Scans

Firstly, put the kettle on and get a herbal tea sit down and read for a minute, that’s what I would do.

You have already found out this is a couples disease. It’s a different world. No matter who you are how fit you might be it’s a game changer. Your new normal will change with every test and letter.

I’m a 4+4 too.

The normal scans are the CT and the Bone scan not a pet scan. I had recently (in the last 6 months) WBMRI (whole body MRI) scans which are amazing, if you can get an expert to read them. Both Pet and WB are expensive and you health service providers might balk at the cost.

The other thing about your treatment plan, it will start of with HT (hormone treatment) and that will get you time because HT puts the cancer on pause, which gives you time to attend to a scan or two, but also put the cat amongst the pigeons where it comes to sex. OMG! Please note that you both need to be careful in this new normal you’re both in.

This is an anonymous site and you are welcome here to vent your feelings. There are rules obviously but we are here to support you in your new medical pathway.

Time is valuable so make the most of every day. Three years ago when I was told I had prostate cancer I was blown away. I needed help and I received it here. But you’ll need help and support from friends and family but especially your partner.

your world has changed there’s no going back but don’t panic, help is here, there and everywhere. Go easy on yourself and don’t panic or use Dr Google too much. You have time to become more aware of yourself and the cancer and then your treatment. There’s time for all that and more.

so sit down and have a cuppa with me, I’ll put the kettle on.

Good luck

I will pop over, no sugar. Thankyou fir your very kind words. It really is very much appreciated.  My wife just want's to get things ( HT etc) started, but until I have the scan(s), we can't start anything. Appreciate your response

Hi Percy 

So it's broken through the gland edge  and really u just want to see if spread to the bones, probably unlikely PSA not massively high.

I would have thought a bone scan would be fine and tell u what u need to know.

I think starting in HT soon to stop it in its tracks would be good.

Please remember I am not an expert  just my opinion with info have picked up over the past 12 years

Best wishes 

Steve 

Milk?

Don’t rush into any treatment.

Ask us anything (on this forum)

Take a day at a time.

lastly, our kettles always on.

Hello Percy (PercyP76b08f) 

A warm welcome to the club you didn't want to join and I am sorry to find you here.

The normal diagnostic process for prostate cancer is MRI, Biopsy, CT scan and Bone scan - a PSMA - PET scan isn't normally used for the diagnosis - the others should give you the answers you need.

Personally I wouldn't go down the private route as the scan will only tell you what the CT/Bone scan results are and you may have issues returning to the NHS system from private treatment.

My personal view would be to get the dates for the tests and as soon as they have been done ask your team to start you on Hormone Therapy right away (surgery will not be an option anyway!).

Sadly in this journey you have to advocate for yourself and although the NHS is great you sometimes have to gently push your case forward.

As you have already found out - this is a couple's cancer and it will affect your wife and family. A couple of facts to tell her are that treatments are getting better all the time and 98% of men with Prostate Cancer die WITH it not OF it.

Feel free to ask anything - however trivial - this journey is full of twists and turns.

Best wishes - Brian.

That is very reassuring. 

Thankyou very much Steve

Thank you Brian. I will definitely keep in contact via this site. Its a really helpful platform although for me and as mentioned previously,  I appreciate any input from you all.

Hi PercyP76b08f , you have had a biopsy and MRI which confirm PCa and some local spread. The next stage is a bone scan just to confirm no spread here.  I don’t think a PSMA PET scan would be useful and certainly I wouldn’t cross into private at this stage.  Although you are (just as I was) anxious to start treatment, PCa is slow growing (and you are G8), so I doubt if even a few months would make any difference.  I hope your team get you on HT soon and then you can relax.  Others have already told you this is a couples disease. Both of you will be worried and scared as this is life changing, but life does go on.  In many ways PCa has brought my wife and I closer together over the years. Please feel free to ask any questions, the group here are amazing.

Hi to you both 

yes this stop and start isn’t useful for your sanity  . As we found out and I contacted every single MP, MSP and heads of every party . To be honest it was my way of coping.

We received some letters back from first minister and health minister spouting facts and figures but no help other than seek out a maggie centre / MacMillan . So it’s a political minefield. It should not be about money it should be what the professional has asked for. 

My husband had a bone & MRI scan and all of the usual tests . He is on HT and had RT. His PSA is currently undetectable and has been for nearly a year now. 

for your wife  - I was exactly the same as we are married now 53 years and it was the last thing on your mind .This group of people in this forum are amazing it doesn’t matter what you ask someone will answer. We also have a bit of a laugh which is needed.  

you are both going through similar to every man & partner when first diagnosed but it will get easier once there is a plan in place .

hugs to you both

Liz & OH xx

Hi David, I have read your " story and dstes", it seems im maki g a fuss compared to yourself. I appreciated your fast, and very helpful response. Thankyou once sgain. I cant believe how much this helps, along with the amount of fantastic responses. I appreciate everyone of you.