy relatives who are not half as happy as we are!

Also, I have just found our cancer hospital's new Maggies centre. It is wonderful, so if there is one near you, it is worth visiting. I found support, laughter and a great cup of tea.

My best wishes to you both.

Shelagh xx

 

 

 

User
Posted 09 Oct 2019 at 06:56

Hi Shelagh

Thanks for your reply. My husband is a bit behind yours as he has just had his third Docetaxel. They sound similar, he would also not question things, it is me who has a notepad in the appointments. 

I rang the PCUK nurses the day after we found out, I was devastated,  they were excellent and really calmed me down. Your post has reminded me they are still there if I need them.  We are in Preston, so not close to a Maggies Centre.

I know the new normal will come, even though I don't want it. My husband is positive and upbeat and carrying on as normal as much as possible. We are sensible of course in terms of avoiding germs and being vigilant whilst on chemo. 

Im going to try your tip about finding something good about each day to focus on instead of rushing from one day to the next worrying about the usual stuff (which it turns out isn't important at all ) as well as the diagnosis/prognosis/treatments/side effects etc. 

Thanks for your support and best wishes to you and your husband also.

Mrs MAS x

 

 

Edited by member 09 Oct 2019 at 06:57  | Reason: Not specified

Mrs MAS

User
Posted 09 Oct 2019 at 20:00

Hi again,

Just a comment along the lines of what Shelagh said about her and Rob.

I’m sure that if a couple already love one another unconditionally then something like a cancer diagnosis is almost certain to strengthen that love. I know that if you have read my profile you will have seen I have been having some emotional issues but even so Chris and I are incredibly happy - both of us try not to look too far ahead. Admittedly she is better at it than me but her outlook helps me tremendously.

Take care

Dave

Edited by member 11 Oct 2019 at 09:28  | Reason: spelling error

User
Posted 10 Oct 2019 at 16:33

Hi Dave,

Yes I have read your profile and see you have some emotional issues. This thing is a lot for anyone to get their heads around even after the shock has subsided I guess. 

What I have seen from reading posts here is the sheer number of couples hit with this news and how much love they have for each other.  You and Chris and Shelagh and Rob included.

Thank you for your thoughts.

Mrs MAS

Edited by member 10 Oct 2019 at 16:36  | Reason: Not specified

Mrs MAS

User
Posted 24 Oct 2019 at 07:23

Hi all

We received a copy of a letter yesterday (from hospital to GP) which has a slightly more detailed diagnosis on than we were provided with in July (in the bio) . I know its medical terminology but thought I would share. It says 

"T3a(early), N1(enlarged nodes along right pelvic sidewall aortacaval and left paraaortic retroperitoneum), M1a reroperitoneal/paraaortic nodes, Gleason 4+4 adenocarcinoma of prostate. PSA 287, diagnosed July 2019."

This sounds worse than the original - does this mean it is in lots of lymph nodes? Do I need to ask for the actual number of lymph nodes it is in?

Also there is a line for 'treatment' This says 

"Hormonal manipulation, upfront Docetaxel chemotherapy, started August 2019, awaiting consideration of pelvic radiotherapy therefter."

He has just had his 4th chemo two days ago and is feeling okay and doing quite well on it so far.

Can anyone shed any light on the radiotherapy bit?  Now i have more questions - I thought it was not suitable for men where the cancer had spread to distant lymph nodes (I think the M1a above refers to distant lymph nodes). What, then will determine if he is able to have pelvic radiotherapy? Is it worse than chemo? What are the side effects etc?

Mrs MAS

Mrs MAS

User
Posted 24 Oct 2019 at 10:31

The side-effects of radiotherapy are relatively mild for most men. There may be some diarrhoea in the latter stages of the treatment, and the radiation can irritate the bladder resulting in the need to pee frequently (which can be pretty exhausting). Generally the side-effects peak about 10-14 days after treatment finishes. In my own case (I also had "wide beam" radiotherapy to treat possible but undetectable lymph node involvement) I was pretty much back to normal about a month after RT finished. For several months after I had occasional doses of prostitis (a burning sensation in the back passage), but on each occasion it cleared up after a couple of days. I'm now 7 months after the end of treatment and the only side-effect I'm left with is very, very occasionally (less than once a month) passing clear mucus (produced by the lining of the bowel).

