Hello

Hello Yorkshire girl and welcome to the prostate cancer family. To start you off I have attached a link to a free book you can download which explains all the tests and treatment options depending on what kind of prostate cancer your husband has. 

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

If you can give us a little more information like initial PSA, TNM and biopsy results then this will help us to point you in the direction of what options your husband might have.

Initially it is very scary to be told that you or a loved one has cancer but prostate cancer is usually very treatable and the statistics are that 98% of men die with it, not of it. Also prostate cancer is usually slow growing so you usually have a little time to sort things out.

Please ask any questions no matter how small or silly you might think them and we will try and point you in the right direction.

Hi there,

Thank you for your reply. His PSA level was 45.5 and his Gleason score was 9 = 5+4

Something on a letter states:  IPSS: 17/35 but I have no idea at all what that means. 
He was told, via a phone call, that the cancer had spread to his pelvis and lower rib cage. He began oral HRT and last week had his first HRT injection. 
We thought we would get to speak face to face with a cancer consultant but have only spoken to Urology nurses via telephone with the exception of the nurse that gave him his injection who was somewhat surprised that we hadn’t seen a consultant. Due to the times we are living in, we’re not sure if this is the normal progression of things and treatments these days. My husband is 74 years old and up to now has been moderately fit and healthy. 
Thank you very much for your help. It feels so lonely dealing with this. 

Hello Yorkshire girl 

Another warm welcome to the online Community - I am Brian one of the Community Champions here on the online Community - I also have Prostate Cancer.

i can't add much more to the post above from Alwayshope apart from asking if you could add your husbands diagnosis details to his profile. This not only helps us (we don't have to keep asking you) it serves as a record of his journey. To do this click on the chair top right on your home page, then profile and then edit. Once you have written something don't forget to save it. (You can read my profile by clicking on my name or avatar).

As an aside are you still in Yorkshire or a Yorkshire lass who has moved away? (only asking as i live the other side of the Pennines where thecomes from!!).

Don't forget we are all here for you both and no question is too trivial.

Best wishes - Brian.

Hi Brian,

Thanks for the message. Yes full blown Yorkshire Lass originating from the steel city of Sheffield but now living in West Yorkshire. 
Thank you for the advice - I’ve updated my profile and added some information about my husband’s results. 
His PSA was 45.5 and his Gleason score was 9 (5+4)

We were told the cancer had spread to his pelvis and lower rib cage. 
He’s been on oral HRT and had his first injection on the 3/1/25.

I’m just a bit lost at the minute to be honest. 

Hello Yorkshire girl 

From Oldham on the other side of The Pennines.

So he's got an aggressive cancer (Gleason 9) but the good news is it's been found. The Hormone Therapy (HT) he is on now is Bicalutamide and once he's had these for 2 weeks he has had his first Hormone Therapy Injection.

The Hormone Therapy starts working now and will put the cancer "to sleep" and stop it growing and spreading. It works very quickly to reduce his PSA.

I assume the hospital have had an MDT meeting and he should have been advised what his treatment pathway involves. I would urge you to contact your team and ask if this has been done and what the plan is moving forward.

On a cancer journey it's a great idea to keep all telephone numbers and e-mail addresses you are given - you never know when you might need them.

I hope this helps - anything else just ask - we are one big family here.

Best wishes - Brian.

Hello again. The IPSS is the International Prostate Symptoms Score and 17 puts it in the moderate scale. To start you off, your husband has advanced prostate cancer and the Gleason 9 means that it is aggressive. Hormone therapy is the first stage of treatment which deprives the cancer of its food testosterone and holds things at bay until a treatment plan can be put in place by the oncologist. I would get onto the Urologist urgently and check that they have referred you to the oncologist who is a specialist dealing with cancer as they are the ones who will decide if an additional type of hormone therapy is added, whether radiotherapy might be of benefit or, depending on the level of spread, whether chemotherapy might be suitable. Unfortunately you have to be proactive at times in order to ensure that you get the right treatment within the timescale required in order to get the best outcome. If you have the urology nurses name or telephone number then try seeing if they can help. Alternatively contact your local hospital and see if they have any information about your husband and whether they can give you an idea of when you will get an appointment.

The hormone therapy can come with a range of side effects - some men get away with few, others get a whole range but there is usually something which can be done to help with them and we can point you in the different directions to get help so don't let him put up with them. He will probably find that erectile disfunction and loss of libido are noticeable fairly soon and that the genitalia may start to shrink. If he is worried about this then penile health can be helped with tablets as well as a vacuum pump which helps to maintain blood flow - available from the doctor. He can help reduce side effects generally by getting as fit as possible, particularly with adding in some resistance training as the loss of testosterone results in muscle loss.

At 74 and being relatively fit then there are definitely treatments available. My husband was diagnosed with advanced prostate cancer in July 2020 at the age of 76 and is still going strong so be positive but politely push for the treatment he needs 

Hi again,

I love the other side of the Pennines too. My parents and all aunties and uncles etc live over there as my Mum and Dad moved to Yorkshire from Wigan. My Dad was a miner. 
Thanks for the information. I do not know if any meeting has taken place as the only face to face person we’ve seen is the nurse who gave him his injection last week. I do keep asking when will we actually get to see someone but just keep getting told ‘an appointment with the oncology consultant will be coming through soon’!

They do so much by telephone now but as I still work, I’m not always here when they call and my husband can never listens to what they say so has very little he can tell me. I’m thinking if I can ask for permission for them to update me on things if I call them back. 
It can be very frustrating. 

I went through the cancer battle with my eldest sister for 10 years. I lost her in 2009. We sought out every bit of information we could, which in turn helped the group of friends we made during our chemo therapy sessions  at hospital.  We really got stuck into the whys and what ifs but at the minute my husband is just accepting whatever they send our way - which is very little. I need to know what is the path forward, what could happen, how will he be affected, and a million other questions. 

I cannot thank you enough for making contact with me over this. 

Thanks Brian x

Hello Yorkshire girl 

My youngest has moved to Wigan from Oldham a few weeks ago - small world!!

So as my friend Alwayshope has said you need to be assertive and push for a meeting with oncology.

Every hospital has a PALS office (Patient Advisory and Liaison Service). You can find their contact details on the hospital web page. You can contact them by telephone or e-mail, tell them it's cancer and you have anxiety - you need to know when your consultants meeting is and what the way forward is - they should be able to help.

My condolences about your sister, I am so sorry to read that. As I said in my earlier post, this cancer has a "bond" between us on the Community and we are one big family.

Best wishes - Brian.

Yes small world indeed. 

Thank you for that information Brian. Much appreciated. 

Time I made a nuisance of myself then

Take care xx

Hello Yorkshire girl 

Yorkshire girl said:

Time I made a nuisance of myself then

Good on you - keep us posted as to your progress (or lack of) - I have more arrows in my quiver.

Best wishes - Brian.