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Diagnosed today - trying to stay calm waiting for face-to-face appointment

User
Posted 09 Aug 2017 at 20:26
I'm 47 and after elevated PSA reading of 8.5 had further investigations. Following two negative DREs and an MRI scan suggesting growth "on the surface" of both sides of the prostate (but nothing in bone or bladder that could be seen) I had a TRUS biopsy. I just spoke to my specialist nurse on the phone and she said that the results are back. 5 out of 6 cores on both sides came back positive and overall I have a Gleason score of 6.

I now have to wait for an appointment with my consultant and am trying to stay calm. I'm happy that the score is 6, but worried about 10 out of 12 cores being positive. I also wasn't sure what the MRI results mean.

I have questions swirling around in my head: Is this likely to be localised still? Does the size of the cancer mean that nerve sparing surgery is less likely? How quickly does treatment usually follow diagnosis? When will I *really* know what my prognosis is, and how on earth do I keep calm until then?

At the moment, I'm struggling a bit because I share childcare with my ex and it's difficult to have to hide how I'm feeling from my kids (7 and 12) but can't really tell them until I know for sure what it's all going to mean.

Sorry for offloading all this in a post, but feeling a bit lost amongst this all.

S

User
Posted 10 Aug 2017 at 07:26

Hello Yaffle.

Firstly, no need to apologise. e all understand how you feel at this point in your diagnosis.

A Gleason of 6 is the lowest there is and the first number shows the aggressiveness so both being low is a good sign.

If you download "The Toolkit" it will give you the various treatment options available and may help you form questions for your next apppointment

It's not easy keeping calm when you are first told you have PC, especially when you have childcare to take into consideration.

Have you discussed the situation with your ex?

I'm sure others will be along with advice so hang in there and try not to worry

We can't control the winds - but we can adjust our sails
User
Posted 10 Aug 2017 at 07:47

Hi there,

My husband was diagnosed in December 2016 also with low risk G6 and I remember the day so well! Feeling for you.

I would recommend as Johsan says you find out all the options so are fully prepared. My husband was offered

- active surveillance
- surgery
- radiotherapy

The 2 radical options have quality of life impact so full knowledge is key before any steps are taken.

The main site here has great links to the ProtecT trial which shows the risks of potential over treatment are still a problem in the UK. I suggest you have a read.

The threads on here also give great insight into people's personal journeys but of course some are diagnosed with very agressive PCa so those journeys inevitably are very different. It seems to be a very variable disease so keep that in mind.

Please do ask if you have any questions. The members here are very experienced. We are 8 months post diagnosis now.

Regards

Clare


User
Posted 10 Aug 2017 at 09:38

Hi Yaffle,

Welcome to the site all of us on here have been through the same worrying time as you when we where first diagnosed so try not to worry as your outlook by your Gleason score is low so as Joshan said look up all the questions and write them down to take to the specialist with you and ask them to explain all the options in full and side affects to you before you make any decisions.

I am 11 months on after Brachytherapy and a Gleason of 3+4=7 and doing well with no major problems to date.I think they will offer you most of the options so it will be a lot to think about but don't rush into it.I was lucky to talk to two different Specialists the same day and i think they both thought that their treatment was the best way to go.

I still have thoughts about if I  had the right procedure but looking back at least i had a choice as many members on here did not.

I wish you well on your journey and would be pleased to offer any help i can in the future.

John.

Edited by member 10 Aug 2017 at 11:16  | Reason: Not specified

User
Posted 10 Aug 2017 at 20:26

Hi, I can only add to what others have said . . . in my experience numbers mean a lot, by that I mean that the doctors base their decisions on those numbers and your numbers are better than most others here; that's good news for you and something you can focus on as a good thing i.e. you've got it, tough, but your prospects on every level are good.

User
Posted 10 Aug 2017 at 20:45

Yaffle, don't over-fixate about the 10 positive cores out of 12. You were fortunate to be in an area where they offer MRI prior to biopsy, which meant the urologist knew where to concentrate on for samples. If you had not had a scan first and the cores were taken from lots of different parts of the gland, you may have had fewer positive cores. It doesn't necessarily mean that the whole gland is cancerous; ask them to clarify how extensive it is when you go for the full set of results.

Did they actually say it was 'on the surface' or could they have said it was 'near the surface'? There is a world of difference between the two, in terms of treatment options and long term impact. It isn't the size of a tumour that makes nerve-sparing more or less likely; it is how close the tumour is to the surface + whether there is any indication of seminal vesicle invasion.

