Scared Newby

Hello Jovian and welcome. I am glad that you feel you want to share your story with us and am sorry that your relationship is in trouble. The cancer diagnosis and treatment is difficult for the whole family and I am aware there are others on the forum whose partners have been unable to deal with it and are in a similar situation to you. I know that our community champion Brian Millibob may have a couple of suggestions for organisations which might help. Loneliness is a fear many of us have as the diagnosis makes us face up to what life will be like without our partners. What to do about it depends on your own nature but some men find a community with organisations like Men's Sheds or with a local prostate cancer support group. Others are happy sharing on line and certainly we can help with a metaphorical hand hold with help and suggestions for any questions you might have as you face the next stage of your own journey with treatment. We also have a banter and laugh about many other things as well so I hope you will find some form of support with us and maybe help others with your own experiences.

I don't know whether you have had any help with impotence and erectile disjunction but there are things available to help with penile rehabilitation. I have attached a link to a previous thread which came up with some suggestions so you can click on it if you want to.

 Sex after radical prostatectomy... 

As a community we are here to try and answer any questions and no we do not get embarrassed.

As you have had a prostatectomy you probably know that salvage treatment is on the cards, the question is when? This will be determined by the rate at which the PSA is rising but the cut off point is usually 0.2 when you will probably have a scan to see if anything shows up. There is one school of thought which says that hitting the recurrence hard and fast gives better long term results and keeps you on the curative pathway. 

It would help us to help you if you could supply more information such as Gleason, TNM, initial PSA plus your recent ones. If you would like to you can put a little bit about yourself on your profile page, but no pressure - have a look at others by clicking on the icon next to their name to give you an idea of their journey. For some it acts as a reminder of their own personal journeys and can be an inspiration for others on a similar pathway.

I can’t add anything to this caring & comprehensive answer, except to say that you shouldn’t be scared of radiotherapy & hormone therapy.  Both these treatments are temporary and the accuracy of radiotherapy these days means that any long term side effects are increasingly rare.  Post prostatectomy, there are treatments available for ED, so stick with it, even through hormone therapy (when you won’t feel as frustrated as you will have no libido).  
Stay strong and stay in our little community of caring people.  You are not alone.     AW

Good Morning Jovian 

Another warm welcome to the Macmillan Online Community from me although I am so sorry to find you here under the circumstances.

Sadly you are correct. You are not the only member of the Community whose personal relationship has been torn apart by Prostate Cancer and as a Community we are here to support you. I don't know if you are aware of "Relate" this is the UK's largest provider of relationship support - you can contact them at - www.relate.org.uk

Moving on to your own support may I make a few suggestions-

Andy's Man Club - andysmanclub.co.uk - this is a judgment free group for men where you can open up about "storms" in your life.

Men's Sheds Association - Alwayshope has mentioned this group which is a social group for men to improve well being and loneliness - menssheds.org.uk

"Maggie's" - do you have a "Maggie's" near you. This is a support charity for anyone affected by cancer - you can just drop in, have a brew and chat and receive any support you need.

What about having a "Buddy" to chat to each week. At Macmillan we can match you with a "Buddy" who will call you once a week for a chat - about life, not just cancer. I know some of the Buddies, they have been there and have a wealth of knowledge - here's the link - https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies

If you think some Counselling would help you - we have free sessions with BUPA - again - here's the link - https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

Finally, don't forget, there's our support line on 0808 808 00 00 (8am to 8pm 7 days a week) - they are a great set of people who can offer you some extra support.

We aren't here to judge, we are here for your support. We all have Prostate Cancer as a common bond and we will be happy to help. You can read about our personal journey and how we got here by clicking on any user name or avatar.

I hope the above helps, if I can do anything else please don't hesitate to contact me.

Best wishes - Brian.

Hi Jovian welcome here and I am so sorry to read about your problems.  I can’t add to the great advice you have already received but can assure you that on the cancer side, this group will help you through it.  Stay strong, best wishes, David

Thankyou for the links Millibob. I have the number for relate too. There’s a local one to me though think I will just call at this stage once I build up the courage. 

What can I say. I am overwhelmed with your responses.
In 4 years I have never received such positivity help and friendliness. 
My wife and I discussed the prostatectomy prior to the op with the known consequences as my father died from PC when I was 14. 
I have tried the normal ED Viagra and Tadifil, Vaccum Pump works but not intimate enough for my wife being quite literally ridiculed when I tried it. She is totally put off intercourse. With me anyway. Injections and implants I feel do not warrant it in my current relationship. 
My PSA was 8.2 pre-op and 0.008 post op Dec 2020 it is now 0.061 so slowly rising. I’ll dig out the Gleason score asap. 
I know I’m better off than a lot of people. Im really sorry if I sound like I’m over reacting. I’ve just never been in this situation. I’ll take a look at the so kind and thoughtful suggestions you have all made. I really appreciate it. Thankyou all for being there. 

Hello Jovian 

Thank you for your kind reply and also the details in your profile. as I quite often say "we are a decent bunch" and we do try and look out for one another. 

ED or Erectile Dysfunction is very common in men above 40 (more common that you would think) and as you have been through surgery for the removal of the Prostate it's something that can be expected. Whilst you have tried various methods to get things "up and running" and they haven't worked, have you tried speaking to your G P for a referral to your local sexual health service.

I don't think for one second you are over reacting, just like us all here - you don't want to be here. As  for any questions you have - fire away, nothing here is too trivial or taboo!!

Best wishes - Brian.

Hi Jovian

like others, I’m sorry to read about the issues you’re experiencing.

As others can testify to on here, I’m fresh out of the consultants office yesterday as a follow up to my surgery, and this is what is lined up for me and what he said about my current erectile dysfunctional state.

I will be unlikely to achieve a natural erection anytime within the next 12 months or so, I’ll be put on 2.5mg of Tadalafil during this period and given a pump to work with as without using it regularly I will probably never be able to achieve a natural erection

In a year from now I will be prescribed full strength Tadalafil or similar to take as and when necessary, but whether that means continuing with the 2.5mg daily I didn’t think to ask.

In my op I lost the right bundle of nerves so the right side of my penis will never be “hard” without aid, which is why I will have to take a full strength viagra each & every time I have sex in those months to come.

Of course I may be teaching you to suck eggs here and if that’s the case I apologise but if you can take anything from this then hopefully it will help you.

Best wishes

john

I can sympathise with Jovian, hormone therapy I can cope with if I keep very active but it's easy to sit down and start thinking and worrying about what comes next.

Speaking from experience over several years now, I agree full strength viagra and a pump can be very effective indeed and, once you get used to the "preparation" stage each time, as close to the natural carefree method as it could be. It's most certainly better than the alternative!

Good luck to all who try it.