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A Gleason 4 + 3 story for the newly diagnosed/awaiting diagnosis...

User
Posted 15 Jan 2022 at 11:34

I just wanted to post something here for those that have just been diagnosed. I'm the wife of a man with prostate cancer and I can only describe what we've been through in the last few months as an "ordeal". I feel like we were swept up completely by surprise by a hurricane, which took us up inside for 5 months and has just spat us out. Here are my thoughts from the eye of the storm and our story...

My OH is 56 and completely fit and healthy. He had absolutely no symptoms of prostate cancer whatsoever. It was only when a locum doctor suggested he have a PSA test that this whole nightmare started. At first my OH didn't want one as he'd read that raised levels of PSA can often cause worry and he worries a  bit anyway so he politely told the doc "no thanks". However, after a few months of worrying 🤣 he thought he should probably have one. It was strange because as I say, he had no symptoms at all. It's one of those moments in life that seem almost celestial and in hindsight one I am extremely grateful for. 

1st PSA comes back in June 2021  from the docs at 4.6

2nd PSA comes back in July 2021 at 4.61

MRI scan arranged for start of September. At that point, because the PSA was only slightly raised we thought it was all routine and everything was OK. 

MRI showed PI-RADS 5. At this point we had no idea what PI-RADS 5 even meant! It was just on the letter and we presumed it was just some medical terminology. It was only when my husband received a letter telling him to go for a biopsy that it all became very "real". Of course he didn't want to go for one and hated the thought of someone sticking a needle down there and he was scared of the potential impact on erectile function etc. So he thought he wasn't going to have one. It was only when I rang the nurses on the Specialist PC Helpline here that things became clear for us. The helpline nurse asked us what the letter said about the scan results and as soon as we mentioned "PI-RADS 5" she said that cancer was "highly likely". That was the watershed moment for us, the point when life for the next few months was completely turned upside down.

We both dealt with it very differently. I was like a wailing banshee, crying around the house, beside myself and my husband went quiet. That period of time was one of the worst in my life. It was the not knowing which was the hardest part. We had no idea how extensive or aggressive the cancer was. We have a little boy and the thought of him without a daddy made me feel sick every day. I was beside myself every day. We couldn't really look at treatment options because he hadn't been fully diagnosed, so we had to wait for the biopsy... for 5 long weeks. The day before the biopsy was due, we received a phone call to tell us that the biopsy machine had broken so the biopsy would be delayed. At this point I lost the plot and rang around several different places to make sure the biopsy could go ahead. Even our GP told us it's the people that shout loud enough that makes stuff get done. He finally got a biopsy a week later, when they cobbled together two different machines to carry out the template biopsy. 

According to the NHS Faster Diagnosis Standard, Cancer diagnosis from urgent referral to diagnosis should be no longer than 28 days. By the time my husband was diagnosed it had been 63 days. He was diagnosed with Gleason 4 + 3 and given two treatment options: Radiotherapy or surgery, both with curative intent.

In many ways this is what we had been waiting for and strangely it was a relief to receive the news we had been suspecting for the last two months. Now we could finally get on with doing something about it! My husband dealt with the news by sitting by the fire and drinking red wine. I dealt with it by researching like I have never researched before! I read scholarly articles, looked into the best surgeons, analysed their data, looked at the data by Trust, compared outcomes etc. It was exhausting! I looked into the Neurosafe Procedure, the Retzius Sparing Technique, the Martini Clinic in Germany. I looked into NHS vs private treatment. I'm not a supporter of the private healthcare system but I was desperate and wanted my husband to have the best treatment. I think "desperate" is the best word to describe how I was feeling at the time. This forum was a great source of support for me along the way. Other members came forward to answer my questions, despite them undoubtedly  being posted on here hundreds of times before! Sorry about that! 🤣 All the people who responded were great and gave me really good advice and tips, all the better because they had actually lived it and been through it themselves. I felt like I wasn't alone. My husband knows that I am very good at researching and left it all to me. He was happy with this because he didn't want to stress himself out too much, so it allowed me to throw all my energies into research and feedback to him with the important bits so he could make his decision.

From the very start he said he didn't want Radiotherapy as he didn't like the idea of putting hormones and chemicals in his body. Also the timing wouldn't have worked well for him with his work and he didn't want to have to go for treatment every day for a prolonged period. So that bit was relatively easy for us. Choosing a surgeon wasn't. That was probably the biggest dilemma for us. We're based in the North West and our personal experience of our Trust had not been great. Not to mention the 63 day wait for diagnosis, during that time, a damning report was published on the Trust's Urology Department which said it had let down more than 520 patients who had received "actual or potential harm". So we knew we didn't want surgery within our local trust. It was a real dilemma where to ask to be referred. (In case you don't know you can ask to be treated by any Trust within the NHS under the Patient Choice scheme.) A lot of people on the forum spoke about "theprofessorwhocannotbenamed" and there was a big emphasis on the bigger high volume surgeons in London, many of them who also have private practice. We didn't know whether to save up, get money from family and throw all our money and go private in London. We didn't know whether to ask to be referred on the NHS to somewhere like The Royal Marsden. Again, the word is "desperate". London is a 5 hour drive away from us so it really was a dilemma and would have involved staying down there for around a week either side of the operation, then there was the thought of the post op journey back. In the end, we decided to stay up north and get treatment by a high volume surgeon at Christies, which is about an hour and a half away from where we live.

My husband was seen by the surgeon on 11 November 2021. He had RARP surgery on 8 Dec 2021. 

