Over Christmas 2008/09 I noticed small lumps in my neck (left side) but associated this with my under active Thyroid (I have taken drugs for this for over 3 years) Also over the previous 2 years or so I was gradually losing my erection and the ejaculate was becoming non existent. I Googled these symptoms (called, I found out, a 'retrograde ejaculation' ) but no association linked it to prostate or anything else much. All the while I could still pee over a hedge and had no night time problems so I just carried on, again linking symptoms to Thyroid and general middle age wear-and-tear. Typical man...
Anyway, I finally went to my GP for a regular Thyroid blood test and check up and mentioned the neck lumps which he examined. He didn't think they were Thyroid related, took some more phials of blood and said could I drop them off at the hospital that same afternoon? He also said that these were almost certainly swollen lymph nodes which were sometimes an indication of some of the more "exotic cancers" (!) Very reassuring.
So my GP put me onto a 2 week 'fast track' appointment with an Ear Nose and Throat consultant who organised a biopsy on my neck nodes which showed up prostate cancer cells and so I was transferred to the Urology consultant. He did a prostate biopsy and we had a Gleason 9 score (not sure if it was 5 + 4 or 4 + 5 but maybe an old hand here might tell me if it actually makes much difference??)
By this time I had 'Googled' my research and could see the rather bleak news that I had received. This was May 2009 and I still had no symptoms apart from the neck lumps and lack of ejaculation fluids.
(So well done GP for suspecting and quickly dealing with the problem although he later said that PC wasn't the obvious cancer candidate - even the Urologist said he had only ever seen one other case of a PC patient presenting with swollen neck nodes)
The Urologist started me on 1 a day Casodex 150mg which quickly shrunk the nodes and all was well and it wasn't until two months later (August 2009) that I slowly started getting leg, hip and lower back pains which have gradually worsened and I'm getting through the painkillers.
I next see the Urologist tomorrow (21st September 2009) when I will get my PSA numbers. With the on-set of aches and pains (and learning from all I've read on this and other sites) I think I am ready for a Lupron-style drug and also Zometa for the bone mets. Anyway, enough for now, I will report back on my meeting with the Urologist and would appreciate any comments that you would like to make.
After 4 months (May 2009 - Sept 2009) on just Casodex 150mg had PSA blood test and appointment with urologist. My wife Lesley also came along, best to keep her in the loop but I have not yet broken the news to my mother (81)and son (27). Will have to choose my moment, my mother in particular will take it hard and have decided she needs to spend a week with us when I do eventually tell her.
Anyway, PSA was now 285 (was originally 268 in May 2009 although I think I said it was higher in my original report) so Casodex had held PC in check but had made no progress to reduce condition or PSA.
As I was also experiencing some leg and back pains (thru Aug-Sept) the next step was to start Zoladex implant so this morning 1st October 2009 visited the nurse for initial 1 month injection. This would be followed by another 1 month injection and if all's well will go onto 3 monthly shots.
I was also prescribed to continue on Casodex but reduced to 50mg. So I am now on combined treatment.
The urologist also introduced my wife and I to the cancer liaison nurse who we could contact anytime regarding any points of concern. Nice customer care, which my wife appreciated, but for cynical old me me it was a little like the the priest chancing by your bedside to introduce himself and say 'hello' in passing!
The uro also said he would line up for us to see the Oncologist at the next appointment (Dec 2009) which I thought I would have to fight for. So many people on in the UK report a hard time getting through the system, firstly to get a correct diagnosis and then suitable treatment and then access to the right specialist advice. I haven't found this at all, everyone is professional and on the ball and, as I've Googled everything there is to know about this disease, I more or less know what they're going to say before they say it (which in itself is a check for me that they know their stuff!)
My GP since has also prescribed Diclofenac 50mg which is an anti-inflamatory for bone pain and this has worked well and got me off painkillers. We now need to wait and see if Zoladex does its job and gets the PSA down.
I did read that whilst PSA is an important measure in the progress of the disease, incidence of pain and also modern scans give a better indication. I shall therefore be hoping the pain goes away and stays away for a long, long time...
Meanwhile I can see the mid-term writing on the wall and have made plans to alter the way my business operates so it is less dependant on my physical health. Luckily I have self employed insurance if (when) I do have to stop working and living in the UK means the healthcare is paid.
Diet wise I am off dairy and meat and caffeine but will eat wild sea fish. Like others I have read Jane Plant and have veered towards the vegan way but still like the beer and red wine too much. Have invested in a juicer for fruit and veg drinks which is good and tasty and am open to suggestions about what else works??
Will update again when news warrants...
Well its now November 2009, just six months after diagnosis, and a few things to update.
Met with the Onc again and I am now on a three monthly Zoladex injection plus daily 50mg Casodex and have now just started Zometa on a four weekly infusion for a total of six treatments. PSA at the end of October is 128 and would like to see it reducing a bit quicker bearing in mind all the drugs that I'm taking.
The back pains had started getting worse including tingling and numbness in my left leg, a sign that my spine was getting affected. The Onc booked me in for a one-off radiotherapy treatment - 8Gy which is quite a jolt and I threw up on the way home and later that night and was laid low for about a week. Coddled my brain a bit too, went to the wrong hospital for the first Zometa infusion for instance! Anyway, 2 - 3 weeks on and I feel much better, leg symptoms have gone and feeling quite good. Suppose I am now on all the regular treatments and we will just have to see how long they're gonna work...
In the meantime I have reduced my workload a bit and will be joining a health club because I know swimming is recommended by many (does anyone else think it's just a way of alkalising the body, regular immersion in chlorinated water??) My wife has now started a more time consuming job so I will also be doing a bit more dog walking, we have two Dalmatians.
Happy to receive emails from anybody, and I urge everyone to update if they can. Not very encouraging to the rest of us when a persons story just ends...
Nov 16th 2009 start Zometa # 1
Dec 16th 2009 Zometa # 2
Jan 5th 2010 PSA 75.8 Testosterone 0.7 Jan 18th 2010 PSA 78.4
Jan 20th Zometa # 3
Jan - Feb, Bad sciatica-type pain to left hip and thigh. Prescribed Solpadol, Ibuprofen and oralmorph. RT needed.
Feb 15th - 19th x5 fractions of RT to lumbar spine 20Gy. Lays me low for several weeks
Feb 22nd 2010 PSA 196 (ouch!) Testosterone 0.7
Feb 24th Zometa # 4 Finished Casodex (my decision yet to tell Onc) never been convinced it's worked for me
11th March 2010 PSA 157 (bounced down because of Casodex withdrawal...?) Testosterone 0.7, good to know Zoladex at least is working
24th March 2010 Zometa # 5 After RT now feeling fine, no leg pains etc just a bit achey and stiff but I am ill and been sedentary for 2 months so probably to be expected.
Sadly I was told that Paul passed on January 7, 2011.