Some Embarrassing Questions.

Hi Julian and welcome 

I'll come back to your questions but firstly do you have a staging or MRI report giving. tumor size and if contained in the gland,  they mention a lymph node?

Best wishes 

Steve 

Hello JulianB ,

Welcome to our club. Very few people wanted to be here but, once they have found it, they are glad they did.

I can't answer your questions completely, because my cancer's staging left only the radiotherapy open to me.

Some of them are within my experience though, so I am going to roll up my sleeves and give it a shot.

1] I have been on hormone therapy for 7 months. It can muke about with your emotions but, as far as I am concerned depression is not on the list. This doesn't mean that I don't feel down from time to time, I do. I think that is just because this is a serious disease that we are fighting. However good the treatments are, and however effective, just having the illness changes your attitude. I have had a rough time for the last week or two because an old back problem has reasserted itself, so coping with pain has dragged me done a little Not to the point of depression (and, like you I have some experience of this), but a period each day where I am just "down". Life is till good though.

2) Erectile dysfunction, to which I will add loss of libido. Straightforwardly, my libido went on holiday with my erection as soon as hormone therapy started, and show  no sign of returning - not even returning. To a large extent I am insulated from this problem as my wife has gynae problems which leave penetrative sex as a no-no in any event.

I have also always tried to follow the thought "this is what I have got to deal with, so next step please", and this has been no difficult. Sex is fun, but as both myself and may wife have problems in this area, just being together is so much more important. It does not define either of us, and so is relegated to the "do you remember" stack.

If it is more important to you, then all your treatments have their problems. For me, hormone therapy clobbered it to the extent that I stopped thinking about it.  You can have dry orgasms. Surgery can affect erectile dysfunction to a similar extent as HT and RT. An important point is that if you are on some pathways  HT stops and some of these issues begin to resolve themselves. It is probable that your prostate gland will have stopped functioning, so I suspect that dry orgasms are the order of the day. I'l let you know when I get to it.

3) The problem of orgasms is addressed above, but you might like to see this: https://www.cancer.org/cancer/managing-cancer/side-effects/fertility-and-sexual-side-effects/sexuality-for-men-with-cancer/ejaculation-and-treatment.html

4) From my own reading there does seem to be a small element of risk that other cancers might arise. It is small enough for me to want to correct your consultant to say "could" instead of "would". And then I would congratulate myself that he/she thinks you are going to be here in 10 years to worry about. You will be watched, and other problems will be jumped on with the proverbial hobnailed boots.

Lastly, I am going to preempt one of my friends on here (Alwayshope ) and draw your attention to this:

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine.

It is a really general briefing.

Best wishes, and keep smiling.

It makes people wonder what you have been smoking.

Steve

Hello Julian (JulianB) 

Another warm welcome to the Macmillan online Community from me. I am so sorry to find you here but as Steve mstev2 said in his post above - 

mstev2 said:

so I am going to roll up my sleeves and give it a shot.

I am Brian one of the Community Champions on the group so like Steve I will "give it a shot". My answers like Steve's are honest personal answers.

1 - Hormone therapy can bring on depression - one in two people with cancer get depression - we can help you with this.

2 - Surgery or HT/RT - you can forget penetrative sex whilst on treatment. Both treatments give you ED and then once the treatment is over you can get back to normal with a little bit of help. Trust me - life v sex I have chosen life, and on the journey me and Mrs M have found new ways to have "fun"!!

3 - See my answer to question 2 - life v sex. Both surgery and Radiotherapy depend on many things - no one can give you a guarantee.

4 - Radiotherapy comes with side effects and risks. Discuss your family history if/when you speak to the oncologist. There are some procedures that can help "space ore" is one.

To enable us to help you as much as we can please do update you journey to date in your profile, PSA's, Gleason score and TNM from the biopsy. To do this on your home page, click on the chair, top right, then, profile, then edit. Once you have written something don't forget to click on save. (You can read my journey by clicking on my name or avatar).

We are all being honest here, if it's a little harsh - that's how it is - we ae here for you and no question is too trivial.

Best wishes - Brian.

