Active Surveillance - Ten Years On - Localised cancer - Prostate Cancer UK Online Community

User

Posted 20 May 2014 at 17:25

Well, it's now ten years on from being diagnosed with PC via the ProtecT Study and nine years since I joined the forum.

I am still on active surveillance with six monthly PSA tests, an annual meeting with my consultant at Addenbookes (with DRE) and no apparent progression of the cancer. I have always said that I am one of the 'lucky' ones to have low-grade PC which has not required any physical intervention (so far).

The reason for posting at this time is to emphasise that Active Surveillance is a viable option for some men with this cancer. Without going in to all the pros and cons I would say that it is not a 'copout' - living with the knowledge of having the cancer inside you and the stress of waiting for test results at regular intervals is not an easy option.

With the ongoing support of my consultant I am satisfied that, for me, it was the right decision at the time. It is interesting to note that over the past ten years the concept of AS has become more and more 'mainstream'.

If any forum member is considering taking this route and wishes to discuss any aspect of active surveillance I am more than happy to talk via private email.

PS - I could not resist adding the avatar to my profile.

Best wishes to all

David

User

Posted 20 May 2014 at 20:44

Hello David. My husband was on AS from Jan 2013 until March 2014. Neither of us saw AS as a "cop out" but as a way of coping with prostate cancer. As far as we were (are) concerned it was a relevant option and we may well have been as lucky as yourself. What's the stock saying "You'll likely die WITH it rather than OF it"

I can fully understand those men for whom the only solution is to remove the offending article and get on with life and worry about any possible side effects later.

After all, everyone is different - you only have to read the postings on here to know that you can have the same or similar PSA, Gleasons scores and stages and not everyone will choose the same route and of those that do ie surgery, not all of them will have continence or ED problems.

For us surgery was a definite nono. For some, it's their first thought.

I would agree with you that AS is a definite and viable option to consider, as long as you are carefully monitored.

BUT it's not for everyone.

Glad you are still OK. It is good to hear the AS can be used for so long.

We can't control the winds - but we can adjust our sails

User

Posted 20 May 2014 at 21:33

Hi John

Good luck for the 3rd June, I hope all goes well for you.

David

User

Posted 24 May 2014 at 13:44

My OH was diagnosed earlier this year with low grade PCa and put on active surveillance. The consultant said that he would continue to have PSA tests and if all ok there would be no need for any further intervention. If the levels rose then they would suggest the biopsy that takes 32 pieces, which OH wasn't sure about as he had a bad infection after his first biopsy which took several weeks to go.

Consultant said he would be discussing OH's case in the weekly management team meeting with the top consultants at Kings Hospital and would let us know what they thought but he felt at the time active surveillance was a good idea and we were introduced to the oncology nurse who would be our contact. After about a month OH got sent an appointment for an MRI scan, which we duly went up for. Two weeks ago we were sent an appointment to get the results. Turned up at the hospital and Consultant was bemused as to why we were there because he couldn't give us the results until he'd gone back to the management team to discuss it with them!

To say we were disappointed is an understatement! We were quite cross, we'd already been worrying about what the results were and now we have to wait until the management team have discussed it before we find out! Its so annoying, more worry to add to the other problems of tinnitus, and irritable bowel and possible diverticulitis!

We know that we are getting good treatment and support overall and that obviously the consultant needs to discuss any further treatment with his team, but it would've been good to at least have our minds put at rest on the day, or at least told that there was something but they just wanted to double check everything.

Its very hard to stay positive when you don't get the information when you get sent an appointment - apparently it was a mistake!

Still, we are trying to remain positive, he doesn't want invasive treatment unless it has progressed and we are sure it hasn't. Mind you our friend's PSA level was a lot higher than OH's and his biopsy showed no cancer but he's not been offered anything else to deal with the high levels and is just waiting for a follow up appointment!

The waiting for the results is the worse thing, but no news is good news :)

User

Posted 24 May 2014 at 15:44

Hello B.P.

It is annoying, and worrying, but it can also happen the other way round. We have seen the oncologist first, opted for Active Surveillance, got our nurse etc.

We have had the surgeon telling us one set of results, double checked it with the nurse who altered our understanding of what was said but did say that the seminal vesicles were invaded only for there to be another change when we saw the RT oncologist because the MDT meeting was AFTER we had been told the results by the surgeon and they had downgraded us from T3a to T2 and no seminal vesicle invasion.

The worrying thing is that on the basis of T3a we may well have opted for surgery and it was only because my husband was reluctant to go down that road that we asked to see the RT consultant and have now been able to go with John's first treatment choice of Brachytherapy if AS was no longer possible.

All you can do is to try and keep positive and I know that isn't easy, speaking from experience.

Snap on tinnitus, IBS and Diverticulitis. Nuisance ain't it !!

We can't control the winds - but we can adjust our sails

User

Posted 30 May 2014 at 11:02

Hi Dave.

I'm like you on this one, PSA May 2009 0.02 after LRP at Addenbrookes, started having a very slow rise after 18 months now after 5 years 0.31, I feel fine and still no urgency to do anything about it, feel like the consultants are pushing me and I don't like being pushed!!

Best regards

Steve

"The mind is like a parachute, best when open"

User

Posted 29 Jun 2014 at 22:08

Hi again Dave,

I occasionally chirp up in response to your posts, recalling that just after diagnosis 6 years ago I remarked that you might well prove to be a good role model were I to pursue the ‘do nothing’ (AS) option. As you point out, it’s not necessarily the easiest option and not everybody can feel relaxed about the knowledge that a quantity of cancerous material is festering away, quietly or not. Neither is it actually ‘do nothing’, since regular monitoring via scans and further extensive biopsies is always part of the deal.

Good to see that both of us seem to be on the winning side so far, although not everybody will necessarily be so fortunate (as a friend on here on AS over the same period as myself has only just discovered). In my case there were additional treatment-effect factors associated with pre-existing urological damage, and it’s difficult to judge whether the thinking would have been different without that backdrop.

There is certainly increasing awareness that in many (if not most) cases there need be no headlong rush to commit to radical treatment options, such that short-term surveillance very often has a significant role. At minimum it may offer ‘thinking-time’ scope to help both patient and medics determine the most appropriate positive treatment to match individual circumstances. In some cases it may become the long haul strategy that we have chosen based on our own perception of the risks ; It’s an ongoing cost-benefit analysis where the benefits are perhaps more easily defined than the costs, given the great unknowns concerning probabilities that the downsides will come in – and the risks that playing the waiting game could impact treatment success.

Not an easy path, but no substantial regrets so far........

Cheers for now / David

Edited by member 29 Jun 2014 at 22:17 | Reason: Not specified

'It couldn't possibly happen to me....'

User

Posted 23 Sep 2014 at 23:49

I've been on AS since 2008 and now have PSA test every twelve months. Levels have been low : 1.2 to 1.6. I've developed a pain at the top inside of my right thigh. Tell myself it's nothing to do with PCa. Should I worry?

User

Posted 24 Sep 2014 at 01:07

See your GP, it could be a groin strain but best to get it checked rather than torment yourself with 'what ifs'

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

User

Posted 24 Sep 2014 at 07:02

Get it checked out TSK. Probably nothing to worry about in which case you've wasted a little of your own and the Doc's time.

Far better to waste it now than to have anything rear it's ugly head later because you didn't check .

Best Wishes Sandra

We can't control the winds - but we can adjust our sails

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