Prostate Cancer at 52 years - my journey PSA/Biopsy/MRI/Cancer .. the Open Radical Prostatectomy with bilateral nerve sparing (Mr Alan Doherty Surgeon) 98% Success - Now a Cancer Survivor . 2 years later, diagnosed with Obstructive Sleep Apnea, and Hypertension. Then end of 2016 - COPD plus Bronchiectasis
Thursday, 3 July 2014
Genetic Testing and the BRCA 1 and BRCA 2 Gene mutation
The Royal Marsden with Cancer Research and MacMillan have just published a paper http://www.royalmarsden.nhs.uk/SiteCollectionDocuments/patient-information/brca.pdf that gives all the details about Famility History and the link between Breast and other cancers , including prostate.
What is does say which is key for me " When thinking about who is at risk of having the mutation in the
family it does not matter if you are a man or a woman. Both men and women have BRCA1 and BRCA2 genes and men can also carry a faulty BRCA1/2 gene. The risk of developing cancer for men is not as great as it is for women but they can still pass the faulty BRCA gene on to their offspring." That to me is the crux as my daughter and son and their children , when they have them, could be at risk.
Having a daughter, two surviving sisters and multiple nieces and being the current only living relative who has had cancer, there is a real family interest in determining if I carry this inherited mutation as this might well impact those family members. If I have the gene then my sisters might also have it and then it may be passed down to their children as well as my own. As the above study states "Women in the UK have a 1 in 8 or 12.5% chance, on average, of developing breast cancer in their lifetime. Women with one or
two close relatives affected with breast cancer have a lifetime risk of 17-30%, depending on the specific family history. Women who have a BRCA1 gene mutation have a 60-90% lifetime risk
and women who have a BRCA2 gene mutation have a 45-85% lifetime risk. Women with BRCA mutations have an increased risk of developing breast cancer at a younger age. Also, BRCA mutation carriers who have had breast cancer have a higher risk of developing another new breast cancer, compared to women who develop sporadic breast cancer in the general population."
But its not just about women, this gene can be passed to the male side and as such will increase the risk of cancers such as Prostate at an early stage. Papers are now saying that men with the BRCA 2 mutation who develop what would be considered low risk prostate cancer for those without the gene are more likely to get advanced aggressive prostate cancer and as such should have immediate treatment rather than surveillance if cancer found.
This all adds weight to to getting checked to see if I have the gene problem so that my own children and those of my sisters can be aware if there is a problem and get checked early. For example, my son to be screened from 40 yrs and my daughter from 30yrs.
To get the genetic referral on the NHS you have to have a family history of cancers. Research this week established:
Mothers side:
Grandmother had breast cancer
Mother had Breast Cancer
Sister had breast cancer ( early onset, primary and secondaries, bilateral and died at 49 yrs )
An Uncle(Mothers brother) had Bowel Cancer
An Uncle(Mothers brother) had esophagus cancer
Grandfather , unsure what cancer he had - still investigating
An Uncle(Mothers brother) had lung cancer
Fathers side:
Father had Prostate Cancer (advanced, through bones etc.)
Grandmother had Breast Cancer
Based on the above, my GP has got me to complete the Family History forms and these have been sent to the NHS referral centre. Will wait and see if I get an appointment.
GP Check up and discussion of possible surgery problems
Quite interesting , she wondered, as I have had it over a year, whether there was any possibility I had nerve damage following surgery. A new one on me, but you never know. Still, she was great and booked me for a load of blood tests as a starter to find out whats going on... we joked ... a mini MOT test.
{ Update 3rd July as this original post was written 12 June - blood tests all came back in the clear - booked in to see a neuro expert due to still having problems with the arm and neck, and now the legs issue }
She did ask me about doing a PSA but I declined as it will be tested via an ultra sensitive in oct at the Priory. It did lead me to saying to her that I don't see the possibility of any BCR - Biochemical Recurrence in the next 15 years as Mr D got it all out.
As usual , it made me think and read ... I learnt something from a new article today .. the most common failure in Prostate Surgery is cell leakage at the bottom of the prostate (the apex) - apparently there is no capsule at that point. Surgeons who leave too much behind so that your continence is ok and also to preserve the sexual function nerves often leave cancer cells as they cant see them!! http://www.prostrcision.com/qa/radical-prostatectomy Question 88.
Not that I am worried .... but it gives me a nagging doubt as the bulk of my tumours were at the Apex.
Never mind. Big thing at the moment is to get exercise. When I went into hospital I was under 17 stone, now I am 18 stone 1 pound. I have a waist of 45 and a BMI of 33.4 - Christ I am clinically obese.
Cured Cancer === now a fatty === time for action
Tuesday, 11 March 2014
That old Chesnut Perineural Invasion & Feelin Depressed over ED
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.
Monday, 7 October 2013
Almost 12 months since my Prostatectomy - Depression and Side Effects - the silent enemy within
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.
Wednesday, 14 August 2013
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.
Monday, 24 June 2013
Erectile Dysfunction still a problem despite VED and Cialis - messes your head and emotions
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
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.