I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Is this the end of our business

User
Posted 30 Jul 2025 at 00:13

I attended consultation in April following diagnosis in mid January 2025.

asked for the numbers, went home and within minutes my wife and I had decided that I would spend the year trying lose weight and getting fitter for surgery in December.  I was led to believe that post op recovery would be two months and as a carpenter December and January are usually pretty rubbish work wise.  We wanted to take some control following PSA 2.8 in Sept 24, biopsy, sepsis & encephalitis, diagnosis Gleason 3+4 T2c.  AS through the year with quarterly PSA & consult, annual biopsy and MRI (due to age apparently).  It was likely that AS could go on for years but I did not fancy exposing myself to another infection, whatever may have caused it.

Fast forward to April, we went to consultation with a resolute plan - book me in for surgery first week of December please.  This was us taking control, until that is we were told about the latest PSA result.  3.2 This is a bit of a concern apparently.

From March 22 to March 24 my PSA fluctuated from 2.3 down to 1.8 and back to 2.3.  September 24 it reached 2.8.  That is whe;I asked my GP “When are we going to address the elephant in the prostate?”  MRI referral made and the consultant sounded quite dismissive due to my age.  PIRAD 4 and a phone call to book me in for biopsy.  April 2025 comes around and we find that PSA of 3.2 now throws our control out of the window. 

Pre-surgical MRI and assessments booked for August and if PSA has increased again then we are looking at expedited surgery.  Currently this is open to any time from August.  Control of my life is suspended until further notice.

 I can’t book any large projects this year , I am a carpenter in a bit of a niche market, and I cannot risk being caught in the middle of a project with no one to finish it.  Visions of a ‘head down, arse up’ type of year working hard to fill the bank account have also been hampered by fatigue, infection, anxiety and a not so favourable economy.  Smaller projects require significantly more work to get off the ground because every small project requires the same surveys, admin, meetings and costing exercises as a larger one.  Not to mention preparation, tool and equipment changeovers, multiple project prep running simultaneously and the joys of schedule changes.  Large projects still require managing but far less admin and behind the scenes preparation by comparison.

Two month recovery is in fact a firm and resolute ‘minimum of three months’ before I could expect to consider returning to light duties a couple of mornings a week.  That does not take into consideration the prospect of incontinence and all the joys that can bring for months while working in remote locations and peoples houses - even as a younger man - the likelihood of incontinence is a long way away from zero.  I work alone for 90% of the time and there is no reasonable way to change that right now.  We are considering changes to employment but we do not know enough to be able to action anything.  It is becoming apparent to me, that the business I have spent decades building is likely to be put into hibernation mode and may not survive as a result of treatment.  We could be in a scenario where surgery  before December will mean I lose up to three month earning potential before being in a position where I need to try to return to work with limited capacity in the hardest 2-3 months of the year, physically and financially.  6 months with no income is a very different story to the 2 months we expected.

Health comes first, it does.  But I would be remiss if I didn’t say that the prospect of sitting, watching my business burn away before my eyes, and unable to fix it the way I always have - getting the work done - is more of a plague on my mind than cancer itself.  Our business IS the food on our plates and the roof over our heads.  My skills are the business.

How does everyone else do it? I assume I am not the only one here who has been or is going through this dilemma.

User
Posted 30 Jul 2025 at 11:22

To answer your question directly, I suppose the majority of men of working age work for a company and receive paid leave. For those who are self-employed, they either have insurance cover to compensate for lost earnings, use savings or have to take out a loan. In your circumstances, have you considered the possibility of Brachytherapy, hypofractionated 5 fraction RT available at some hospitals or Focal Therapy as an alternative to surgery? You have to be suitable of course but only require tools to be downed for a very few days. Some men even manage to do some types of work while they are having radiation appointments or almost immediately after Focal Therapy, although the latter means they may have a catheter in place for a week or so. 

Take a look at this very good video from the beginning on diagnosis and treatment.  https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl

Edited by member 30 Jul 2025 at 11:34  | Reason: to show link

Barry
User
Posted 30 Jul 2025 at 17:54

Hi, 

Have you looked at any support pages.  Macmillan has this about self employment and cancer.  Employment Support Benefit seems to get a lot of mention in a search.

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/self-employment-and-cancer

I didn't find anything on Prostate Cancer UK.

