Just been diagnosed - a few questions - Start here! - Prostate Cancer UK Online Community

User

Posted 06 Nov 2016 at 13:28

Hi,

I am 54 and was diagnosed with prostate cancer two days ago. Here is what I know about my results:-

MRI=clear

No Bone scan

TRUS biopsy results:-

Stage: T1c

Gleason: 3+4=7

9 out of 12 samples showed cancerous cells. Not certain, but I think when I asked (all a bit of a blur) that only one sample had gleason=4.

I have been advised because of my age to have treatment. I was told the cancer is slow growing so I have 4 weeks to decide what treatment to have, I haven't decided yet so I am gathering information in order to make an informed decision. I have looked through here but there is so much information I thought I would get my post out here and get some information back, so I am sorry if what I want is already out here.

My questions and concerns are:

First of all, is having no treatment an option? I am aware of recent study over 10 years showing that two groups of patients, one having treatment, and the other not, had no difference in survival rate and yet one group had to go through the disadvantages of treatment and the other didn't. I did mention this to the consultant and he was aware of it, but dismissed it on two counts. One was that he thought the people in the study were older than me (I haven't checked that yet) and that the study only covered a 10 year period, which takes me to 64 years old. This means that after 10 years I would be in the unknown.

Although I have been told it s slow growing, I understand there is a risk that the results are not totally accurate and so my situation may be worse than I think. The fact is that although I have cancer from the biopsy the MRI didn't show anything so I have my doubts about the accuracy of the results. In this case should I be pushing for an earlier decision on the op?

Another concern is that I suffer lower back pain. I mentioned this early on at the GP stage and kind of dismissed it as I have suffered this for 10 years or more, and I wouldn't say it is any worse than normal. My concern now is that I should have had a precautionary bone scan, should I be concerned or should other things have shown in the results before having one?

Sorry again if I am causing people to repeat stuff,

Thanks in advance for your replies

Mark

User

Posted 06 Nov 2016 at 13:58

Mark

I am sorry to hear your news and sorry that I can't answer your questions. I'm very new here and I am due to get my results on Wednesday. I had a mpMRI scan and it showed that clinically significant cancer is highly likely to be present. At my TRUS biopsy, I was told to expect to be told the extent of my cancer, not whether or not I had it.

I do hope a few people answer your questions as I think it looks likely on Wednesday afternoon I may well need to be asking the same ones. We may be on a very similar journey.

I wish you well with whatever treatment option you decide upon. Call one of the specialist nurses from PCUK to discuss options. They are very well informed.

Walter

User

Posted 06 Nov 2016 at 14:47

Thank you for your reply Walter. I wish you the best for your results - keeping my fingers crossed for you. I have rang the nurses before my results, and as you say they are very good, I may just try that. I do have a nurse assigned to me from my local urology clinic, but unfortunately they do not take calls on the weekend.

Mark

User

Posted 06 Nov 2016 at 15:44

Hi Mark and welcome to the forum, though sorry it is because you have been diagnosed with PCa.

Having no treatment but being monitored (Active Surveillance) is an option but you must decide whether it is the one for you. This would enable you to avoid the side effects of treatment for at least some time if not indefinitely. However, you are relatively young to have been diagnosed with PCa and it has been found at an early stage. It may develop faster than realised and there is a risk that it progresses more quickly than checks can identify, in which case 'containment' may result, rather than 'cure', ie radical treatment be less successful if not given in good time. So accepting AS, it would be important that you are carefully monitored and in need treated whilst in this window of opportunity. This would most likely entail a regular PSA tests, also MRI/Biopsy as considered appropriate. Your consultant is in the best position to advise on your situation.

I think you would find it helpful to obtain the 'Toolkit' from the publications section on the main part of this charity, it gives a vary good basis to help understand this disease and the way it is treated.

Better scans can better help identify the degree of PCa although even these do not always show it.

Edited by member 06 Nov 2016 at 15:46 | Reason: Not specified

Barry

User

Posted 06 Nov 2016 at 19:16

Hi Mark welcome to our group my first results where close to yours gleason 3+4 T1 and most samples showed cancerous cells , Told it was mid range and action would be needed at my age 60 , I had RP and post op results came in at Gleason 7 but promoted to T3 as positive margins at base of prostrate I was offered early adjuvant RT even though PSA pre op was undetectable which i did have this so I made my choice and have no regrets you will have to make yours but when you do its onward and upward All the best Andy

Edited by member 06 Nov 2016 at 19:18 | Reason: Not specified

User

Posted 06 Nov 2016 at 19:32

Welcome to the group, if you have a look at my profile you can read my OH journey, at the moment he is on AS, PSA is slowly rising and next blood test is at the end of January if it continues to rise he might have to look at coming off AS and take the next step. Still very new to this but any questions just ask.

User

Posted 06 Nov 2016 at 20:23

Hi Mark,

As others have said, the Gleason score you have been given (as well as the staging), is the result of the biopsy and MRI scan.

As other have found, me included, that once the prostrate is removed and is viewed in it's entirely under a microscope, the score and staging can change for the worse (or for the better in some cases!). Therefore, it does come down in part to your approach to risk, the risk of the cancer spreading (or not) in not having / delaying treatment vs the side effects associated with having treatment (highly likely, especially in the short to medium term).

Flexi

ps. I doubt very much that your backache is PCA related, considering your results.

User

Posted 06 Nov 2016 at 21:11

Thank you everybody for your replies. I have chatted with Andy, and have read Flexi's story on his profile and I am very grateful for the information given.

At the moment I am on a bit of an emotional rollercoaster. Sometimes I can put it to the back of my mind, sometimes I am very anxious about it. It does help I think to talk to other people. Luckily I have a brilliant family behind me who are very supportive.

Thanks again

Mark

User

Posted 06 Nov 2016 at 21:31

Active surveillance is the right choice for many men, either in the hope that it will be a long term strategy or as a holding position to give time to make the right decisions, deal with other things going on etc (e.g. a very young man might be right to go on AS until he has had a family, frozen sperm, that kind of thing) but in your case I would want to listen to the specialist's instincts. The fact that you are T1c makes a difference - if you were T1a or b he might be more positive.

That doesn't mean that you have to rush into decisions that you might regret though - take time to read and think. If not already done so, ask to see an oncologist as well as a surgeon ... surgeons recommend surgery and oncologists tend to recommend radiotherapy, brachytherapy etc so it is always worth talking to these people to see what the likely outcomes would be for you.

My husband had surgery 5 weeks after diagnosis, with a T1 and a scan that suggested the cancer was so tiny it couldn't even be seen. The surgeon recommended that we take a bit of a break before treatment .... go for a holiday and do nice things (like sex) but John was desperate to get the thing cut out of him and did not accept the advice. For a long time afterwards, we both regretted that - it would have been nice to have a little bit of 'normal' to look back on afterwards. But hindsight is a wonderful thing.

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

Notification

Just been diagnosed - a few questions

Join the online community now.