He had some complications post op which saw him go into retention, but on the whole he's been great. No incontinence whatsoever, still early days on the ED front. Scars healing nicely, up and about after 5 days and now 6 weeks post op doing really well.

He just had his first post op appointment and histology yesterday and it's good news! The surgeon managed to remove all the cancer with negative margins! Gleason was 3 + 4 (or 4 + 3) he said it could be switched around. 50% of the tumour (which was around 2cm wide) was Grade 4. Obviously my husband still has to have further check ups etc but it feels a bit like we're out the eye of the storm and out the other side! 

I feel so sorry for anyone on this journey, having to go through what we did. I know first hand how awful it is. 

Knowing what I know now, this is the advice I'd give to anyone who has just been diagnosed/awaiting diagnosis...

1. You're stronger than you think

2. You will get through this and this feeling is not forever

3. The bit between scan/biopsy and diagnosis is the hardest part

4. In terms of treatment, there are no right answers, there is no "best" surgeon. Everyone will have a pathway that is right for them.

5. Do your research and if you're unsure, ask people on the forum for real life experience

6. Don't be frightened to stick up for yourself or ask questions. Don't just accept what you are offered if you want something else.

I hope this post might be useful for anyone on here newly diagnosed and not being able to see the wood for the trees. It IS a living hell when you get diagnosed with Prostate Cancer, for the man and also their partner. But you can and you will get through it. 

Much love to all of you out there! If anyone wants to PM me for advice then please feel free. I am far from an expert but if I can help in any way, like the other members of this forum have helped me, I would be pleased to do so.

Thank you to everyone on this forum for creating such a positive supportive community 🙏

 

User
Posted 15 Jan 2022 at 11:34

I just wanted to post something here for those that have just been diagnosed. I'm the wife of a man with prostate cancer and I can only describe what we've been through in the last few months as an "ordeal". I feel like we were swept up completely by surprise by a hurricane, which took us up inside for 5 months and has just spat us out. Here are my thoughts from the eye of the storm and our story...

My OH is 56 and completely fit and healthy. He had absolutely no symptoms of prostate cancer whatsoever. It was only when a locum doctor suggested he have a PSA test that this whole nightmare started. At first my OH didn't want one as he'd read that raised levels of PSA can often cause worry and he worries a  bit anyway so he politely told the doc "no thanks". However, after a few months of worrying 🤣 he thought he should probably have one. It was strange because as I say, he had no symptoms at all. It's one of those moments in life that seem almost celestial and in hindsight one I am extremely grateful for. 

1st PSA comes back in June 2021  from the docs at 4.6

2nd PSA comes back in July 2021 at 4.61

MRI scan arranged for start of September. At that point, because the PSA was only slightly raised we thought it was all routine and everything was OK. 

MRI showed PI-RADS 5. At this point we had no idea what PI-RADS 5 even meant! It was just on the letter and we presumed it was just some medical terminology. It was only when my husband received a letter telling him to go for a biopsy that it all became very "real". Of course he didn't want to go for one and hated the thought of someone sticking a needle down there and he was scared of the potential impact on erectile function etc. So he thought he wasn't going to have one. It was only when I rang the nurses on the Specialist PC Helpline here that things became clear for us. The helpline nurse asked us what the letter said about the scan results and as soon as we mentioned "PI-RADS 5" she said that cancer was "highly likely". That was the watershed moment for us, the point when life for the next few months was completely turned upside down.

We both dealt with it very differently. I was like a wailing banshee, crying around the house, beside myself and my husband went quiet. That period of time was one of the worst in my life. It was the not knowing which was the hardest part. We had no idea how extensive or aggressive the cancer was. We have a little boy and the thought of him without a daddy made me feel sick every day. I was beside myself every day. We couldn't really look at treatment options because he hadn't been fully diagnosed, so we had to wait for the biopsy... for 5 long weeks. The day before the biopsy was due, we received a phone call to tell us that the biopsy machine had broken so the biopsy would be delayed. At this point I lost the plot and rang around several different places to make sure the biopsy could go ahead. Even our GP told us it's the people that shout loud enough that makes stuff get done. He finally got a biopsy a week later, when they cobbled together two different machines to carry out the template biopsy. 

According to the NHS Faster Diagnosis Standard, Cancer diagnosis from urgent referral to diagnosis should be no longer than 28 days. By the time my husband was diagnosed it had been 63 days. He was diagnosed with Gleason 4 + 3 and given two treatment options: Radiotherapy or surgery, both with curative intent.

In many ways this is what we had been waiting for and strangely it was a relief to receive the news we had been suspecting for the last two months. Now we could finally get on with doing something about it! My husband dealt with the news by sitting by the fire and drinking red wine. I dealt with it by researching like I have never researched before! I read scholarly articles, looked into the best surgeons, analysed their data, looked at the data by Trust, compared outcomes etc. It was exhausting! I looked into the Neurosafe Procedure, the Retzius Sparing Technique, the Martini Clinic in Germany. I looked into NHS vs private treatment. I'm not a supporter of the private healthcare system but I was desperate and wanted my husband to have the best treatment. I think "desperate" is the best word to describe how I was feeling at the time. This forum was a great source of support for me along the way. Other members came forward to answer my questions, despite them undoubtedly  being posted on here hundreds of times before! Sorry about that! 🤣 All the people who responded were great and gave me really good advice and tips, all the better because they had actually lived it and been through it themselves. I felt like I wasn't alone. My husband knows that I am very good at researching and left it all to me. He was happy with this because he didn't want to stress himself out too much, so it allowed me to throw all my energies into research and feedback to him with the important bits so he could make his decision.

