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Diagnosed last night

User
Posted 10 January 2018 20:33:49(UTC)

Having been expecting the worst for weeks and weeks I finally received official results for biopsy, MRI and bone scan last night. This all started after having PSA score of 18 in November then after seeing a Urologist a subsequent score of 23. My Gleason score is 9 which is very high but the bone scan showed as clear. I have been offered robotic assisted prostatectomy or radical radiation therapy both of which are expected to provide curative to the cancer. Am I being niaive by feeling almost happy about this? I've been terrified for weeks? Has anyone any advice on pros and cons of the 2 treatments? As my Gleason score was so high the other options were not deemed suitable.

User
Posted 10 January 2018 21:17:58(UTC)

You said in a previous post that the urologist thought it was in your seminal vesicles and pelvic lymph nodes? If that is the case, I would be a bit worried that they might be being a bit over-confident with the promise of cure. Or has the urologist changed his mind about the extent of the tumour?

I would be tempted to ask a few more questions like:-

- if I have surgery, how likely am I to need adjuvant radiotherapy?
- if I have radiotherapy, will you also be targeting the nearby lymph nodes?
- if i have radiotherapy, will I also have hormone treatment and if so, for how long?

I don't think you are being naive - the prospect of diagnosis is often worse than the reality and a) you now know what you are dealing with and b) it's not as bad as your worst fears

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


User
Posted 10 January 2018 22:12:26(UTC)

I spoke about these two specific items today with the Nurse help line on this site. She said they would always remove seminal vesicles as part of this procedure. I asked my consultant specifically if this was a curative process whether surgery or radiotherapy and he said yes......... I will ask if I will need/possibly need radiotherapy and/or hormone.
Thank you.

User
Posted 10 January 2018 22:23:12(UTC)

Yes the seminal vesicles are always removed as part of RP. But statistically, the likelihood of recurrence is much higher with seminal vesicle invasion (SVI) and the risk of recurrence is also significantly higher with G9. So you were wise to talk it through with a specialist nurse.

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


User
Posted 10 January 2018 22:40:26(UTC)

Why doesn't my urologist say this? The nurses don't say it either. This takes me back to when my father had all of this and we all thought he was going to pull through but then a GP friend of my parents later said that they always knew he had no chance.......

User
Posted 10 January 2018 22:44:04(UTC)

Hi, In my opinion you're quite right to be happy about this.  In effect they're offering you a cure.  The next bit of happiness is when you get a date to start treatment.  Then if it's an operation the next stage of happiness arrives when you wake up and feel alright.  From then on it's a matter of healing and getting a dose of happiness after good results of each blood test.  It's not all plain sailing and might not work out but happiness is allowed and is to be held onto as long as you can.

Best Wishes
Peter

 

User
Posted 10 January 2018 22:52:43(UTC)

Because it is statistics - a generalisation. But sensible to ask all the questions before you decide on treatment rather than have an over-optimistic view of what you are choosing between and then later finding out the information no one told you.

If you were my husband, brother, friend I would be making an appointment to see an oncologist before making a treatment choice.

Re your dad, you haven’t really told us much about his diagnosis or treatment path. Was he diagnosed too late? Or did he have treatment and then it came back? Diagnosis and treatments have progressed a lot since then. And the GP had the benefit of hindsight and could perhaps have kept his thoughts to himself :-(

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


User
Posted 10 January 2018 22:59:00(UTC)

I've got a meeting with the surgeon on Saturday morning. If I want I can press the button straight away. Not sure if its worth speaking to the radiologist which will likely be Wednesday but I'm sure nothing can change in that short a time. So moving forward I can ask about these specific items to both parties with regard to "recurrence" etc. What are the right questions to ask to clarify exactly success expectancy etc?

User
Posted 10 January 2018 23:11:30(UTC)

Hi Lyn, I'm not so sure as he died 27 years ago and I was at University for all of the time barring holidays........ The radiologist is the local oncologist expert and is the north east expert in radiotherapy treatment. The surgery is the only place in the north east that can do this procedure. I just don't want to suddenly think that I will be ok only to fall. Thank you so much for your wise words, it is very much appreciated, you too Pete..... Good night.

