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first post following diagnosis.

User
Posted 17 Sep 2019 at 11:58

First post so sorry if I have broken any rules with it and I’m still finding my way around the terminology

Just turned 55 living in Swindon and as part of my annual health screening from my employer I was picked up with a slightly raised PA and no other symptoms. Nothing irregular detected by the Doctor via internal check. These tests were repeated twice, with the outcome being the same. My private healthcare gave me access to a consultant Urologist – who again repeated the test and an MRI scan – which again showed nothing abnormal. However he offered a Biopsy which the results were delivered on the 12th Sept.

The results were as follows :- “prostate biopsies have shown a Gleason 3 + 4 adenocarcinoma of the prostate affecting the left lobe of the prostate. His previous MRI had not shown any evidence of disease, his PSA was low at 4.3 and this would indicate that the disease is organ confined with no evidence of metastases”. I believe the issues were with 2 out of 6 of the samples from the left hand lobe.

I’m now being referred to Bristol to see a surgeon about robotic removal of the prostrate and to Reading to see a consultant oncologist about radiotherapy options.

Too be honest whilst I’m obviously concerned about the diagnosis I’m concerned too about the risks from the respective treatment options too, particularly the potential incontinence & ED.

Would be interested in your thoughts around the treatment options, in particular the brachytherapy and whether a Gleeson of 3+4 would be suitable for this treatment (this is where my current thinking is).

Thanks for having me and for reading

Kev

User
Posted 24 Sep 2019 at 17:17

Alistair

The link in your blog to a catheter care video is outdated and contradicts the advice given by NICE, the royal college of nursing and UK medical staff.

Thanks Chris 

User
Posted 24 Sep 2019 at 21:59

Sorry newbie error - name removed 

 

kev

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User
Posted 17 Sep 2019 at 13:02
All will be clearer when you meet the respective specialists but if brachy had been available to my husband I think it would have been a no brainer.

One thing that will influence your decision will be the % of each core affected, and whether the cancer cells are towards the centre or towards the edge of the gland. Some oncos would say that G7 (3+4) is not suitable for brachy but it might be that the element of 4 is very, very small. Other oncos will use brachy in conjunction with external RT in high risks cases.

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

User
Posted 17 Sep 2019 at 13:07
3+4 in a young patient would normally warrant treatment. You may want to get a second opinion on the Gleason grading as that is ultimately an "opinion". If you can get it downgraded to a 3+3 you sound like a candidate for active surveillance.
User
Posted 17 Sep 2019 at 13:18

There are two types of brachy, used for two very different diagnosis.

LDR, or seed, or permanent brachytherapy tends to be used on T2 low risk diagnosis.
You didn't give enough details of your diagnosis, but you might be T2 low risk.

HDR, or temporary brachytherapy is currently popular with External Beam Radiotherapy for high risk cases,
Gleason 8 or above, or T3, or PSA >= 20.

For ED, you need to know if you are eligible for nerve sparing with a prostatectomy. It's a risk with just about every treatment, but the risk varies. With prostatectomy, you will lose erections afterwards, but if you have nerve sparing, around 3 in 5 people get it back between 6 months and 2 years later. For Radiotherapy, it rarely has any instant impact, but around perhaps 2 in 5 cases, erections are lost slowly between 2 and 7 years later.

One other thing I would warn you about. When diagnosed on the NHS, you come under a multi-disciplinary team (MDT) consisting of urologists, oncologists, radiologists, etc (there were 30 clinicians in my MDT). They reach an agreement on what treatment is (or treatment choices are) best for you, and this stops one consultant just pushing their on procedure. When diagnosed privately, many people only ever see one consultant, and get pushed into doing what their particular procedure is. Do make sure you are getting good advice about a range of treatments.

Edited by member 17 Sep 2019 at 15:25  | Reason: Not specified

User
Posted 17 Sep 2019 at 15:05

My husband had HDR Brachy, followed by radiotherapy, and then 3 years hormone therapy. He was diagnosed Gleason 9 Tb3. PSA 8.5 He has now been off the HT for 18 months, his last PSA was 0.2. He has regained some of his strength, has sexual feelings and erections without any medical help, although some levels of foreplay and encouragement.

He is 69 now,the treatments have not been easy, he feels he has lost strength and stamina, but time and age need to be factored in.
We have an acre of garden grow all our own food, and we are quite active. He was a marathon runner, and went to the gym, his gym is now the garden, managing our ( small) smallholding. He also sings and plays guitar every day, does the occasional charity gig and friends garden gigs.

It has been hard at times but he is postive most days, happy most days and as I type he is doing a painting in the barn, his latest hobby!

I'm in the process of planning our next holiday!

Please ask questions... will do my best to answer, but I am not an expert ;-)


I hope this helps.

Leila

 

Edited by member 17 Sep 2019 at 15:06  | Reason: Not specified

User
Posted 17 Sep 2019 at 15:11

Thanks so much for the replies, it's very useful information. Just to give you a little more context to my position I am just about to leave my current job where the private medical cover has come from (it stays in place until 31st october) so i will be back in the hands of the NHS from that point, which from what i have read seem to be very capable in this field.

I didnt mention the fact I was classified as Stage T1C

 

Thanks again

Kev

 

 

 

 

 

User
Posted 24 Sep 2019 at 16:08

Kevin

I have been prescribed the same Gelason score and having it removed asap. Personal choice I know full well personally that I do not want any cancer inside me.

I have posted a stack of information you are likely to be interested in in terms of the process I have gone through leading up to the operation early next month on my blog.

https://aprostateblog.blogspot.com/


User
Posted 24 Sep 2019 at 16:26

Originally Posted by: Online Community Member


I have posted a stack of information you are likely to be interested in in terms of the process I have gone through leading up to the operation early next month on my blog.

 

Keep in mind though that this is one person's experience and yours may be quite different; for example, not all hospitals require the patient to self-inject afterwards, not all patients will have a named nurse (or may have one but will never meet, speak or get a call back from them) and not everyone gets district nursing support afterwards. 

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

User
Posted 24 Sep 2019 at 17:17

Alistair

The link in your blog to a catheter care video is outdated and contradicts the advice given by NICE, the royal college of nursing and UK medical staff.

Thanks Chris 

User
Posted 24 Sep 2019 at 20:23

Further update following a visit to  A Reading based  oncologist today.

It seems that I am a very good candidate for the Brachytherapy seed option, which I am so pleased about. We did discuss options should I get a reoccurrence and he said that he only had 1 patient who needed a total prostrate removal following Brachytherapy and this could be done in London. So that was another worry of the list . So given my age, diagnosis, the significantly lesser side effects I am going ahead in October with the Brachytherapy.

Thanks again for the comments you have given 

Kev

 

 

 

Edited by member 24 Sep 2019 at 21:58  | Reason: Not specified

User
Posted 24 Sep 2019 at 20:32
Best to edit your post to remove the name of the consultant or ask th3 moderators to do it for you - it is a rule you agreed to when joining the forum.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2019 at 21:59

Sorry newbie error - name removed 

 

kev

 
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