From the very start he said he didn't want Radiotherapy as he didn't like the idea of putting hormones and chemicals in his body. Also the timing wouldn't have worked well for him with his work and he didn't want to have to go for treatment every day for a prolonged period. So that bit was relatively easy for us. Choosing a surgeon wasn't. That was probably the biggest dilemma for us. We're based in the North West and our personal experience of our Trust had not been great. Not to mention the 63 day wait for diagnosis, during that time, a damning report was published on the Trust's Urology Department which said it had let down more than 520 patients who had received "actual or potential harm". So we knew we didn't want surgery within our local trust. It was a real dilemma where to ask to be referred. (In case you don't know you can ask to be treated by any Trust within the NHS under the Patient Choice scheme.) A lot of people on the forum spoke about "theprofessorwhocannotbenamed" and there was a big emphasis on the bigger high volume surgeons in London, many of them who also have private practice. We didn't know whether to save up, get money from family and throw all our money and go private in London. We didn't know whether to ask to be referred on the NHS to somewhere like The Royal Marsden. Again, the word is "desperate". London is a 5 hour drive away from us so it really was a dilemma and would have involved staying down there for around a week either side of the operation, then there was the thought of the post op journey back. In the end, we decided to stay up north and get treatment by a high volume surgeon at Christies, which is about an hour and a half away from where we live.

My husband was seen by the surgeon on 11 November 2021. He had RARP surgery on 8 Dec 2021. 

He had some complications post op which saw him go into retention, but on the whole he's been great. No incontinence whatsoever, still early days on the ED front. Scars healing nicely, up and about after 5 days and now 6 weeks post op doing really well.

He just had his first post op appointment and histology yesterday and it's good news! The surgeon managed to remove all the cancer with negative margins! Gleason was 3 + 4 (or 4 + 3) he said it could be switched around. 50% of the tumour (which was around 2cm wide) was Grade 4. Obviously my husband still has to have further check ups etc but it feels a bit like we're out the eye of the storm and out the other side! 

I feel so sorry for anyone on this journey, having to go through what we did. I know first hand how awful it is. 

Knowing what I know now, this is the advice I'd give to anyone who has just been diagnosed/awaiting diagnosis...

1. You're stronger than you think

2. You will get through this and this feeling is not forever

3. The bit between scan/biopsy and diagnosis is the hardest part

4. In terms of treatment, there are no right answers, there is no "best" surgeon. Everyone will have a pathway that is right for them.

5. Do your research and if you're unsure, ask people on the forum for real life experience

6. Don't be frightened to stick up for yourself or ask questions. Don't just accept what you are offered if you want something else.

I hope this post might be useful for anyone on here newly diagnosed and not being able to see the wood for the trees. It IS a living hell when you get diagnosed with Prostate Cancer, for the man and also their partner. But you can and you will get through it. 

Much love to all of you out there! If anyone wants to PM me for advice then please feel free. I am far from an expert but if I can help in any way, like the other members of this forum have helped me, I would be pleased to do so.

Thank you to everyone on this forum for creating such a positive supportive community 🙏

 

User
Posted 15 Jan 2022 at 15:05

Thank you for the summary of your "journey". It is helpful to be reminded there is a way thru this madness, sometimes.

I had PSA tests this last summer too, followed by MRI and biopsy in September and given a Gleason 3+4 diagnosis in October. When offered the MRI I chose to push the science / investigations to see where it would lead to, as there was no over symptoms other than low urine flow at times. Surgery was mid November 21 and December post-op review was positive in confirming the cancer had been localised, with a PSA of 0.04 now. The Reading NHS trust was excellent thru-out the whole process which helped reduce the stress, all happening so quickly.  

Struggling with medium incontinence during the day and when active, but at just nine weeks it is early days, so I gather from this forum. Forthcoming physio  will help I hope. 

Every day in every way I am getting better..... so I keep telling myself

P.

Edited by member 15 Jan 2022 at 15:07  | Reason: Not specified

User
Posted 05 Apr 2022 at 00:54

Your husbands journey seems very similar, I was diagnosed the 23rd of September 2021 had biopsy in October the worst experience of my life and nearly passed out when I saw the needle I pray I never have to go through it again. 

My gleeson was 3+4 = 7, MRI and PET showed no spread. My life was on hold affected work, written my will, organised my pension and dusted and sorted all my financial holdings. 

Surgery on the 7th of January 2022 and luckily was referred to UCLH which gave a bit of comfort as they are world renowned and was Robotic surgey declined any radiation as I wanted the prostrate out also as from all investigation the cancer confined to the prostrate seemed my best option.

Lo and behold I caught COVID new years eve and operation delayed till 2nd of March 2022 longest 8 weeks of my life. The day came had the operation and today is 33 days after the op. Incontinence very very minimal ED an issue but I am relieved but as with anything cancer related my next challenge is PSA levels finger crossed. 

I wish you both the best and quite a relief writing this a challenge but decided to enjoy everyday as best as I can regardless of the situation.  My wife has been a rock kept it together, I have been all over the place but I have some peace now which I pray lasts. Decided can only take it a day at a time today has ended tomorrow another day. 

