YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Les Baker and Lyn live in NSW Australia. He was 61 when he was diagnosed on August 26, 2008. His initial PSA was 10.0 ng/ml, his Gleason Score was 7 (3+4) and although he does not know his staging it seems likely he was staged T1c. His choice of treatment was Active Surveillance. Here is his story.

I have resisted having a PSA test but have had some waterworks problems for around 10 years (sudden urges, dribbles). GP added PSA to a recent blood test and came back 10.0 ng/ml - Saw a urologist and had an 18 point biopsy- Never again! Had to have the next day off work but no infections.

I don't think much of any of the treatment options but have read a lot of good info. I have made big changes to diet and am doing meditation, imaging and so on. I believe my own immune system is my best bet for a cure. All I need to do is get those killer T cells to recognise cells that express PSA. My brother was recently diagnosed as well. I will let him know about YANA- I am so glad I found this website. Thanks for being here. More news later.

 

UPDATED

March 2009

 

 

I have changed my diet to include more selenium, omega 3, green tea, fruit and veg. I have reduced red meats and cut out sugar and reduced fats. By November 08 my PSA had risen to 11 (from 10 in July) and in Feb 09 it was 12. I wonder why I just get whole numbers and do they round it off to whole numbers? My uro says it just happens my PSA is what it is. Anyway both GP and uro are now saying its time to do something about it. Things are tense at home as the fear of an uncertain outcome hangs over our heads. I have now retired and am driving my wife nuts as we make the change to seeing more of each other.

I am still undecided about treatment but afraid if I do nothing and the numbers keep rising I may have left it too late. There is a lot of conflicting information, advice and opinion around. My brother has opted for surgery in April. I am leaning towards EBRT at this time but radical surgery would be quicker. I have ruled out brachytherapy. Uro says there is nothing to pick between the two but he is a rather clinical b... I told him I still have painful orgasms 6 months after the biopsy and all he said was it should be better by now. I wonder if he nicked a nerve or something. Maybe he figured it doesn't matter as this guy will probably have it removed soon. I guess at the end of the day you take your chances and accept what comes.

I retired at the end of January and a week later found I have an inguinal hernia. Doctor says 'so what'. it might be a common condition but still a worry.

Anyway- next step is to decide on treatment. I asked for an appt with the radiologist to discuss options and opinions.

Will post more in next update.

 

UPDATED

November 2009

 

 

By April 2009 my PSA rose to 12.0, 2 points in 6 months. GP said its time to make a treatment decision and I must admit I too was worried as the rise was more than I expected. I saw a radiation oncologist and commenced on Zoladex for three months.

By July my PSA fell to 1.0 and I was very pleased with this. The hot flashes were a bit of a problem and my libido fell to zero. Then I had the second Zoladex shot. After considering the side effects of radiation and the need to drive to the hospital every week day for two months, I made an appointment with a GP in Brisbane, 800km from home. I knew this GP from my previous job and respected his judgement and opinions. He referred me to a Urologist also in Brisbane. This Uro recommended surgery and advised he could perform an RP in a public hospital (PA). That was in October.

Why surgery? Briefly my reasons are - WW and diet changes did not stop the rise in PSA. Zoladex reduces PSA but cannot be used long term without unwanted side effects. No libido and no sexual response was changing who I am and was having a negative effect on our relationship. The side effects of radiation followed by the uncertainty of a complete cure was a worry. While RP is not ideal, my surgeon has had some excellent results with minimal leakage and is experienced in nerve sparing technique. He did warn that it may not be possible if the PC is too advanced. At the assessment appt, Dr M arranged to meet Lyn and I for his last appt and spent a long time examining my biopsy results and films and explained the pros and cons in great detail. We later did some research and discovered that Dr M is a leading surgeon and has pioneered some new techniques. While he normally operates in private hospitals he advised that he can operate in a large public hospital in Brisbane. I had been admitted to this hospital once before and feel very confident with the hospital and staff and especially with my uro. Much different to my earlier experiences.

So, feeling confident that this is the way to go, I am booked for surgery on Thursday 19th November. My brother also had his surgery there in April and is going well, although he had a different doctor.

Thanks to all the people who have emailed their support and best wishes to those undergoing treatment.

More news after the surgery.

Les.

Later: November 25 2009 I finally feel up to updating my story. I had surgery as planned last Thursday. The nurses were very supportive as they wheeled me to theatre, asked who I was, dob, etc a dozen times and the next thing I knew I was feeling very groggy in a room full of faces and people asking questions. All I wanted to do was go back to oblivion. I had not slept for 2 days prior to surgery and Lyn and I had driven 800km 2 days before hand. They took me up to the ward where I saw my beloved wife's face anxiously waiting. It was 6 hours since she last saw me. I did not sleep that night as I had tubes for drips, a catheter and was checked every hour or so. I also had two spare tubes in case the first one got blocked.

