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SILVER

Dan Willis and Nola live in Victoria, Australia. He was 59 when he was diagnosed in 2006. His initial PSA was 8.4 ng/ml but he does not know his Gleason Score [Dan subsequently reports it was 3+3=6] or staging although it appears that he would have been staged T1c. He chose Surgery and here is his story:

I was first diagnosed with prostate problems in 1992 by my GP with an enlarged prostate and a PSA of 2.0 ng/ml. As this was such a small reading nothing else was done other than a simple X-ray.

After a check-up in about 1996 my PSA was about 4.0 ng/ml and my GP at the time was not worried about it other than to have a yearly PSA, with it staying fairly constant until about 2000.

After 2000 it started to rise until it got to 8.4 ng/ml in 2006 which is considered getting high, so I asked my GP to take it further in which I met a Urologist, who then after a DRE (digital rectal exam) took a a biopsy with 10 samples.

The urologist who performed the biopsy at the next visit refused to do the surgery because of my age, prior angina years ago, my so called weight, and because I was an asthmatic. But also informed me I had cancer of the prostate and would only recommend radiology treatment. I was very annoyed at this point so I went to my GP and his reply was "So!! You will have to have the treatment."

I was not happy with his attitude so I changed Doctors to a local only 10 min away, not one hour. The new GP checked me over and tried for 1 month to get in touch with the Urology Registrar at our local hospital to see what they could do.

The Registrar saw me finally and made arrangements with a new Urologist, and after explaining the facts of surgery to me by the new urologist I went to surgery a week after seeing him.

The surgery went well and I was only in hospital for 5 days. I returned home for 2 days and was back I hospital again this time for Golden Staph, which I must say was not a pleasant experience but was home again after another 5 days. They admitted it was their fault that this had happened.

They also found that some of my stitches had come undone and it was agreed that it was not advisable to undergo further surgery to just let the wound heal itself from the inside out. District Nursing had been arranged to visit at home to assist with dressings.

The next step was to remove the Catheter, which had been in for 3 weeks at this stage. This alone (1 day in the ward) turned out to be a job in itself as the catheter had a ridge at the end and was painful to remove, but it did come out after some force by an experienced nurse.

At this stage I was given a supply of pads (and a form for the QE) to use for urine leakage and sent home. I was also informed pads and accessories were available from the QE a Geriatric Centre.

I already knew that another alternative to pads was the use of Condom drainage which is used in conjunction with a leg bag.

A visit to my Urologist revealed that it would be some time till I was able to use my penis again for passing urine properly. So with this in mind I opted for the condoms and leg bags instead of pads, which up till now are successful while I'm learning to pee again.

A recent PSA test and visit to my urologist revealed I still had cancer cells in my blood although small - PSA 0.05 ng/ml it would be necessary for me to have radiology treatment. "What a BUMMER!" at this stage I thought I would be clear but the urologist said that the Pathologist had found more cancer in the Prostate than the urologist thought, that's why I had to have the new PSA test.

So now it was off to BAROC a centre for Ray treatment of cancer, my visit was pleasant and the doctor I saw explained everything from go to woe, even the good and bad involved in the treatment. My wife and I at this meeting decided to go ahead with the treatment which is a course of 34 treatments over 7 weeks, this started on the 27 December 2006.

I am still using a smaller incontinence pad daily, but managing urine problems OK. Finally finished 15 February 2007. Went through two depression episodes in the whole time but was lucky my wife of 39yrs noticed them and set me right.



Things to remember.

1. At each and every stage from diagnosis to treatment the whole family need to be informed of every step and process involved (I involved mine).
2. Ask Questions all the way through the process, and be prepared for the unexpected. They do happen.
3. Get your hands on every bit of information you can. Books (are free from the urologist, libraries) and the Internet (only a phone call away)
4. Remember there is support out there you only have to look or ask your GP or Urologist.
5. Keep your GP in the loop of things as she/he may know what's going to happen next.
6. Remember if it is diagnosed early it's not necessarily fatal as it is slow in progression. More men die with prostate cancer than from prostate cancer.
7. Sons need to be checked after you are diagnosed if they are about 40 yrs old as it is hereditary.