Hi Steve - thanks for responding. The senior Oncology nurse confirmed back in March there were no tumours evident on the scan hence they rate it level 2 on the PI-Rads scale. I questioned this with the doctor doing the biopsies and both consultants a and they all said you do not always see Cancer on the scan........The Consultant yesterday said I was rated T1 which I understand to mean that the cancer is contained within the Prostate. On reflection I am therefore wondering why they want to remove the Lymph Nodes and do a bone scan. Both said Gleason 4 + 4 is quite aggressive so they are probably being cautious. I hope this makes sense :) Thanks OK and I hope you are going well on your journey. Julian

Mmm, sounds a bit strange Julian

It looks like fairly aggressive but contained in the gland but not showing.

Yes, suppose understand them wanting to do a bone scan because aggressive but hopefully will be clear.

But the lymph nodes doesn't make sense if T1 or T2.

You need to check that out , ask why a T1 but nodes need removing, 

Steve 

I know all a bit odd. What confuses me is my scan and biopsy has been discussed at an MDT meeting so surely these issues were addressed. I am going to try and speak to the nurse tomorrow. Julian

Yes, let us know, the most important query is the lymph nodes

Best wishes 

Steve

By the way your query about which treatment  earlier, I had Radiotherapy which I found easy.Some side effects which do tend to go away after treatment is over same for the HT.

,

Hi Brian. Thanks for taking the time to respond. 

I will update my profile as suggested but what is a TNM as no one has mentioned this ?

I am worried about depression because due to PTSD (not caused by military activities though) I suffered severe depression to the point I could not function for a few months. I was prescribed Prozac which made things significantly worse. I now manage myself but am worried that starting to take chemicals will set me off again. To me this is as big a concern as the Cancer !

I totally agree life must take precedence over sex but being single with little sex at all for over ten years I will hardly now be attractive to the ladies on Match.com........I do not know why but I can accommodate the erectile Dysfunction but am struggling with the prospect of a cessation of ejaculation permanently. I need to get my head around it :)

I need to have a detailed discussion with the Oncologist as soon as the referral goes through. I have not heard of Space Ore but will Google it later.

Thank you so much.

Julian

Hi Steve - Thanks for responding and inparticular sending the links through which I have now read. Really useful information to say the least as are all your comments.

I am actually OK with the disease. Indeed, I genuinely feel lucky as I am sure there are many people who would give their right arm for my diagnosis rather than their own.

My concerns with depression are that I was very ill with it a few years ago. I wasn't just a bit down I actually could not function at any level. Antidepressants made me much worse. I have real concerns that Hormone Therapy could massively change my optimistic outlook on the Cancer and this could actually be the deciding factor leading me to surgery. I can never go back to the mental state I was in before.

You make good comments about the sex situation and I have taken on board what you say about libido. I did not realise that permanent dry organisation could result from Hormone Therapy and Radio Therapy as well as surgery. My thinking over the last few days was that if I could avoid surgery I would stand a better chance of erectile function and normal ejaculation. If this is not going to be possible I would probably sway towards surgery.

With regards to other Cancers the first consultant laboured the fact that bladder cancer was a likely possibility after radiotherapy. The second consultant contradicted this. I really need to sit down with an oncologist to understand the risks.

Thank you again and I hope your journey with this disease is successful.

I will let you now how I get on.

Julian

Good Evening Julian (JulianB) 

When you receive the results of a Prostate Biopsy you get a Gleason Score (you say yours is 8 (4+4). At the same time the biopsy produces a TNM score - see this link - Staging, Grading and risk Groups for Prostate Cancer. this enables your team to work out just what is going on. It's your "T" stage that tells you where the cancer is and "N" stage if there is lymph node involvement.

Both surgery and hormone therapy have risks - both can/will cause HD and Dry orgasms. After surgery you will not be able to ejaculate semen.

Personal opinion, you need to make a list of the pros and cons of surgery and Hormone Therapy/ Radiotherapy as to how they would affect YOU, not anyone else. For your research use only trusted sources and try to stay away from Dr Google. I will start you off with links to some of our guides;

Surgery to Remove the Prostate

Hormone Therapy - Prostate Cancer

Radiotherapy - Prostate Cancer

I have had 3 years Hormone therapy/Radiotherapy on a "Curative Pathway" - you can read my journey by clicking on my avatar. It's not been easy but for a curative pathway I would do it again.

Just remember - you need the facts and you must decide on treatment by thinking how it would affect you.

I am sure we can help you through your treatment and find you lots of help to keep your mental health as stable as possible.

Best wishes - Brian.