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AS Is it constant worry?

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User

Posted 13 Apr 2017 at 13:20

My husband has just been diagnosed following having what was diagnosed as prostatitis a year ago. Since then has had a TRUS and Template biopsy, PSA has fluctuated between 5 - 12, last done in September when it was 9.2.

Anyway results in and Gleason 3 + 3 T1 only 1 sample out of 12 positive. Met with urologist yesterday to discuss options, AS or surgery, and he very much gave us worst case scenario of both options.

Husband has decided to not rush into anything and will have PSA done in 3 months and take it from there.

I feel he will go down the AS route but my worry with this is it will just consume our lives, to me surgery would get it over and done with.

For those members on AS does it just become part of your life and you don't really think about it or is it just worry from one test to the next?

User

Posted 15 Apr 2017 at 11:33

Hi
I have now been on AS for 4.5years, 58 when diagnosed, and have had 3 TRUS biopsies ( including initial diagnosis ).
Biopsies have all shown low volume G6 in right of prostate.

In addition I have had 5 MRIs, none have shown any evidence of PCa.
I have been told by my urologist that I will almost certainly need treatment some time in the future. So I am fully aware that AS will come to an end at some time in the future.

On diagnosis my first reaction was to "get rid of it", but after some research and much thought decided that AS was the best option for me. It avoided possible side effects of radical treatment, while ensuring that any changes are detected soon enough to allow curative treatment.

For AS I have 3 monthly PSA checks, annual MRI and 6 monthly urology appointments. I did have TRUS biopsy for the first 2 years, but improvements in MRI seem to have made this unnecessary.

For me there are 2 essentials for AS.

Firstly I have great confidence in the urology team who look after me. My team is my consultant and 2 specialist nurses. My consultant has always been very informative and honest with me, so that I can make my decisions. The nurses are really knowledgeable, and give a more "down to earth" perspective on my condition.

Secondly I have taken responsibly for monitoring my own AS, I arrange my own PSA tests at the GPs and always make sure that I get my consultants appointments at the right times. I have had a phlebotomist at GPs who tried to restrict PSA tests, and hospital appointments department who rearrange appointments as they are routine and not important.

There is definitely some stress associated with AS, but for me it is far more acceptable than the risk of treatment side effects. I know that there are many who would consider my choice risky, but it is right for me.

It surprises me that a urologist discounted RT on the basis that future surgery is difficult. RT is intended as a curative treatment and if all goes according to plan no further treatment should be required. Personally when I need treatment I will make my choice based upon the best predicted outcomes, and will not be considering backup in the event of failure.

Alan

User

Posted 15 Apr 2017 at 15:09

Hi Saints,

I am surprised you say that the template biopsy was 12 cores only. This is the number associated typically (8-12) with a TRUS biopsy. A template biopsy usually as shown in this video and written narrative, takes many more cores (50 in my case) and is generally done under anaesthesia or epidural as apart from pain and anxiety it would otherwise cause, it is imperative that the patient remains motionless through the procedure.
http://www.nuadamedical.com/mobileservices/biopsy/template-guided-biopsy/

Barry

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User

Posted 13 Apr 2017 at 22:18

Hi Saints220,

I can't see you have given the age of your husband under your/his profile or details of his diagnosis which tends to get lost in threads

Men can and do have PCa before the age of 50 but after that age more men tend to have PCa (whether diagnosed or not) in greater numbers than don't have it. The better aspect is that PCa or what is often a precursor to it PIN, has been found early and your husband can be monitored so that radical treatment can take place if/when appropriate. This means that for those who can live with the thought, potential side effects can be deferred, at least for a time. It is true that this may cause anxiety, particularly when the follow up test results are awaited. However, even after surgery your husband wouldl be monitored so anxiety and tests will be something to accept for the future unfortunately.

Barry

User

Posted 13 Apr 2017 at 23:52

He is 56 Barry.

If done properly, AS is probably no more stressful than having treatment Saints. Whatever he chooses to do, you will spend the rest of your lives wondering what the next PSA test is going to be and really, I can see why with only one positive core out of 12 he might want to put off treatment and all the life-changing side effects for a while. AS is not a permanent choice - he can review his position after each 3 monthly PSA test ... that is the beauty of AS done well, the trick being for the specialist to help you spot that things are changing so that your OH gets treatment at the optimum time.

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

User

Posted 14 Apr 2017 at 08:20

My husband, in his 70s when diagnosed, was on AS for a year and it gave us breathing space.

No he didn't stress about it, he was quite laid back. m I found the approach of the PSA results a little nerve wracking but as Lyn says if it is done properly any changes can and will be picked up.

