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One year surgery-versary today

User
Posted 09 Jun 2020 at 21:27

Update from our first MDT meeting......We got an unexpected phone call from a urology registrar late afternoon to inform us of their findings.

Grade 4, Gleason 8, 3+5 but one core 5+3. 5/6 cores positive on the right.  Localised and contained on the right side only.  PNI but no extraprostatic extension. T2b, N0, M0. Bone scan clear.

Being referred to surgeon. Not for hormone therapy unless surgeon decides.  Will have telephone consultation soon hopefully.

It was such a relief to get to speak to a Doctor finally and ask questions 🌹

Edited by member 27 Jul 2021 at 21:03  | Reason: New treatment update

User
Posted 19 Mar 2021 at 17:03

After a nerve wracking 48 hours we just learnt that my husband’s first post adjuvant RT PSA is UNDETECTABLE.....<0.1. 
There is not a day gone by that I have not visited this community since we joined. I have learnt so much here and thank you for your continued support.

Best wishes to everyone 😘

User
Posted 10 Jun 2020 at 07:19
Lexi, well at least you know the result. Might I suggest you update your original thread, and delete this one, rather than starting a new one, as it’s easier for everyone to follow the progress of your case.

Best of luck for the future.

Cheers, John.

User
Posted 10 Jun 2020 at 19:02
Good news. Very treatable. He'll be on a curative treatment path.

I would ask for appointments with both a urologist and an oncologist if I were you. Urologists are naturally inclined to want to wield the knife because that's what they do. An oncologist can give you the options for other treatments and you can then make your mind up.

Best wishes,

Chris

User
Posted 10 Jun 2020 at 19:58
Lexi is only 54 so normally would expect many more years, so in considering treatment needs to pay particular attention to this aspect where even in a radiated prostate cancer can recur even quite a number of years later. RT can in need be given later if surgery does not fully eradicate the cancer. Of course it's down to how the patient sees it having discussed with consultants of both disciplines.
Barry
User
Posted 11 Jun 2020 at 20:35
It's not normal to have HT prior to surgery, Lexi, provided the surgery happens relatively quickly (a month or two). Prostate cancer is a slow-growing disease. Your husband has without doubt had it for years without knowing it, and another few weeks isn't going to make any significant difference. HT itself can have significant side-effects and is not particularly pleasant. Having been on it for 18 months I certainly wouldn't recommend it to anyone without a clinical need!

Things should happy pretty quickly now. If you've not heard anything in another week I'd give the hospital a ring and chase it.

Best wishes,

Chris

User
Posted 12 Jun 2020 at 00:42
Everything you have told us indicates that the hospital is moving swiftly and your husband isn't experiencing any delays so HT is unnecessary at this point. Also worth noting that 2 - 3 months from MDT to surgery is fairly common - with longer waits if the man wants to be referred to a different hospital, for example.

The grade doesn't usually change - a man diagnosed with a G6(3+3) will usually still have a 3+3 when he dies - it isn't that the 3s become 4s and then 5s.

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

User
Posted 26 Jun 2020 at 22:10

Hi Lexi,

It’s great to hear that things are now moving forward for your husband.  As you say, you can now plan ahead.  I hope all goes well for you both.

Angex

User
Posted 27 Jun 2020 at 07:44
Good news that things are moving forward. Anticipation of treatment is far worse than the actual event!

Best wishes,

Chris

User
Posted 13 Jul 2020 at 10:44

That’s good news Lexi.  All the best for the 27th.

Ange x

User
Posted 14 Jul 2020 at 22:04
I don't think it is routine to take another PSA reading pre-OP and it will make no difference to anything so cycle on
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jul 2020 at 23:13

I did have a pre op PSA test but assumed it was because from DX to surgery was around 4 months. It had risen from 7.7 to 10 in that time. As Lyn says it will not alter anything. 

Thanks Chris 

User
Posted 15 Jul 2020 at 07:25

My pre-op assessment was simply to make sure I was fit for surgery.

So blood pressure, pulse, bloods etc. Was all very straight forward and no PSA

User
Posted 26 Jul 2020 at 13:03

L

I am sure all will go well. Don't forget the instilagel and don't let him get constipation.

Thanks Chris

User
Posted 26 Jul 2020 at 14:49

Originally Posted by: Online Community Member

My husband’s surgery is tomorrow. He enjoyed his last cycle for a while this morning. 

🌹

I hope and pray it goes really well Lexi. Will be thinking of him when I get my PSA blood drawn in the morning.

(I enjoyed my third post-op ride this morning πŸ˜€after six weeks of walking)

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 27 Jul 2020 at 07:24

Hope all goes well Lexi

User
Posted 27 Jul 2020 at 12:16

Hi hope all goes well with the surgery. I bought a tubigrip like sock from optimum online it fits on your husbands calf and the catheter bag goes in it, I paid £10 for 4 and they are superb much much better than the Velcro straps supplied by the hospital, your husband will thank you for buying them makes the catheter experience more manageable. 

Check out UGO FIX SLEEVE online.

Carlos.

User
Posted 29 Jul 2020 at 00:26

Hi Lexi

All the best.

Good question.  Re PLND Pure coincidence I was posting about non nerve sparing. I wasn't told about PLND and I see you have asked about ePLND.

