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

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

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

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.

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

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