That old Chesnut Perineural Invasion & Feelin Depressed over ED

Its been some time since I last wrote anything on the blog so I thought I would give you all an update. Back in work with a very active job and lots of travel, long hours and pressure - loving it. Though I am getting really tired. Its a different type of tiredness than I used to get before the PCa. Aches and pains have started to creep in and I keep thinking of that Pathology report that said Perineural Invasion(PNI).

Sitting in hotels at night on your own gives you time to think and to read. I must have read so many papers on the topic of PNI. What has now fascinated me is the nerve structures around the prostate and their relationship to the Erectile Dysfunction that's getting me down, and also how they relate to PNI and the spread of cancer cells outside of the Prostate.

I had wondered why with only a Gleeson 6, why there was this immediate need for me to have treatment other than active surveillance. I had pondered over all the risk factors, genetics, family history. But now, having read so many papers on PNI I can see that if PNI was found on biopsy ( and it was found in my pathology ), its an indication of a more aggressive cancer and a prognostic ( if that's the word ), for more urgent treatment. So I can see why they recommended and why I have surgery.

Thing now, is that I thought why the NHS consultant said if the cancer was on the right, he would not save the 'right' hand side nerves. I never asked him why? Was it related to PNI. All the articles that I have read recommend with PNI that they remove those nerves where there is potential for PNI spread.  Now I had bilateral nerve sparing. If Mr D wasn't aware from Shrewsbury about the PNI, he wouldn't have been appraised of this risk factor.

So I have had nerve sparing, but this now gives me that worry about biochemical recurrence. Cancer was found surrounding nerves in the prostate and these nerves do pass through , outside the prostate, some to the sex nerves and elsewhere. Apparently, the cancer cells can use the nerves as a highway to escape. It might only be one or a couple. They can remain undetected for a number of years elsewhere in the body, it depends I suppose how many of the blighters may have escaped. Hopefully none. But if any have , I will always have that nagging doubt that the cancer will return one day. There is a short article here :  http://www.ncbi.nlm.nih.gov/pubmed/10759668

The ED front does get me down. Its hard not to think about it each day. But the daily drugs, the pump exercise. Oh, to be awoken at night by some stirring , or that morning surprise men have. Well not yet, and nothing of notability that could reasonably engage in a penetrative adventure. We wait and see and must keep cheery. Two counseling sessions a month are helping and recently I attended the Prostate Cancer Survivorship Conference in Birmingham where this was discussed, as were Holistic Therapys that help sort the mental and emotional aspects out. ( Its not manly to admit, but I did break down in the car the other day when listening to a tune on youtube - the emotions drained out of me - had a facecloth available to erase traces of moisture before anyone could see ).

Bit of good news, GP is giving more Viagra and more Cialis - just a shame they cant be used more purposefully.

Enough for now.

 

I borrowed the above picture - cant remember the source, but when I do I will acknowledge the author and any copyright. It does help explain things and why you can have leakage without having positive margins.

Almost 12 months since my Prostatectomy - Depression and Side Effects - the silent enemy within

Its been several months since my last blog entry and things have been looking up in my life. Have got myself deeply involved in my work, got a new role with the company that I love,  and have spent a wonderful time volunteering with International Scouts in Belgium. Also had two weeks working hard in Australia, the first time I have been to that side of the world. All told this had taken my mind of what's happened to me over the last year.

I hadn't realized really what impact prostate cancer has had on me, the diagnosis, the change in my life from pre diagnosis to post diagnosis, the treatment and how I am living my life now , to my future life. Not until the weekend when I attended a support meeting for men who are going through this.

At the meeting we were asked to recount our lives pre cancer, during diagnosis, post treatment and how we saw the way forward. Despite being a methodical person, always analyzing things, I hadn't really gone to this level of analysis. Sat there in a room with other guys and having agreed to be wired up as this was for medical research I really relived everything, not just the last year, but my whole life. Only men can really know what I am driving at , and also only men who have gone through or are going through PCa and the side effects.

From the happiness of describing 52 years of my life, the ups and the downs , to the shock of the diagnosis, sitting in a room alone with a clinical nurse being told you had cancer - the NHS consultant didn't even have the balls to tell me himself. Sat crying in a carpark, then plucking up the courage to phone my family and tell them. It was at this point of reliving this that all those emotions started to pour from me again. I couldn't believe that here I was , with complete strangers , crying. The elation of finding a private consultant, Alan Doherty who gave me the courage to sort myself and the cancer out and gave me hope - this helped steady my nerves. 

