Biopsy results update

User

Posted 27 Jul 2023 at 14:14

Afternoon all

todays meeting with urologist over with, and on the whole my Husband’s biopsy results were the best we could hope for (given that on DRE a T2c was felt and MRI Likert 5), we had already come round to some sort of PC diagnosis!

Gleason 7 (3+4), ca in 2 targeted areas, all contained within the prostate.

Steve is 61 and considered healthy, except for mild diverticula disease which is managed by watching diet, we know what the triggers are, but because of this the MDT have not recommended any form of RT (which I had already read).

They have given options of AS with 3 monthly psa (his last one beg of June was 6.39). Or RARP whenever he is ready. There doesn’t seem to be any urgency for us to make a decision and having just retired and with quite a few trips planned in next 8 months as well as a new grandchild due in October, we are thinking of surgery in spring next year. Steve feels he does ‘want it out’ which is understandable, but is happy to enjoy a period of time before he goes through that given that he will be monitored and the current containment.

they are going to do a bone scan soon just to be absolutely sure no Mets but they say extremely unlikely.

would appreciate any thoughts on those either on AS or with similar experience….or indeed just with any words of wisdom please.

Debbie

User

Posted 27 Jul 2023 at 22:13

Obviously you need to decide what is best for you but just a word of caution. My biopsy came back as the same Gleason 3+4=7 with a simple 1.4cm lesion on the left side, all contained. I chose to have the RARP asap to get it out of me. That happened on May 12th and after 6 weeks I got the histology report - the Gleason score was upgraded to 4+5=9 with 10% grade 5 and the cancer had broken through the gland with a pT3a N0 diagnosis.

So the biopsy gives an indication of what's going on but until they actually get everything under the microscope in the lab, they cannot be certain.

Now I would add that my PSA was at 10 at the biopsy and 12 a few days before the RARP.

In my case I am glad that I had it removed when I did and didn't wait any longer. I am now 99% continent and ready to tackle life again!

Good luck with everything.

User

Posted 27 Jul 2023 at 22:03

Well at least you now know where you stand. It is generally considered that anything above Gleason 6 will need radical treatment at some point, but I absolutely agree AS is a good idea if you have trips planned. It is quite possible this won't progress for a number of years.

I know diverticulitis may be a problem with EBRT, but I would have thought LDR brachy would be a possibility most of the RT is confined to the prostate. Anyway you have plenty of time to decide.

Dave

User

Posted 28 Jul 2023 at 13:28

Well! What a difference 24hours makes! This cancer sure does mess with your head as well as your body!

Steve and I were feeling so relieved yesterday morning after the biopsy results meeting, yes cancer; G7 but seemingly caught early and all contained in the prostate. Great, we expected treatment at some stage but no rush, go and enjoy the next 9 months with booked/planned hols.

complete turnaround by both of us today! Too much reading and delving into info, obviously discussing with family, and we have swung the other way and now feeling …. Don’t put it off, get it sorted/treated/out asap, sod the holidays etc. for fear of leaving it just that tad too long and then the cancer breaching the capsule etc.

I guess this is normal and we just need a few days peace and quiet to ourselves to let things settle! As many of you know, it’s not easy!

Edited by member 28 Jul 2023 at 13:29 | Reason: Spelling

User

Posted 28 Jul 2023 at 14:56

I completely understand how you are feeling and I think we all go through similar.

I think you are correct in your thought process - get it sorted and then live the rest of your lives. Having it hanging over your heads is not nice.

I know the side effects of the surgery are not insignificant (incontinence and ED) but you can live with them and they may not be as drastic as you imagine - my incontinence is 99% fixed since the May 12 RARP - just if I forget to hold it in when I lift something I may let out a dribble - but one pad lasts all day and zero problems at night.

ED may be a short term or a long term issue depending on whether they can save the nerves, which they won't know until they get in there. Even if they can't, there are solutions but it very much depends on your relationship and how much you can work together on finding enjoyable solutions to the problem.

Once it's out of the way, then you can go and enjoy that retirement :)

User

Posted 30 Jul 2023 at 12:18

My details are all on my profile but when I was first tested at age 60 in 2018 I was 3.58 and decided then to wait to see how things developed. I was tested again in March 21 and my PSA was 5.32, it was 5.76 in April 21 and 6.01 in September 21. I was put on the cancer pathway after my 5.76 reading and had my prostate removed just before Christmas 2021. I was a 3 plus 4, with 5% Gleason 4. When my prostate was removed and sliced and diced I remained a 3 plus 4 but my T2 was upgraded to a T3a. So, as mentioned by Steve, until the "Mother Ship" is removed and analysed you can't be entirely sure.