 

User
Posted 18 May 2022 at 00:21

Thank you for this post

I’m days away from biopsy results after PSAs of 28 and 30 in April 

What struck me most about your post is your empathy for your husband and fear for your son

My wife is bright, chirpy, and level-headed. I come from a family with a litany of tragic deaths, cancer, substance abuse, etc. My wife has never faced a single life hardship or tragedy. She is 52 and still has both parents. They’ll each make 85-90 with ease

So I’m doing a lot of hidden sobbing and occasional drinking because my wife is incapable of the kind of empathy this manhood-robbing, diaper/necessitating disease calls for

I don’t know if there’s somewhere between “banshee” and “breezy” that’s appropriate, but I could use a little banshee right now  It’s great to be level-headed but I’m married to someone who hasn’t had ten seconds of heartache in life and I’m going through this more or less alone

I have great friends but I’m refraining from leaning on them too much

Thank you for your post

Bill

 

Edited by member 18 May 2022 at 00:24  | Reason: Forgot to say thanks and sign off appropriately

User
Posted 18 May 2022 at 14:50

I turned 61 in March 

Apart from putting on some Covid and George Floyd weight (I cut back on walking at night in Manhattan after summer 2020 George Floyd riots) I am in good shape. I could walk 10 miles at 3.5 mph today

 

one thing I’ve withheld from prior posts - I have persistent pain in my upper left femur. I’ve assumed it was due to Covid weight gain. I fear bone cancer

Tomorrow I get my biopsy results and then I’ll open a proper thread/bio with all pertinent information in one place

User
Posted 19 May 2022 at 23:23

Bill please try not to panic. My husband also had really bad back time around the time of his diagnosis and he was convinced it had gone into his bones. We were both beside ourselves! But the scan showed no trace of bone mets. I know it's so hard to await the results but try not to think of the worst case scenario. Not long to wait now 🤞🤞🤞

User
Posted 15 Jan 2022 at 17:42

Aw good luck Elaine! Hope everything works out for you and Rob. Much love X

User
Posted 15 Jan 2022 at 17:50

Great result Pawmark! Being cancer free is the main thing eh and it’s still early days for incontinence. Hope you continue to improve. x

User
Posted 15 Jan 2022 at 19:16

Great write up and well done with the research.  Getting into Christies is a good outcome.   Diagnosis is one of the worst times and having it drawn out like that is torture.   Best of fortune, Peter

User
Posted 15 Jan 2022 at 19:40

Thanks Peter. Same to you. Hope your PSA remains undetectable and that the recent reading was just a blip x

Edited by member 15 Jan 2022 at 19:44  | Reason: Not specified

User
Posted 26 Mar 2022 at 12:27

Really helpful to have real people’s summaries with dates to show a timeline. Thank you for posting. 

User
Posted 26 Mar 2022 at 15:16
Really useful, we are day 4 post RALP X
User
Posted 26 Mar 2022 at 17:58

Good luck Janey. Hope it's all plain sailing in the next few weeks X

User
Posted 26 Mar 2022 at 18:29

Yes and you can also ask them to tell you who is the surgeon who will be carrying out the op. We asked and were told that even though other surgeons in training etc might help with some parts of the op, the main removal of the prostate and any nerve sparing procedures would be done by the surgeon we wanted it. We were told he prided himself on the result he got for patients and wouldn't let any of his students carry out any of the complicated/important stuff...

 

User
Posted 05 Apr 2022 at 08:15

So glad everything went well for you DCrew. And yes we’re the same, praying that the peace we have now lasts! It makes you really appreciate good health doesn’t it! Thanks very much for your well wishes and the same back to you and your wife. It’s a bloody ordeal isn’t it but somehow we get through it

best of luck for the future! 

User
Posted 03 May 2022 at 19:13
Dear RobotA

So glad its gone alright for you. Thank you for doing the write up as it's told me something I didn't know, namely the element of choice.

That said, I've not found the surgeon equivalent of 'Check a Trader' where I can easily find the operating & success rate of my surgeon.

Gordon

User
Posted 03 May 2022 at 19:27

DM me Gordon. I did loads of research and would be more than happy to pass it onto you. And there are websites where you can look at success rates and other stuff. 

User
Posted 03 May 2022 at 19:58

Dickie,

You can look up the success rate of your surgeon or hospital at:

https://www.baus.org.uk/patients/surgical_outcomes/default.aspx

Best wishes,

Chris

Edited by member 03 May 2022 at 20:18  | Reason: Not specified

User
Posted 18 May 2022 at 08:42

Hi Bill

its certainly an ordeal and we all deal with things differently. Can you have an open, frank and honest chat and share your fears? It will be tough for you both, but it’s so important and maybe having a good cry together (if that’s what needed). We did lots of crying. The waiting for results is the worst, it really just encompasses you. I hope when you get the results you will have a plan of attack that you can face head on together. Wishing you well. X

ps - maybe start a new thread so your posts don’t get lost x

User
Posted 18 May 2022 at 14:12

Thanks for your kind words and sound advice. I put all this out of my mind for a few days but then I read about people with my PSA and I fell into a deep funk. I fear bone cancer so much. I can handle prostate surgery and all that goes with it.  If I had a PSA of 10 or so I’d be calmer but 30 feels so ominous

My parents and my only sibling are long gone and I’d give my right arm for one hour with them right now. It’s fear plus the loneliness that’s weighing on me. 

Edited by member 18 May 2022 at 14:12  | Reason: Typos

User
Posted 19 May 2022 at 23:28

Hope all went ok at your appointment Bill.

Same as Arobot has said, my husband had been having aches in many places so I was convinced it was all over his bones and went into a bit of a meltdown. It turned out it wasn’t the case thankfully. I think we all imagine the absolute worst at this point and it’s usually not the case.