It's only recently I read my letter again from consultant.  Now post op 5 yrs.   Maybe some one  will explain the different options, and if the surgeon or the MDT decide etc who does what. 

I actually had clear fluid dripping out of wounds for about 6hrs first night home during sleep.  Bed was soaked.   We mentioned it on our first meeting post op.  .  Surgeon.  Just said.   Yep, that sometimes happens..   We had no idea if this was normal or not.    All wounds healed perfect. Smaller ones glued, middle dissolvable stitches. Very neat.. 

 

Regards Gordon

 

Edited by member 29 Jul 2020 at 00:29  | Reason: Spelling

User
Posted 29 Jul 2020 at 01:21
No, extended lymph node removal isn't routine for all RPs, partly because it substantially increases the risk of lymphodema in the future. Surgeons will usually take a couple of lymph nodes out with the prostate for sampling - it is an important part of the pathology - but eLNR is usually because either there is suspicion of lymph node involvement (as a result of the MRI scan, for example) or there is an increased risk (a T3, for example) or because it is that particular surgeon's preference. Sometimes it isn't planned but once the surgeon gets in there s/he can see cancer in the lymph nodes and makes a decision to go for wider removal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jul 2020 at 07:32

Glad he's back home now Lexi and it seems to have gone well. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Jul 2020 at 08:08

Pleased to hear your husband is back home Lexi.  All the best for his recovery going forward.

Angex 

User
Posted 29 Jul 2020 at 08:59

Originally Posted by: Online Community Member

First small bowel movement this morning πŸŽ‰πŸŽˆπŸŽ‰ lots of discomfort with windy spasms which he’s been trying to walk off.

Thanks Alex, he’s doing remarkably well.....I guess it pays to be very fit pre-op.

🌹

Excellent to get the bowels moving quickly. Should help get the gas out of the abdomen (and get rid of any shoulder ache). Now he's got it going, keep it going and if it starts to slow down again don't be reluctant to take some lactulose or senna or whatever they gave you. (I had bowel going post op day 2 too and seem to remember needing some extra help about 2-3 days later. Of Course, we're all different, though).

Yes. Being fit helps a lot, both in terms of recovery and I think I read somewhere that the procedure is easier in lower BMI men.

Short "catheter bag shuffle" walks for a few days and then it'll be out before you know it and building up to longer walks will be an option. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Jul 2020 at 09:12
Quote:

I hope and pray it goes really well Lexi. Will be thinking of him when I get my PSA blood drawn in the morning.

(I enjoyed my third post-op ride this morning πŸ˜€after six weeks of walking)



Alex, have you had your PSA results? Best of luck 🀞🏼

User
Posted 29 Jul 2020 at 09:22
Quote:

Originally Posted by: Online Community Member

I hope and pray it goes really well Lexi. Will be thinking of him when I get my PSA blood drawn in the morning.

(I enjoyed my third post-op ride this morning πŸ˜€after six weeks of walking)



Alex, have you had your PSA results? Best of luck 🀞🏼

0.01 µg/L almost crapped myself until I realised that's the same as ng/ml
I think that's an OK result. In the surgery documentation it says one of the goals is to get PSA <0.1
Followup appointment next Tuesday

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Jul 2020 at 09:23
Hi Lexi, fantastic to hear that your husband is home & recovering well after surgery.

Mel

User
Posted 29 Jul 2020 at 11:12

Lexie

Good to hear you have him home. Hope his recovery goes well.

Thanks Chris

User
Posted 29 Jul 2020 at 13:09

Originally Posted by: Online Community Member

Hi Gordon, have you experienced any problems with lymphoedema over the past 5yrs or numbness at top of legs? Hope you’re doing well now. 

Thanks for asking. Doing really well. No swelling or numbness at all.   Odd aches, dull pains and tend to feel bladder needs emptying before it actually does, nothing major.  I took me about 3 months to feel physically in a good place. Don't rush, a lot of collateral damage the body and mind needs to rebuild.    Looking back my digestive system took the greatest impact, probably literally, however not off food or sick similar to IBS I assume, bloat and uncomfortable.  I had same after appendicitis 25 yrs ago.  Extremely fatigued for about 2 weeks.  Been absolutely fine since.

All the very best.

Gordon

User
Posted 03 Sep 2020 at 14:48

0.2 post-prostatectomy is not great news, so yes, you need to look at adjuvant radiotherapy and possibly HT via an oncologist.

A Gallium-68 PET-PSMA scan would be a gold standard, so the radiologist knows where to aim his ray-gun, but they are expensive and only a few places do them either on the NHS or private (£2600).

I and three mates found we had all PCA around the same time (we are of a Certain Age). Three of us had the best, no expense-spared, ‘Harley Street’ surgeons money can buy, and the other had his local NHS urology surgeon. Three of them all had recurrence, and I am the only one who has not. I had had the ‘Harley Street’ surgeon on the NHS at his Guildford practice.

They’re probably wondering why they didn’t go for HT/RT in the first place...

Best of luck.

Cheers, John.

Edited by member 03 Sep 2020 at 17:52  | Reason: Not specified

User
Posted 03 Sep 2020 at 16:02

Hi Lexi

I had my surgery on 9th July and was also 0.2 and showing reacurrance my surgeon was organising a PET scan for me and another psa on the 16th which I had to book in. I’ve not heard anything as yet regarding the PET scan. I did call this morning and was told it’s not even been booked in yet which is a worry. 