RT is a reasonably "gentle" treatment in terms of side-effects. Nothing to worry about.

Best wishes,

Chris

Edited by member 24 Oct 2019 at 10:32  | Reason: Not specified

User
Posted 26 Oct 2019 at 16:32

Hi Mrs MAS, 

We are 13 months into our journey.  This is unchartered territory for us as well.  I found this forum and it has been a saving grace for me to simply talk with and read about others who are going through this, and a wealth of great info.  There are many people on this forum who very kindly take the time to reply to posts and share their experience and knowledge.  They are angels to me.  I share limited info with my husband.  He is fragile, been extremely athletic and healthy his entire life so it has been a shock.

We have strong faith and I pray a lot.  I feel it is important I am able to function and stay strong for him.  He is depending on me completely.  I quit my full time professional job in Dec of 2018 to take care of everything.  Hubby is still working.  I am an adjunct professor at a college part time.  We say every day is new grace and we live life.  This has kept us in the present.  We got a new puppy, again keeping us in the present.  We are kind to ourselves, do what we want to do, don't get caught up in drama, keep life simple.  We surround ourselves with supportive people.  

Please keep us posted on Mr MAS progress.  Hope is a wonderful thing!

Saint Paul

User
Posted 27 Oct 2019 at 11:55

Thanks for sharing your experience of radiotherapy Chris. It doesn't sound as scary as I thought, though I know everyone is different.  If it turns out he is offered it I will post again with more questions no doubt.

Mrs MAS

Edited by member 27 Oct 2019 at 12:03  | Reason: Not specified

Mrs MAS

User
Posted 27 Oct 2019 at 11:59

Hi Saint Paul, 

I feel the same as you about the forum I am so glad I found it. Sorry you are here too. Thank you for your good advice of being kind to ourselves and keeping things simple. 

Best wishes to you and your husband also.

Mrs MAS

Mrs MAS

User
Posted 13 Nov 2019 at 11:21
Hi Mrs Mas

Notice you are in Preston that's where I had my radiotherapy sessions in March/April this year.

I was diagnosed August 2018 with Stage 4 Metastatic Prostate cancer, see my profile.

My Onco said because I was fit with no other underlying health problems he was proposing throwing the kitchen sink at it.

I've had HT, Prostap which is continuing, 6 sessions of chemotherapy which I tolerated pretty badly and 20 Radiotherapy sessions which were fine.

I'm feeling well 15 months after diagnosis, got a 6 week trip to Australia planned in the New Year and next appointment with my Oncologist in March.

Hope this helps.

John

User
Posted 13 Nov 2019 at 12:22

Thanks John. Have just read your profile, you are not far from us. Glad to see your latest results are good.

What worries me about the RT (which he may/may not be offerred) is at the moment my husband has no symptoms from the PCa itself (well he does wee often and has been the case for years but doesn't affect/disrupt his life) and IdI'd be afraid that RT might damage his bowel/bladder area and end up with new issues. 

Also I am assuming that RT for advanced cancer is a new thing? Were you told what the benefits are as its already escaped the prostate? 

Best wishes

Mrs MAS

Edited by member 13 Nov 2019 at 12:30  | Reason: Not specified

Mrs MAS

User
Posted 13 Nov 2019 at 13:07
Yes there is a risk of bladder/bowel problems with RT. This was spelled out by my Onco before I signed the consent form.

What sold it to me was when he told me that initial trials of chemo/RT in quick succession has shown an average increase in life span of 12-15 months I thought it would be worth the risk.

Fortunately I've had no after effects from the RT apart from in the case of a number 2, when I've got to go I have to go😖

User
Posted 14 Nov 2019 at 19:34

I have a possibly stupid question. Regarding radiotherapy to the prostate, is it administered up the bottom? 

Mrs MAS

Mrs MAS

User
Posted 14 Nov 2019 at 19:44

Mrs Mas

No such thing as stupid questions.

Google "you tube prostate rt treatment" then select videos, there is a video of the process, I have only skipped through it and there are regional variations. 

Thanks Chris

Edited by member 14 Nov 2019 at 20:00  | Reason: Not specified

User
Posted 14 Nov 2019 at 20:03

Thanks Chris, will do.

