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End of RT....21wks post op

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User

Posted 26 Jul 2020 at 13:49

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 😀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 06:24

Hope all goes well Lexi

User

Posted 27 Jul 2020 at 11:16

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 22:47

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 28 Jul 2020 at 23:26

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 28 Jul 2020 at 23:29 | Reason: Spelling

User

Posted 29 Jul 2020 at 00:21

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 06:32

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

_____

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 06:40

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 🎉🎈🎉 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 06:42 | Reason: Add in extra sentence

User

Posted 29 Jul 2020 at 07:08

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

Angex

User

Posted 29 Jul 2020 at 07:59

Originally Posted by: Online Community Member

First small bowel movement this morning 🎉🎈🎉 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. 😀

_____

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 08:12

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 😀after six weeks of walking)

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

User

Posted 29 Jul 2020 at 08:22

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 😀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 08:23

Hi Lexi, fantastic to hear that your husband is home & recovering well after surgery.

Mel

User

Posted 29 Jul 2020 at 10:12

Lexie

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

Thanks Chris

User

Posted 29 Jul 2020 at 12:09

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 06:46

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

_____

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 08:20

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 👍🏼🙏🏼

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

Edited by member 05 Aug 2020 at 08:30 | Reason: Not specified

User

Posted 03 Sep 2020 at 13:34

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 13:35 | Reason: Change title

User

Posted 03 Sep 2020 at 13:48

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 16:52 | Reason: Not specified

User

Posted 03 Sep 2020 at 15:02

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

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