Ivan

User

Posted 30 Jul 2023 at 14:18

Thanks Ivan, really useful to read both yours and Steve’s (above) comments and bio experience. Although everyone different, both seem very similar journeys to ours so far.

72 hours on from diagnosis and we both have a much clearer view having got the highs and lows and some of the immediate emotional reactions out of the way (as well as dealing with the reactions and emotions of our kids). Steve is very sure now that he wants to go ahead with RARP as soon as possible and I support that so onwards and upwards (hopefully!!…pun intended!). Will keep you all informed and no doubt will be delving into lots of other parts of the forum for post op info and advice!

Debbie

User

Posted 31 Jul 2023 at 14:42

I opted for RP after a period of AS and when staging had moved to T2C. Everyone reacts differently but I took it steady for the first 8 weeks or so (but walked everyday) and by 12 weeks was well on the mend. It was probably 8 months or so before I really felt back at 100%. Good luck with whatever route/timing you choose.

User

Posted 01 Aug 2023 at 00:27

Hi Debbie,

These decisions are so difficult but I do think you’re doing the right thing. My husbands Gleason score changed from 4+3 to 4+5 post op and downgraded from T3a to T2, so everything can change when they get to look at the whole prostate.

Our experience post op was really generally positive. Rob handled everything really well, even when he had to have his catheter in for 4 weeks total as a precaution. He did well with his continence and recovered quickly. ED has been more of a problem but he actually hasn’t had any medication to help with it but we’re doing ok.

He has just had a recurrence 18 months post op so he will be starting HT and then RT in a couple of months. He was originally diagnosed with cancer in one of his lymph nodes so although we were hoping for a miracle we knew more treatment would be likely.

More details on my profile and thread if you’re interested or if you have any questions at all, we are more than happy to try to answer them.

Wishing you all the best and will keep a look out for your updates x

User

Posted 13 Aug 2023 at 17:03

It is standard practice to have a bone scan. I think it is a fairly cheap test, but could save the NHS the cost of an operation if it were positive (not what you would want to hear that, but the bean counters would).

Since COVID results are often given by phone, but some hospitals are returning to the traditional way of doing things, don't read anything in to whether it is by phone or in person.

Dave

User

Posted 14 Aug 2023 at 12:44

I had my bone scintigraphy done just after the biopsy and prior to the RARP - dead easy and just a lot of waiting around for the drugs to disperse around the body. I agree that with the low-ish PSA that the chances are very low of finding anything (but it will highlight the joints so don't panic if you see them and the bladder showing up as dark patches LOL)

As Dave said, it's standard practice.

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User

Posted 27 Jul 2023 at 22:03

I know diverticulitis may be a problem with EBRT, but I would have thought LDR brachy would be a possibility most of the RT is confined to the prostate. Anyway you have plenty of time to decide.

Dave

User

Posted 27 Jul 2023 at 22:13

So the biopsy gives an indication of what's going on but until they actually get everything under the microscope in the lab, they cannot be certain.

Now I would add that my PSA was at 10 at the biopsy and 12 a few days before the RARP.

In my case I am glad that I had it removed when I did and didn't wait any longer. I am now 99% continent and ready to tackle life again!

Good luck with everything.

User

Posted 28 Jul 2023 at 13:28

Well! What a difference 24hours makes! This cancer sure does mess with your head as well as your body!

I guess this is normal and we just need a few days peace and quiet to ourselves to let things settle! As many of you know, it’s not easy!

Edited by member 28 Jul 2023 at 13:29 | Reason: Spelling

User

Posted 28 Jul 2023 at 14:56

I completely understand how you are feeling and I think we all go through similar.

I think you are correct in your thought process - get it sorted and then live the rest of your lives. Having it hanging over your heads is not nice.