After that year of grace he did decide on treatment since the PSA went up.

It's easy to say "Whip it out and get it over with" but that isn't allowing for the after effects, which in some cases are not very nice.

Since he does appear to have the option of AS then at least for a while, it might be wise to first get your heads around having cancer then look at available treatments.

Don't accept that it is only AS or the op. If he has been given the AS choice then he dose have other options available to him, it's just that the consultant he saw only does surgery.

Ask to see an urologist and see what else is available

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

User

Posted 14 Apr 2017 at 09:23

My husband (55) was diagnosed was hospitalised in May 2015 with prostatitis where his PSA was 44, it came down to 6.6 and he has had PSA tests every 3 months with it slowly going up where it sits today at 10.2, in June 2016 he had a biopsy where his gleason score was 6+6 T2a, 1 core out to 10 was positive , MRI scan showed up a wee shadow so he is now T2c. He had another MPMRI scan in February and we could see that it was just starting to bulge out of the prostrate, he has to decided to go for the operation which will be in the next 8 week.

How have we coped, well me at the start not very well crying,not sleeping, our future(what future?) then slowly things started to settle down and I put it to the back of mind and get on with our lives and yes you will worry every time you have to wait for results. My husband on the other hand has not lost a nights sleep since he has been diagnosed,am not saying that we have not in the middle of the night hugged and cried and talked about it to the wee small hours but on a daily basis we get on with living with it.

Although prostrate cancer effects both of us, I felt that my husband was the one that would have to live with the side effects of the operation and he had to decide when it was right for him. although saying that when he told the surgeon to book him in for August, September time due to work I did put my foot down and reminded him that we are in this together and as his doctor said to him sex is great but breathing is better. Hope this has help, please feel free to get in touch

User

Posted 15 Apr 2017 at 00:27

Hi Saints

Welcome.

May I ask why only AS or surgery? Have you not been offered or looked at other options ?

Agree with hubby, (is he 56? as I can't find where that has been posted ?), ensure it is ACTIVE surveillance and review every 3 months, take your time as you say. (do please view my profile - as my brother has opted for RT and had PSA up/down for some years (high at 18), whereas mine slowly increased. )

Agree with Lyn and Barry - the 'anxiety' in many ways only changes / shifts, we all control it I guess in differing ways. I do empathise strongly with yourself - ie 'get rid' ? however there are so many variables and nothing is predicable. Please consider this : some research suggest Gleason 6 (ie Grade 3) is pre-cancer or not cancer 'at-all'. On the other hand, the biopsy could have missed Grade 4 cells.

Did hubby have a mpMRI ? ie do you know size of lesion (s) and their/it's location ? Again more information allows you both to make better decisions.

Gordon

User

Posted 15 Apr 2017 at 10:20

Thanks for all your advice.
OH is 57 now, he had a TRUS biopsy which showed 2 PIN and 1ASAP, so he then had an MRI which did not show anything of concern, but they did want to do a Template biopsy so they must still have had sufficient concern of Ca.
The template biopsy was 12 samples and 1 sample was positive (10% of sample) for cancer on the right hand side.
He has been graded as Gleason 3 + 3 T1. The urologist said AS would be 3 monthly PSA, 6 monthly DRE, annual MRI and they would also do an Template biopsy if they felt it was necessary, so it does seem to be a belt & braces Surveillance. He was quite clear the risk was that there might be some aggressive high grade cells there but they just haven't found them yet and that is the risk we take. The other option was surgery with all the associated side effects although he did say he would be able to spare the nerves. I asked about radiotherapy and he said it would be difficult to do surgery after radiotherapy treatment.
We have the 3 month breathing space to get our heads round it and do more research and I think if his next PSA came back with a big difference it will be easier to make a decision. I feel we don't really have a baseline for his PSA as it has risen and dropped rapidly April 16 6.4, June 16 11.8, July 16 5.2 and then Sept 16 9.5. The consultant said there could be a lowgrade infection still rumbling along which also could cause this, it was prostatitis that first started all this.
Ideal scenario is the next PSA comes back at 1 or 100 and then its decision made!

User

Posted 15 Apr 2017 at 11:33

User

Posted 15 Apr 2017 at 15:09

Hi Saints,

Barry

User

Posted 15 Apr 2017 at 17:35

Sorry, the template one was 24 samples. He did have an epidural and unfortunately went into retention and had to be catheterised, he was quite traumatised by the whole thing so I'm quite surprised he is thinking about AS and is likely to have to do it every year!

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