Hi Lindabobs, and a warm welcome to the forum, so sorry to hear your husband has metastatic prostate cancer, and how frightened you are feeling, what you are feeling is perfectly normal, It's an awful thing to be told you or a loved one has cancer, so please don't feel bad about the way you feel. It's the hardest time going through tests, waiting for results and for treatment to start, but once it does and you start fighting back against this awful disease things do get better I too have metastatic prostate cancer MPCa, diagnosed July 22, though our diagnosis is similar, I have a very rare and aggressive variant, I was given a prognosis, which is just a guess and ignore, though mine was never curable, many guys with MPCa are, and i know many guys still here 10 years on, I was in healthcare 15 years, 5 in cancer care and todays treatments are so much better than just 5 years ago and getting better all the time, my very best wishes to you and your husband at your oncologist meeting.

Eddie xx

Hi Eddie - thank you SO much for taking the time to reply. Just knowing there’s someone out there to speak to is massively helpful in itself. My husband has also been told he has an aggressive cancer. MRI no 5 & Gleason score of 10  - in lymph nodes & bones - so everything seems to be the worse it can be right now. He had a hormone injection yesterday & felt quite unwell. Hey ho - mustn’t make assumptions before oncologist. 
t Thsnks again - Linda 

Hi Eddie - hope you’re doing & responding well to treatment. Nige’s radiotherapy starts on 17/2 so it’s good to have a start date. Four weeks scheduled. His ct scan next week. Few issues with blood pressure but seems to be settling down at last. Saw the Oncologist today. 
Hope you’ve managed to meet your granddaughters but if not that it happens soon. 
All feels a bit real now.

Love Linda xx

Hi Linda, treatment change OK, nearly 6 weeks now, fatigue and hot sweats, so going through the male menopause again,lol, and bone scan results encouraging, negative regarding ribs, and lower spine, they said, scan shows suspicious markers suggestive of cancer, I have damage from a broken back, lesions, arthritis and osteoporosis with multiple fractures to my lower spine, and I'm leaning towards a misinterpretation of the scans AGAIN.

Only 4 weeks to go, so how are you managing the waiting, I know it can be tough, but it will be here before you know it, and he will get his tattoos at his scan next week, they're painless, and its likely Nige's RT will be very similar to mine, likely a slightly higher dose to a larger part of the lower pelvic area,  again this is painless, and the radiographers are so nice and patient and will help you through treatment, and if you have any questions or concerns, they will answer them as well, and if I can help you only have to ask.

We, their  Nana and I have been to see our granddaughters twice, their gorgeous, and everyone doing well,  I wish I could send a photo, 

As Always my best wishes to you both.

love Eddie xx  

.

Hi Eddie - always good to hear from you & glad you’re getting through treatment. Your words always feel reassuring & make things seem doable & ok. Thank you again for your support. 
I think we’re both glad we have dates now - 4 weeks of rt. Hoping after that we’ll be able to plan a holiday . 
Delighted you’ve met your granddaughters - I don’t doubt they’re both beautiful!! It’s such a privilege to be grandparents isn’t it. I never had any sadly as both my parents were older when they had me but I love every minute of being a nanny to mine (3 boys & a girl) 

Anyway - take good care - keep well & many thanks.!

Love Linda xx

Hi Eddie - firstly how are you doing? So much can happen in a short space of time sometimes - that much we have learned. Hope you are doing ok & coping with whatever has been sent your way. 
Nige has just finished first of 4 weeks rt - getting to understand routine & learning as we go. Stresses like parking at the hospital been tough. Bladder/bowel preparation been interesting but ok. Sure you’re completely familiar with all of this. Been warned going forward not to book anything until treatment finished as side effects will be unpleasant. 
We’ve been trying to find out what happens after this 4 weeks & so far it seems just psa tests which seems a bit vague. Hopefully there’ll be a ct scan too. 
We took a leaf out of your book & went to The Lakes for a few days last week which was lovely.

Look forward to hearing from you.

Love Linda xx

Hello, Linda, my dad is in hospital and asked me to let you know when he is able too, he will reply. M, 

Hi - thank you so much for taking the trouble to reply. Please give your Dad my very best wishes when you see him.

