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One year surgery-versary today

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 20:35

Thanks Lynn.  Not sure if it’s acceptable to post part of histology report but here’s  the summary.  We were told cancer was right side only preoperatively but this says bilateral. Given the tertiary pattern 5 why would they downgrade to a Gleason 7? 

SUMMARY:

- PROSTATIC ADENOCARCINOMA PRESENT
Tumour type: Acinar
- Gleason score: 4+3=7
- Tertiary pattern 5 present (5% of tumour)
- Grade Group (out of 5): 3
Tumour location: Multifocal and bilateral
- Location of dominant tumour nodule: Right lobe
- Size of dominant tumour nodule: 23 mm
Perineural invasion: Present
Lymphovascular invasion: Not present
- Extraprostatic extension: Multifocal, expansile, right lateral,
right posterior and right anterior periprostatic fat. Maximum radial
extension 5.6 mm.
- Seminal vesicle invasion: Not present
- Apical margin: Involved, right side, <3mm
- Circumferential margins: Clear
- Basal margin: Clear
- Right pelvic nodes: 0/7
- Left pelvic nodes: 0/8
- B. Microscopy of the periprostatic fat shows benign mature adipose
tissue.
- Stage (TNM8): pT3a pN0 R1

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 23:17

Thanks Lynn.

I can’t help but wonder if in the 8 weeks between MRI and surgery things got worse (the consequences of delays due to Covid).  I am telling myself to stop dwelling on what can’t be changed.

 

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 08:11

He couldn’t have a MRI in March due to the start of lockdown of Britain, then his TRUS was cancelled 1 April. He then had biopsies on 4 May but had to wait a further four weeks for MRI to allow for healing.

 If I knew then what I know now I would of asked to be referred to Glasgow for TP biopsies but we just grabbed the next available appointment for fear of further cancellation. Turned out we had to be referred to Glasgow  for surgery anyway (different health boards).

Glad to report he has made a great recovery from a surgical point of view.

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 16:14

Husband is 9wks post op and has received his sildenafil prescription. Advised to take 100mg three times a week.....is this fairly standard? Some of the information I have read recommended half that dose?

Thanks.

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 21:38

Originally Posted by: Online Community Member

Husband is 9wks post op and has received his sildenafil prescription. Advised to take 100mg three times a week.....is this fairly standard? Some of the information I have read recommended half that dose?

Thanks.

 

Hi, Husband is 11 weeks post op. He’s on Tidalafil 5mg daily and just prescribed 100mg Sildenafil twice a week with an initial test dose of 50mg. 

Mel

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 29 Sep 2020 at 19:55

I happened to come across a patient who had his RALP just a few weeks before my husband under the same surgeon. I learnt that he had gone privately but had his surgery at the same NHS hospital and that he was discharged home on Cialis. Perhaps we should ask Gp if he can change from Sildenafil once tablets are finished.

User
Posted 13 Oct 2020 at 20:08

Husband is now 11wks post surgery and doing well. No incontinence issues. Tomorrow we meet oncologist. I have been expecting a letter telling us the face to face appointment has been replaced by a phone call but it’s still on  and following a phone call to the secretary I am relieved that I am able to attend also. 

User
Posted 13 Oct 2020 at 21:59

Lexi

Did you see this the other week, the way the article is written was a little bit confusing at first.No doubt you can find research that says the complete opposite. 

https://community.prostatecanceruk.org/posts/t26716-Adjuvant-V-Salvage

I assume oh may be heading for some form of RT. 

Thanks Chris

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 10:44

Arrived to see oncologist only to be told I wasn't allowed in and that he would speak to his secretary for telling me otherwise. He agreed to speak to me separately at end of husband's consultation.

He recommends 33 sessions of RT to prostate bed but sees no benefit in commencing HT at present. He estimates it will commence in next 4-6wks.

Edit....just had call to say planning scan is next week and that enemas/instructions being posted out.

Do you have to use enemas daily before radiotherapy?

Best wishes to you all.

Edited by member 14 Oct 2020 at 14:09  | Reason: Not specified

User
Posted 14 Oct 2020 at 17:48

Lexi

Not an unexpected treatment but still disappointing. 

I had a daily enema, but not all hospitals do. I got into a  routine of using the enema at home a couple of hours before the RT. The main thing is consistency, so that the bladder and bowel are in the same position / state every treatment day.

It will get to be tedious but he should sail through the treatment.

Thanks Chris

Edited by member 14 Oct 2020 at 22:22  | Reason: Not specified

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 15 Oct 2020 at 18:09

Hi

I am due to start RT first week of November. I had gold markers implanted last Friday and planning scan is next Friday. I have been given box of enemas to use .
Use 1 the night before planning scan and 1 morning of scan. I have been told to use an enema in the morning prior to  each of the first 7 sessions

User
Posted 15 Oct 2020 at 22:09

Hi CBR

Hope it goes well for you. Is this first line treatment for you?

User
Posted 16 Oct 2020 at 13:00

Hi Lexi

Thanks

Yes, it will be up to now it’s been HT

Mark

User
Posted 16 Oct 2020 at 18:37

Received appointments and enemas in post today. Planning scan is next week and RT commences 2 Nov.

