Question about testing and waiting

Hi  Sarah

Yes, that sounds OK.

I was on active surveillance for 4 years and in that time my PSA  went from about 4 to about 12 which is when I started treatment.

Would be  helpful if the Gleeson was low ie about 6 or 7 to show that it's non aggressive.

Other than that needs a MRi yearly to check that its not growing too large or near the gland edge

My tumour size went from 3mm to 13mm in the 4 years on AS.

best wishes

Steve

Hi SarahH21 , it all sounds quite reasonable and is generally referred to as Active Surveillance (AS).  This is where Prostate Cancer (PCa) is either found or suspected but is growing so slowly that it isn’t worth treating.  He may continue on this for all his life.  If however, things start to move, AS will pick it up and it would generally be treatable.  Hope this helps, but please come back if you have any further questions. Best wishes. David

Hello SarahH21  Welcome back to our little part of the Community

Yes, that sounds right. He's more than likely got a low Gleason Score, the cancer is contained in the the prostate and with it not being too aggressive he's on "watch and wait" or "active surveillance".  As his PSA is rising slowly they may wait a number of years before they need to take any action. Below is the link to the very good publication on "active surveillance" from Prostate Cancer UK.

In a nutshell it's cancer but not needing treatment now.

.shop.prostatecanceruk.org/.../active-surveillance

I hope that puts your mind at rest. I look forward to seeing you tomorrow if you are at the Community Champions meeting.

Kind regards - Brian xx

Thank you Grundo for your reply. It’s been like dragging teeth today trying to get information out of him and he’s not mentioned the Gleason score yet. Next time he’s on the phone in a week or so I’ll be able to find out more. 

I’m a bit annoyed he delayed telling me because he felt a fraud in comparison to my particular cancer and surgery-I’m not a fan of being kept in the dark and there was no need! 

Appreciate your help Steve, that’s very informative and your response has definitely helped in my understanding.

Sarah xxx

Hi David2017 

Thank you for your reply-I can see the benefit of these monthly checks in getting things actioned quickly if necessary. He seems very unconcerned about things as it stands, and hopefully AS can continue with no issues. Very helpful of you to respond to me so quickly.

Sarah xx

Hi Brian

I didn't think I’d be back here after my father in law’s cancer last year, so had to join the group again to post! 

You've summed it up nicely there, and Steve and David have been very helpful which I really appreciate. I’ll go and have a read through the guide on the link-it’s useful for me to have a better understanding in case he “forgets” to tell me things!

Luckily we have a very good relationship despite being divorced for 12 years, and obviously I’m concerned about him, but definitely feel reassured after reading the replies here. 

Thank you very much for your help, as always-my goodness you have a great group of members who respond very quickly and it’s such a help to be able to get good advice so quickly from the experts.

You will miss seeing me tomorrow at the meet up but hope it does well! Keep counting down the days until Turkey!

Sarah xx

Hi Sarah.

Yes, that sounds right. My husband was on active surveillance for many years whilst the PSA gradually tracked up. During the early days biopsies showed that he had areas in the prostate called ASAP and PIN, which could be classified as areas suspicious of being cancer due to the morphology of the cells. Grundo is right about having an annual scan, preferably MRI, to keep an eye on things. My husband is one of the awkward ones whose cancer is what is called - non secreting, so the PSA is not always a good indicator on its own that the cancer is controlled. In hubby's case the move from active surveillance to not curable was very rapid, but it is still treatable 4 years on. Nowadays treatment for prostate cancer has come on in leaps and bounds with many different ways of tackling it so, provided it is monitored and treated when appropriate there is no reason why your ex shouldn't have a normal lifespan.

Please come back with any questions and well done for being a Champion, your time and commitment is greatly appreciated. Just a gentle nudge, but have you discussed genetic testing for your children as both parents have cancer?

Hi Sarah, hope you are well, the term borderline cancer is a bit of an anomaly regarding prostate cancer, referring to a tumour below Gleason 6 which a lot of the experts in prostate cancer don't see it as a fully developed tumour, so caught very early and no urgency with treatment and if/when it is needed will be done to cure. take care.

Eddie

Hi Alwayshope and thank you for replying from your experience with your husband.

I’m learning a lot of new things today! I’m very glad that despite being incurable your husband is still treatable and I hope he is doing well. I thought that perhaps the psa might not be a useful indicator on its own, but didn’t know about the non-secreting issue, so thank you for explaining that.

The variety of ways for treating prostate cancer is quite a revelation, and I found the guide in Brian’s link very useful. I didn’t know the difference between AS and watchful waiting, so another thing learned! My ex is very fit and healthy in general, but the only thing which bothers me as a niggle at the back of my mind is a shadow on his stomach found on a scan which multiple tests have failed to identify to date.

To be honest, I have never actually given any thought to genetic testing for my daughters. Obviously having been through advanced cervical cancer myself I have had concerns for both my girls as regards gynaecological issues and have always reminded them to attend their cervical screenings and let me know about any outcomes, which they have done. Maybe it’s time to think about that again given now the tally is two parents and 3 out of 4 grandparents-both my own parents and my ex husbands mum. 

Thank you for your appreciation of our role as Community Champs-I’m certain that Brian would agree with me that we love our role and enjoy helping others within the community. It’s extremely rewarding. 

Sarah xx

Hi eddiel and thank you for your reply.

I am well thank you, and hope things are going along well for you too. I found it a strange term as I tend to think of things in black or white as regards cancer-either it is or it isn’t. I thought my daughter might have misunderstood, or her dad was keeping something from her, but your explanation has certainly helped me understand, and it makes sense,so thank you for that.

Sarah xx