Anxiety/ Loneliness feeling

Hi Kiwi and welcome 

I understand what you are going through but active surveillance isn't too bad really.

If you can give some figures that can help with advice.

So, last few PSA, Gleeson, what does the MRI say.

You say that people don't ask anymore but obviously nothing much happening cos on AS.

Just make sure that u keep your eye on things with PSA tests and 12-18month MRI.

Best wishes 

Steve 

Hi Kiwi23

There was some discussion on other threads around how people felt when they finished parts of their treatments - and I too experienced a "sense of loss" when I completed my five months of chemotherapy.  I was not the centre of attention any more and was simply living my life and recovering awaiting a three-monthly PSA check.  It was a change most certainly.

Have you discussed your situation with other - non-work related - folks?  Some of us do not like to discuss personal medical stuff with others, but here you can query, rant, complain about anything - this is a safe space.  Me - I will stand in the street with a neighbour and regale them with all of the gory details!!

Also do not forget that there are helplines available on this website and on others (eg Prostate Cancer UK) whereby you can just have a chat with someone - it might be worth having a chat about employee rights for instance?

Are there any local support groups?

I have found that the Headspace app can be useful in managing that rambling mind which accelerates over multiple possibilities. They have a course over 30 sessions called Coping with Cancer.  It is a paid for app - but I will gladly renew when the time comes.  I used it last night....

sorry - should add, just click on our name or the roundel to see our story...

Hi Kiwi23

It's only my personal opinion, but I think it is a good thing to let your employers know about having PC even though you are currently not receiving treatment and on active surveillance.   

Over the years I managed teams of staff & sometimes there were signals that all was not right with some of the individuals which was affecting their work even though they tried not to let that happen.  I always found women on my team particularly were very perceptive to how fellow workers were feeling so often picked up on changes in behaviour & alerted me. Where the individual opened up to me, not only was I better able to understand the pressures they were feeling but I was then able to help support them.  That support was tailored to their individual needs rather than a one size fits all approach but where for instance it was medically related this included time off for health related appointments.

It's entirely up to you if you just want to tell your line manager or whether you want your colleagues to be made aware as well.  Your manager will respect your wishes regarding your colleagues and if you do want them to know can even tell them basic information for you if you wanted.  If you didn't want to speak with your manager is there an HR department or union rep that you could speak to.

If you are not already aware cancer is automatically classified as a disability under the Equality Act 2010. This legal status is granted from the point of diagnosis and continues for the rest of the individual’s life, including periods of remission or where there is no evidence of disease.  One of the main protections from this is that employers have certain responsibilities to their employees, but if you don't tell them they can't make any reasonable adjustments that may be needed to help you.  Cancer Research UK have some basic information which you might want to look at https://www.cancerresearchuk.org/about-cancer/coping/practically/the-disability-discrimination-act-equality-act-and-cancer

Best Wishes

Brian   

Hello Kiwi23 

If you are in the UK (I am only putting that comment because of your user name). yes you should tell your employer as a Cancer diagnosis is treated as a disability and in England you are able to claim free prescriptions whatever your age, in fact Buzzers above has just stolen my thunder with his post with all the information above. Thanks Brian.

Sadly I am not a fan of Active Surveillance - as Steve (Grundo) has said in his post if you let us have some further information - we can help you with this,

Best wishes - Brian.

Hi Kiwi,

I would think that your recent change of employment would make it more difficult to open up to your situation.

I was not diagnosed until after retirement but had I been I have no doubt that my colleagues would have shown concern and understanding and attending appointments would not have been an issue.

I am also aware that over a period that to some extent that I would have become yesterday’s news if I continued to carry out my working life.

I am glad to say that this also applies to family and friends .Hopefully there comes a time when you are treated normally and the PC recedes in to the background.

If your new place of work is of reasonable size there is every possibility that there are others who are living and working with this or other conditions.Perhaps once that you have your feet under the table that you will feel more comfortable in sharing and confiding which would make some of your issues much easier.

All the best

Hello Millibob - could you let me know why you are "not a fan of Active Surveillance"?

I've been under AS at The Christie for over four years with T2c and low volume Gleason 3+4 (minimal pattern 4 content) and annual MRI scans showing no change in the prostate (the most recent was downgraded to PI-RADS 2 and scored PRECISE 2).

There are many thousands of men like myself under AS and tend not to post in forums such as this because they are basically just getting on with their lives.

I know you are a regular poster on this forum and you provide excellent valuable advice to many men worried about their diagnosis and/or treatment so I hope you won't mind my asking this question, it's simply that I'm interested to know your particular personal opinion on AS?

I should also add that I'm aged 78 which I know does make a difference with slow-growing prostate cancer when life expectancy is taken into consideration.

Hi Anndee

It would be interesting to know how many out there like yourself where it looks like stats are going down over a number of years.

I would have thought not that many but obviously could be wrong.

I was on AS for 4 years but looking back at how easy the Radiotherapy was and with  no HT perhaps would have been better going for treatment earlier as tumours Def increased in size and got near the capsule edge so AS can create some risk.

But in your case it has been ok, long may it continue.

Best wishes 

Steve 

Hello anndee 

A very valid question and I am more than happy to reply. 

My personal history is I am 4 years and 9 months into my personal journey (you can read this by clicking onto my name or avatar). I have been on the group for over 4 years and a Volunteer with Macmillan for over 3 years.

In that time I have known 2 Community members on the group who have gone from AS - on regular checks, like yourself to incurable and sadly one is no longer with us. That Community member had become a personal friend and his death hit me quite hard.

I do notice also many members who are advised AS may be suitable for them suffer from anxiety with the regular blood testing and reviews and are unsure after accepting AS if it's right for them because of the "anxiety".

I think you are a lucky man being under The Christie (I am also one of their patients) as the NICE guidelines for AS do not advise an annual MRI - indeed only a second after 12-18 months - see link 1.3.14.

NICE Guidelines - Prostate Cancer.

It's a personal choice for me - and I also make it clear - it's a personal choice and not Macmillan Advice, indeed to be honest I do have plenty of other personal opinions, but they don't go into print!!

Happy to answer any questions - one thing I do know is that once you have a diagnosis, unless you are treated for the cancer - it's not going to cure it's self and I feel some folk with issues of anxiety would be better dealing with the matter sooner than later - it's better for their mental health.

Best wishes - Brian.

Hi Steve. I was PIRAD-4 on my first MRI which was 10 years ago. Every MRI since (about 10 of them) has been PIRAD-3.