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John E lives in New South Wales, Australia. He was 62 when he was diagnosed in February, 2008. His initial PSA was 8.10 ng/ml, his Gleason Score was 8, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

THE STOOPID THINGS PEOPLE SAY

In February 2008, I received the news from my urologist that I had prostate cancer. The news hit me like an out-of-control freight train driven by Casey Jones on speed but what I wasn't prepared for was the awful level of ignorance and insensitivity out there. Many people were wonderful in their support of my fragile persona, desperately trying to cope with some of the worst news a man can have. But others plumbed the depths of their tiny minds to come up with some of the stupidest loads of crap I've ever heard. But I will have my just revenge!

The Gold Star for Utter Bullshit goes to:

"If you have cancer, the prostate is quite a good place to have it ."

Well, dickhead, you obviously have cancer of the brain and I hope you die a long and excruciatingly painful death from it. I have news for you: there is NO place in the human body where it is "good" to have cancer! And because of the potential nasty complications of the surgery, the prostate gland is actually one of the WORST places. (See below under breast cancer)

"Day surgery, is it?"

Well let me get you up to speed. Typically, day surgery takes about half an hour and you go home after a few hours. This type of major surgery takes 4 to 5 hours, you lose a lot of blood, and then they feed you intravenously for 3 DAYS because you can't take solid food. After ABOUT A WEEK, they flush your bladder with a kind of dye (very uncomfortable) so that they can take X-rays to see if the reattached urethra has healed sufficiently to take the catheter out (unpleasant but quick). Then there are weeks (or maybe months) of incontinence to "look forward to" while your pelvic floor readjusts. Plus the sexual problems, which can take months or years to resolve.

"It's the same as breast cancer."

They have just discovered that the same defective gene is involved in both breast and prostate cancer, so there is a comparison. But prostate surgery is much more destructive. The above comment usually comes from women, who find it hard to understand that anything could be worse than their own particular dread losing a breast or even both breasts. We often forget that men can also (although rarely) get breast cancer but there is no female equivalent to prostate cancer. As devastating as a mastectomy is for a woman, it does not physically prevent her from having sex in the future. Breasts are after all secondary sex organs. She will suffer a huge loss of feminine identity (devastating enough in itself) and this may affect her sexuality on a psychological level, but the surgery does not go anywhere near the nerves which govern the erectile function of her clitoris nor the glands which allow lubrication. But taking out the prostate can also affect the penis. This is what a man has to face and, believe me, it feels like signing one's consent to one's own possible castration. Even in these days of Viagra and other erectile aids, the operation affects the erectile function of 2 out of every 3 men (can you imagine what women's reaction would be if that were true of mastectomy?!!) and recovery of complete sexual function may take months or even years or may never happen. There is NO female equivalent to this imagine an operation which removed cancerous ovaries and ALSO interfered with the nerves leading to the clitoris and you are getting a bit closer to the impact of a radical prostatectomy!

When you have cancer, your wife feels the pain.

A woman said this of course. It comes across as the woman appropriating the man's pain. The word that should have been said is of course "shares". Frankly, that is all she can do. She cannot take the pain away.

You must remain positive.

