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Rob's Story

Ethnicity
White British
Age
60-69
Work
Retired
Sexual Orientation
Straight
Geography
Yorkshire
Relationship status
Married/In a Civil Partnership
Rob's Profile Picture
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Radical Prostatectomy (Surgery)

Tips and advice for any sexual side effects of treatment

Sadly, my cancer was aggressive, so by the time I had surgery the tumour on one side of my prostate had breached the prostate capsule. Consequently, it was not possible to save the nerve bundle on that side. This caused impotence, which I still suffer with despite trying tablets, a vacuum pump and injections (I have seen only limited improvements with the latter two treatments). My only advice would be to push for an MRI scan and biopsy if the PSA level increases significantly (even if a clear biopsy was recorded within the previous 12 months).

Tips and advice for any physical side effects of treatment

Evening Primrose Oil seems to help with 'hot flushes'. Chronic fatigue resulted in a lack of exercise, which led to weight gain. I suffered for several years before a new GP at my surgery suggested that I stop taking Bisoprolol (a beta blocker used for high blood pressure). So, my advice would be to ensure that any medication is checked for compatibility with any/all treatments received.

How this treatment impacted my life the most

Impotence has been the most significant impact of surgery, although my wife has been incredibly understanding and supportive. I also still suffer from stress incontinence, which means that I constantly have to wear pads/shields.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

Given that my prostate cancer was so aggressive (the tertiary Gleason score was 5+3), I may not have survived if I had not opted for surgery.

Radiotherapy

Tips and advice for any sexual side effects of treatment

There are plenty of treatments for erectile dysfunction (e.g. tablets, vacuum pumps and injections), so don't suffer in silence.

Tips and advice for any physical side effects of treatment

If you suffer with fatigue, it's best to give in to it rather than attempting to push yourself (which will undoubtedly make matters worse). Check that any prescribed medication is not exacerbating the fatigue problem.

How this treatment impacted my life the most

For the first two weeks, I flew through the treatment. However, fatigue then kicked in and lasted so long that I was no longer able to sustain attendance at work, so had to take early retirement (in 2018) on medical grounds. Unfortunately, by 2021 the cancer had spread to a pelvic lymph node, so I had 5 sessions of Stereo-tactic Ablative Radiotherapy, which caused more fatigue.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

The two different types of radiotherapy were an attempt to remove the cancer altogether, but sadly it didn't have the desired outcome - it was still worth a try though.

Hormone Therapy (injections and relugolix tablets)

Tips and advice for any sexual side effects of treatment

It is extremely important to maintain a close/loving relationship with you wife/partner in spite of erectile dysfunction.

Tips and advice for any physical side effects of treatment

Evening Primrose Oil seems to help reduce the number/severity of 'hot flushes'.

How this treatment impacted my life the most

Hot flushes are very uncomfortable and debilitating (which makes chronic fatigue problems even worse). The loss of sex drive has also been difficult to cope with.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

Despite having had a radical prostatectomy and two different types of radiotherapy, my cancer spread further (into several abdominal lymph nodes) and my PSA level increased to 5.72; since starting the hormone injections, my PSA level is now less than 0.02, so is considered to be unrecordable.

Chemotherapy

Tips and advice for any sexual side effects of treatment

Having chemotherapy, in addition to hormone injections, has completely diminished my sex drive, which has had a more significant impact on me than I expected.

Tips and advice for any physical side effects of treatment

The side-effects of chemotherapy were nothing like as bad as I had expected - yes, I have lost hair thickness and got very dry skin on my face and hands, but the latter problem was resolved by using moisturising lotion. Listen to your body - if you need to rest/sleep, don't try to ignore the signals.

How this treatment impacted my life the most

I struggle with sleep, particularly in the 2-3 days following each treatment (which I assume is due to the high dose of steroids I need to take on the day). I no longer have a sex drive, which I am still coming to terms with - I knew that the chemotherapy and hormone injections would remove testosterone, but I wasn't really prepared for the psychological implications.

If I had to do it all over again, would I choose the same treatment?

Yes

Why did I give this answer?

Given that my cancer is no longer curable, my Oncologist advised me that early chemotherapy treatment - in conjunction with hormone injections - would help to control the disease for longer. Hopefully, this should lead to an increased lifespan.

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