Carl

User
Posted 04 Sep 2020 at 16:13
Multifocal - it could be that he said there was multi-focal cancer found in the prostate at pathology (it was in a number of different parts of the prostate) or that there were multi-focal examples of the extra-prostatic extension / close margin. Basically, it sounds like there was quite a bit of cancer in the prostate and there is a good chance that the PSA is because they have left some cells behind in the prostate bed. That is better news than if there had been no EPE and margins were clear as in that case, the only explanation for a higher than expected PSA would be that the cancer had already migrated.

Choline PET scans are the mainstay of uro-oncology departments so I am not sure why he would have said that they are no good for prostate cancer. There are different tracers - C-choline and 18F choline, for example - but I believe both are available in Scotland. Perhaps he meant that choline isn't worth doing if the issue is spilt cells in the prostate bed because these are tiny clusters of cancer cells rather than a metastatic tumour? Any which way, the onco will be best placed to decide which scans.

Science suggests that Viagra does not help nerve recovery / penile rehabilitation in the same way as Cialis. However, I think I read recently that Cialis is not available on the NHS in Scotland so Viagra might be better than nothing. A conversation to have with your GP?

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

User
Posted 04 Sep 2020 at 16:34

Choline is used as a tracer for PET-PSMA scans, because it’s cheaper, more commonly available than G-68 and more stable to produce, but not as precise. Gallium scans are often cancelled or postponed at the last minute as the G-68 generator has failed. We are talking state-of-the-art nuclear medicine here!

Even if you you do get a scan of whatever complexion, don’t hold your breath that any tiny metatases will be located, as they are often too small to be visible!

Best of luck.

Cheers, John.

Edited by member 04 Sep 2020 at 18:21  | Reason: Not specified

User
Posted 04 Sep 2020 at 22:07

Sorry to hear your PSA news Lexi. 

Hope they can identify and deal with the stray cells.

I'll be in Scotland tomorrow if all goes to plan. I'm driving up to St Andrews to drop my son off at Uni. He's going to study medicine.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 04 Sep 2020 at 23:13

Aww Alex if only you knew of our love of St Andrews 😍 We have been going there for family holidays for 30yrs, even before our 3rd child was born.

We all celebrated my 50th there in 2015. We now enjoy breaks in St Andrews with our two small Grandchildren.

Our last visit was just 5wks ago when the Hubby was just 5 days post op. We had an amazing family weekend. We will be returning again on the Scottish Holiday Weekend, 25 September. Also booked for October.

Really great place and your Son will love it. Best wishes to him. He may have placements in Glasgow πŸ˜‹

User
Posted 06 Sep 2020 at 11:32
In normal circumstances the onco appointment should be within a month but Covid may play havoc with that. It isn't 'unsafe' to have to wait for the onco appointment as nothing major is going to happen in the meantime - even when you see him or her they may suggest waiting 3 or 6 months before doing anything. In our case, it was John rather than the onco who wanted to wait and recover properly from the op first. He waited 2 years before starting salvage HT and RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Sep 2020 at 13:52

On Sept 4th the surgeon told us he would get his secretary to post us a copy of the histology report......today I called her and asked if it was in the post. She told us we need to go through the correct channels and apply for this (I will contact CNS who has never had a problem emailing the reports).

Surgeon said he would write to Gp to arrange for prescription of viagra.....he hasn’t so Secretary said she will deal with it.  She was able to tell us that there’s a letter enroute for Oncology appointment on Oct 14.

PSA was repeated today.

User
Posted 15 Sep 2020 at 17:04

Is there a ‘window’ when RT works best ? Currently 7wks post op with PSA 0.2 and feel afraid. I have received a copy of the histology report after contacting our local CNS.

Thank you.

 

 

 

 

 

 

User
Posted 15 Sep 2020 at 19:13
Usually, 3 to 6 months after the hormone treatment started. There isn't an exact science on how long after it was noted that salvage or adjuvant treatment was needed - my husband waited until 2 years post-op so that he could recover as much as possible from one set of side effects before starting with new ones.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Sep 2020 at 22:10
Because although in the biopsy samples they found what could have been a significant proportion of pattern 5, in the post-op pathology they discovered that it was only 5% of the total. They had seriously underestimated the staging though - it had escaped out of the prostate at a number of different places - the good news is that the margins were mostly negative. Salvage RT to the prostate bed looks like a good option.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Sep 2020 at 23:25
Highly unlikely - PCa just doesn't move that quickly. The biopsy is like sticking a pin in a fruit cake & hoping to spear a cherry - they found a cherry and thought they were dealing with it - it turned out there were other cherries they missed.

If you are going to dwell, it might be helpful to know that 8 weeks from MRI to surgery is actually remarkably quick - many men here have had to wait a lot longer than that for their op (and that was before COVID) without any major changes in between times. It takes time to get the mRI results, arrange biopsies, get biopsy results, discuss at MDT, discuss with patient, wait for patient to see oncologist and / or second opinion surgeon, wait for patient to notify of choice made & then arrange the op. Your man was quite fortunate that all was done in 8 weeks - in that context, I can't see that there was any Covid delay at all in your case?