User
Posted 11 January 2018 00:01:46(UTC)

They put all your stats into a nomogram which then predicts outcomes; you could ask whether your meds team uses it. The best known one is the Memorial Sloan Kettering version but it is American and they tend to have better outcomes than we do here in the UK. We were at St James in Leeds and they have adapted the MSK nomogram to reflect the results of recent years in Leeds and West Yorks. Results in the North East will be slightly worse than USA as well, I should think - it is all linked to socioeconomic groups, educational outcomes, local industry, statistics for men accessing health services, etc. Are you at the RVI?

When John was diagnosed, the urologist did it while we were sitting there and showed us that the outcomes for radiotherapy and surgery were likely to be the same but that John had a 55% likelihood of recurrence. That was also included in his diagnosis letter so we queried it (thinking it was a typo and meant to say 5%) but they confirmed it. John was in a tizz and didn’t really engage with anything he was told - didn’t believe he would have ED, didn’t believe it could come back, surgery was going to cure him and everything would get back to normal ... you get the picture? So he rushed into it and had the op. The nomogram was right; he had seminal vesicle invasion and bladder invasion, a biochemical recurrence and ended up with salvage RT/HT 2 years later. That was nearly 6 years ago though and he bumbles along at 0.1 and tends not to think about his prostate except at PSA testing time so it isn’t all doom and gloom at all.

You could ask the doctor the questions I suggested earlier plus whether they use a nomogram perhaps? And especially, clarify whether the comment he made about lymph node involvement was a red herring or was it confirmed in the scans?

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


User
Posted 11 January 2018 00:04:14(UTC)

Also ask whether your case was discussed at a multi-disciplinary meeting or whether it is solely the surgeon’s view

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


User
Posted 11 January 2018 09:49:34(UTC)

I am at the Newcastle Nuffield. I was told the surgery would remove the seminal vesicles and lymph nodes. I have had all reviews with a urologist who has not done anything else other than a DRE.

User
Posted 11 January 2018 10:11:39(UTC)

That may complicate things a little bit but even more convinced now that you should ask for a referral to see the oncologist before you make a decision.

Another thing to ask on Saturday - 'will this be nerve sparing surgery?' Also, if you have the op privately, what arrangements do they have in place for after-care, referral to ED clinic, etc. John's op was private and we only realised later that this meant he had no access to a clinical nurse specialist, incontinence service etc and we had to really fight to get a referral to the local NHS ED clinic.

Another member here who lives in Yorkshire had his op privately in Leeds and never saw the surgeon again after he was wheeled into theatre. He never had a post op review or even the lab results and has had to rely totally on his GP since then because his local NHS urology service wouldn't pick him back up. So check, check, check :-(

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


User
Posted 11 January 2018 11:39:03(UTC)

Am I being niaive by feeling almost happy about this?

 

No Rich - you should be happy - they have found your cancer and are going to treat it - keep positive and be aware that success rates nowadays are very high.

Get the Toolkit and have a read in the treatment section of this community and decide whats best for you. Everyone is different - its really down to how early they detect your cancer - you can have a low gleason and still have cancer spread or a high gleason but still be contained - your gleason score is high and this probably means your cancer is quite aggressive it does not necessarily mean it has spread yet - However if I were you I would be looking to make a decision on treatment fairly soon. The reason the doctors are giving you the choice should indicate that they see the two treatment routes as equally effective - definitely speak to an oncologist and a surgeon (check if your gleason is 5+4 or 4+5 and if the biopsy showed positive at the margin (edge) of the prostate) and write down all the questions you have because its easy to come out of these meetings and think oh damn I wish I had asked this or that. No questions are stupid or inappropriate - for instance I asked my consultant surgeon if I had a choice of surgeons (yes) and my oncologist if his radiotherapy machines were any good ! (they were very new and good).

Personally I had radiotherapy/hormone therapy however this route is a longer term treatment which takes around 6 months to complete. My gleason was 7 but if I had had gleason 9 like you I might have been keener to go down the surgery route as this could be completed in  a matter of weeks.

Tony

 

User
Posted 11 January 2018 12:03:48(UTC)
I thought some more about this after posting last night and recalled that my Gleason was upgraded from 4+3 to 4+4 when they got my prostate out. As it was said to be near the edge I was always wanting it out asap. However post op a consultant I saw said the op was definitely the right decision with a 4+4. How big and close to the edge is your case?