I doubt you take long holidays but would you consider a long holiday.  Then how would it be if it was extended.  Surely when you've been building up a business your reputation doesn't disappear so quickly.  You might need to get into the swing with smaller jobs when you go back though. 

You might consider what is the best time for you to take time off and get an agreement with the surgeon about how flexible he can be.

Probably surgery is offered because you're a younger case and radiation can have longer term effects, but radiation is perhaps something to consider.

All the best, Peter

 

User
Posted 30 Jul 2025 at 23:11

Jamie, as an  electrical contracts manager I was back behind my desk after 5 weeks and travelling all over the UK after 7 weeks. Very little physical work was involved, perhaps unloading the odd lorry because guys were not on site. You don't want to compromise your recovery by doing to much. Is there any one you can trust to do the physical work, even if under close supervision. Niche sounds interesting. Profit margins my suffer but would it help keep the business ticking over. Repeat customers would probably be sympathetic to your situation,but I understand your reluctance to open the door for someone to get a foot into your business. 

I waited four months for the new robot to be built at our hospital, that may have been a mistake, but in hindsight I probably had the first signs of prostate issues 12 years before diagnosis with a PSA of 6.9.

Thanks Chris 

User
Posted 31 Jul 2025 at 14:07

Hi Jamie, I'm sorry to hear of your diagnosis. I was in a similar position of being a self employed contractor and after having paid into the system for 40 years found I was entitled to claim £0. I was lucky enough to have built up a small pension, which I took at 56 just to cover the household bills. Everyone is different but following my prostatectomy I don't think I could have worked in anyone's home for at least 4 or 5 months. It's OK when you are not straining to do anything, but bending, lifting etc would cause leakage. I wore pads etc and dark trousers just in case, but the concern is always there. Saying that you may have the surgery and be dry within a few weeks. Unfortunately, there's no straightforward answer to any of it and everyone is different. 

User
Posted 31 Jul 2025 at 23:14
Hi Jamie,

Your staging on the face of it makes you a candidate for Brachytherapy and as a treatment, that is the one that will most likely give you minimal downtime without compromising curative outcome (most people will literally be back at work in days although it maybe a few weeks before you want to start anything properly strenuous)

You can do your own research and find a Brachy specialist in your vicinity and/or then ask your GP for a referral to them.

Don't panic, 3+4 T2c and psa at 3.2 means you have time to look at all the options.

I made a long winded post a couple of days ago about Brachy v Rarp which you might find useful and of course my own story is in my profile.

https://community.prostatecanceruk.org/posts/t31857-Brachytherapy-vs-Surgery-suggestions

Good luck!

User
Posted 01 Aug 2025 at 18:14

Thank you all for your responses.

Treatment - It has been presented to me that were two choices AS followed by surgery or straight to surgery.  Opted for AS for one year to prep body and bank for December surgery (less work for me then).  Most recent PSA suggests a need to bring surgery forward of December.  When discussing other options, it appears they carry a significant risk of compromising any surgery options later if required but also cause more cancers later in life.  Being younger, arguably more sunrises left than the typical PCa patient, this is a concern for both myself and the medical team.

Financial support - PIP appears to a possible option due to issues running alongside PCa.  Company Directors are treated differently to self employed or employed persons.  I am between the two.  I could get state benefit if I first ensure our business pays SSP for 28 weeks.  But that requires I am at work with enough funds to put that in before surgery. We have personal savings but they are tied directly to payment plans with mortgage etc.  

Incontinence in peoples homes and small businesses working out of a van in all weathers is not a prospect I am keen on.  Working alone means that material and tool bag need to be moved by me up ladders, stairs, roofs etc. and put away at the end of the day. For those of you who employed - taking someone on is bloody expensive and the work I do requires a specific set of skills and knowledge not commonly available.

I think I know the answers to it all if I am brutally honest with myself, I am hoping for some wonderful solution that does not reasonably exist.  I am not depressed or anxious just gradually coming to terms with the consequences of PCa.  PCa doesn’t bother me at all - it is everything and everyone around it that sucks.

I am watching links and liaising with MacMillan Financial Support team.  Also quite clear on the needs of me and my wife, to get this cancer crap gone and get on with living life.

Thank you again for feedback and as welcome more, just don’t get so much time to respond individually on the daily. 

I wish you all well on your own journeys and am grateful for a platform place to explore so many aspects of this condition.

