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This member is a YANA Mentor This is his Country or State Flag

Dan Willis and Nola live in Victoria, Australia. He was 59 when he was diagnosed in January, 2006. His initial PSA was 8.40 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Surgery (Perineal Prostatectomy). 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 Prostatectomy and now embarking on a Artificial 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 deactivate 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 a go 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".

UPDATED

April 2012

At present I am left with incontinence and ED.

  1. ED needs to be a pen type dispenser as with Diabetes and not a 2 mix system currently available. Have I tried it yet "NO", oral does not work at all in my experience.
  2. Incontinence is a worry with a "short willie" due to Radiation after surgery, a constant need to pee, but I live with it. As a PCFA Prostate Cancer Foundation of Australia) Facilitator my option for this is to have a bladder reconfiguration.
  3. PSA on the rise after 6yrs to now 0.3

Do it all again "yes" if I knew what what I know.

UPDATED

May 2013

Well where do I start 7 years after a radical prostatectomy and radiation?

Incontinence is the major problem with the constant use of pads, that is having to change at least 3 times a day or I smell and now some Bowl leakage, which is not a major issue but annoying.

So I plod along knowing that I have survived this far without any major issues other than the in ability to get a hard erection enough to have sex, having said that I have not pursued the avenue of medication to assist with one as my wife of 46 years shows no interest in trying at our age.

Had I had a modern day GP then I would have not been left these problems as he was certainly up to date 7 years ago with PC and it was up to me to insist on seeing a Urologist.

My PSA is on a slow rise and I still see my urologist every 6 months.

UPDATED

October 2013

After not feling well for a few weeks with pain around where the prostate was and sharp pain in the groin my tests came back as a tear in the groin muscle area and as that healed I was not convinced all was well.

So back to the GP for a CT scan and it has revealed not only dense subchrondral sclerosis and fiducial seeds in the prostate bed and thay my previous PSA; 1 month earlier had doubled to 0.83 which 4 months earlier was 0.40.

Also have a mild diverticular disease. So what next? just wait till I see my Urologist next month and then WHAT?......more maybe to follow.

UPDATED

November 2014

Hi all, this my latest update.

While I can live with Erectile Dysfunction emotionally it is the Incontinence that is the most annoying, sneezing or just getting to a toilet in time and even leaking into my shield overnight. At times having to get up to pee at the ungodly hour of 4 am an hour before getting up as normal.

I see my urologist every 6 months for a PSA result and how am I managing but the most annoying problem is that my Arthritis has accelerated over the past few months, resulting in having to have an orthoscope on a knee and after X-rays I have osteoporosis in most of my spine.

But I wake up each morning thanking the man who has given me 8 years of life so far after my serious diagnosis.

More in the future.

UPDATED

December 2015

As a member of this site for so many years now and still alive after 9 years now it's time to update.

In the past I have had my problems like everyone else who has had a Radical Prostatectomy, but now all I have is a need to pee after a mug of coffee during the day time and at last very little dribbling night and day times. Also my last drink is finished at least 2 hours before bed time.

I am now at the stage of slight increases in PSA (still below 1) but because I have Osteoporosis I have scans at least once a year for both Osteo and Metastatic cancer traces, so far only one spot detected on a hip but as my urologist says I'll die of something else other than PC.

Please ensure that you have a PSA test at least twice a year if you have had treatment.

UPDATED

January 2017

After 10 years it is not nice to admit that you can no longer get an erection, no matter how hard you try, I am certainly not going to have an injection into my willy and just constantly pee.

My urologist says there is nothing he can do to improve incontinence, just have to live with it.

He told me at my last visit a month ago my PSA was 1.37 and now I enter the doubling effect every 12 months, e.g., 1 year from now it should be around 2.?? so I'll wait and see.

Apart from back and left leg related sciatic nerve pain and strong pain relief I am alive to reply here.

Stay safe all, after treatment-use it or like me lose it.

Dan's e-mail address is: emohrou AT antmail.com.au (replace "AT" with "@")


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