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Recent diagnosis & separation - separation

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User
Posted 21 Oct 2017 at 13:50

Hello,

 

I was diagnosed just before my 61st birthday with localised prostrate cancer. I had the treatment discussion this week, surgery, external beam radiotherapy or cyberknife. All as you know with unwanted side effects. I have recently separated after 20years and this journey feels like it is going to be lonely and painful. I wanted to get in touch with this community and find what resources there are to help me.

 

Pale Rider

User
Posted 25 Oct 2017 at 07:58

Hi Grant,

Best wishes for tomorrow. Hope you have someone going with you.. it helps to have a second pair of ears and a list of questions written down as it's so easy to forget to ask as well as forget what was said..

So pen, paper, questions written down and someone with you is my advise.

Kind Regards

Clare

User
Posted 21 Oct 2017 at 19:45

Hi Grant,

Welcome to this forum though sorry for the reason that brings you here.

It is possible that your first post did not show immediately and that you posted it again in similar context in this thread. (New posts are invariably considered by a moderator before appearing, hence the delay). It would be better if you and respondents now only use/respond to this thread, otherwise replies will be split between your threads. You can delete the previous one by using the appropriate green and white button on the right which will simplify further replies.

Sorry you and your partner have separated. Are there any other family members you could discuss your situation with? We are a pretty friendly bunch and members are often very forthcoming about their situations which can be very diverse so don't be shy in asking questions or looking for support.

We have little information on your diagnosis. It will help us and you learn more if you obtain your PSA on diagnosis, your Gleason score and staging and any further info that can be obtained such as the number of cores found to have cancer and percentages. The 'Tool Kit', available from the publications department ,will help you consider which treatment option you prefer or put another way you dislike least.

From what you say you have been offered a choice from two forms of radiation and surgery. Cyberknife, has not been used extensively in the UK and when it has been it has mostly been used as salvage treatment. It is possible that either you are unsuitable for brachytherapy or that your hospital does not offer it, nothwithstanding brachytherapy is becoming more widely favoured. Research your options and make your decision. Good luck!

Barry
User
Posted 23 Oct 2017 at 08:06

It's the cribriform pattern that is significant, Palerider. A G3 with cribriform is upgraded to a 4 because of its aggressiveness and the likelihood of spread later so although you are a 3+4 you will be treated as if you are a 4+4.

That is probably why you are unsuitable for AS or brachy . Cribriform cancer needs to be treated as radically as possible and without unnecessary delays.

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

User
Posted 14 Nov 2017 at 04:51

Hi Grant,

Great instagram photos !

I saw the Article 25 website route video which routed N to Lake Indaw region.

The author George MacDonald Fraser, of Flashman fame was at Meikhtila.

Enjoy the trip.

Graham

User
Posted 25 Jan 2018 at 16:36

I have just finished 5 sessions of Cyberknife radiation therapy. I felt a huge relief and a sense of achievement when I walked out of the clinic yesterday afternoon. Although I won't know the success of the treatment until after an MRI in a few months time, I still left incredibly relieved. Side effects seem to be minimal; from the Bicalutamide, sore and tender breasts and significant loss of libido , but I have now finished the course of tablets. From the radiation therapy; today I have felt like I needed bowel motions every couple of hours, then very loose with lots of mucus, a marked decrease in flow rate (I have been prescribed Tamsulosin) and a feeling that I can't empty my bladder fully. My testicles feel as though they have shrivelled, but I look in the mirror and they haven't. I do feel strangely tired and it has been difficult to get to sleep for a number of reasons, but the tiredness is not one I have ever experienced. I can best describe it as general exhaustion, fuelled by anxiety as my body has changed. I felt this in the shower this morning; my body felt different but I don't know how. Perhaps I am anticipating the change that may take effect regarding my sexual drive, my identity as a man, my uncertain future and missing my life partner and not having her to talk to about the range of emotions I have experienced.