Best of luck 👍

User
Posted 20 May 2022 at 20:00

It has been a roller coaster wave of emotion for the past year and a half. In the December of 2020, my dear mother suffered a severe stroke. We ended up caring for her at home until she passed away in Sept 2021. At the same time, I was diagnosed with high blood pressure and was hospitalised for 2 days, my mother then passed away a few days after I was discharged. I saw video online, talking about PSA tests, never heard of it, so decided to speak to my surgery, I was in my mid 50s, never visit the GP, in over 20yrs, now I am booking a test for prostrate cancer. A few days later I get panicky call from my GP saying my PSA result was raised at 20.. I asked her what the acceptable level was she said under 2--3. Within 2 weeks, I was booked into my local hospital for Bone Scan, my sister-in-law a consultant in The Netherlands was aghast at the NHS protocol. 

Anyway that test came back negative. The next was an prostate MRI scan, that came back with a Tumour or something of concern, the next thing was a biopsy at Royal Free. The results sadly came back with a Gleeson score of 3+7 on a day that would have been my late mother's 82 birthday. 

The next thing was researching the options. From new to old, I saw an oncologist at Barnet General Hospital and was amazed to see you could pretty much chart your own path. She recommended surgery over everything, but I queried her about Hormone and RT, she OK fair enough, I can start you on the tablets straight away. It just did not sound right, from not knowing much about PC now charting my path. 

In February, I got a call from a consultant from UCLH, talking to me about Robotic surgery. I looked at the outcomes and I felt a bit too risky. So I enquired about the HIFU option, I was accepted on the programme, on the proviso I understook another biopsy on an area that was not sampled before. I was already by this time on a list for the robotic surgery alternative, naturally I had to come off and was put on the HIFU biopsy path. The results came out yes there was low grade cancer 3+3, this qualifies for active surveillance, and HIFU would treat the initial diagnosis. I asked the consultant what he would do in my shoes, he said owing to my age (mid 50s), he would go for surgery to remove the prostate, after 4mths I finally arrived yesterday for the robotic surgery. I was told my prostate size of 150, was huge. Thanks to the guys at UCLH, today is day1 of recovery.

Edited by member 20 May 2022 at 20:01  | Reason: Not specified

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User
Posted 15 Jan 2022 at 15:05

Thank you for the summary of your "journey". It is helpful to be reminded there is a way thru this madness, sometimes.

I had PSA tests this last summer too, followed by MRI and biopsy in September and given a Gleason 3+4 diagnosis in October. When offered the MRI I chose to push the science / investigations to see where it would lead to, as there was no over symptoms other than low urine flow at times. Surgery was mid November 21 and December post-op review was positive in confirming the cancer had been localised, with a PSA of 0.04 now. The Reading NHS trust was excellent thru-out the whole process which helped reduce the stress, all happening so quickly.  

Struggling with medium incontinence during the day and when active, but at just nine weeks it is early days, so I gather from this forum. Forthcoming physio  will help I hope. 

Every day in every way I am getting better..... so I keep telling myself

P.

Edited by member 15 Jan 2022 at 15:07  | Reason: Not specified

User
Posted 15 Jan 2022 at 17:36

Well that just got me going 🤦🏻‍♀️😩

I just read your post out to Rob and part way through I lost it 😢 just brings it all back of just how we felt in those early days. I genuinely (in the first 5 days) never thought I’d smile again! It is amazing how when you get some answers and your head around it a bit, things do change in a more positive way. Everything you have said is so true and I can completely relate to it.

As you know we’re in a similar position to you now, although we know there is a big chance more treatment will be needed we’re not going to worry about that until we’re told we have to. 

Looking forward to getting on with life now.

Wishing everyone out there all the very best with their journey too x

User
Posted 15 Jan 2022 at 17:42

Aw good luck Elaine! Hope everything works out for you and Rob. Much love X

User
Posted 15 Jan 2022 at 17:50

Great result Pawmark! Being cancer free is the main thing eh and it’s still early days for incontinence. Hope you continue to improve. x

User
Posted 15 Jan 2022 at 19:16

Great write up and well done with the research.  Getting into Christies is a good outcome.   Diagnosis is one of the worst times and having it drawn out like that is torture.   Best of fortune, Peter

User
Posted 15 Jan 2022 at 19:40

Thanks Peter. Same to you. Hope your PSA remains undetectable and that the recent reading was just a blip x

Edited by member 15 Jan 2022 at 19:44  | Reason: Not specified

User
Posted 26 Mar 2022 at 12:27

Really helpful to have real people’s summaries with dates to show a timeline. Thank you for posting. 

User
Posted 26 Mar 2022 at 15:16
Really useful, we are day 4 post RALP X
User
Posted 26 Mar 2022 at 16:03

Dear RobotA, glad everything went well and thank you for the information that my OH can choose his surgeon.  That is very useful to know.  Take care and all the best

User
Posted 26 Mar 2022 at 17:39

Originally Posted by: Online Community Member

Dear RobotA, glad everything went well and thank you for the information that my OH can choose his surgeon.  That is very useful to know.  Take care and all the best

You can usually choose your surgeon but it may not actually be them that does the op. 

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

User
Posted 26 Mar 2022 at 17:58

Good luck Janey. Hope it's all plain sailing in the next few weeks X

User
Posted 26 Mar 2022 at 17:58

Thanks Lyn. We made sure it was!!

User
Posted 26 Mar 2022 at 18:04

Dear LynnEyre, but at least one can choose a hospital where the surgical department has not had a down check from the Care Commission. 

User
Posted 26 Mar 2022 at 18:29

Yes and you can also ask them to tell you who is the surgeon who will be carrying out the op. We asked and were told that even though other surgeons in training etc might help with some parts of the op, the main removal of the prostate and any nerve sparing procedures would be done by the surgeon we wanted it. We were told he prided himself on the result he got for patients and wouldn't let any of his students carry out any of the complicated/important stuff...