User
Posted 01 Aug 2025 at 22:23

There are usually several options for treatment with exactly equal chance of long term remission, in that case the only decision is, which has the more manageable side effects for my lifestyle? In your case surgery may be the best chance of long term remission, but it sounds like the side effects have a high risk of destroying your earning potential so you may be better going for brachytherapy, with a slightly higher chance of an early death, but much higher chance of you being able to stay in business.

Your consultant may be basing his advice on the best chance of keeping you alive, without realising that your life circumstances are completely different to the over 60s he is usually treating.

Originally Posted by: Online Community Member

...  Also quite clear on the needs of me and my wife, to get this cancer crap gone and get on with living life...

That is a completely unrealistic expectation. 30% will have recurrence, and about 60% will have adverse side effects. Only about 20% are likely to consider "the cancer crap gone", though it is true 100% can get on with living life, until they die.

Dave

Show Most Thanked Posts
User
Posted 30 Jul 2025 at 11:22

To answer your question directly, I suppose the majority of men of working age work for a company and receive paid leave. For those who are self-employed, they either have insurance cover to compensate for lost earnings, use savings or have to take out a loan. In your circumstances, have you considered the possibility of Brachytherapy, hypofractionated 5 fraction RT available at some hospitals or Focal Therapy as an alternative to surgery? You have to be suitable of course but only require tools to be downed for a very few days. Some men even manage to do some types of work while they are having radiation appointments or almost immediately after Focal Therapy, although the latter means they may have a catheter in place for a week or so. 

Take a look at this very good video from the beginning on diagnosis and treatment.  https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl

Edited by member 30 Jul 2025 at 11:34  | Reason: to show link

Barry
User
Posted 30 Jul 2025 at 17:54

Hi, 

Have you looked at any support pages.  Macmillan has this about self employment and cancer.  Employment Support Benefit seems to get a lot of mention in a search.

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/self-employment-and-cancer

I didn't find anything on Prostate Cancer UK.

I doubt you take long holidays but would you consider a long holiday.  Then how would it be if it was extended.  Surely when you've been building up a business your reputation doesn't disappear so quickly.  You might need to get into the swing with smaller jobs when you go back though. 

You might consider what is the best time for you to take time off and get an agreement with the surgeon about how flexible he can be.

Probably surgery is offered because you're a younger case and radiation can have longer term effects, but radiation is perhaps something to consider.

All the best, Peter

 

User
Posted 30 Jul 2025 at 23:11

Jamie, as an  electrical contracts manager I was back behind my desk after 5 weeks and travelling all over the UK after 7 weeks. Very little physical work was involved, perhaps unloading the odd lorry because guys were not on site. You don't want to compromise your recovery by doing to much. Is there any one you can trust to do the physical work, even if under close supervision. Niche sounds interesting. Profit margins my suffer but would it help keep the business ticking over. Repeat customers would probably be sympathetic to your situation,but I understand your reluctance to open the door for someone to get a foot into your business. 

I waited four months for the new robot to be built at our hospital, that may have been a mistake, but in hindsight I probably had the first signs of prostate issues 12 years before diagnosis with a PSA of 6.9.

Thanks Chris 

User
Posted 31 Jul 2025 at 00:36
One further point for consideration. A very significant number of men who opt for surgery find that all the cancer could not be removed and then require salvage RT. Should this happen in your case, you will be impacted by down time, inconvenience and potential side effects of both forms of treatment. Some men decide rather than risk this they will go for a form of RT initially rather than opt for surgery, Focal Treatment being another possibility for suitable men.
Barry
User
Posted 31 Jul 2025 at 14:07

Hi Jamie, I'm sorry to hear of your diagnosis. I was in a similar position of being a self employed contractor and after having paid into the system for 40 years found I was entitled to claim £0. I was lucky enough to have built up a small pension, which I took at 56 just to cover the household bills. Everyone is different but following my prostatectomy I don't think I could have worked in anyone's home for at least 4 or 5 months. It's OK when you are not straining to do anything, but bending, lifting etc would cause leakage. I wore pads etc and dark trousers just in case, but the concern is always there. Saying that you may have the surgery and be dry within a few weeks. Unfortunately, there's no straightforward answer to any of it and everyone is different. 