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

User
Posted 16 Sep 2020 at 21:12

Lexi I had my MRI and biopsy in Feb. I was meant to have surgery in April, but they pushed it twice due to COVID. First time to do with the general COVID shutdown. Second time because a couple of patients in London who had surgery (and were asymptomatic COVIDs) ended up dead because the intubation was thought to have pushed the virus deep inside the lungs. (Not sure if that turned out to be accurate.)
This meant no surgery without prior testing, so had to wait for a test process to be put in place. I got done in June. I think you weren't very far behind that?

Glad he's recovered well from the surgery. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 16 Sep 2020 at 21:40

Lexi

Best practice moves forward all the time. Three years ago at a PSA of 0.2 I asked if my consultant if I could delay SRT to sort of my stricture. He said he would be criticised and be in trouble if I did not start treatment before the PSA reached a figure. I "think" that figure was 0.5 but not 100 percent sure. 

I am sure our scholars will know if there is an advised upper limit, and of course covid had messed up "normal" practice.

Thanks Chris

User
Posted 28 Sep 2020 at 16:55

Well I was told to take 5mg of cialis (Tiadafil) daily.

In the very early days I was instructed to try Sildenafil (Viagra) but only because you don't need a prescription for 50mg

User
Posted 28 Sep 2020 at 17:36

Lexi 

I was put on  daily 100mg of sildenafil, apart from the blue tint to my vision no side effects. 

Thanks Chris

User
Posted 28 Sep 2020 at 23:41

There is no evidence that sildenafil helps with nerve repair / penile health post op in the way that tadalifil does but if he is hoping for an erection and is feeling randy, taking a sildenafil three times a week isn't going to do him harm - the maximum dose allowed by NICE guidelines is 100mg per day. Not many GPs would agree to prescribe that much though and in many parts of the country, 4 x 100mg per month is the maximum you can get on the NHS - general view is that men are allowed to have sex once a week :-(

Edited by member 28 Sep 2020 at 23:42  | Reason: Not specified

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

User
Posted 13 Oct 2020 at 22:25

Hi Chris

Yes I did see that, thanks. I didn’t really understand it but then read Lyn’s post.

Will update tomorrow.

Thanks, keep well.

User
Posted 14 Oct 2020 at 19:11

Ok Chris, thanks. For the planning stage he's to have an enema night before and morning of.

User
Posted 16 Oct 2020 at 20:34
I was given a box of micro enemas for my RT but only needed to use them for the first week. After that the RT had changed my bowel movements sufficiently that the lower bowel always was empty anyway, so they became unnecessary. No big deal either way - you quickly get used to using them.

I do have a couple of suggestions about RT:

1. Towards the end of treatment (and for several weeks afterwards), the radiation irritated my bladder and I found myself having to pee every 45m all night long. Absolutely shattered through lack of sleep, but the biggest help was buying a 1litre plastic urine bottle (Amazon 😁) so I didn't have to get out of bed to pee. Reduced the exhaustion enormously.

2. Again because of radiation irritating the bladder I got a sharp pain when peeing. Very common, apparently. Cranberry juice solved the problem for me in a couple of days. Magic! Nothing fancy, just the ordinary stuff from Sainsbury's.

Hope the treatment goes well,

Chris

User
Posted 17 Oct 2020 at 12:13

Thanks- and good luck to your other half

User
Posted 23 Oct 2020 at 20:09

About 1" above the penis (which meant rooting around in the pubes to find it each time) and the same height on either hip.

Oh, and they're blue dots in my case, so not same colour as a freckle.

Edited by member 23 Oct 2020 at 20:10  | Reason: Not specified

User
Posted 23 Oct 2020 at 20:13

Lexi

They are not massive, just looked three years on the ones on my sides are still just visible. I can't remember where the one on the front was and my belly is to big to see it anyway.

Thanks Chris

User
Posted 23 Oct 2020 at 20:34

Found two of them outer hip area.... but Andy I’m not going in search of the third ‼️
I would be lost without you all.....thanks 🌹

User
Posted 16 Dec 2020 at 14:57

Today marks the completion of my husband’s 33 fractions of adjuvant RT πŸ›ŽπŸ›ŽπŸ›Ž Time to try and relax and enjoy Christmas with our family.

Our very best wishes to you all and thank you for all your advice and support 😘



Edited by member 16 Dec 2020 at 15:01  | Reason: Not specified

User
Posted 19 Mar 2021 at 17:24

Great news Lexi

 

User
Posted 19 Mar 2021 at 19:22

Brilliant.

Dave

User
Posted 19 Mar 2021 at 23:20

Congratulations

User
Posted 20 Mar 2021 at 00:24
Lovely - if only you could go out and celebrate 😩
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Mar 2021 at 06:55

Fantastic news I’m so pleased for you both 

Carl

User
Posted 20 Mar 2021 at 12:45

Brilliant news Lexi, so happy for you both.

Angex

User
Posted 06 Jul 2021 at 21:06

Life is a bit easier for me. I just go to the GP and ask for a psa test, so I don't need a blood form. The receptionist just asks if the doctor or the hospital requested it.

I think it is quite reasonable that you would want to know the psa on a three monthly basis. So I would say get the test done in August, and then in September phone up for a new form. If the consultant kicks off, just remind him he is the one who keeps cancelling the appointments. 