I check this forum every other day and I have found this to be a great source of knowledge and a good platform to share experiences, and to be able to offer something to other users. In addition the clinic that treated me and the specialists I have seen have been fantastic. I have used the Maggie's Centre at Bart's, which is in a sublime building, a bamboo interior wrapped in concrete and the concrete enveloped by glass. It is a very comforting and relaxing space. Go and visit this centre for its architectural merit as well as the very helpful and understanding staff.

I am more than halfway through a journey I never expected to take, less 4 months ago I knew very little of the disease, nor the treatments, nor the language and terms that are used in the treatment of cancer.

This part of the process has taken place so quickly, and I hope effectively, so I can start rebuilding my life.

Pale Rider

User
Posted 25 Jan 2018 at 16:57

Glad that's over for you Pale Rider.

Now it's time to sit back and allow your body to heal and the drugs to leave.

Not only are you tired from the drugs and cyberknife you have to face the "anti-climax" (no pun whatever intended) of it all being over. Your mind will now dwell on the what haves and the might have beens.

If you are not sleeping (for whatever reason) then your body will be slow to heal itself.

I hope you can learn to relax a little bit and have a bit of "me" time.

Best wishes for a speedy recovery

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2018 at 18:53
Hiya Palerider,

This is the first time I've seen your posts. Separation followed by PC diagnosis is a massive blow, particularly when we then have to research the subject along with the recovery roller coaster ride on which we unwilling embark. But, to take on your Myanmar trek at this particular juncture in your life is really impressive, an attitude that I believe will sustain you through your recovery. I wish you all the best. Just a quick point regarding anticipating changes to our bodies and minds post treatment. I'm certain this happens to quite a few men for the precise reasons you site. Talking and sharing your emotions is very cathartic,something I wholeheartedly advise, but strangely don't always practice. Take care.

Paul.

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User
Posted 21 Oct 2017 at 18:47

Hello Palerider and welcome to the site.

If your diagnosis was localised PC were you offered Active Surveillance (what was your PSA by the way)

IF you go to Publicatons on ths site you can view or download a lot of information on the various treatments including AS.

Active surviellance is where you are monitored carefullyand offers a bit of breathing space so that you can get your head round the various options available to you.
AS isn't for everyone. The knowledge that you have cancer inside you and nothing is being done about it doesn't suit everyone.

As you acknowledge yourself there will possibly be unwelcome side effects whatever you choose to do (except AS of course)

I'm sorry that you no longer have the support of a partner because it does help. However, you've found us now and we will help with a listening ear and advice where we can.

I'm sure others will be along at some stage (it's often quieter at the weekends.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Oct 2017 at 19:45

Hi Grant,

Welcome to this forum though sorry for the reason that brings you here.

It is possible that your first post did not show immediately and that you posted it again in similar context in this thread. (New posts are invariably considered by a moderator before appearing, hence the delay). It would be better if you and respondents now only use/respond to this thread, otherwise replies will be split between your threads. You can delete the previous one by using the appropriate green and white button on the right which will simplify further replies.

Sorry you and your partner have separated. Are there any other family members you could discuss your situation with? We are a pretty friendly bunch and members are often very forthcoming about their situations which can be very diverse so don't be shy in asking questions or looking for support.

We have little information on your diagnosis. It will help us and you learn more if you obtain your PSA on diagnosis, your Gleason score and staging and any further info that can be obtained such as the number of cores found to have cancer and percentages. The 'Tool Kit', available from the publications department ,will help you consider which treatment option you prefer or put another way you dislike least.

From what you say you have been offered a choice from two forms of radiation and surgery. Cyberknife, has not been used extensively in the UK and when it has been it has mostly been used as salvage treatment. It is possible that either you are unsuitable for brachytherapy or that your hospital does not offer it, nothwithstanding brachytherapy is becoming more widely favoured. Research your options and make your decision. Good luck!

