Lee aka popeyes story

[Popeye]

My story is fairly recent and began in August 2011 when I presesnted to my GP with urinary symptoms. I was sent to have an ultrascan and blood test. The ultrascan showed an enlarged prostate and the blood scans returned a PSA of 4.4. I was diagnosed with possible BPH and given tablets to help with the urinary problems with the suggestion we follow this up in six months time. After taking the tablets for two months everything went back to normal so I stopped taking the tablets and things were fine until late January 2012. I was having serious urinary problems with extreme pain and several visits to the loo each night and an uncontrollable stream followed ocasionally by an inability to urinate. I had the old pills still with me and tried to take them again without success so back to the GP. I was referred to a urologist in my home town of Mackay and he performed the usual DRE which was extremely painful and advised I have the biopsy. After the biopsy he informed me that I had an agressive prostate cancer and he suggested surgery and suggested I seek a second opinion if I thought it necessary. In shock I asked him if I could have a copy of the pathology report of the biopsy and he agreed. I went home in a dream and after a couple of shots I read the pathology report.

Six segments of the prostate were examined with three core samples taken in each segment. The right apex, the right mid section , the right base, the left apex, the left mid section and the left base were the six segments. All 18 core samples taken in these segments returned a gleason score of 4+5=9 with tumour throughout of between 80% and 100% of each sample taken perineural invasion was present as was lymphovascular invasion. Great news the whole freaking gland was a tumour.

I was sitting at home trying to make sense of all this and searching on the internet for information. I finally contacted the local co-ordinator for the Australian Prostate Cancer Support Group here in Mackay and told him my story. This call was late at night and after relating the facts he told me he would contact another urologist here in town and relay the story. Later that evening he rang back and said give this doctor a call in the morning and gave me the doctors mobile number.

I rang this doctor the following morning and that day suddenly became a blur for me. It ended with me and my wife in his surgery at 8pm that evening. He had contacted specialists in Brisbane who all agreed that surgery was out of the equation and that my likely best treatment was ADT medication followed by HDR brachytherapy and External beam radiation. Right there in his surgery that evening he gave me my first shot of Eligard (four monthly) and prescribed cyprostate as a daily pill.He graded the cancer as T3/T4.

I had the normal chest Xray, CT and bone scan which showed nothing much except a couple of glitches on the chest and lymph gland enlargements that were not related to metastasis. Bone scan was clear (The all clear in other words)

As I still had urinary problems I underwent a TURP procedure in May 2012. This was necessary because the brachytherapy and radiology could not go ahead until the size of the tumour had shrunk and ny urinary problems had been resolved. The TURP was performed and three months later I am reasonably OK. After the procedure I finished up with a bout of bacterial prostatitus and some incontinence. It has taken three months but the infection has settled and the incontinence has subsided to a nusance state. I still wear pads for the coughing,sneezing,bending leakages that occur.

My PSA is down to 0.03 following the ADT treatment which I am on my second four monthly Eligard implant plus Anandron secondary tablets. My urologist took me off the cyprostate as it was affecting my liver. Presently I am awaitng word from Brisbane when I can attend to begin the radiology.

My urologist reckons we have one shot at fixing this and is confident. I live in hope but the information I am getting tells me not to plan anything in the future longer than four years. I have already sorted out my affairs regarding my wife and I with updating wills, powers of attorney, bank accounts, pre-paid funerals etc.

My journey so far has been all down hill since March this year. The ADT has given me extremely drastic side effects that have affected my standard of living. The TURP procedure has left me with an incontinence issue that I have no idea will ever become normal again. My libido and sex life have been non existent but the saving grace I have is that my wife and I have become closer through all of this and our relationship is stronger than it has been since we first were married.

Lee aka popeye



 

UPDATE AS 6TH OCTOBER 2012

Since August the symptoms I was experiencing from the TURP has settled down considerably. I have stopped taking the Anandron tablets and the improvement in my well being has been incredible. I suspected these tablets were responsible for the horrible side effects I was experiencing over the preceding months, I am just so glad to be off them. I still have some side effects left from the Eligard implant but they are manageable.

I finally presented back to the radiologist oncologist in Brisbane. He has informed me that because of the large amount of prostate material removed during the TURP that I was no longer a candidate for the HDR Brachytherapy and a full course of IMRT is my only option. I will be attending at Nambour hospital for the IMRT radiology from Oct 22nd 2012 until Dec 20th 2012.

For the past four weeks I have been experiencing some pain and stiffness in the thighs,hips and lower back, I am also having problems with walking as my legs seem to be a bit wonky. This has been a worry for me personally as your head seems to go to dark places from time to time. My original CT scans, bone scans and Xrays seemed to be all OK at the time of my diagnosis in March. However I have read that CT scans are not 100% accurate so I have been thinking about having an MRI done just to clear the air one way or another. My wish was granted last week as I had the gold seeds inserted in preparation for the IMRT ( A truly uncomfortable and painful ordeal ) I had to have an MRI as part of this process ( another looooooong cramped, uncomfortable, claustrophobic process). I requested and received a full pelvic and spinal MRI which was performed last Thursday. So I shall have my peace of mind one way or the other when I get the MRI results from the radiologist in Brisbane next Wednesday.
 

 

UPDATE 23RD OCTOBER 2012

 

Well I have started my IMRT here at Nambour and can report that my dark fears of metastases in my spine have been unfounded, it appears that the recent scans and MRI's have identified arthritis in my spine from the previous laminectomy I had in 1992. I suppose this is good news and bad news. However the cancer has not spread....... Good news, and I am up and away with treatment. Everthing here at Nambour seems just right, good doctors and great support team and I am off and running. I finish my treatment on 21st December 2012. It appears that my problem with my legs is a side affect from the ADT. I have researched on the web about side effects from hormone treatment and I have never seen this side effect listed as such before. However my doctor has insisted that hormone treatment is responsible for wasting and weakening of the major muscles controlling the legs and can have the effects I am experiencing. It is normally experienced approx at the 6 monthly period of medication. So I am wondering if anyone else has heard of this and I will be posting the question in the lounge. I will update again as things evolve.