Dave

User
Posted 06 Jul 2021 at 21:11
Yes - absolutely yes ... contact the allocated nurse or the onco's secretary to get an extra bloods form or get a PSA test from the GP surgery so that you have a track for the year.

Shocking situation for you to be put in :-(

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

User
Posted 07 Jul 2021 at 04:20
Why not ask your GP for a year’s worth of quarterly PSA test forms to save you and him time and hassle.

My own GPs surgery, here in Coventry, doesn’t deign to do blood tests, despite being the biggest practice in Coventry.

So I just book on-line the first phlebotomy appointment of the day at 07.00 - handy if you are fasting for cholesterol - at a nearby pharmacy. No problem.

The practice manager at the surgery has not committed to a return to on-line booking and face-to-face appointments on the 19th July, so we might still have to wait for forty minutes on hold on the day to get a telephone consultation call back from a doctor.

Surprisingly, she has invited me to be part of a practice patient focus group! Talk about making a rod for her own back…

Cheers, John.

User
Posted 27 Jul 2021 at 11:31
Great news Lexi. Congratulations and enjoy that break !

If life gives you lemons , then make lemonade

User
Posted 27 Jul 2021 at 11:51

Excellent. 

Dave

User
Posted 27 Jul 2021 at 22:07

Brilliant result Lexi.  Enjoy your family break.

Ange x

User
Posted 27 Jul 2021 at 23:30

Lexi 

Great news. Can't have been an easy year.

Thanks Chris

User
Posted 27 Jul 2021 at 23:34
Brilliant- enjoy the break!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Aug 2021 at 09:17

Originally Posted by: Online Community Member

We are delighted and proud to say that our two daughters have raised over 1k throughout July and that our oldest daughter has climbed 45 Munro in aid of PCUK πŸ’™β›°πŸ₯ΎπŸ₯ΎπŸ‘πŸΌ

 

Wow. Thats brilliant 

User
Posted 02 Aug 2021 at 10:32

Enjoy the break with family. 

Show Most Thanked Posts
User
Posted 10 Jun 2020 at 07:19
Lexi, well at least you know the result. Might I suggest you update your original thread, and delete this one, rather than starting a new one, as it’s easier for everyone to follow the progress of your case.

Best of luck for the future.

Cheers, John.

User
Posted 10 Jun 2020 at 19:02
Good news. Very treatable. He'll be on a curative treatment path.

I would ask for appointments with both a urologist and an oncologist if I were you. Urologists are naturally inclined to want to wield the knife because that's what they do. An oncologist can give you the options for other treatments and you can then make your mind up.

Best wishes,

Chris

User
Posted 10 Jun 2020 at 19:58
Lexi is only 54 so normally would expect many more years, so in considering treatment needs to pay particular attention to this aspect where even in a radiated prostate cancer can recur even quite a number of years later. RT can in need be given later if surgery does not fully eradicate the cancer. Of course it's down to how the patient sees it having discussed with consultants of both disciplines.
Barry
User
Posted 10 Jun 2020 at 20:18

Thank you for your reassuring words. The 5+3 core is a worry.  What would the reason be for not commencing my husband on hormone treatment in the interim as we don’t know how long it will be until we get a tele-consult with surgeon?

He has just turned 60 and is very fit and active with no underlying health issues.

BTW I’m the wife ! πŸ™Š

User
Posted 11 Jun 2020 at 20:35
It's not normal to have HT prior to surgery, Lexi, provided the surgery happens relatively quickly (a month or two). Prostate cancer is a slow-growing disease. Your husband has without doubt had it for years without knowing it, and another few weeks isn't going to make any significant difference. HT itself can have significant side-effects and is not particularly pleasant. Having been on it for 18 months I certainly wouldn't recommend it to anyone without a clinical need!

Things should happy pretty quickly now. If you've not heard anything in another week I'd give the hospital a ring and chase it.

Best wishes,

Chris

User
Posted 11 Jun 2020 at 22:13

Have been informed that a letter is in post to let us know that a tele-consult is arranged with surgeon in 2wks.

I thought due to delays with CV19 it was advisable to start on hormone treatment.....so do you reckon he is Ok without HT even if surgery is not for couple of months?

Is it possible that if he’s had it for few years that it would of been lower grade back then?

User
Posted 12 Jun 2020 at 00:42
Everything you have told us indicates that the hospital is moving swiftly and your husband isn't experiencing any delays so HT is unnecessary at this point. Also worth noting that 2 - 3 months from MDT to surgery is fairly common - with longer waits if the man wants to be referred to a different hospital, for example.

The grade doesn't usually change - a man diagnosed with a G6(3+3) will usually still have a 3+3 when he dies - it isn't that the 3s become 4s and then 5s.

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

User
Posted 26 Jun 2020 at 15:24

We had telephone consultation with Consultant Surgeon this afternoon. RALP surgery recommenced 3wks ago in Glasgow. They are prioritising patients in categories 1-3.

My husband is in category 1 (unfortunately)  meaning he will have surgery in 4-6 weeks. We feel relieved now that we have a plan in place.

User
Posted 26 Jun 2020 at 22:10

Hi Lexi,

It’s great to hear that things are now moving forward for your husband.  As you say, you can now plan ahead.  I hope all goes well for you both.

Angex

User
Posted 27 Jun 2020 at 07:44
Good news that things are moving forward. Anticipation of treatment is far worse than the actual event!