 

User
Posted 05 Apr 2022 at 00:54

Your husbands journey seems very similar, I was diagnosed the 23rd of September 2021 had biopsy in October the worst experience of my life and nearly passed out when I saw the needle I pray I never have to go through it again. 

My gleeson was 3+4 = 7, MRI and PET showed no spread. My life was on hold affected work, written my will, organised my pension and dusted and sorted all my financial holdings. 

Surgery on the 7th of January 2022 and luckily was referred to UCLH which gave a bit of comfort as they are world renowned and was Robotic surgey declined any radiation as I wanted the prostrate out also as from all investigation the cancer confined to the prostrate seemed my best option.

Lo and behold I caught COVID new years eve and operation delayed till 2nd of March 2022 longest 8 weeks of my life. The day came had the operation and today is 33 days after the op. Incontinence very very minimal ED an issue but I am relieved but as with anything cancer related my next challenge is PSA levels finger crossed. 

I wish you both the best and quite a relief writing this a challenge but decided to enjoy everyday as best as I can regardless of the situation.  My wife has been a rock kept it together, I have been all over the place but I have some peace now which I pray lasts. Decided can only take it a day at a time today has ended tomorrow another day. 

 

User
Posted 05 Apr 2022 at 08:15

So glad everything went well for you DCrew. And yes we’re the same, praying that the peace we have now lasts! It makes you really appreciate good health doesn’t it! Thanks very much for your well wishes and the same back to you and your wife. It’s a bloody ordeal isn’t it but somehow we get through it

best of luck for the future! 

User
Posted 03 May 2022 at 19:13
Dear RobotA

So glad its gone alright for you. Thank you for doing the write up as it's told me something I didn't know, namely the element of choice.

That said, I've not found the surgeon equivalent of 'Check a Trader' where I can easily find the operating & success rate of my surgeon.

Gordon

User
Posted 03 May 2022 at 19:27

DM me Gordon. I did loads of research and would be more than happy to pass it onto you. And there are websites where you can look at success rates and other stuff. 

User
Posted 03 May 2022 at 19:58

Dickie,

You can look up the success rate of your surgeon or hospital at:

https://www.baus.org.uk/patients/surgical_outcomes/default.aspx

Best wishes,

Chris

Edited by member 03 May 2022 at 20:18  | Reason: Not specified

User
Posted 04 May 2022 at 02:45

Doesn't look like I can DM message yet, as I've not been on long enough.

User
Posted 04 May 2022 at 03:26

Thanks, Chris.

Interestingly my surgeon cannot be found via the BAUS 'Find a Surgeon' route yet comes up on BAUS using a Google search.

No outcomes data so there's a few more questions for my meeting with him.

On reflexion I wonder if I am being a bit premature on this. No saying the guy I'm seeing is the one doing the Op!

Edited by member 04 May 2022 at 03:40  | Reason: Further information found

User
Posted 04 May 2022 at 03:58

I had mine done in a private Hospital although surgeon has his GMC number. A BAUS registration not a must although would be nice to see outcomes of all their patients. 

User
Posted 18 May 2022 at 00:21

Thank you for this post

I’m days away from biopsy results after PSAs of 28 and 30 in April 

What struck me most about your post is your empathy for your husband and fear for your son

My wife is bright, chirpy, and level-headed. I come from a family with a litany of tragic deaths, cancer, substance abuse, etc. My wife has never faced a single life hardship or tragedy. She is 52 and still has both parents. They’ll each make 85-90 with ease

So I’m doing a lot of hidden sobbing and occasional drinking because my wife is incapable of the kind of empathy this manhood-robbing, diaper/necessitating disease calls for

I don’t know if there’s somewhere between “banshee” and “breezy” that’s appropriate, but I could use a little banshee right now  It’s great to be level-headed but I’m married to someone who hasn’t had ten seconds of heartache in life and I’m going through this more or less alone

I have great friends but I’m refraining from leaning on them too much

Thank you for your post

Bill

 

Edited by member 18 May 2022 at 00:24  | Reason: Forgot to say thanks and sign off appropriately

User
Posted 18 May 2022 at 08:42

Hi Bill

its certainly an ordeal and we all deal with things differently. Can you have an open, frank and honest chat and share your fears? It will be tough for you both, but it’s so important and maybe having a good cry together (if that’s what needed). We did lots of crying. The waiting for results is the worst, it really just encompasses you. I hope when you get the results you will have a plan of attack that you can face head on together. Wishing you well. X

ps - maybe start a new thread so your posts don’t get lost x

User
Posted 18 May 2022 at 09:39

Originally Posted by: Online Community Member

Thanks, Chris.

Interestingly my surgeon cannot be found via the BAUS 'Find a Surgeon' route yet comes up on BAUS using a Google search.

No outcomes data so there's a few more questions for my meeting with him.

On reflexion I wonder if I am being a bit premature on this. No saying the guy I'm seeing is the one doing the Op!

Sorry for not getting back sooner Dickie. I have only just seen your reply now. I certainly wouldn't have the op carried out by a surgeon who does not have RALP data on the BAUS website. I also found this list useful...

https://prostatematters.co.uk/treatments-for-in-capsule-diagnoses-t1-t2/where-to-access-robotic-prostatectomy/ 

and I cross checked with this list...

https://www.dailymail.co.uk/health/article-5808997/Meet-best-urologists-Britain.html

It's about weighing everything up like travel etc, what type of tumour yours is, whether you want retzius sparing etc. But remember you are entitled to choose the trust you are treated under and often can request the specific surgeon (we did). It's worth taking some time to look at what might be right for you. It's quite a complex procedure and from what I've read, a lot of the side effects regarding erectile and urinary function post surgery are down to the skill of the surgeon.