Once it's out of the way, then you can go and enjoy that retirement :)

User

Posted 30 Jul 2023 at 12:18

Ivan

User

Posted 30 Jul 2023 at 14:05

Sorry to hear your biopsy result, hopefully your bone scan will confirm no mets, as soon as all the results are in things do seem to get easier to cope with, Take care DaveH

Edited by member 30 Jul 2023 at 14:06 | Reason: Not specified

User

Posted 30 Jul 2023 at 14:18

Thanks Ivan, really useful to read both yours and Steve’s (above) comments and bio experience. Although everyone different, both seem very similar journeys to ours so far.

Debbie

User

Posted 30 Jul 2023 at 14:22

Thanks Dave, both feeling very positive today!

User

Posted 30 Jul 2023 at 21:25

Djc44, It sure is a rollercoaster and my husband always wanted to remove the source if that option was available. He had his surgery in March 2022 and his recovery has been good 👍 ask the questions and look at all the options. My husbands histology didn’t change post surgery which was a relief but as others have said until the gland is removed it’s difficult to be 💯 sure of what you are dealing with. Once he had confirmation that he could have surgery, he just wanted to get on with it and come out the other end! There will be ups and downs. Best wishes to you both x

User

Posted 30 Jul 2023 at 21:34

Thanks Jayney, appreciate your comments. Do you mind sharing, now you are 18 months post surgery, what did you guys find the most difficult post surgery?

Debbie

User

Posted 31 Jul 2023 at 14:42

User

Posted 31 Jul 2023 at 21:55

Hi, You mentioned your holidays and I wonder if my experience is any assurance.

When I was diagnosed, in October 2016, I had a 4 week holiday in Australia planned and largely booked. My op turned out to be 16th December and I the flight out was 12th February. I was thinking we'd put it back. The airline, Singapore Airlines, said I could wait until one day before the trip before calling them. Some bookings had deposits paid and were wanting the balance, which was quite a lot. So we cancelled those and as the deposits weren't a large sum we didn't try to claim anything from insurance. I did wonder about asking them about moving the date but we wanted to go in February.

After the op and after the catheter was removed it felt like we could go. However my first appointment wasn't until 4 days before departure and I wanted to know things were right and approval of the doctor. So I waited until then and then rebooked the cancelled parts and went. It caused no problems at all.

Whether that I stopped drinking for several months made any difference I don't know, but it seemed to me that a wound to the bladder would be better without alcohol and I found the alcohol made me wake up worried in the night.

Anyway I hope your holidays work out. All the best Peter

User

Posted 31 Jul 2023 at 23:11

Thanks for that Peter, all info helps.

we have only given the go ahead today to our MDT that Steve wants RARP and by the time had bone scan, meeting at the hospital that will be doing the surgery etc we are expecting few weeks to pass and kind of anticipating surgery anytime 6-12 weeks so we have today sent emails re the holidays we have booked in Nov and Jan, we’ve only paid deposits so far and are happy for them to issue credit notes if possible to use in the future. If not we have an annual travel insurance policy that will refund as all booked before diagnosis. The Jan one is, like yours, a month trip to Australia and NZ. On balance we just felt better cancelling so Steve can be absolutely fully recovered and hopefully over any initial continence problems so he can fully enjoy such a big trip!

we are abroad in Europe in five weeks and have kept that on the cards as we are fairly sure surgery won’t happen until after that.

Debbie

User

Posted 01 Aug 2023 at 00:27

Hi Debbie,

More details on my profile and thread if you’re interested or if you have any questions at all, we are more than happy to try to answer them.

Wishing you all the best and will keep a look out for your updates x

User

Posted 13 Aug 2023 at 16:40

Is it usual to have a bone scan with a psa 6.4? Steve has opted for surgery and the consultant sent him for scan but said it would be highly unlikely for him to have Mets in bone. I wondered is it something they do routinely?

It was done on 3/8 and he’s had a request to attend an appointment to discuss results on 17th. Would the consultant see him to discuss any result (even just an all clear)….just wondering from others experience?

User

Posted 13 Aug 2023 at 17:03

Since COVID results are often given by phone, but some hospitals are returning to the traditional way of doing things, don't read anything in to whether it is by phone or in person.

Dave

User

Posted 14 Aug 2023 at 12:44

As Dave said, it's standard practice.

User

Posted 15 Aug 2023 at 00:21

Phone call today from clinical MacMillan nurse, thankfully bone scan all clear, referred now for surgery and should get initial appointment in 2-3 weeks (the letter for appointment this Thursday was an error!)…so onward and upwards!

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