Best wishes,

Chris

User
Posted 13 Jul 2020 at 10:26

Surgery scheduled for 27/7.

User
Posted 13 Jul 2020 at 10:44

That’s good news Lexi.  All the best for the 27th.

Ange x

User
Posted 14 Jul 2020 at 21:17

Pre op assessment is 22/7 and I assume they repeat PSA, if not will ask Gp. Husband has been cycling almost daily due to gym closures. Should he refrain for 48hrs prior to appointment or is it a case of ....bugger it, it’s coming out OR no cycling to get an accurate pre-op PSA?

Thanks 🌹

User
Posted 14 Jul 2020 at 22:04
I don't think it is routine to take another PSA reading pre-OP and it will make no difference to anything so cycle on
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jul 2020 at 23:13

I did have a pre op PSA test but assumed it was because from DX to surgery was around 4 months. It had risen from 7.7 to 10 in that time. As Lyn says it will not alter anything. 

Thanks Chris 

User
Posted 15 Jul 2020 at 07:25

My pre-op assessment was simply to make sure I was fit for surgery.

So blood pressure, pulse, bloods etc. Was all very straight forward and no PSA

User
Posted 15 Jul 2020 at 20:59

Thanks, hubby will enjoy his cycling right up till pre-assessment then we will be isolating.....I forgot about that πŸ™ˆ His last PSA was the day of TRUS 4/5 so I thought they’d do another one at pre-op.

They’ve reintroduced visiting in hospitals in Scotland with restrictions but at least I will get to see hubby post op.

User
Posted 26 Jul 2020 at 12:55

My husband’s surgery is tomorrow. He enjoyed his last cycle for a while this morning. 

🌹

User
Posted 26 Jul 2020 at 13:03

L

I am sure all will go well. Don't forget the instilagel and don't let him get constipation.

Thanks Chris

User
Posted 26 Jul 2020 at 14:49

Originally Posted by: Online Community Member

My husband’s surgery is tomorrow. He enjoyed his last cycle for a while this morning. 

🌹

I hope and pray it goes really well Lexi. Will be thinking of him when I get my PSA blood drawn in the morning.

(I enjoyed my third post-op ride this morning πŸ˜€after six weeks of walking)

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 27 Jul 2020 at 07:24

Hope all goes well Lexi

User
Posted 27 Jul 2020 at 12:16

Hi hope all goes well with the surgery. I bought a tubigrip like sock from optimum online it fits on your husbands calf and the catheter bag goes in it, I paid £10 for 4 and they are superb much much better than the Velcro straps supplied by the hospital, your husband will thank you for buying them makes the catheter experience more manageable. 

Check out UGO FIX SLEEVE online.

Carlos.

User
Posted 28 Jul 2020 at 23:47

Update to say my husband had RALP with ePLND yesterday. Surgeon phoned me at 5pm to say things went smoothly and they were able to spare the left sided nerves.

Got him home tonight and have all the follow up appointments in place.

Is the ePLBD common practice? I had asked about routine lymph node removal and I think I was told they use a "template" for removal of lymph nodes.

🌹

User
Posted 29 Jul 2020 at 00:26

Hi Lexi

All the best.

Good question.  Re PLND Pure coincidence I was posting about non nerve sparing. I wasn't told about PLND and I see you have asked about ePLND.

It's only recently I read my letter again from consultant.  Now post op 5 yrs.   Maybe some one  will explain the different options, and if the surgeon or the MDT decide etc who does what. 

I actually had clear fluid dripping out of wounds for about 6hrs first night home during sleep.  Bed was soaked.   We mentioned it on our first meeting post op.  .  Surgeon.  Just said.   Yep, that sometimes happens..   We had no idea if this was normal or not.    All wounds healed perfect. Smaller ones glued, middle dissolvable stitches. Very neat.. 

 

Regards Gordon

 

Edited by member 29 Jul 2020 at 00:29  | Reason: Spelling

User
Posted 29 Jul 2020 at 01:21
No, extended lymph node removal isn't routine for all RPs, partly because it substantially increases the risk of lymphodema in the future. Surgeons will usually take a couple of lymph nodes out with the prostate for sampling - it is an important part of the pathology - but eLNR is usually because either there is suspicion of lymph node involvement (as a result of the MRI scan, for example) or there is an increased risk (a T3, for example) or because it is that particular surgeon's preference. Sometimes it isn't planned but once the surgeon gets in there s/he can see cancer in the lymph nodes and makes a decision to go for wider removal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jul 2020 at 07:32

Glad he's back home now Lexi and it seems to have gone well. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Jul 2020 at 07:40

Hi Gordon, have you experienced any problems with lymphoedema over the past 5yrs or numbness at top of legs? Hope you’re doing well now.

Thanks Lyn, it’s got me quite concerned as MRI didn’t suggest lymph node involvement and T2b (I know that can change after pathology) The surgeon’s nurse specialist who was in theatre came to visit us before discharge last night. I asked her did the know how many lymph nodes were removed but she said that will come in the pathology report and that they just “strip” them during surgery.

First small bowel movement this morning πŸŽ‰πŸŽˆπŸŽ‰ lots of discomfort with windy spasms which he’s been trying to walk off.

Thanks Alex, he’s doing remarkably well.....I guess it pays to be very fit pre-op.