I was then asked how I felt moving forward and the impact of erectile dysfunction, loss of libido and my identity. My identity - am I a man - I don't know anymore. Physically, I probably look the same to the whole world, but inside I don't feel that. I have lost something 2/3rds ( if I am lucky ) through my life that can never come back. There is something about the male sexual identity and how you feel emotionally that drives you on each day. That has gone. Is that what makes me sad when I am alone. All these thoughts of the change to my sex life and how this relates to by sexual identity and my gender identity came flooding back and caused me another round of shaking and tears. Maybe its because I have studied 'identity' as part of the training I do for diversity for the Scout Association which really made me think and brought things on on Saturday. It made me think of what life has in store for me and my partner in life.

When you choose your treatment , you look at the priorities and you can be quite carte blanche at sorting the cancer, sorting incontinence and then sorting erectile dysfunction.

I have been lucky in that my operation to remove the cancer has gone well. I have worked hard and the incontinence is sorted - though I concentrate every time I make sudden movements or sneeze or cough to make sure I don't wet myself - especially in public.

The erections are not there, I take the tablets daily, I use the pump but I am a failure at everything that goes with this. The emotions have gone. You start the act and then it turns to failure and in the end you give up. After a while you don't try anymore, its too embarrassing to be that failure. There is a disconnect between the brain and the nerves that control things. There are signs of life but will it come back. They say it will, but its not the same. It never will be - no matter what the medical people say. Medical people may have done everything they can to cure the cancer but the mental scars of what's happened can never be healed. I try to block out these thoughts, but when alone with nothing to take you mind of things, you reminisce of your past life and the good times, the sad things is that I can see them now, but the feelings I had during those times are lost.

It was an emotional uplift Saturday, being able to talk through all this with people who understood. These were not medical people, physcosexual counselors  or other welfare people. They were others who had been or were going through the same emotional turmoil I am going through. And do you know - days afterwards - I feel so much better as I had those great guys to talk to.

So NHS and other medical facilities - drugs and surgery are not everything - we need the aftercare, not weeks after, but continued care during the difficult times whilst we deal with the side effects.

..... 2 weeks and I go and get my 12 month PSA test post op........

I have my work and my work keeps me going ... looking forward to talking at the support meeting in November .. it helps .. just wish there was more support locally.

Psa Anxiety

Had a letter the other week confirming my appointment to see my NHS consultant next week. Havent seen him for about a year since he diagnosed me with cancer. I suppose its all about records keeping. For the past few months i have put all thoughts of what happened and what could happen behind me. Now the thought of a psa increase is playing on my mind. They havent told me to have a pre meeting blood test so i tried to phone his secretary. Typical NHS uncontactable. Will wait and see what happens.

Erectile Dysfunction still a problem despite VED and Cialis - messes your head and emotions

People keep telling me its still early days, 8 months, I suppose it is. Some people who have had what I have had are permanently dysfunctional and have given up totally or are contemplating implants. Read the story in the news the other day about the guy in the USA who sued his surgeon for compensation following an implant that went wrong. Really I couldn't contemplate an implant.

The whole ED thing messes about your head. Doctors just don't get it and that's just the male ones; female doctors , though sympathetic , are still females and really don't understand how it feels to me a male. In both cases, they just don't understand the importance to the male of the species of his reproductive parts, the nerve and sensory pathways and the impact on the brain and emotions. When all of this is switched off after 52 years of life its devastating and you spend everyday thinking about your loss.

With cancer and incontinence the thoughts and emotions are different and you can get your head around these - though the fear of cancer comes back with each PSA test, even though you have had surgery and had it removed - you constantly worry about bio chemical recurrence. That will never go away.

With ED they promise you that it wont be a major problem, you don't want kids anymore? No problem you say, I don't want kids - I want to live. But they don't go into the impact of dry orgasms, lack or erectile tissues - no erection and possibly like that for life. Also they don't mention that you can suffer approx. 15% reduction in size - for some its inches !! When you are faced with cancer that's the primary pressure on your mind, but months after you get torn by the fears as you go through what they term penile rehabilitation.  Its a man thing and one that women or male doctors who haven't been through this just don't understand the impact.

You feel like you have been surgically castrated, but worse than that, you also lose your libido, the thoughts that you had - so it really impacts you emotionally.

So you use a VED - vaccum pump, medical grade, daily as you are told unless you do this then the muscle ( penis ) will wither away. The phrase is use it or lose it. Use it means exercising it and getting it as big as the device will allow to ensure atrophy doesn't settle in. Plus you use the daily PDE5 inhibitors , in my case daily Cialis 5mg - this is to increase the blood flow to again prevent cellular death.  You want as much blood as you can, arterial , to get in there. But there is nothing you can do to repair the emotional aspects - you just pray or ignore it.

Lots of thoughts around the treatments and whether I should ask for the MUSE (urethral suppository)  again to give it a try, or maybe the Caverject ( injection ) . May have a chat in August with the URO in Shrewsbury.