Barry
User
Posted 22 Oct 2017 at 08:53

Thank you Barry & Sandra,
My PSA was 10.4, Gleason score 7 (3+4), grade group2, cribriform pattern, T2 N0

I had a bad reaction to the TRUS biopsy, spending 3 days in hospital on antibiotics through IV a week after the examination.
I am fit, cycle regularly and slim built, so recovery should be quick.
My eldest son came with me to the treatment consultation.

Specialist told me AS nor seed brachytherapy were options. The only 2 options being surgery or external beam radiotherapy. An additional one mentioned was cyberknife, which as you know is only available privately. There is a PACE trial currently running, which I could opt for and the selection on either EBR or Cyberknife is random.

I'm worried about surgery, the significant issues, ED, incontinence. The RT also has its concerns for me, the use of hormones.

Fundamentally this cancer strikes at the heart of our creativity, manhood and identity gender.
Thank you in advance for your support.

Grant

User
Posted 22 Oct 2017 at 09:34
Hi Grant,

Hello and sorry that you find yourself here.

I thought I would say hello as your final sentence really resonated. Everyone seems to react differently with some very keen to have a radical treatment to 'take out or take on' the cancer, some, including my husband, want to avoid the side effects of the radical treatments if any other solution is possible.

This time between diagnosis ( sorry to hear your biopsy story) and decision making was just the worst but definitely worth researching all the offered treatments so as to be in full understanding of what it all involves. Reading up on the trials is something we did also, looking for focal treatments that are being trialled from time to time.

Really understand how you are feeling... The worst of times. It does seem to get better once a decision/ a plan is in place.did you get an MpMRI scan?

Regards

Clare

User
Posted 22 Oct 2017 at 20:17

Hi Clare,

Thank you for your comments and support. I am going to see specialist on Thursday to discuss what treatment I have opted for. I have been reading the prostratecancer.org publications and it is daunting. I don't what I feel at present - punchdrunk is probably a good way to describe it, as I enter the third age.

I had the MRI scan, then TRUS biopsy and a CT scan on my liver (which fortunately revealed nothing).

I don't know what else to say, and reading some of the testimonies on this site, many of you have undergone more difficult ordeals. But our own story is the one we live through.

Regards,

Grant

User
Posted 22 Oct 2017 at 21:09

Hi Grant,

It would appear from the information you have given that you will be treated with curative intent, although we do know that sometimes when removed Prostates are examined in the lab that the cancer can be found to be more aggressive/advanced than previously thought, so it's not certain either radical treatment will completely destroy all cancer. Treatments invariably have some side effects which vary in degree from one person to another. This uncertainty and inherent risk is the price that is paid for possible cure or delaying the progress of PCa.

Hope all goes well for you.

Barry
User
Posted 23 Oct 2017 at 00:26

Originally Posted by: Online Community Member

Hello,

 

I was diagnosed just before my 61st birthday with localised prostrate cancer. I had the treatment discussion this week, surgery, external beam radiotherapy or cyberknife. All as you know with unwanted POTENTIAL side effects. I have recently separated after 20years and this journey feels like it is going to be lonely and painful.  IT'S NOT!  I wanted to get in touch with this community and find what resources there are to help me.

 

Pale Rider

 

Hi Palerider, by the way what an excellent film that was, very much of its time, but good nonetheless.

 

I have added in bold my qualifiers to your your initial post.

 

Important to remember that side effects are all ONLY potential. ALL potential, BUT ONLY potential. 

 

AND, You are not alone.  This community are here 24/7.  Even folks who have/have had PCa who dip in every now and then.

 

As for your choice of treatment?  ONLY YOU can decide.  And ONLY YOU will live, or die, with the consequences of your choice.

 

If you are localised, you will be treated with a view to a cure.  Bit of good news.

 

So, moving forward, what to do for you?  Do your research wisely not necessarily widely.  WIDELY - can confuse.  WISELY - informs.

 BUT you are not alone.

 

atb

 

dave,

 

Diagnosed March 2013, offered Brachy, something else like chemo, not offered lets wait and see shall we.  I wanted it OUT OUT OUT, so, RRP 13 May 2013, after - p****d myself a bit, wore pads a bit until about September, no EF until July, now fully recovered.

