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

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 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 14:07

Good luck Bill. Will be thinking of you! 🤞

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 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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