Mrs MAS

Mrs MAS

User
Posted 14 Nov 2019 at 20:40

Originally Posted by: Online Community Member

I have a possibly stupid question. Regarding radiotherapy to the prostate, is it administered up the bottom? 

Mrs MAS

No, it's external. You lie flat on your back on a table in the middle of a machine that looks like a large vertical donut. You start off by having a planning session in which three dots are tattooed on you - one on each thigh and one in the middle, over the public bone. These dots are used to exactly line you up on the table during your subsequent treatment sessions.

The radiation beam is delivered out of a tube that points at the appropriate area, and rotates around the table you're lying on. It goes around twice, first one way, and then the other. Lead plates inside the emitter are constantly moving to delivery a precisely shaped 3-dimensional radiation dose to exactly the parts that need it, with minimal exposure to any other part of the body. 

It’s a very straightforward process, and you quickly get into the swing of it. I had 30 sessions, so treatment Monday to Friday for 6 weeks.

Best wishes,

Chris

 

Edited by member 14 Nov 2019 at 20:44  | Reason: Not specified

User
Posted 15 Nov 2019 at 07:16

Thanks Chris, thats very informative. I know everyone's different but are you able to still go to work/do normal things around it (apart from going to the hospital every day).

Mrs MAS

Mrs MAS

User
Posted 15 Nov 2019 at 08:31
You can certainly continue to lead a normal life, although the RT does eat up a large chunk of your day. In my case the hospital was 40 miles away, so I had an hour's drive to get there, about an hour and a half there, then an hour's drive home again. You have to arrive at the hospital about 45m prior to treatment, use a micro-enema to make sure the lower bowel is empty, and drink three cups of water to ensure the bladder is moderately full and lifted away from the prostate, to minimise radiation damage.

Best wishes,

Chris

User
Posted 15 Nov 2019 at 09:19
On the other hand, it may not be like that. John's appointment was first thing every morning, he went on the way to work and was usually there for about 15-20 minutes, except on Wednesdays when he also the oncologist. At our hospital, you don't do mini-enemas; it varies from area to area.

He worked throughout, still went to the gym every day and carried on playing rugby. Towards the end, he had an afternoon nap at his desk sometimes. The one thing you will definitely need to do is buy some PH neutral shower gel.

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

User
Posted 15 Nov 2019 at 10:32

Cheers Chris and Lyn. Dare I ask why the PH neutral shower gel? 

Edited by member 15 Nov 2019 at 10:33  | Reason: Spelling

Mrs MAS

User
Posted 15 Nov 2019 at 11:56

At Royal Preston they only did the enemas for the first 5 visits. Bit of a waste of time for me, they never worked.

The other thing at Royal Preston they offered all RT patients discounted parking at £2.50 a day but I gave up after 3 days because I couldn't find a space and ended up parking in the street on the other side of the A6 for free.

Edited by member 15 Nov 2019 at 11:58  | Reason: typo

User
Posted 15 Nov 2019 at 12:10

Originally Posted by: Online Community Member

Cheers Chris and Lyn. Dare I ask why the PH neutral shower gel? 

I didn't use it myself, but RT can make the skin around the treated area sore (like sunburn), so a harsh shower gel may irritate it. 

Chris

 

User
Posted 15 Nov 2019 at 12:30

Just a little curiosity to do with radiation. One of my tattoos which they use to guide the machine was on my hip where I had a patch of psoriasis (I've had this complaint for many years). The radiotherapy almost completely cleared it up. Even 3 and a half years on there is only a tiny patch whereas before it was the size of a tennis ball.

Not really relevant but a welcome side effect!

User
Posted 15 Nov 2019 at 13:36

Hi Pete

A positive side effect from anything to do with this is good to hear! 

Mrs MAS

Mrs MAS

User
Posted 15 Nov 2019 at 13:39

John, thanks for the A6 parking tip. Its awful any time of day at RPH.

Mrs MAS

 

Mrs MAS

User
Posted 15 Nov 2019 at 21:05

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Cheers Chris and Lyn. Dare I ask why the PH neutral shower gel? 

I didn't use it myself, but RT can make the skin around the treated area sore (like sunburn), so a harsh shower gel may irritate it. 