🌹

Edited by member 29 Jul 2020 at 07:42  | Reason: Add in extra sentence

User
Posted 29 Jul 2020 at 08:08

Pleased to hear your husband is back home Lexi.  All the best for his recovery going forward.

Angex 

User
Posted 29 Jul 2020 at 08:59

Originally Posted by: Online Community Member

First small bowel movement this morning πŸŽ‰πŸŽˆπŸŽ‰ lots of discomfort with windy spasms which he’s been trying to walk off.

Thanks Alex, he’s doing remarkably well.....I guess it pays to be very fit pre-op.

🌹

Excellent to get the bowels moving quickly. Should help get the gas out of the abdomen (and get rid of any shoulder ache). Now he's got it going, keep it going and if it starts to slow down again don't be reluctant to take some lactulose or senna or whatever they gave you. (I had bowel going post op day 2 too and seem to remember needing some extra help about 2-3 days later. Of Course, we're all different, though).

Yes. Being fit helps a lot, both in terms of recovery and I think I read somewhere that the procedure is easier in lower BMI men.

Short "catheter bag shuffle" walks for a few days and then it'll be out before you know it and building up to longer walks will be an option. πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Jul 2020 at 09:12
Quote:

I hope and pray it goes really well Lexi. Will be thinking of him when I get my PSA blood drawn in the morning.

(I enjoyed my third post-op ride this morning πŸ˜€after six weeks of walking)



Alex, have you had your PSA results? Best of luck 🀞🏼

User
Posted 29 Jul 2020 at 09:22
Quote:

Originally Posted by: Online Community Member

I hope and pray it goes really well Lexi. Will be thinking of him when I get my PSA blood drawn in the morning.

(I enjoyed my third post-op ride this morning πŸ˜€after six weeks of walking)



Alex, have you had your PSA results? Best of luck 🀞🏼

0.01 µg/L almost crapped myself until I realised that's the same as ng/ml
I think that's an OK result. In the surgery documentation it says one of the goals is to get PSA <0.1
Followup appointment next Tuesday

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Jul 2020 at 09:23
Hi Lexi, fantastic to hear that your husband is home & recovering well after surgery.

Mel

User
Posted 29 Jul 2020 at 11:12

Lexie

Good to hear you have him home. Hope his recovery goes well.

Thanks Chris

User
Posted 29 Jul 2020 at 13:09

Originally Posted by: Online Community Member

Hi Gordon, have you experienced any problems with lymphoedema over the past 5yrs or numbness at top of legs? Hope you’re doing well now. 

Thanks for asking. Doing really well. No swelling or numbness at all.   Odd aches, dull pains and tend to feel bladder needs emptying before it actually does, nothing major.  I took me about 3 months to feel physically in a good place. Don't rush, a lot of collateral damage the body and mind needs to rebuild.    Looking back my digestive system took the greatest impact, probably literally, however not off food or sick similar to IBS I assume, bloat and uncomfortable.  I had same after appendicitis 25 yrs ago.  Extremely fatigued for about 2 weeks.  Been absolutely fine since.

All the very best.

Gordon

User
Posted 05 Aug 2020 at 07:46

How is recovery going Lexi? It must be nearly time for the catheter to come out? πŸ˜€

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 05 Aug 2020 at 09:20

Hi Alex, husband is doing well, day 9 post op. Catheter was removed yesterday and PFE have resumed ! Surprised that he had a dry night.
He had a telephone appointment with a physio on Monday. She was calling to talk him through pre op PFE not realising  he was already a week post op. Anyway she will follow him up in a few weeks.

Glad you get on well at your follow OPA πŸ‘πŸΌπŸ™πŸΌ

Thanks for the support, hope you are all doing good 🌹

Edited by member 05 Aug 2020 at 09:30  | Reason: Not specified

User
Posted 03 Sep 2020 at 14:34

Just received first post op PSA 0.2. It was taken at exactly 5wks post surgery.

Follow up with surgeon for pathology is tomorrow via phone.

Should I be requesting referral to oncologist and/or scan (? Type)? Anything else we should ask apart from info on margins, lymph nodes, grading?

Thank you.

To recap: G8, T2b. No EPE but PNI. ePLND carried out at RALP on 27/7/2020.

Edited by member 03 Sep 2020 at 14:35  | Reason: Change title

User
Posted 03 Sep 2020 at 14:48

0.2 post-prostatectomy is not great news, so yes, you need to look at adjuvant radiotherapy and possibly HT via an oncologist.

A Gallium-68 PET-PSMA scan would be a gold standard, so the radiologist knows where to aim his ray-gun, but they are expensive and only a few places do them either on the NHS or private (£2600).

I and three mates found we had all PCA around the same time (we are of a Certain Age). Three of us had the best, no expense-spared, ‘Harley Street’ surgeons money can buy, and the other had his local NHS urology surgeon. Three of them all had recurrence, and I am the only one who has not. I had had the ‘Harley Street’ surgeon on the NHS at his Guildford practice.

They’re probably wondering why they didn’t go for HT/RT in the first place...

Best of luck.

Cheers, John.

Edited by member 03 Sep 2020 at 17:52  | Reason: Not specified

User
Posted 03 Sep 2020 at 16:02

Hi Lexi

I had my surgery on 9th July and was also 0.2 and showing reacurrance my surgeon was organising a PET scan for me and another psa on the 16th which I had to book in. I’ve not heard anything as yet regarding the PET scan. I did call this morning and was told it’s not even been booked in yet which is a worry. 