 

Here is always here for anyone.  atb  dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 23 Oct 2017 at 08:06

It's the cribriform pattern that is significant, Palerider. A G3 with cribriform is upgraded to a 4 because of its aggressiveness and the likelihood of spread later so although you are a 3+4 you will be treated as if you are a 4+4.

That is probably why you are unsuitable for AS or brachy . Cribriform cancer needs to be treated as radically as possible and without unnecessary delays.

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

User
Posted 25 Oct 2017 at 07:58

Hi Grant,

Best wishes for tomorrow. Hope you have someone going with you.. it helps to have a second pair of ears and a list of questions written down as it's so easy to forget to ask as well as forget what was said..

So pen, paper, questions written down and someone with you is my advise.

Kind Regards

Clare

User
Posted 03 Nov 2017 at 23:51

Hi Grant,

Our profiles are similar. I’m 61, divorced, self-employed, PSA 9.6, up from 5, 1 year earlier. Gleason 4+3. Second lesion, 3+4 the other side, picked up by pathologist on last minute checking MRI scans, prior to forwarding to Urologist. And liver problems. Diagnosed spring 2017.

I remember separation as being extremely tough, with PC diagnosis as well I would be getting as much good support as possible.

I was lucky that the hospital had a Maggie’s attached and they are brilliant, supportive and informative. If you can get to one, they can provide support and support from sharing with others patients. Where are you located?

Specialist nurses on PCUK and Cancer Research are helpful.

The Urologist recommended EBRT and HT rather than surgery, which he would have performed, because of fewer complications later. Mine localised so am told it is curative.

IIRC PACE trial is without HT, which has proven benefits with RT.  I was offered PACE too but declined because of this.

Just completed 20 sessions RT, and worst bit was the travelling, a bit of diahorrea (which I can spell now) and wind, managed with Loperamide Hyd. The bit about the spelling is not quite true.

Nearing the end of 2nd 3 month implant of Zoladex HT. Few side effects, but small price to pay.

1 week into RT and halfway thro' HT the nurse told me my PSA was then down to 0.16.

I have that slip of paper taped to my wall.

Good luck and keep posting.

Graham

Edited by member 04 Nov 2017 at 00:26  | Reason: Not specified

User
Posted 11 Nov 2017 at 09:57

Hi Graham,

Thanks for your supportive post. My separation has been harder to deal with at this time than the PCa. The diagnosis came after the separation, so I did feel punchdrunk and very isolated. I have good friends and 2 sons, who have been good, but not always taking in all of the issues. At the moment I am cycling 600km in Myanmar for an architectural charity, Article 25. 

I am opting for Cyberknife treatment, rather than hormone and RT. The specialist does want to give me a course of hormones for a month prior to the Cyberknife, which will reduce testosterone production, with less side effects. I haven't got all the information to hand. as I am writing this in a hotel room after a long dusty 80km in the saddle today.

I'm based in the City, and I think the nearest Maggie's Centre is at Hammersmith, though I have found the  curse assigned to me from Bart's to be very helpful and understanding.

Pale Rider.

 

 

User
Posted 11 Nov 2017 at 19:19

Hi Grant,

That's a real adventure. My post template biopsied perineum did wince at the thought of 600 km in the saddle, tho’ I did use to cycle-commute when I was in practice for J+W.

I was in Maggies, Hammersmith, Wednesday and was given a card with the details of the opening, 11th Dec, of Maggie’s at Barts, by Steven Holl, link below:

https://www.maggiescentres.org/our-centres/london-campaign/maggies-barts/

Going off topic a bit, but I just checked your route and when you head north it looks like you are travelling near some of the places my Dad ‘visited,’ 1st April, 1944 for 5 months. I wonder if you are passing through any of these areas: Manhton (1 km south of airstrip ‘Aberdeen’), Gahe SE of Indaw, Mawlu, Kamaing, Mogaung 'Railway Valley', Mawlu, Indawgyi Lake, and Myitkyina.