Good luck Mark πŸ€žπŸΌπŸ™πŸΌ

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 16 Oct 2020 at 20:58

Great tips Chris, thanks πŸ‘πŸΌ Will google the urinal just now.

User
Posted 17 Oct 2020 at 12:13

Thanks- and good luck to your other half

User
Posted 20 Oct 2020 at 06:22

12wks post op, feeling well, continence regained and first short cycle thoroughly enjoyed 🚴🏼
Today is the planning scan in preparation for RT commencing 2 Nov.

Microlette enema last night and this morning and then it’s one enema on the day of RT for first 7 days only.

🌹

User
Posted 23 Oct 2020 at 20:02

Those that have had RT could you identify your skin markings? I can’t for the life of me find three dots on my husband !! I am unsure if one is a freckle or not. 

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 23 Oct 2020 at 20:56

About a month after the radiotherapy, the pubes above the penis fall out because they're in the entry/exit wound area of the radiotherapy beam, so you'll get a chance to look then! About 3 months later, it was all regrowing again. It looked super neat when it first started regrowing, and it happened to coincide with my pump clinic appointment. The guy doing the pump demo even commented on how neat it was, but I hadn't been doing any manscaping!

A year later and it's noticeably thinning again, but this time it will be due to the hormone therapy which I've been on over 2 years now.

User
Posted 23 Oct 2020 at 21:28

Originally Posted by: Online Community Member

About a month after the radiotherapy, the pubes above the penis fall out because they're in the entry/exit wound area of the radiotherapy beam, so you'll get a chance to look then! About 3 months later, it was all regrowing again. It looked super neat when it first started regrowing, and it happened to coincide with my pump clinic appointment. The guy doing the pump demo even commented on how neat it was, but I hadn't been doing any manscaping!

 

πŸ˜‚πŸ€£πŸ˜‚

User
Posted 23 Oct 2020 at 23:45

Originally Posted by: Online Community Member
About a month after the radiotherapy, the pubes above the penis fall out because they're in the entry/exit wound area of the radiotherapy beam, so you'll get a chance to look then!

 

Speak for yourself - John didn't lose any pubes at all, just the hair on his back. 

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

User
Posted 24 Oct 2020 at 10:14

I had mine done yesterday- I can see all three, but that was helped by the remnants of the green marker penπŸ‘πŸ»

User
Posted 24 Oct 2020 at 10:51

Originally Posted by: Online Community Member

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.

After my second RT fraction I shaved my pubes just for about an inch around the tattoo. I just didn't think it was fair expecting radiotherapists to spend much time looking for that tattoo.

Dave

User
Posted 24 Oct 2020 at 16:47
I didn't have any hair loss there, although I did lose most of the hair on my arms and legs due to the HT. I can't see my alignment tattoos.

Chris

User
Posted 02 Nov 2020 at 09:59

14 weeks ago today my husband went in for his RALP surgery.  Today is the beginning of his RT, 33 fractions. Microlette enema for the first seven sessions only. 

Best wishes to you all 🌹

User
Posted 02 Nov 2020 at 10:14

Best wishes, I found it got a bit tedious towards the end. I met lots of people in the waiting room but I guess that is all different now.

Thanks Chris

User
Posted 02 Nov 2020 at 10:41

Thanks Chris, praying there’s no cancellations. Where I live the majority of routine elective surgeries are all cancelled.

User
Posted 02 Nov 2020 at 11:10

Once the RT starts, they can't cancel it.

This means many RT units have to run part empty, to ensure they can still complete all active treatments in the event they lose several staff to COVID.

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 16 Dec 2020 at 15:40

Glad that’s all over how is he feeling 

 

Have an amazing Xmas lots of love

Carl and Rachel.

User
Posted 16 Dec 2020 at 16:13

Hi Carl

Thanks so much. He feels relieved he’s made it through the treatment without too many major  side effects. He says he’s met some lovely people. He says it’s another hurdle he’s got over and it’s now time to relax and enjoy Christmas with our family.

Hope you are doing Ok. Sending our best wishes to you and Rachel for a peaceful Christmas and better health in the New Year x

User
Posted 16 Dec 2020 at 17:33
I bet he’s glad it’s all over. Good luck and enjoy Xmas

If life gives you lemons , then make lemonade

User
Posted 16 Dec 2020 at 22:46

Thanks Chris. The alarm is now knocked off !! 

Wishing you a peaceful Christmas.

User
Posted 16 Dec 2020 at 22:51
That's great news! Glad to hear he got through it without too many issues. Be aware, though, that side-effects peak about 2-4 weeks after treatments ends (you carry on cooking!) so don't get stress if things do get worse for a while. It's entirely normal.

Best wishes,

Chris

User
Posted 17 Dec 2020 at 09:54

Thanks Chris

We will bear that in mind.
Also The RT hasn’t affected his continence so far which he luckily regained quickly after the op. We were warned this was a possibility.

Hope you have a peaceful Christmas.

User
Posted 17 Dec 2020 at 16:30
You too, Lexi!

Best wishes,

Chris

 
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