In the meantime, the patent for Viagra expired this week and they are saying that the price of a blue pill will drop from nearly £10 a pill down to 60p. I am not on these, though if I was you are only allowed 4 a month due to the costs. I also cant take them combined with my Cialis - not unless I want my heart to stop ... just joking .. its about blood pressure dropping.  I don't want to gamble with the GP stopping the Cialis as my script doesn't come up for a review for another year.

So friends who have gone through what I am going through say - hang in there. One chap , his machinery kicked in 12 months after surgery .... so I am counting the days/weeks/months.

Still getting internal sorness - must be my weight gain - have to lose some weight

Been a few weeks since my last posting so its time for an update.

Am walking a lot now, getting back to my regular hillwalking. Hopefully this will help lose the weight I have put on. Am not a doctor but I do suspect that some of the pain/soreness I am still getting internally is purely down to me putting on weight during recuperation.

Think of it this way, the internal stiches are not made of elastic so I assume that as I was thinner when I had surgery 8 months ago I was stitched up pretty tightly. Having put on the flab around the waistline this has probably pulled on the internal wound. So my plans are that if I keep exercising and try and lose weight then maybe these niggling pains will go. Though I do sit here sometimes and think I have a minor hernia. Especially after a long drive and getting out of the car.

Still mustn't moan or cry wolf, time to move on with life.

Bit of good news, had a blood test with work for checking for Lung Cancer. Being an ex smoker thought it would be good to have the test. Brilliant, came back negative, however with a recommendation that I get tested every 2 years as I have a 27% chance of contracting during my lifetime.

Not long until I go to Belgium to do voluntary work with Scouts at an international Jamboree, then I come back and go to see my urologist in Shrewsbury for check up and a standard NHS PSA test.

Perineural Invasion - new article published and something to make me think

I was monitoring twitter the other day and spotted the following article Perineural Invasion On Prostate Biopsy: Does It Mean that I Have Advanced Prostate Cancer?

In simple terms this describes how the cancer invades the spaces around a nerve and can use these nerves that are inside the prostate as channels to escape the capsule and invade other part of the body.

"Since having PNI on final pathology clearly and negatively affects prognosis its presences should influence the treatment decisions."

As I didn't know I had PNI at biopsy it wasn't detected , it couldn't impact my decision to have surgery. But not detected was just that they didn't hit the sampling area. It makes sense though to assume that I was a higher risk and need to ensure that I keep up the monitoring each year. Based on this article I would fall into a category that could have a recurrence within the next 3 years. ( John Hopkins study ).

Finally this quote sums it up " Perineural invasion (PNI) on biopsy is a very significant and needs to be treated as such, despite Gleason grading and PSA scores. It can indicate high risk prostate cancer, even in men with who otherwise we would consider to be low risk.  "

6 Month Post Open Radical Prostatectomy and things going well

I had my 6 month check up with Mr Doherty at the Birmingham Prostate Clinic last week and all things are looking good.

Everything has healed up well. I am in total control of my continence and as part of Mr D's study ( I am one of his index cases ), I have a green flag for continence. Put it this way I haven't had an accident with wetting at all, even with sneezing in the past 3 months. Last weekend I had to renew an outdoor emergency first aid course and we did mock scenarios on the hill that involved all kinds of stretches and bodily shapes and I had no problems with leaking.

Only thing I have been warned of is the danger of hernia's which is common post operation, especially with putting on weight - so I need to lose a stone or two. More walking needed.

Erectile dysfunction is still there and I am to carry on taking the 5mg Cialis daily for the next 6 months until I see him again. The MUSE I am giving a miss for a while as they may have caused a UTI - my fault , tricky to administer. Had a one of dose of antibiotics from the GP's to clear the UTI. Quite common apparently with prostate cancer patients post operation, especially post using the catheter. It may well have not been the MUSE but the catheter as I had burning of and on for months.

Mr D has written to the GP and the GP has ordered an Osbon EreCaid Esteem VED. They don't come in cheap, I think they are nearly £300 but these are medical grade devices. This has to be used a couple of times a day to prevent atrophy and fibrosis which is sets in could be permanent. Lots of guys use these so its part of the therapy. Had a bit of a laugh with some mates when I told them about using this - most guys ( non prostate cancer )who play around with such devices buy cheap non med versions to try and increase size - bit of a con but there is a whole industry out there. From an ED perspective there is some life so the nerves are starting to recover. Mr D believes between 6 and 12 months is a key period for recovery. I have read several medical journals that put it between 12 and 18 months - we will see.

A worrying aspect of the meeting with Mr D was the issue of PSA values. 3 months ago I was < 0.1. My next ultra sensitive test will be at 12 months post op. I said I would expect to have a result of <0.1 again. He said not to worry if there was a slight increase. I questioned this and he said that in nerve sparing surgery quite often as the nerves start recovering this can cause a spike in PSA. If this happens then I would be retested and if it doesn't go down then we would see what other treatment might be needed. Humm .. got me thinking about biochemical recurrence again.