Have done so much research on this. I'm here if you need me. I think if you do a few more posts you should be able to DM.

Best of luck with everything!

User
Posted 18 May 2022 at 09:51

Originally Posted by: Online Community Member

Thank you for this post

I’m days away from biopsy results after PSAs of 28 and 30 in April 

What struck me most about your post is your empathy for your husband and fear for your son

My wife is bright, chirpy, and level-headed. I come from a family with a litany of tragic deaths, cancer, substance abuse, etc. My wife has never faced a single life hardship or tragedy. She is 52 and still has both parents. They’ll each make 85-90 with ease

So I’m doing a lot of hidden sobbing and occasional drinking because my wife is incapable of the kind of empathy this manhood-robbing, diaper/necessitating disease calls for

I don’t know if there’s somewhere between “banshee” and “breezy” that’s appropriate, but I could use a little banshee right now  It’s great to be level-headed but I’m married to someone who hasn’t had ten seconds of heartache in life and I’m going through this more or less alone

I have great friends but I’m refraining from leaning on them too much

Thank you for your post

Bill

 

Oh Bill I really feel for you. Take comfort that this is the worst time. I've heard many say on here that the period between biopsy and diagnosis is by far the most awful time and we certainly found that to be the case. Just playing Devil's Advocate, maybe your wife is just trying to be positive and strong for you? Maybe she is in denial and can't accept the fact that you might have cancer? Maybe she's taking the philosophy of "no news is good news" and it will really hit her if/when you are diagnosed. I don't think there is any right or wrong way of dealing with it. However, I would talk to your wife about how you are feeling. Tell her that you are scared and tearful and that you need her to be there for you as a support. Hopefully if you explain this to her, she might step up and be more supportive. It must be hard though when she had not shown the stress and upset that you are feeling. Talk it through with her. That would be my advice. And this is the worst time. Just try and hang on and get through it. Also just to say don't be too gloomy on the outcome. My husband was totally continent after surgery and although there's a way to go with  erectile function, we are still working on it and still manage to have a sex life! It's funny you really do have to get through the op and out the other side to look back and realise that it wasn't as bad as you thought. That's our experience anyway. It also helps to think positive. Yes everything might not be working 100% downstairs as it was but they removed my husband's tumour and my son has a daddy and the future is looking a lot brighter than if he had not had the op! 

Best of luck with it and myself and loads of others on here will be here to support you along the way

User
Posted 18 May 2022 at 14:00

Jayney - thank you. I will likely open a new thread some time after getting biopsy results tomorrow, 19 May

 

User
Posted 18 May 2022 at 14:07

Good luck Bill. Will be thinking of you! 🤞

User
Posted 18 May 2022 at 14:12

Thanks for your kind words and sound advice. I put all this out of my mind for a few days but then I read about people with my PSA and I fell into a deep funk. I fear bone cancer so much. I can handle prostate surgery and all that goes with it.  If I had a PSA of 10 or so I’d be calmer but 30 feels so ominous

My parents and my only sibling are long gone and I’d give my right arm for one hour with them right now. It’s fear plus the loneliness that’s weighing on me. 

Edited by member 18 May 2022 at 14:12  | Reason: Typos

User
Posted 18 May 2022 at 14:26

Ask others on here but I don't think 30 is so bad. It all depends on your age. Do you mind me asking how old you are?

Also sometimes people come back with PSA levels into their hundreds and thousands so try and think positive.

I would recommend speaking with the nurses at the help line. They were absolutely wonderful with us and calmed us down no end. Don't be frightened to talk it through with people. It might help make you feel better about things.

Wishing you all the luck in the world. We've all been there and it's awful. Hope everything goes well tomorrow. please keep us posted

User
Posted 18 May 2022 at 14:50

I turned 61 in March 

Apart from putting on some Covid and George Floyd weight (I cut back on walking at night in Manhattan after summer 2020 George Floyd riots) I am in good shape. I could walk 10 miles at 3.5 mph today

 

one thing I’ve withheld from prior posts - I have persistent pain in my upper left femur. I’ve assumed it was due to Covid weight gain. I fear bone cancer

Tomorrow I get my biopsy results and then I’ll open a proper thread/bio with all pertinent information in one place

User
Posted 19 May 2022 at 08:38

Thank you for your very honest and detailed story. We’re at the stage of deciding treatment plan for my husband - Gleason 4+3 T2. He’s leaning toward HT/RT, I was more inclined toward surgery but am supporting him in his decision so trying to get people’s experiences of HT/RT. Although your husband opted for surgery I found your story so helpful so thank you. We’ve got the consultant RT phoning us on  24th May to answer a few more questions before going ahead with his decision. It is such a roller coaster and like you I’ve been doing the research and feeding back to my husband. However if I give anything he considers negative about HT/RT he thinks I’m trying to put him off and gets cross but I really just want him to be fully aware. I’ve had a couple of positive responses from men who’ve had RT so makes me feel a bit better but I guess we won’t know the effect on him until he starts treatment as it can be such an individual experience. My main concern is he makes the right informed decision. Thanks again and best wishes for continued recovery/good health for your OH. 

User
Posted 19 May 2022 at 23:23

Bill please try not to panic. My husband also had really bad back time around the time of his diagnosis and he was convinced it had gone into his bones. We were both beside ourselves! But the scan showed no trace of bone mets. I know it's so hard to await the results but try not to think of the worst case scenario. Not long to wait now 🤞🤞🤞

User
Posted 19 May 2022 at 23:28

Hope all went ok at your appointment Bill.