You soon learn when you have this disease that there is a whole industry devoted to making you feel guilty if you dare to be depressed about the appalling news that is going to alter your life forever. There is a reason for this. It lies in the very word "patient". Nobody likes gloomy (or even realistic) patients. Why has this word lasted so long? Lawyers have "clients" why not doctors? It is because the word is telling how you OUGHT to behave. Patients are expected to be just that patient, compliant, uncomplaining, passive and never bitter, angry and disgusted with our misfortune as most of us REALLY ARE! I always remember that when, as a child, I had rheumatic fever and wasn't expected to live, our neighbours could always be relied on to utter the golden words "Ah well, there's plenty others worse off." As one lovely man said, "Gee, where's the poor bloke who is the WORST off? I wonder if they could spare him any sympathy?" How few people give you the permission to feel thoroughly pissed-off, completely depressed and really angry at the injustice of your body being host to that bastard shit of an uninvited and despised guest, cancer. And you are dealing with far more than the cancer itself you are being asked to make irreversible decisions about the treatment even though the outcome of EVERYTHING is totally uncertain you are gambling with your life, you are gambling with your continence and you are gambling with your sexuality. And you do not hold all the chips or even know which chips you are holding - the doctors can only tell you so much and no one can predict, let alone guarantee, the outcome of any move you make. Feeling suicidal in this situation is not surprising - indeed, for anyone with half a brain, it's inevitable! But depressed patients are hard to deal with and the "think positive" brigade will soon be lecturing you and comparing your state of mind to the famous "7 stages of grieving" where you are supposed to work through your anger and rejection to a nirvana of "acceptance" after all "accepting" patients are placid, docile and much easier for medical staff, relatives and friends to feel sorry for and to deal with, aren't they? Yes, there is some truth is the 7 stages, but what this theory fails to acknowledge is that it is not a simple progression - in reality, you can feel "accepting" one day and be back to full-on rage the next. And why not? Amongst my favourite words are those of Dylan Thomas, who wrote of his father's struggle with the Grim Reaper,

Do not go gentle into that good night,
Rage, rage against the dying of the light.

Amen to that.

I wrote the above 4 years ago after the operation. I must say that I received wonderful support from many friends, men & women, and two women in particular. My wife has stood by me through everything and the head sister at the hospital was outstanding in her care and good humour. No stupid remarks there!

The op was extremely painful and unpleasant but, once I was back to "normal," I had good reason to believe that it had all been worth it - that I had been "cured." I was lucky enough to have only slight problems with incontinence and full control soon returned. With ED it was longer and more depressing, however, after some months, I found I could get an erection, even without chemical enhancement and I can maintain it for ages with one of the Viagra type drugs. I do miss the feeling of ejaculation of course but I can at least have a sort-of orgasm and for that I am most grateful. One thing the surgeons don't tell you before they operate is that, after the op, your penis will be a bit shorter. This is due to the need to put everything together at the end of the op, which means retracting it a bit into the body. The hospital sister was left to warn me! It is not a problem sexually, but a bit of a nuisance at times with urination.

So, for over 3 years, I had my life back on track and my PSA was virtually zero. Then, last May, it started to rise again. My surgeon was dismayed - the post-op pathology had indicated that it was "clear." I was sent off to Sydney's major hospital to consult an oncologist, who sent me on to their radio oncologist. They offered me hormone therapy, which is actually chemical castration, such as metered out in some countries to the sex perverts (and there are many who feel it should not be used on them) or radio therapy with about a 20% chance of eliminating the rogue cancer cells and a high risk of doing me harm in the process. What a wonderful choice!! Needless to say, I was in black depression.

I have to date refused all their treatments. I was told that the PSA count would typically double every 12 months. A rate of 0.21 (of no concern in a man WITH a prostate but, for a man without one, a worry, as it indicates rogue cells which can go to any part of the body) at May 2011 has wobbled around over 18 months but was 0.38 at last blood test - still not double. I am gambling (our only choice) on it being very slow to develop. [The use of ultra-sensitve PSA testing to ascertain or measure what is termed biochemical failure is an area where some controversy is developing. There is a piece on the site at Ultra Sensitive PSA that may be of interest.]

My cousin (10 years older) died last April, having been down the same path of prostate cancer (his PSA was massive) followed by bone cancer.

My wife and friends have been wonderful in their support. My surgeon's manner has changed. He always seemed so jovial, now his attitude borders on sullen. Of course I now represent one of his failures. Still takes my money though. I would be happy to swap places with him.

UPDATED

April 2014

Since I last wrote to YANA my post-op PSA has continued to rise but very slowly.

JAN 13 0.38

MAR 13 0.48

JUN 13 0.58

SEP 13 0.51

MAR 14 0.71

This is still less than doubling every 12 months but still causes my surgeon to talk about sending me off to see the oncologist & radio oncologist again. For what? I have already indicated to him that I think the "cures" are worse than the disease. The oncologist was quite clear in saying that there is no evidence that early use of hormonal therapy is any more effective than late use. And the cancer wins in the end, if you last long enough.