Carl

User
Posted 04 Sep 2020 at 15:16

Just had our first telephone consultation giving us histology report.

Downgraded to Gleason 7 (4+3) but unfortunately upstaged to T3a. All 15 lymph nodes were clear. There was some EPE (5mm) and mention of less than 3mm margin. I have written down multifocal but can’t remember what this referred to or what it means. Any ideas?

Referral to oncologist being made. PSA to be rechecked in another week.

When I asked about PET scans he said that the Oncologist may refer for PSMA scan but would be London (we live in Scotland). I asked if a choline scan would be beneficial and he said not for PCa......is that correct?

I asked why there had been no mention of commencing PDE5 (purely for penile health not for ED). Surgeon said he likes to have his first consultation before prescribing. He said he will write to our GP asking for Viagra 100mg three times weekly to be prescribed.......is that the norm?

So much to take in and difficult over the phone.

Thanks for listening 🌹

 

User
Posted 04 Sep 2020 at 16:13
Multifocal - it could be that he said there was multi-focal cancer found in the prostate at pathology (it was in a number of different parts of the prostate) or that there were multi-focal examples of the extra-prostatic extension / close margin. Basically, it sounds like there was quite a bit of cancer in the prostate and there is a good chance that the PSA is because they have left some cells behind in the prostate bed. That is better news than if there had been no EPE and margins were clear as in that case, the only explanation for a higher than expected PSA would be that the cancer had already migrated.

Choline PET scans are the mainstay of uro-oncology departments so I am not sure why he would have said that they are no good for prostate cancer. There are different tracers - C-choline and 18F choline, for example - but I believe both are available in Scotland. Perhaps he meant that choline isn't worth doing if the issue is spilt cells in the prostate bed because these are tiny clusters of cancer cells rather than a metastatic tumour? Any which way, the onco will be best placed to decide which scans.

Science suggests that Viagra does not help nerve recovery / penile rehabilitation in the same way as Cialis. However, I think I read recently that Cialis is not available on the NHS in Scotland so Viagra might be better than nothing. A conversation to have with your GP?

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

User
Posted 04 Sep 2020 at 16:34

Choline is used as a tracer for PET-PSMA scans, because it’s cheaper, more commonly available than G-68 and more stable to produce, but not as precise. Gallium scans are often cancelled or postponed at the last minute as the G-68 generator has failed. We are talking state-of-the-art nuclear medicine here!

Even if you you do get a scan of whatever complexion, don’t hold your breath that any tiny metatases will be located, as they are often too small to be visible!

Best of luck.

Cheers, John.

Edited by member 04 Sep 2020 at 18:21  | Reason: Not specified

User
Posted 04 Sep 2020 at 17:05

Thanks Lyn for clear explanation. Had I of been face to face with him I definitely would of challenged, or pursued the choline scan conversation.

Thank you John. I feel quite calm about things.

Going to enjoying our Granddaughter’s 5th birthday tomorrow.

🌹

User
Posted 04 Sep 2020 at 22:07

Sorry to hear your PSA news Lexi. 

Hope they can identify and deal with the stray cells.

I'll be in Scotland tomorrow if all goes to plan. I'm driving up to St Andrews to drop my son off at Uni. He's going to study medicine.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 04 Sep 2020 at 23:13

Aww Alex if only you knew of our love of St Andrews 😍 We have been going there for family holidays for 30yrs, even before our 3rd child was born.

We all celebrated my 50th there in 2015. We now enjoy breaks in St Andrews with our two small Grandchildren.

Our last visit was just 5wks ago when the Hubby was just 5 days post op. We had an amazing family weekend. We will be returning again on the Scottish Holiday Weekend, 25 September. Also booked for October.

Really great place and your Son will love it. Best wishes to him. He may have placements in Glasgow πŸ˜‹

User
Posted 06 Sep 2020 at 09:23

I am wondering what sort of time frame we can safely expect to wait to speak to Oncol? 

Surgery was 6wks ago and referral just made following the above histology.

Thanks.

User
Posted 06 Sep 2020 at 11:32
In normal circumstances the onco appointment should be within a month but Covid may play havoc with that. It isn't 'unsafe' to have to wait for the onco appointment as nothing major is going to happen in the meantime - even when you see him or her they may suggest waiting 3 or 6 months before doing anything. In our case, it was John rather than the onco who wanted to wait and recover properly from the op first. He waited 2 years before starting salvage HT and RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Sep 2020 at 13:52

On Sept 4th the surgeon told us he would get his secretary to post us a copy of the histology report......today I called her and asked if it was in the post. She told us we need to go through the correct channels and apply for this (I will contact CNS who has never had a problem emailing the reports).

Surgeon said he would write to Gp to arrange for prescription of viagra.....he hasn’t so Secretary said she will deal with it.  She was able to tell us that there’s a letter enroute for Oncology appointment on Oct 14.

PSA was repeated today.

User
Posted 15 Sep 2020 at 17:04

Is there a ‘window’ when RT works best ? Currently 7wks post op with PSA 0.2 and feel afraid. I have received a copy of the histology report after contacting our local CNS.

Thank you.

 

 

 

 

 

 

 
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