I said I didn't want to know details and how big it was and just wanted to get on with it, but the surgeon wrote it on the letter he sent my GP, copy to me, 13mm. Which seemed quite large although I've read it's not too bad.
User
Posted 11 January 2018 12:42:23(UTC)

I presume its over the edge as I was told at MRI review (before biopsy) that he thought it had moved into the seminal vesicles and possibly the lymph nodes. I would have the op this afternoon if I could! My urologist seems very nice but nice is not what I need. It's £120 a visit (15 mins max) and he doesn't say "Get in touch if you have any questions". I am learning more about this each day. Obviously a G9 score is very high but I don't fully understand the implications of this. I suppose it means that even after any surgery the chance of recurrence is so much higher for me (>50%?). Meeting surgeon on Saturday and radiologist next Wednesday I think. Hopefully things will happen quickly after that. My brother is a dentist and he says I should have the operation coupled with RT/HT too. I am/was supposed to be going to work in Japan in 3 months for 18 months but I guess thats all off!!!

User
Posted 11 January 2018 12:43:51(UTC)

Sorry I forgot to add:
the right lobe has 50% from biopsy and the left side 70%

User
Posted 11 January 2018 13:10:41(UTC)

The seminal vesicles actually enter the prostate so you can have fully contained cancer and still have SVI. Lymph node involvement is also possible with contained cancer; contained means that the primary cancer cells are still within the gland and haven't broken the surface. It travels to the lymph nodes via the lymphatic fluid not by bursting out of the edges.

So T2 N1 M1 means it is contained in the gland but there are mets in the lymph nodes and bones. T4 N0 M0 means it has burst out of the gland and affected nearby organs but there are no mets.

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


User
Posted 11 January 2018 13:14:29(UTC)

Thank you. You really are extremely helpful!!
I wasn't given my staging when I was given biopsy review. Should he have given this to me and should I get in touch to request to be told what it is? I had assumed I was probably T4 as I thought it wasn't contained.

User
Posted 11 January 2018 13:34:34(UTC)
Originally Posted by: Online Community Member

Sorry I forgot to add:
the right lobe has 50% from biopsy and the left side 70%



Ask them to clarify - is that 70%/50% of each core or 70%/50% of the cores taken? It is unlikely that the biopsy would have shown that 70%/50% of the gland is affected; usually only a scan would produce that kind of statistic.


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


User
Posted 11 January 2018 13:47:19(UTC)

Ok I will but I would have thought it was 70%/50% of each core as he only disclosed this at the biopsy review last Tuesday 9th. The MRI review was on 12th December where he didn't think there was anything in the RH lobe.

Should I request the staging score? I have made a list of the other questions you have suggested and will follow those up in due course.

User
Posted 11 January 2018 14:48:52(UTC)
The Urology Consultant gave me half an hour to discuss 3 options till I started talking about posters on his wall. Then he transferred me to the surgeon who drew a drawing of where the tumour was and how he'd remove it and the prostate through a hole he'd cut in my skin in the middle of my stomach. Chopping the sphincter and reattaching it to the bladder. He made it sound straightforward and said one night in hospital, one week with catheter, 1wk to 6 months dry, ED will need tablets.

It was then that I decided the location of the tumour in the apex was well away from the bladder which might be gòod. That's my theory, not that I know. He said it didn't usually go to the sphincter so I thought if it's contained and not spread there's a reasonable chance of being clear for quite a while.

I looked him up on the NHS, private hospital sites and the BAUS site and he'd done a lot of ops which gave me confidence.



User
Posted 11 January 2018 15:00:41(UTC)

Ok thanks for that.

I know that both the chaps who will do the operation and the radiotherapist both have fantastic reputations.

I am still wondering why I have not been told my staging? Do I have the right to get in touch with the Hospital/Urologist to request this information? I want to know if it is considered to be contained or not and it surely as useful a metric as the Gleason score?

User
Posted 11 January 2018 15:09:56(UTC)

Is it not on your diagnosis letter? If you haven't had one of those it might just be because your appointment was only a couple of days ago. The letter will be sent to your GP but many consultants' secretaries also post a copy to the patient.

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


User
Posted 11 January 2018 15:16:28(UTC)

Ah, of course!. Thank you Lyn. They have sent me a copy following every action so far so I'll wait a day or two for that.

 
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