I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

End of RT....21wks post op

Email this conversation Print this conversation

User

Posted 04 Sep 2020 at 14:16

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 15:13

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 15:34

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 17:21 | Reason: Not specified

User

Posted 04 Sep 2020 at 16:05

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 21:07

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 22:13

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 😋

User

Posted 06 Sep 2020 at 08:23

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 10:32

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 12:52

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 16:04

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 18:13

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 19:35

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 21:10

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 22:17

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 22:25

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 07:11

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 20:12

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. 😀

_____

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 20:40

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 15:14

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 15:55

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

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.