Next day the physio came to teach me how to breathe and get me on my feet. I did not feel ready but they got me up anyway. I had stockings on and things pumping my legs to aid circulation. They were removed and we went for a walk around the ward corridors using a walking frame. After one lap I said I couldn't do any more so it was off for a shower.

Me naked apart from my tubes, blood all round my 'old fella' and a great tube sticking out through it. Two nurses gave me a wash down. I was beyond embarrassment and I felt safe with them (emotionally). After that I felt dizzy and next thing passed out. When I came to there were people everywhere. A doctor checked me over and a nurse said I had been out for 5 minutes. Back to bed and begin to recover.

A few words on recovery; The day of surgery I could not keep my eyes open and the room felt very glary. I asked for the lights out and blinds closed. I did not sleep that night. Pain was OK due to on demand pain control.

Second day I felt good about surgery, everyone was positive and told me it went well. I saw the registrar who said I had a tiny prostrate due to Zoladex. I was his first patient who had been on Zoladex prior to surgery. I felt positive and ready to try to get mobile. The catheter was not as bad as expected and the abdomen wound felt OK. I could not sit up without help. I had a bit of pureed porridge and fruit for breakfast. Drinking lots of water. I had not opened my bowels for two days and felt the need to go. The nurses helped me to the toilet but nothing doing. It hurt like hell and blood came from around the catheter. One nurse said it would come when ready and try to ignore it.

Did not sleep that night either. I had pain in my shoulder and chest and was very aware of my body. I could hear my heart beating all night, very disturbing. Next day I felt like crap, depressed, sorry for myself and wishing I had not had surgery. Later that day Lyn visited and insisted I watch TV. I didn't feel like doing anything, but there was a very interesting doco on Foxtel that got my attention off myself and after an hour I was feeling better.

By afternoon I was back on track. It appears that the day after surgery you may feel OK due to adrenalin and relief that it is over. Next day, shock sets in and you feel rotten and loss of hope. Getting my mind off the condition was the best thing. With Lyn's support and a return of appetite I started to improve.

I was discharged after 4 days and am now with Lyn at a nearby motel. I go back on 30th to have the catheter removed. Feeling much better and glad I did it.

Lyn is an angel and is putting up with much. It is a shame the hospital did not give her more support. She was not given any advice or comfort while waiting for me to return from surgery. People generally acted as if she was not there. I cannot complain about my treatment, but it would have been good if she had been included as part of the team. She is now supporting me and caring for me and herself without any help.

My thanks to mentors who have emailed their support and advice and especially to Joe Hodge who rang me twice in the hospital to encourage me. Thanks to Terry and all at YANA. Sorry for long winded update- more later. Keep up the fight against PCa. Life is for living.

 

UPDATED

January 2010

 

 

It is 7 weeks post surgery and I have recently returned from a follow up visit to the hospital.

The good news: Surgery is healing very well, no blood in urine, continence 99% but still wear pads just in case. Doctor say he was able to spare both erectile nerves but no joy yet. I think I am still suffering effects of Zoladex, hot flashes and no libido to speak of. I am feeling positive and well. My strength is returning and I am quite active.

The not so good news: There were two positive margins on examination of prostate and involvement of left seminal vesicle. The tumour was 25% of the gland. Doc has referred me to a radiation oncologist in 3 months.

The dilemma: They are not sure if cancer cells are still present or not. PSA at 4 weeks was >0.03. PSA will be monitored prior to seeing RO. I am wondering if radiation may do more harm than good at this stage, especially if PSA drops to a lower level. Should I put off RT and monitor PSA for a while? At what point would RT become worthwhile?

Meanwhile life goes on and it is still worth pursuing goals.

Thanks to all at YANA for your support and best wishes to all fellow sufferers and their families.

Later: Lyn and I drove to Brisbane to see the radiation oncologist. Latest advice is that because of 2 positive margins and involvement of one seminal vesicle, I should undergo a further six weeks of radio therapy, just in case. Alternatively I could participate in a clinical trial where I would be assigned to either a group watching their PSA or a group receiving 60 greys of radiation.

The side effects of radiation were described. None good. However no one could tell me what would happen if I decide to have no further treatment. It comes down to a toss of a coin. Given that so far I have lost so much of my quality of life to Zoladex and surgery, I am leaning heavily to returning to Watchful Waiting and we will see what happens next.

Actually, I am very pleased because my latest PSA was undetectable, which has to be a good sign. If it remains undetectable I reckon I can say I am cured and if not, lets deal with it when the time comes. Next PSA in April, til then life is for living!!

Thanks again to all YANA contributors for your support and good wishes.

Les' e-mail address is: lesnlyn7@bigpond.com