Chris

 

It was an absolute rule in the RT department when J had RT. The info leaflet said a) perfumed soaps and gels could irritate sore skin and b) some of the shower gels contain metallics and plastics which could impede the carefully planned radio beams from arriving exactly where they are supposed to. 

Baby wash or pure shower gels are easily available in all supermarkets. 

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

User
Posted 15 Nov 2019 at 21:08

https://www.clatterbridgecc.nhs.uk/patients/treatment-and-support/radiotherapy/treatment/skin-care

 

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

User
Posted 15 Nov 2019 at 21:15
Interesting - nobody at Clatterbridge mentioned it to me. Fortunately I never use shower gel, just unscented soap.

Chris

User
Posted 25 Nov 2019 at 09:47

We have an appointment with our oncologist on Friday prior to my husbands last chemo. I know he will have a scan in January. 

I am going to ask about the criteria for their decision on radiotherapy. Thanks for the information you all have already given me . Is there anything specific we should be asking the oncologist do you think? 

Mrs MAS

Mrs MAS

User
Posted 29 Nov 2019 at 14:25

Just an update from todays appointment. My husband has his final chemo next Tuesday. They were pleased he has done quite well on it. He will be sent for a scan in January. He will have a PSA prior to a three month appointment in February.

Depending on what the scan shows he may have prostate or pelvic radiotherapy and if so it will be 37 sessions. 

It sounds like pelvic radiotherapy is a much wider area than just the prostate? I did query that I'd read that RT was pointless if there is spread to the lymph nodes (as in my husbands case includes some distant ones). The registrar just said we will wait to see what the scan shows. 

It feels alien to me to have no control of what will happen and when but I guess this is our life now. 

Thanks to all who have shared their advice on here.

Mrs MAS 

Edited by member 29 Nov 2019 at 14:36  | Reason: Spelling

Mrs MAS

User
Posted 27 Dec 2019 at 13:55

Hi everyone, hope you made the most of your Christmasses.

Having today received a copy of the clinic letter, has anyone heard of being re-staged? 

Quick story, my husband was diagnosed with advanced prostate cancer in July with spread to lymph nodes. T3a, N1, M1a  and Gleason 8. He started hormone therapy in July, had upfront chemo, last cycle was 3 Dec. He has coped very well and feels well now. We were told he would have a CT scan in new year and be considered for pelvic radiotherapy.

The clinic letter we just got says he will be re-staged with the upcoming scan. Has anyone heard of this? I thought once you were staged that never changes. Also as it is advanced the scan results are presumably only ever going to be the same or worse? 

Sorry if I'm asking a really stupid question.

Mrs MAS

Edited by member 27 Dec 2019 at 14:06  | Reason: Pressed post too soon.

Mrs MAS

User
Posted 27 Dec 2019 at 14:25
Hi

It is common after RP as the biopsy gives a more accurate view.

I suspect in this case the CT scan will give more information so will allow a restaging.

Bear in mind it can go up, down or remain unchanged.

P

User
Posted 27 Dec 2019 at 14:30

Hi 

Thank you, however as he was advanced he was incurable so only had HT and chemo - no RP.  Hence I'm very unsure what they mean by re-staging.

Regards

Mrs MAS

Edited by member 27 Dec 2019 at 14:30  | Reason: Not specified

Mrs MAS

User
Posted 27 Dec 2019 at 15:21
Hi

In that case it is I guess just finding out what activity is where so they can explore options.

User
Posted 27 Dec 2019 at 16:11
I think ‘re-staged’ is shorthand for ‘the staging will be assessed again in the light of the CT scan’ ... in other words, is it still a T3a. They will want to see whether the HT or chemo has led to any of the tumours shrinking.

‘Staging’ is the TNM numbers and they can change as disease progresses; someone who was N0M0 will obviously become a N0M1 if it moves to their bones or organs or to N1M0 if it spreads to distant lymph nodes, and in someone who isn’t controlled with hormones, a T2 can escape the gland and become a T3 or T4.

It is the Gleason score that doesn’t usually change.

