Hormone Therapy

Hello Regesch and sorry to hear about your situation.

I don't know that much about HT I,m afraid but to give us some more info , what did the MRI show and what was the Gleeson score? Also I presume that the bone scan was clear?

Steve

Yes Steve the scan was OK and all they said about the MR I was it showed a suspicious area, Gleason was 4+4 with I think 4 cores out of 14 positive.Last PSA (last month) .06. 

Why did I put Steve when It should have been Grundo.My apologies, 

So things don't look too bad then , it is still contained.

Going back to your immediate concern, I have heard of some shrinkage with surgery but have not heard of it before with HT. Hopefully someone will post with experience of this.

In the meantime can u mention the problem to your consultant or even GP?

I think that most side effects with HT go away or lessen  when u stop the treatment, do u know how long u are on HT for?

Steve

Hi regesch.

I’m sorry that you’re finding the side effects of hormone therapy so challenging.

I can only speak for myself unfortunately, but I have been on hormone therapy since January and I too have experienced significant genital shrinkage. Personally I’ve found extreme lethargy at times to be a far more troublesome side effect, but we’re all different aren’t we? And although most of the side effects of this treatment are predictable they will affect different people in different ways.

I’m not surprised that not too many men bring this up with nurses. I certainly didn’t discuss it myself, but I HAD read about it quite often. 

I DO feel that post-diagnosis me is a VERY different person to pre-diagnosis me, but I also feels that he needs to be. He is going to have to go through a lot over the coming year, and I’m not sure how well the old me would have coped. 

I really hope that things get easier for you. 

Very best wishes,

Jonathan. 

I’ve had surgery and hormone therapy plus salvage radiotherapy.

Hormone therapy definitely shrinks things, also loss of body hair, loss of muscle.

Unfortunately.....

See list of side effects here:

Possible side effects of hormone therapy

Orchiectomy and LHRH agonists and antagonists can all cause similar side effects from lower levels of hormones such as testosterone. These side effects can include:

• Reduced or absent sexual desire
• Erectile dysfunction (impotence)
• Shrinkage of testicles and penis
• Hot flashes, which may get better or go away with time
• Breast tenderness and growth of breast tissue
• Osteoporosis (bone thinning), which can lead to broken bones
• Anemia (low red blood cell counts)
• Decreased mental sharpness
• Loss of muscle mass
• Weight gain
• Fatigue
• Increased cholesterol levels
• Depression

Hi R

Steve or Grundo, it doesn't matter,  Grundo is just my stage name.

Steve

Yes, me too. That list is not a list of 'may be's. Most or all of that list may be felt and some are very serious. The marital and social impact can be very bad indeed.Depression, too often ignored or undiagnosed until very serious, can be life threatening (what a waste of expensive treatment that could be). Three plus years after ending HT my sexuality, erectile disfunction, breast tenderness, mental sharpness, muscle mass and power, fatigue, emotional resilience (not mentioned above) are still improving.

That said, my general health almost five years after diagnosis indicates that the difficulties, pains and emotional distresses have been worth it.

It looks quite promising. I have spoken to several professionals about this and get a lot of sympathy and as to length of treatment they have mostly come up with different times.The Oncologist said 3 years or maybe just a year (I think he saw the look of horror on my face) the nurse when I started just said "well you don't have to have it" and the last doctor said 2 years. So it looks like I'm stuck with it. I think the main problem is loss of control over emotions and aspects of my body, probably the only way to regain control will be whe the treatment stops.   

It looks quite promising. I have spoken to several professionals about this and get a lot of sympathy and as to length of treatment they have mostly come up with different times.The Oncologist said 3 years or maybe just a year (I think he saw the look of horror on my face) the nurse when I started just said "well you don't have to have it" and the last doctor said 2 years. So it looks like I'm stuck with it. I think the main problem is loss of control over emotions and aspects of my body, probably the only way to regain control will be whe the treatment stops.