CONTACTS

1. The first and most important is your GP.
2. The Prostate Council of Australia is an excellent source of material and information
3. Your town or shire can be another source of referral e.g Local Health Service.

I am now with the support of the PCFA launching a PROSTATE awareness and a support group within our shire. As our nearest support is 1 hour either way from where we live.

From a survivor
Dan Willis
RMB 463
BEAUFORT
Victoria 3373

 

UPDATED

May 2008

 

 

I am now nearly two years on after a Radical Prostectomy and now embarking on a Artifical Urinary Sphincter because of Incontinence and a damaged Sphincter after surgery.

 

UPDATED

October 2008

 

 

As I am to undergo a Urinary Sphincter operation this Friday October 3 2008, I'll have more to add to my story.

 

Later:

Time to reflect two years down the track.

Should I have had surgery?...Yes

Why?...because I want to see my grandchildren grow up.

Problems... Just that I can't have erections any more, and Incontinence, Depression and Anxiety.

Would I do it again?...Yes if I knew what I know now.

Where am I now?...Nearly 62 and apart from finally having a urinary Sphincter fitted and having a heart attack two days after surgery I'm all ok,

Is there more to come?...yes to have the Sphincter inflated.

What was the urinary sphincter called?... an AMS800.

More to follow soon

 

UPDATED

December 2008

 

 

Five weeks now since my Urinary Sphincter operation and all seems well, no more leakage when sneezing or coughing. I was taught how to activate the sphincter and in an emergency de activate it. Life is now a lot rosier.

 

UPDATED

June 2010

 

 

Well after a successful period of 9 months using the implant I had a sneezing fit (with a full bladder) which tore the urethra area around the cuff.

I went to hospital after deactivating the system myself, bleeding from the old fellow. They were amazed, even the urologist said he had never seen this before. The outcome was a night in hospital and released the next morning when I showed no more blood in the urine.

Several months passed in which I had infections so finally they removed the cuff and again waited several months to have a new cuff fitted - this time at the base of the penis which was very uncomfortable. Alas, I developed another infection (staph again) so the implant could not be inflated without severe pain.

So finally at the start of this year being 2010 they removed only the cuff and pump, leaving the rest as the urologist said we'll try again in another 12 months.

So the long and short of the story is that I still have incontinence and rely on pads to keep my self dry. Will I do it again? I don't know it was great at the start. All I want now is to be able to get an erection again but that won't happen soon as I have a heart problem but they assure me that that the injection works (ouch) I may give it ago at some stage as it's the depression that's the hardest to overcome living with incontinence and ED.

 

UPDATED

July 2011

 

 

Well where do I start....after having the second sphincter removed I appear to be alive and well, albeit that I still have to use pads to keep dry.

Emotionally I'm better as time has passed on (now nearly six years) The most recent is that I was able with PCFA (Prostate Cancer Foundation of Australia) assistance and the Cancer Council able to establish a PC Support Group here, while the message of PC is slow I am confident that in time MEN will wake up and speak to their doctor about this issue.

My PSA is rising very very slowly at present but I am assured that this is normal, for a smoker (Bad Bad Me but that's all I have in life to enjoy)

As to erections again, another story. With the assistance of Cialis I can get a 1 inch erection but it is to soft for any use and I have decided that Caverject injection is not an option at this point in time at 65. I have discovered that Cavanosal Fibrosis is more common than I thought (lack of blood supply to get an erection) thus the short willie due to the prostate removal, but that's history

Would I go through it again "YES" so I can see my grand children grow up and get married, have I told my son to get tested as he is 40 now "YES" .

Dan's e-mail address is: daniel_willis@bigpond.com