Same as Arobot has said, my husband had been having aches in many places so I was convinced it was all over his bones and went into a bit of a meltdown. It turned out it wasn’t the case thankfully. I think we all imagine the absolute worst at this point and it’s usually not the case.

Best of luck 👍

User
Posted 19 May 2022 at 23:31

Originally Posted by: Online Community Member

Thank you for your very honest and detailed story. We’re at the stage of deciding treatment plan for my husband - Gleason 4+3 T2. He’s leaning toward HT/RT, I was more inclined toward surgery but am supporting him in his decision so trying to get people’s experiences of HT/RT. Although your husband opted for surgery I found your story so helpful so thank you. We’ve got the consultant RT phoning us on  24th May to answer a few more questions before going ahead with his decision. It is such a roller coaster and like you I’ve been doing the research and feeding back to my husband. However if I give anything he considers negative about HT/RT he thinks I’m trying to put him off and gets cross but I really just want him to be fully aware. I’ve had a couple of positive responses from men who’ve had RT so makes me feel a bit better but I guess we won’t know the effect on him until he starts treatment as it can be such an individual experience. My main concern is he makes the right informed decision. Thanks again and best wishes for continued recovery/good health for your OH. 

I'm glad you found it useful JHope. What a predicament eh! Not easy to decide at all! I think both have similar outcomes but remember some men go for the RT because surgery would not be a viable option for them as the cancer has burst through the prostate, worth considering. I had heard that a radical prostatectomy was usually the recommended route as if you have surgery, you can then later have RT if it returns. However, if you have RT and the cancer returns, it is very difficult to carry out surgery to remove it as the prostate has been badly damaged by the RT. Certainly best to ask the men on here about how they found RT. Everyone has different priorities don't they? Maybe ask your husband why he is swaying more to RT. It might turn out that he is apprehensive of the surgery or something else. All I know is that everyone here has been through it all in some shape or form so don't be frightened to ask questions and find out other people's experiences. You can always do this on behalf of your hubby if he's too shy to come on here. That's what I did! And there's no right or wrong route. Only the right route for your hubby. Really hope it goes well for you X

User
Posted 20 May 2022 at 00:45

RT here and happy with the result. No serious side effects (ED is a work in progress), not died of cancer yet but let's be honest it's only if you die of something else when you can say you were definitely cured.

The problem with anecdotal stories on this forum, is that 40,000 are diagnosed each year with PCa but this forum gains only about 100 active members a year, and most join because they have a problem, so we are not a representative sample.

When people first hear they have cancer they are nearly always pro surgery. Some then find that for clinical reasons surgery is not possible so they revert to RT. I was in this group, but now with hindsight I am glad I had RT. The possible side effects of surgery are very unpleasant (but moderately rare) and as it fails 30% of the time people are suffering these side effects needlessly.

The reason people want surgery is because they do not know how radiation works, but they do know how a knife works. So they choose what they understand.

One advantage of surgery is that they can examine the prostate after and see how severe the cancer is. The cancer is often upgraded post surgery, which is really bad news as it means it would have probably been better treated by radiation in the first place as this is better suited to more extensive cancer.

So if your hubby is happy with the RT/HT route I wouldn't be mentioning surgery unless you can find a very good reason.

Dave

User
Posted 20 May 2022 at 20:00

It has been a roller coaster wave of emotion for the past year and a half. In the December of 2020, my dear mother suffered a severe stroke. We ended up caring for her at home until she passed away in Sept 2021. At the same time, I was diagnosed with high blood pressure and was hospitalised for 2 days, my mother then passed away a few days after I was discharged. I saw video online, talking about PSA tests, never heard of it, so decided to speak to my surgery, I was in my mid 50s, never visit the GP, in over 20yrs, now I am booking a test for prostrate cancer. A few days later I get panicky call from my GP saying my PSA result was raised at 20.. I asked her what the acceptable level was she said under 2--3. Within 2 weeks, I was booked into my local hospital for Bone Scan, my sister-in-law a consultant in The Netherlands was aghast at the NHS protocol. 

Anyway that test came back negative. The next was an prostate MRI scan, that came back with a Tumour or something of concern, the next thing was a biopsy at Royal Free. The results sadly came back with a Gleeson score of 3+7 on a day that would have been my late mother's 82 birthday. 

The next thing was researching the options. From new to old, I saw an oncologist at Barnet General Hospital and was amazed to see you could pretty much chart your own path. She recommended surgery over everything, but I queried her about Hormone and RT, she OK fair enough, I can start you on the tablets straight away. It just did not sound right, from not knowing much about PC now charting my path. 

In February, I got a call from a consultant from UCLH, talking to me about Robotic surgery. I looked at the outcomes and I felt a bit too risky. So I enquired about the HIFU option, I was accepted on the programme, on the proviso I understook another biopsy on an area that was not sampled before. I was already by this time on a list for the robotic surgery alternative, naturally I had to come off and was put on the HIFU biopsy path. The results came out yes there was low grade cancer 3+3, this qualifies for active surveillance, and HIFU would treat the initial diagnosis. I asked the consultant what he would do in my shoes, he said owing to my age (mid 50s), he would go for surgery to remove the prostate, after 4mths I finally arrived yesterday for the robotic surgery. I was told my prostate size of 150, was huge. Thanks to the guys at UCLH, today is day1 of recovery.

Edited by member 20 May 2022 at 20:01  | Reason: Not specified

 
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