When will you *really* know whether treatment has worked? General rule is that if you manage to get an undetectable PSA for 5 years after surgery or radiotherapy, you can start to relax a bit and move to annual PSA tests. The official point for achieving remission is 10 years of undetectable PSA (undetectable being a PSA of 0.1 or less). having said that, my dad got a lovely letter from the NHS telling him he was in remission exactly 10 years after he had the op but the cancer came back 3 years later. You will hopefully have lots of treatment options and be offered radical (curative) treatment but in reality you will have PSA tests for the rest of your life, knowing that it could come back.

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

User
Posted 10 Aug 2017 at 23:47

Thank you so much for all your kind replies. It means a lot and makes me feel a bit less alone with this.

I have spoken to my ex and we are thinking about how best to talk to the kids. They went through our break up only a year ago, so are already quite unsettled, so this is pretty horrible timing (but then again, I guess it always is!)

Lyn - that's an excellent point about the urologist being more directed with her samples given the prior MRI. I hadn't thought of that. They did say "on the surface", so I'm bracing myself for non-nerve-sparing (again, what terrible timing to be recently single...). However, the urologist wasn't convinced on the basis of what she could see on the ultrasound. She thought it looked like it was contained. I guess I need to wait to see what the consultant appointment brings up. Apparently the consultant I'm seeing is very good and a particular pioneer in robotic surgery, so that's something - although I imagine he'll be biased towards the treatment that he's a specialist in.

Thanks again,
S

Edited by member 11 Aug 2017 at 07:04  | Reason: Not specified

User
Posted 11 Aug 2017 at 00:51

We don't have many rules on here but naming medics is a no-no so best to edit your post.

Also, don't assume that robotic will be better than open surgery, or that surgery will be better than radiotherapy or brachytherapy, particularly as you are recently single. My husband opted for open surgery because in his particular circumstance the urologist felt that as a) the best chance of getting it all and b) the best chance of regaining erections. Not a popular view among men that have had robotic RP but the data suggests that robotic is slightly more likely to cause ED, there is a slightly higher chance of a positive margin and slightly higher chance of incontinence and / or hernia. It also means longer on the operating table. The advantage it has over open surgery is a) less time in hospital b) less blood loss c) quicker recovery / return to work.

In our case, John decided that he would have the longer hospital stay / longer time off work in the hope of better outcome - the decision was also influenced by the fact that he had scar tissue from previous abdominal surgery (his appendix when he was younger) which can make robotic more difficult.

Generally, surgeons recommend surgery and oncologists recommend radiotherapy so don't make decisions until you have read the toolkit, seen both a surgeon and an oncologist and got all the facts.

Personally, I can't see why the children would need to know yet. Once you have full info and a treatment plan, you can decide how much info to give them; if you end up opting for RT or brachy they wouldn't necessarily be aware that you had anything wrong with you so detail could be limited.

Edited by member 11 Aug 2017 at 00:52  | Reason: Not specified

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

User
Posted 11 Aug 2017 at 07:29
Remember to take time to consider all options you are given. Clearly your surgeon is going to recommend surgery but it's such a big decision get full facts and take time particularly if you are given all options.

You are right he will be biased towards his treatment speciality ...

Let's hope you get all options

Regards

Clare

User
Posted 03 Sep 2017 at 09:44

I just wanted to quickly update on the outcome of my meeting with the surgeon. As expected he did advocate surgery (robotic). They are calling my cancer stage 2/3 since they think it might have broken through the capsule on one side. It seems that this rules out brachytherapy, but I am seeing the oncologist tomorrow to see what they say. I guess they might suggest HT followed by external beam radiotherapy, but for some reason that doesn't feel right for me. I realise that there is a slightly better outcome in terms of function (ED and incontinence) afterwards but I'm not sure what the stats are on this.

Me and my ex have told the kids now and that went amazingly well I'm really happy to say! The leaflet from Macmillan helped a lot and they don't seem too worried. My youngest (7) wanted to watch a video of the operation on YouTube (yikes!) which she thought was very cool. I suspect she might be a surgeon when she grows up!

S

User
Posted 03 Sep 2017 at 10:57

Thanks for the update. My kids are grown ups and telling them was hard enough so pleased it went so well.

I hope the meeting tomorrow gives you options.

Are they sending you for a further scan to clarify the 'think it might have broken through the capsule on one side'?

Good luck.

Clare

 
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