User
Posted 31 Jul 2025 at 23:14
Hi Jamie,

Your staging on the face of it makes you a candidate for Brachytherapy and as a treatment, that is the one that will most likely give you minimal downtime without compromising curative outcome (most people will literally be back at work in days although it maybe a few weeks before you want to start anything properly strenuous)

You can do your own research and find a Brachy specialist in your vicinity and/or then ask your GP for a referral to them.

Don't panic, 3+4 T2c and psa at 3.2 means you have time to look at all the options.

I made a long winded post a couple of days ago about Brachy v Rarp which you might find useful and of course my own story is in my profile.

https://community.prostatecanceruk.org/posts/t31857-Brachytherapy-vs-Surgery-suggestions

Good luck!

User
Posted 01 Aug 2025 at 18:14

Thank you all for your responses.

Treatment - It has been presented to me that were two choices AS followed by surgery or straight to surgery.  Opted for AS for one year to prep body and bank for December surgery (less work for me then).  Most recent PSA suggests a need to bring surgery forward of December.  When discussing other options, it appears they carry a significant risk of compromising any surgery options later if required but also cause more cancers later in life.  Being younger, arguably more sunrises left than the typical PCa patient, this is a concern for both myself and the medical team.

Financial support - PIP appears to a possible option due to issues running alongside PCa.  Company Directors are treated differently to self employed or employed persons.  I am between the two.  I could get state benefit if I first ensure our business pays SSP for 28 weeks.  But that requires I am at work with enough funds to put that in before surgery. We have personal savings but they are tied directly to payment plans with mortgage etc.  

Incontinence in peoples homes and small businesses working out of a van in all weathers is not a prospect I am keen on.  Working alone means that material and tool bag need to be moved by me up ladders, stairs, roofs etc. and put away at the end of the day. For those of you who employed - taking someone on is bloody expensive and the work I do requires a specific set of skills and knowledge not commonly available.

I think I know the answers to it all if I am brutally honest with myself, I am hoping for some wonderful solution that does not reasonably exist.  I am not depressed or anxious just gradually coming to terms with the consequences of PCa.  PCa doesn’t bother me at all - it is everything and everyone around it that sucks.

I am watching links and liaising with MacMillan Financial Support team.  Also quite clear on the needs of me and my wife, to get this cancer crap gone and get on with living life.

Thank you again for feedback and as welcome more, just don’t get so much time to respond individually on the daily. 

I wish you all well on your own journeys and am grateful for a platform place to explore so many aspects of this condition.

User
Posted 01 Aug 2025 at 22:23

There are usually several options for treatment with exactly equal chance of long term remission, in that case the only decision is, which has the more manageable side effects for my lifestyle? In your case surgery may be the best chance of long term remission, but it sounds like the side effects have a high risk of destroying your earning potential so you may be better going for brachytherapy, with a slightly higher chance of an early death, but much higher chance of you being able to stay in business.

Your consultant may be basing his advice on the best chance of keeping you alive, without realising that your life circumstances are completely different to the over 60s he is usually treating.

Originally Posted by: Online Community Member

...  Also quite clear on the needs of me and my wife, to get this cancer crap gone and get on with living life...

That is a completely unrealistic expectation. 30% will have recurrence, and about 60% will have adverse side effects. Only about 20% are likely to consider "the cancer crap gone", though it is true 100% can get on with living life, until they die.

Dave

User
Posted 01 Aug 2025 at 23:36
I am sure we all hope everything goes as well as expected and that your business survives this setback. I would not presume to influence you but there are a few things I would like to point out. Often, a man sees only a Urologist who instinctively favours surgery which may coincide with a man's gut feeling. It does make sense to additionally discuss your case with an Oncologist and even a Focal Therapist before making a decision. (We had a thread on here not so long ago on men that had regretted their treatment choice as some have regardless of their treatment). Surgery after radiation is more challenging but some surgeons do it. As regards RT causing other cancers in 20 years or whatever, the chances of this happening are very small. There is also a risk of seeding as the robot arms are withdrawn with Prostatectomy. Surgery is more likely to result in short or long-term incontinence, and immediate partial or longer term Erectile Dysfunction than RT. Also, after surgery you are very restricted in what you can lift or do for about 10 weeks which is something you wish to avoid. Surgery can be a very good solution for some men but about a third require salvage radiation so suffer downtime and potential side effects of both treatments.
Barry
 
Forum Jump  
©2025 Prostate Cancer UK