Have a great trip.

Graham

User
Posted 13 Nov 2017 at 09:18

Hi Graham,

None of those place names are familiar. We have due east and a little south of Mandalay, to Monywa, Began, Mt. Papa, Meikhtila, Kalaw and we are now near the shores of Inle Lake in a town called Pin Laung. 

I have posted a lot of pics on my instagram account, grantcsmith.

Thanks for the link, I hadn't realised Steven Hall had designed a Maggie's Centre.

I know J+W quite well, well I know Tom J, and Heinz has become a really good friend after our cycle ride across the US 4 years ago. 

Best wishes,

Pale Rider

 

 

 

User
Posted 14 Nov 2017 at 04:51

Hi Grant,

Great instagram photos !

I saw the Article 25 website route video which routed N to Lake Indaw region.

The author George MacDonald Fraser, of Flashman fame was at Meikhtila.

Enjoy the trip.

Graham

User
Posted 25 Jan 2018 at 16:36

I have just finished 5 sessions of Cyberknife radiation therapy. I felt a huge relief and a sense of achievement when I walked out of the clinic yesterday afternoon. Although I won't know the success of the treatment until after an MRI in a few months time, I still left incredibly relieved. Side effects seem to be minimal; from the Bicalutamide, sore and tender breasts and significant loss of libido , but I have now finished the course of tablets. From the radiation therapy; today I have felt like I needed bowel motions every couple of hours, then very loose with lots of mucus, a marked decrease in flow rate (I have been prescribed Tamsulosin) and a feeling that I can't empty my bladder fully. My testicles feel as though they have shrivelled, but I look in the mirror and they haven't. I do feel strangely tired and it has been difficult to get to sleep for a number of reasons, but the tiredness is not one I have ever experienced. I can best describe it as general exhaustion, fuelled by anxiety as my body has changed. I felt this in the shower this morning; my body felt different but I don't know how. Perhaps I am anticipating the change that may take effect regarding my sexual drive, my identity as a man, my uncertain future and missing my life partner and not having her to talk to about the range of emotions I have experienced.

I check this forum every other day and I have found this to be a great source of knowledge and a good platform to share experiences, and to be able to offer something to other users. In addition the clinic that treated me and the specialists I have seen have been fantastic. I have used the Maggie's Centre at Bart's, which is in a sublime building, a bamboo interior wrapped in concrete and the concrete enveloped by glass. It is a very comforting and relaxing space. Go and visit this centre for its architectural merit as well as the very helpful and understanding staff.

I am more than halfway through a journey I never expected to take, less 4 months ago I knew very little of the disease, nor the treatments, nor the language and terms that are used in the treatment of cancer.

This part of the process has taken place so quickly, and I hope effectively, so I can start rebuilding my life.

Pale Rider

User
Posted 25 Jan 2018 at 16:57

Glad that's over for you Pale Rider.

Now it's time to sit back and allow your body to heal and the drugs to leave.

Not only are you tired from the drugs and cyberknife you have to face the "anti-climax" (no pun whatever intended) of it all being over. Your mind will now dwell on the what haves and the might have beens.

If you are not sleeping (for whatever reason) then your body will be slow to heal itself.

I hope you can learn to relax a little bit and have a bit of "me" time.

Best wishes for a speedy recovery

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2018 at 18:53
Hiya Palerider,

This is the first time I've seen your posts. Separation followed by PC diagnosis is a massive blow, particularly when we then have to research the subject along with the recovery roller coaster ride on which we unwilling embark. But, to take on your Myanmar trek at this particular juncture in your life is really impressive, an attitude that I believe will sustain you through your recovery. I wish you all the best. Just a quick point regarding anticipating changes to our bodies and minds post treatment. I'm certain this happens to quite a few men for the precise reasons you site. Talking and sharing your emotions is very cathartic,something I wholeheartedly advise, but strangely don't always practice. Take care.

Paul.

 
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