Recent Diagnosis

Hi AMacG sorry to see you here but welcome.  Others will be along soon but just wanted to tell you I was Gleason 9 T3bN1M0 over 7 years ago and am still going.  It would help if you could add the N & M if you know them.  It’s one hell of a shock but this is the worst part, once on treatment there is no rush (even on a G9). Please ask any questions and we will provide honest answers.  David

Thank you David, that has given me so much hope.  I'm still trying to work out what it all means but when I get home from work, I'll look at the paperwork and see what the N & M is and, if its ok with you, I will get back to you.  He is having a bone scan next Friday and then will be on tablets for 28 days along with a monthly injection for 3 months followed by 20 days of radiotherapy.  That's all I am fully aware of at the moment.

Hello AMacG 

A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to meet you under these circumstances. I am Brian one of the Community Champions here and I am just starting my 4th year on my personal Prostate Cancer journey.

My diagnosis is T3aN0M0 Gleason 9 (5+4).  To help you understand all these figures, here's a link to our guide to - The Staging & Grading of Prostate Cancer. I also have my journey from diagnosis to date on my profile which you can read by clicking on my user name or avatar. I have had issues but am technically "Cancer free" at this time.

Everyone has a different journey so the best advice I can give at the moment for your husband is to keep as fit as possible as whichever treatment path he takes, fatigue will be waiting. As he's starting Hormone Therapy I would suggest he gets a prescription for calcium & Vitamin D tablets as this treatment can cause bone thinning.

I hope this helps, we have a great bunch here so feel free to ask any questions however trivial they may be.

Best wishes - Brian.

Hi AMacG

Although it’s nice to ‘meet you’ here, I’m sorry that this meeting has been prompted by your husband’s diagnosis.

getting through all the diagnostics was, for us, the worst of all times if you are like me and other wives who post here, your emotions will be running very high - tears, anger, anxiety, shock, grief ( this is a life jolt which seems to change everything and all old certainties snatched away), insomnia etc etc. please rest assured that , for most of us, these emotions do settle in time!

you ask for advice! Here are my tips:

1. Get a diary! Write down the dates, times, m names and contact details of every single medical encounter and what was said! It will all become a blur as you progress through the pathways and it’s very powerful to say ‘you said…’

2 Get as much information about PC and care pathways as you possibly can. Knowledge is power! This will inform your decisions as a couple and your active involvement in medical appointments.

3. Get your husband talking! My husband refused to engage with any of it! I felt so lonely! It’s better to tackle ( forgive the pun!) this together but that took some time to happen with us

4. Remember that if there are delays or problems within the NHS system , :you have a right to complain. To circumvent delays and if you can, let each and every department that you are happy to fill a cancelled appointment at the last minute.

5. Remember that TODAY is important. Tomorrow can take care of itself. Live life, enjoy what you can , have treats and outings. Prostate cancer is known as mostly slow growing and , if not curable, very treatable and manageable with medical intervention. There are newer treatments yet to come down the line and the differences and improvements we have seen in the last 2 years or so are very encouraging.

6 let your husbands close male relatives ( including sons)know that , as your husband has been diagnosed they will be considered at higher risk and should get their PSA tested.

i won’t give any more tips but I’m absolutely positive that others will fill any gaps I’ve left . I do wish you and your husband well and please let us know how things go and please feel free to ask any questions - we don’t consider any question stupid! 

< hugs> xx

Thank you Brian.  Your advice and encouragement is so helpful.  Particularly as it sounds like your diagnosis was very similar to my husband.  I think as the consultant has called it 'high risk' that its put me into a tail spin.  I will definitely look at the staging link you sent over too.  I hope you stay well and thanks again.

At last, hearing from another woman is super helpful.  My wonderful, yet Neanderthal (!) husband as gone completely into himself and all he seems worried about is whether or not he grows a pair of boobs!  It should be funny but given the diagnosis, I'm finding it isolating as I don't want to worry him further.  I will definitely take on all your hints and tips and I cannot thank you enough for taking the time to share them with me.  Hugs in return. Ax 

Also, I will get the vitamin D and calcium sorted, so thank you again.

Hello AMacG 

AMacG said:

worried about is whether or not he grows a pair of boobs!

None of us are medically trained here but if that's a side effect he wants to avoid there is medication such as tamoxifen (there are others too) and he needs to get that sorted ASAP.

I do have a nice pair of moobs but being on many other forms of medication that's one I extra medication decided I didn't want.

Best wishes - Brian.

Thanks so much Brian.  I will see if this is a possibility as he genuinely is so focused on this that it may alleviate his anxieties.

Ax

Hi AMacG - there's nothing like a shared adversity to bring people together! I'm sure other wives and partners will be along soon to give their support!!! I must say, we havent enjoyed the side effects of the hormone therapy but it's far and away better than the alternative of potentially losing him!!!  xxx