 

 

UPDATE 2ND FEBRUARY 2013

 

As things have turned out I am still at the Sunshine Coast receiving radiation therapy on BCC of my nose. I have over the years been afflicted with many skin cancers from BCC, Squamous Cell and Melanoma. My nose has had much attention and surgery over the past 15 years to the point where a visit to a dematologist here on the Sunshine Coast gave me two options. Either amputation of the appendage and a prosthesis or radiation therapy and crossed fingers. I chose radiation surprisingly with the result of continuation of therapy after my prostate treatment had been completed. I am due to finish this treatment on the 18th February and I can then go home after nearly a 4 month stay. I am really looking forward to getting home even though my stay here has been excellent with much to see and do, great apartment overlooking the Maroochydore river and friendly and proffessional staff at the Premion centre but I need to go home.

 

As for the prostate treatment, I received 78Gy of radiation treatment over 8.5 weeks. My side effects included waves of fatigue from time to time particularly toward the later stages of the treatment. I also suffered some attacks of nausea but discovered the benefits of ginger, both in the brewed ginger beer and the raw ginger snacks that really helped with the sick feeling. I experienced both urinary and bowel issues and returned to using Flomaxtra and ural powder to control the urination problems.

 

It is now the 2nd February and over a month since I completed the prostate treatment. I have been informed by the Radiologist Oncologist that I can expect to remain on ADT for at least the next twelve months. I have just received my first PSA result since the treatment and the first since last July. The reading was 0.04 as opposed to 0.08 in July 2012. So everything appears to be as it should be. My urinary problems have settled reasonably OK and I am off the Flowmaxtra, The bowel problems are slowly resolving so I guess while things are not really on the up, they are at least on the level as opposed to heading downhill.

 

Update 5th August 2013

For personal reasons I have left the care of my former urologist and now am under the guidance of my GP for all my health matters and monitoring indispersed with visits to the urological department at the local hospital.

Over the past couple of months I have been experiencing bouts of increasing side effects from the ADT plus increasing aches and pains and sleep disturbances. Because of these increasing symptoms I have undertaken blood tests and scans to find some answers.

The following information is a brief description of where I am at the moment. If anyone is interested in the nitty gritty of my health update I suggest you go to my public blog on this link and look for the article "My Cancer Voyage...........How's it Going".

http://kingvalley.wordpress.com/

 

My latest PSA result is 0.03 which is great. A bone density scan indicated I now have osteopenia a precursor to osteoperosis.

I have been diagnosed with type II diabetes and to top all this off I have been diagnosed with an enlarged fatty liver.

The good news in all of this I suppose is that the cancer is still in remission but I now have multiple medications and lifestyle changes to attend to. It never seems to stop does it?

 

Update 27th March 2014

The last sentence written in my previous update " It never seems to stop does it" is very true. Since that was written I developed symptoms of blood in the urine that has now been diagnosed as radiation induced bladder cystitis. This is a rare side effect these days as radiation delivery methods have improved so much and dosage is able to be modulated and distributed so accurately. For those reading this and interested in a fuller coverage, I covered this latest diagnosis in a forum post in the lounge " Radiation Cystitis and Blood in the Urine." I am now awaiting final treatment for this condition in a hyperbaric chamber.

My last PSA result was in February 2014 and the result was steady at 0.02, as a result of this I have stopped my ADT (Eligard) as of the 14th March and will monitor the situation as it develops. My two year diagnosis anniversary has just passed and caused a bit of philosophic thinking. However I am still here and looking forward to the next few years to see what they bring 

[JimJimJimJim]

Lee,

Prada recently reported very good results for the treatment you are having:

"The 10-year actuarial biochemical control was 89% for patients with two intermediate risk criteria, 80% with one high risk criteria and 72% for patients with 2-3 high risk criteria (P = 0. 04)"

So 72% of patients at very high risk could be expected to not have a PSA rise within 10 years. Your odds might be better than you thought!

If you are interested in this study, I can send you a copy.

Or use this link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3310720/pdf/1748-717X-7-31.pdf

Jim

[Popeye]

Jim: Thanks for your reply. I have no idea who "Prada" is but will look for it on the web. If the report is available on the web I can get it from there otherwise I would be grateful to take up your offer of sending me a copy. I am new to this stuff having been diagnosed only 6 months back. Its a real mental juggling act for me as sometimes my head thinks that perhaps they can beat this thing. Then I have a bad day and my head goes the other way. I wonder if everyone with this disease experiences the mental stuffing about.

Thanks once again and cheers

Lee aka Popeye

[Bruce Kynaston]

Lee aka Popeye

I appreciate the very full account of your situation and realises that with the plan to have high dose rate brachytherapy and external beam radiotherapy, you will consult a radiation oncologist for that opinion. An opinion of a medical oncologist could be a good third opinion as these latter two have special interests in situations such as yours.

It is probable that we both shall be on the line with Jim's tele-conference group on 28 September.

[Popeye]

Bruce : I take your point but and I have already had talks to the Brisbane people and it appears that the HDR brachytherapy followed by the external beam stuff for five weeks is my only option. I am still waiting for word from these specialists of when to come down for treatment, and I can assure you I have many further questions to ask them. I am also looking forward to talking to an oncologist ( any oncologist will do) as well. All I can do for now is wait it all out, cross my fingers and hope for the best.

Lee aka Popeye