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

User
Posted 27 Dec 2019 at 16:50

Thanks Lyn. This makes sense. He was diagnosed out of the blue less than six months ago and he had immediate HT and chemo and responded well, if the PSA is anything to go by. I think I just panicked and thought surely it hasn't got worse already? Though of course we know nothing is guaranteed. 

Mrs MAS

Edited by member 27 Dec 2019 at 16:58  | Reason: Not specified

Mrs MAS

User
Posted 28 Dec 2019 at 12:39
Regarding RT and advanced PCA it is now considered even if there are distant metastasis. This is because research has proven it to be beneficial.
User
Posted 07 Jan 2020 at 00:23

All the best for your husbands scans. My father (77, Gleason 9) has just finished his 6 rounds of chemo. Tolerated chemo well, and PSA went down from 300 to 0.4. Was also then told he would likely have radiotherapy, but radiotherapy by the Clinical Oncologist was then cancelled after CT scans showed some mets in the bone, which apparently were 'shown up' after the chemo.

We hoped for the option of radiotherapy too, but seems to be off the table now, though I will be double checking with the Snr. Oncologist when see her in mid Jan

Will follow this thread, and best wishes to you both

User
Posted 07 Jan 2020 at 09:51

Hi, sorry radiotherapy is off the table for your father. You just never know whats coming next. It hadnt crossed my mind that new bone involvement could show up so quick even after chemotherapy treatment.

Hope your mid January appointment goes well. Is your father just on hormone therapy now then? 

Mrs MAS

Mrs MAS

User
Posted 07 Jan 2020 at 22:21

Hi, we were also surprised.  He has done really well on chemo (tolerated 6 cycles with little to no side effects, and PSA down from over 300 pre chemo to 0.4 post chemo). Did so well, that he was told he would have radiotherapy.  We were told that the bone mets discovered on CT scans post chemo were not 'new' mets,  but instead were highly likely to be pre-existing (non detectable) micro-mets that are now showing up, as have been 'illuminated' by the effects of the chemo.  Mets described s tiny and scattered (more than 5 but less than 10). Were told this happens, rarely.  Difficult to get our head round this, but it seems Radiotherapy is now off the table, as would do more harm than good.  Interested to know if anyone else has experienced this (bone mets only showing up/being illuminated 'after' chemo?).  Whether worth pursuing a second opinion on the appropriateness of Radiotherapy?

Will explore this further with Oncologist next week, but expect he will now remain just on hormone therapy / Prostap until it stops working, and then I expect Abi or Enza will be the next option.  We will ask also about Xofigo (Radium 223) as I believe this is effective when there are bone mets - however I understand it can now only be administered 'after' chemo and also after Abi or Enza.  We will also ask about Apalutamide as a treatment option as my Father is 'metastatic hormone sensitive' and would like to know if Apalutamide has this license.  Interested to know others perspectives on the appropriateness of Radium 223 and Apalutamide, given my Fathers position (aged 77, Gleason 9, otherwise fit, PSA was 322 but now 0.4, but bone mets now found).  All the best to you

 

User
Posted 08 Jan 2020 at 00:05
I would hold the Radium back for future use if he isn't having any problems from the bone mets at the moment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 09:49
Hi,

Just a quick bit about bone mets discovered after chemotherapy. I was given a bone scan soon after my six sessions to 1. Give a new starting point as in this is where we are now and 2. To see if any new bone mets showed up that weren’t visible on the original scan. In fact my consultant advised me beforehand that that might be the case.

Dave

User
Posted 20 Jan 2020 at 14:19

Hi all,

I tried to put this in a new thread but keep getting an access denied message.

My husband had his last chemo on 3 December. He got through it well with a few side effects the worst being from the last session.

However he is now suffering from bowel issues (urgency and no control) a few times a week . It was not much of an issue while he was on chemo.

Did anyone else find this?

He will see his GP of course but could it just be a lingering side effect of the last cycle. Is that possible six weeks later? 

Thanks

Mrs MAS

Edited by member 24 Jan 2020 at 10:23  | Reason: Title change to reflect new question

Mrs MAS

User
Posted 26 Jan 2020 at 22:42

No my husband had the 6 sessions of chemo and never had any GI issues during or after.  Every one is different.  We were told it was a common side effect however during, but not that long after.  Do hope it clears up soon, he must be miserable with it.  So sorry!  

 

 
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