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2 years post De-Vinci and still worrying about recurrance.

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User

Posted 17 Feb 2019 at 04:58

I am now 20 months post radical De-Vinci and have a stable PSA at 0.02 but still continue to look over my shoulder and worry about reocurrence.

Although my tumour (Gleeson 9) had not breached the prostate (1mm from outer wall) I cant stop worrying. I still have constant nagging pains on the left side of my pelvis and after 18 months have went back to tena shields, as cant seem to empty my bladder properly and often dribble after the event. I have little or no action from the waste down with ED now accepted and the vacuum pump shelved, although still continue to take Tadalafil just to keep the blood flowing to that area.

The research I did early stages still haunts me with the Harvard University study showing Gleeson 9.s very rarely achieve full remission, with the chances of biochemical reocurrence in the first five years set at 85% (most commonly after 2 years the PSA could rise)

Every backache or arthritic twinge, I still associated and think the worse - at times it feels like I am willing it to come back. This so I can just get on a battle it again until it goes away for good.

Is anyone else in the same boat. as its a lonely psychological battle which I dont feel I can share with the family for fear of dredging up the past. This as I had a pretty bad time initial post opp with catheter in for 8 weeks and a sticture on removal. Would be good to hear from similar Gleason 9's from my era (im 53).

User

Posted 17 Feb 2019 at 10:20

I don't think you need to be a G9 to experience these feelings - it is a normal part of life for many men after treatment. You may find that it becomes easier once you get to the 5 year mark and then 10 years, which is the benchmark for being in 'full remission' (although my dad's recurrence was at 13 years so it can happen)

If the thoughts and worries are stopping you from enjoying life, you could consider getting some counselling or talking it through with a Maggie's adviser or similar. They may be able to help you learn to trust your results - with a stable undetectable PSA the aches and twinges are not going to be cancer related.

Anxiety about recurrence is common across all cancer types; I believe Macmillan has a leaflet about how to cope with it.

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

User

Posted 17 Feb 2019 at 10:21

Don't know which nomogram you used but I just put your figures in the post op Sloan Kettering nomogram

https://www.mskcc.org/nomograms/prostate/post_op

It didn't come out anything like that. (60% no recurance at 10 years).

I was only a G6 but was T3A and I have a low PSA 0.023 for 3.5 years. My figures in that nomgram are even better BUT you can't stop the worry!

I currently have a really bad hip. The pain comes and goes and started at a lower level before my diagnosis, I have had bone scans and xrays, seen consultants privately, they all say the same thing - arthritis take pain killers and when it gets unbearable replace the hip!! I still worry!

User

Posted 17 Feb 2019 at 10:32

You are not alone: I doubt there's a man with PCa who doesn't find himself looking over his shoulder from time to time. But some do more than others.

Was anxiety a feature of your life before PCa, or is it PCa specific?

Anxiety is a very manageable problem, either with meds, therapy or self-management techniques. If your anxiety is messing up your life, then you should seek help, either straight to your GP, or at least pick up a self-help book or two.

User

Posted 17 Feb 2019 at 23:13

Hi Tony,

You are not alone, but you alone can control how you feel and deal with your personal tihs.

You are clear and clean, so why not just enjoy your life.

atb

dave

cured since may 2013

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 17 Feb 2019 at 23:52

Age does seem to make a difference. I got skin cancer at 57 and it felt too soon. Whereas Pca at 67 felt more as a disappointment, although I still had big spells of worry. Being rapidly diagnosed and feeling it might have gone has just left a nagging concern that doesn't spoil things, in fact it has made me appreciate a lot more and be much more sympathetic.

Although a psa increase could test these feelings. It's always the ah but.

I'd recommend ringing either a PCa or Macmillan nurse if you're really worried. . Definitely keep looking for the person who is the best help. I try to tell myself it won't be me but I guess that's a bit silly in a way but if it isn't and I spend 15yrs worrying that will be even sillier.

Are you 4+5 or 5+4. I'm sure there are many subtleties. I tell myself it wasn't that big a tumour, it was located at the apex and had negative margins, the cumulative effect of these could mean more than the Gleason, I tell myself. You can always frighten yourself as well so best to keep above it.

I got what was the unfortunate coincidence of a shocking hip pain while being diagnosed which made me fear the worst for 12 months. Not believing doctors it wasn't linked. Although it appears to have been a strain coupled with arthritis and in my worry it seemed to go to my back and the other hip. However it's very mellow now after 30months. Fear brings on more fear and breaking the loop is somehow the goal.

Sometimes I can ramble on but there is a good chance it won't be you.

User

Posted 18 Feb 2019 at 09:49

Tony - I'm 26 months post prostatectomy and I've already had to have SRT and am currently on HT. I'm off to the hospital today to give my 3 monthly blood sample. Even though my PSA should be stable as I'm on HT, there's always that nagging doubt at the back of the mind. I don't know if we'll ever totally lose that. Like you, I was G9, age 46 when diagnosed. I hope your run of undetectable PSA results continues.

Ulsterman

User

Posted 18 Feb 2019 at 10:07

Hi Tony

I’m 55 now, was diagnosed at readjusted at 53. Gleason 9 (4+5), positive margins and spread to lymph nodes. Not the best news! Went straight on to hormone treatment and radiotherapy, which wasn’t pleasant.

So here I am now, just over two years on from surgery. Almost a year on from HT and RT, and my PSA has stabilised (currently…) at <0.003. I’ll take that! I also have lymphodoema, leakage, some penile shrinkage, remnants of moobs, and annoyingly flattened libido, most likely caused by leaking like a running tap when I get aroused. I believe this is referred to as the new normal.

And it’s exactly that, the new normal. Am I cured? Who knows. It may well come back, then I’ll have to deal with it as best I can. I may develop bowel cancer, courtesy of the RT. I may die in a rock climbing accident (more likely!) or drown whilst diving. Or become an RTA statistic. I may come into some money and spend the rest of my life somewhere warm with great food. So many options,

Cancer is only part of my life, there is plenty more to enjoy. My daughter (then aged 10) said in passing “there’s no point worrying about it, just live every day and enjoy it.” She really did say that, to her own dad going through cancer treatment. Very simple, I know. But maybe life really is that simple. We can complicate it with anxieties and worries about what may or may not happen, but we all know all that does is spin our heads up and gain nothing of any use for us.

Take away the worries, put them on a shelf for later reference if needed, and get on with life. Seeing a counsellor or the like will help, and most likely the talking will be similar to the above, but with more hand holding!

Life is good, find things you enjoy and do them.

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