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3 Monthly PSA Anxiety

User
Posted 01 Jul 2019 at 18:51

I have the usual stuff most of us have with hormone therapy:  hot flushes, feminisation of the body with some fat in new places – specifically breast, tummy and thighs.  I do not think I am as strong as I was – but have just returned from a 7 day hiking holiday in Italy where we walked around 20km each day with some steep climbing, so I would not want to overstate this.  I try and walk briskly for around 3-5 km most days and go to a gym twice a week and work out with a sympathetic trainer.  I am about 4kgs heavier than my fighting weight.  I blame the decapeptyl for this but my wife blames pasta!  I think we are both right and I will go on a determined diet soon!!  I seem to have developed mild arthritis in my hands which my oncologist thinks may be connected to the therapy.

As far as the after-effects of the surgery are concerned, I still wear lightweight pads because, annoyingly, I occasionally have very small dribbles.  I also have mild lymphedema in my left ankle and sometimes my calf.  The general view seems to be that losing 25 lymph nodes in my pelvic region is the cause. On long haul flights and long drives I wear full length medical stockings which work well. When I can, I sit with my foot raised.  After a night laying down, usually my ankle is just about of normal size in the morning. I also have a triangular piece of foam rubber to raise my ankle and knee above my heart which has always done the trick if the swelling is persistent.  Exercise helps and after a long walk the swelling has usually mostly gone down. 

I can live with all these physical changes but by far the most difficult issue for me to handle is the uncertainty and the agonising few days before my 3 monthly PSA checks. I try not to look at survival statistics since they are unhelpful to individuals:  Statistically, a PSA of 8 with a normal DRE and absolutely no symptoms meant it was very unlikely I had either an aggressive cancer or prostate cancer at all…….As Harold Wilson said, “If you are unemployed, the unemployment rate is 100%”.   Any advice on how to handle the stress of the 3 monthly PSA checks and the general uncertainty of probable treatment failure at some point would be helpful.      

 

User
Posted 03 Jul 2019 at 07:19
1st point you have achieved a great response with your PSA so you should take some comfort from that.

2nd point you are in your 70s and still walking in Italy, do more of what you like to do as often as possible, distraction by pleasurable activity is good for PSA anxiety.

Finally ask your onco at your next appt what they would do if it came back and at what level they would intervene. Depending on the answer you may both decide that 3 monthly testing adds no value if a 6 month or longer test achieved the same result with little impact on treatment.

It may even be worth asking you are monitored with scans rather than PSA as this could lead to local treatment options that PSA alone would not.

User
Posted 03 Jul 2019 at 13:33

Thanks for this Jonathan.  Yes, of course I am pleased my PSA has stayed at the low level it has been since my surgery. I guess I am also relieved that the spread is 'only' to the lymph nodes and not my bones.  I know the options for 'what next' and have discussed these informally with the oncologist in general terms.  I am reluctant to suggest to him that I move to 6 monthly PSA checks since I am not a person who puts his head in the sand, ostrich like, on any issue so it would be out of character!   I would worry about what was happening to my PSA 'behind my back'  - indeed I was having 2 monthly PSA checks until the oncologist told me not to torture myself every 2 months and rater do it every3 months!!  But I will chat to him next time I arrange to see him.

User
Posted 03 Jul 2019 at 23:04
Hi Alan

Interesting comments about pain in the hands. I'm on 3 monthly prostap jabs after going through chemo and RT

I'm following a routine fitness regime where I walk 4-5 miles a day. My only discomfort is in my fingers - index and middle fingers are sore at the interphalangeal joint on both hands

I'm wondering whether this is arthritis or some reaction to lack of testosterone in my joints due to quarterly prostap jabs.

What do you reckon.

Thanks

John

User
Posted 03 Jul 2019 at 23:40

Hi John

Although my oncologist agreed with me that my finger joint pain was arthritis and could be caused by the decapeptyl he wasn’t terribly interested and I haven’t seen arthritis listed as a side effect. I guess I took the view it was yet another thing happening to my body alongside all the other things!!  What is really encouraging is that these turmeric tabs seem to be working. Generally I am not persuaded by herbal stuff and miracle cures (for anything!) so I am pleasantly surprised and view it with scepticism. Happy to send you details. Best Alan

 

 

User
Posted 27 Jul 2019 at 18:49

Ive had severe anxiety for 8 years before PSA test results.

Theres two ways I have tried to reduce this:

- Have the test four days before the meeting with Urologist, which gives me less time to worry about what the numbers mean.

- Ask the consultant what will happen at the next test result eg If the PSA is above xx then we will xx. This has given me some secure thinking about what will happen next time. Ive just done this in July, and feel a bit better for it.

Hope that helps, we all suffer with this trying time, not nice.

Edited by member 27 Jul 2019 at 20:37  | Reason: Not specified

User
Posted 28 Jul 2019 at 17:30
Hi Roger

Thanks for your reply - at least I know I am not alone in this boat! I live overseas mostly and my consultant only wants to see me if my PSA moves and so far it has remained undetectable. We have discussed 'next steps' as you suggest but only in a vague sort of way and I have not pressed it. He says he expects, "you will have a few more years on Decapeptyl and nothing else". Hope he is right!!

Alan

User
Posted 28 Jul 2019 at 23:32

Originally Posted by: Online Community Member

Hi John

Although my oncologist agreed with me that my finger joint pain was arthritis and could be caused by the decapeptyl he wasn’t terribly interested and I haven’t seen arthritis listed as a side effect. I guess I took the view it was yet another thing happening to my body alongside all the other things!!  What is really encouraging is that these turmeric tabs seem to be working. Generally I am not persuaded by herbal stuff and miracle cures (for anything!) so I am pleasantly surprised and view it with scepticism. Happy to send you details. Best Alan

Tumeric isn't a miracle cure it is a proven anti inflammatory, not as good as ibroprofen or aspirin but an anti inflammatory non the less

User
Posted 29 Jul 2019 at 09:37
Nevis,

No disrespect intended here, but I suspect your problem isn't so much a PCa problem, as an anxiety problem. I'm sure we all worry about our upcoming PSA tests, some more than others, but there comes a point where the anxiety has almost become an obsession, and it's interfering with your life more than the PCa is!

I'd suggest you seek help on that basis - especially if anxiety is not something you normally live with to any great degree. If you have some history here, maybe it's about recognising that the PCa is one stressor too many - either way, best to face it.

It's important that we do worry a little about such things: it ensures we don't miss genuine clues that we need to act on. But there's no point surviving PCa only to end up in a living hell worrying about it!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 30 Jul 2019 at 20:56
My husband also suffers very badly with this.

No miracle cures I'm afraid but he is currently seeing a psychologist through MacMillan which is helping a little

User
Posted 26 Sep 2019 at 20:33
Stage 4 chap here, I’m 46 so hope to be having 3 month test anxiety for as long as possible.

2 years in like you and always very nervous before the meeting, my wife says a little grouchy.

I think the challenge when you have spread of the cancer is statistically each test you are more likely to get a result you don’t want to see unlike someone who has had the cancer hopefully fully removed who statistically should have less chance as time goes on.

Personally I’ve found it gets a little better over time, probably a little mentally more prepared or used to the let’s call it what it is... fear.

However keeping busy around the time is my management strategy. Exercise and activity up, Family activities, work etc. And making sure I take the time to meditate seems to help.

I think it’s unfortunately part of the new normal this evil illness brings and needs to be managed like the other side effects.

 
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