As far as radio oncology goes, a 20% chance of blasting the cells out of existence, with only about 12% chance of doing that AND causing me no harm does not appeal. This is using the "old" radio machines. When I saw him 2 years ago, this doctor said that he would concentrate the rays in the area of the prostate fossa, that is, the trough where the prostate used to lie before its removal. Of course these machines are notoriously inaccurate and burn the organs around the target area. The new cyber knife machines are reputed to be much more accurate in their targeting but there is only one in Australia, in WA, and I imagine treatment costs a fortune. Nonetheless, I would be open to exploring that possibility, but my surgeon says its only of use to those who still have a prostate - it needs a target! Now, if the old machines can target the fossa, why can't the new ones?? Do any YANA members know the answer to this? I think there is a fundamental contradiction in what this "specialist" told me!

As far as my ongoing health is concerned, I have all the nasty worries of a 68 year old - ears, knees, feet, etc. But my continence and erectile function are still good. I will always miss that special thrill that ejaculation gives but my dry orgasms are still pretty good. I was sent off for a bone scan last year and that revealed nothing, so there is no sign of cancer spreading. Yet. I rely on the slowness of the PSA!

UPDATED

May 2015

I am about to embark on this treatment which may "salvage" the cancer cells which the surgeon missed 7 years ago. I have delayed doing this since my PSA started rising, very slowly, nearly 4 years ago. My PSA pretty much flatlined for those years. Then it started to rise and is now 1.07 I think this was the right decision to go ahead now as the technology has improved dramatically - the radio oncologist said that they have been using the machine this way for only 2 years. Also there is a new scan which can show where the cancer is in the whole body called a PSMA Pet Scan. It's a game changer but expensive. But worth it as it showed that the cancer has NOT spread beyond the "fossa" where my prostate used to be. I will have to go for 34 short sessions Mon to Fri for 7 weeks. Of course I am not looking forward to any of this and worry about the possible side effects. But it does seem my last chance for any "cure."

I will hopefully be posting something cheerful on YANA in about 3 months time.

UPDATED

September 2015

I have had the result of my PSA test and it's right down, which means that the radio oncology treatment that was first mooted 6 months ago, which took 7 weeks and 34 visits to achieve and was then followed by another 6 weeks of (agonisingly slow) waiting HAS WORKED!!! It is a matter of tremendous relief and joy, after all the uncertainty and knowing (through all this) that there was a 50% (at least) chance that it would not work.

My PSA is down to 0.31, which is the lowest it has been since AUG 2011. A little history: before my operation it was 8.1 (FEB 2008); post-op it was about 0.1 (safe level) for 3 years. It then started to rise slowly from 0.21 in MAY 2011 to the high of 1.09 in March this year. This could only mean that the surgeon had missed a few cancer cells which, after lying dormant for 3 years, began to replicate and spread. The aim of the radio therapy was to kill their DNA so they cannot "breed" and will die off. My PSA level should continue to fall over the next year or so. This was done by that marvelous machine "Darling Harbour" and by the caring and cheery staff at the Chris O'Brien Lifehouse, Sydney. And, being Australia and apart from one special scan, it was all free!

If anyone is looking for a charity to support in their will, you could do a lot worse than to support the Chris O'Brien Lifehouse. It's named after the remarkable cancer surgeon who himself succumbed to cancer not long ago. They are doing great work!

UPDATED

October 2016

I had a long & comprehensive post nearly completed and was thrown off line, presumably by horrible hotmail, So this will a lot briefer.

Since I commenced the radio oncology last July my PSA has gone down & down. From a high of 1.09 in March 2015 to 0.31 in September, 0.09 in April and now only 0.03. That is definitely a victory for this treatment in mopping-up the rogue cancer cells & preventing them from migrating. The urgency in going to the toilet is a small price to pay for that. I do value the forum provided by YANA and hope that more & more men are getting well after this terrible scourge.

John's e-mail address is: norrongpress@hotmail.com


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