Love Linda x

That's so kind of you, many thanks, dad was transferred to his specialist hospital yesterday after 3 days, and is finally getting the treatment he needs and is responding well. I will pass on your good wishes, and our best wishes to you and your family, I'm Mandy, dads eldest. 

Thanks Mandy - so glad your Dad is getting the right treat now. He’s been a huge help in the time we’ve been chatting on this site - so positive & inspiring to me. As you well know it all feels like quite a ‘minefield’ & a waiting game so any help or words of advice are very welcome.

Love Linda x

Hello Linda, many thanks, I've been through cancer twice, and only a couple of weeks ago was told I'm cancer free having twice been told I was incurable, so please never give up and being positive is proven to boost the immune system and give better outcomes, and it's better than being miserable.

I know dad won't mind, but mum was diagnosed with ovarian cancer 2 days after my all clear and was also told she was incurable, but dad researched all the oncologists and found a team he liked for mum, and had an appointment in 2 days and surgery 4 days later, which went very well and mum will have chemotherapy in 3 to 5 weeks.

Linda, my mum Lesley's side of the family are cursed with ovarian cancer, everyone has had it and none were cured, but for the first time ever mum has a chance of being the first to be cured, so if your not happy with your team, you are allowed to change them. Mandy x

Hi Mandy - your family have been through so much & I learned from your Dad too that things are always worth questioning. We’ve always been lead to believe that the NHS is best when faced with cancer but when we asked what happens after 4 weeks of radiotherapy it seems they rely purely on PSA results which we’re also lead to believe aren’t entirely reliable. So we’re going to ask for a ct scan to at least find out how things are going. 
Did you & your family go privately? Our oncologist seems very defensive at times - as though he feels we’re trying to catch him out when we ask anything. I guess with people constantly looking things up all the time he feels he’s against the internet sometimes. 
The news about your mum is fantastic & I hope she goes from strength to strength. You must also feel incredibly relieved after being told you were incurable - just fantastic. 
Thanks - love Linda x

Hi Mandy - your family have been through so much & I learned from your Dad too that things are always worth questioning. We’ve always been lead to believe that the NHS is best when faced with cancer but when we asked what happens after 4 weeks of radiotherapy it seems they rely purely on PSA results which we’re also lead to believe aren’t entirely reliable. So we’re going to ask for a ct scan to at least find out how things are going. 
Did you & your family go privately? Our oncologist seems very defensive at times - as though he feels we’re trying to catch him out when we ask anything. I guess with people constantly looking things up all the time he feels he’s against the internet sometimes. 
The news about your mum is fantastic & I hope she goes from strength to strength. You must also feel incredibly relieved after being told you were incurable - just fantastic. 
Thanks - love Linda x

Linda, thank you, we have each other for support, I read your post to my dad, he said there are many good oncologists, but sadly not all, but don't confuse being distant with being a poor Dr, it's better to have a good one than a friendly one, but trust is very important and showing you will do everything for your partner and you understand his condition and treatment options will make them listen to you 

After radiotherapy their are so many dying and dead cancer cells floating around the blood, an accurate PSA test isn't possible for up to 8 weeks.

Dad said, by all means ask for a scan, but its not necessary, your PSA tests are, there much more important after radiotherapy than before and remember your radiotherapy will keep working in most cases for 2 years or more alongside the hormone therapy, so 3 monthly PSA tests should be enough for now to monitor everything, along with 6 monthly scans 

No we didn't go private but we researched oncologists, and in our family we have 2 nurses,  a healthcare worker, a social worker and dad with his many years in cancer care, and we don't know 10% of what an oncologist knows, so ask all the questions you have, even if it's about trust and attitude, but in a nice way.

Thank you again, we're all hopeful for mum, but dad's cancer now in his spine along with him now having spinal stenosis and his osteoporosis now classified as chronic, is difficult for the family. Mandy

Hi Mandy - we gleaned more about what happens after this rt treatment than we’ve got before so please thank your dad. Learning patience but not much in the way of options - just hoping things will become clearer as we go. 
I do hope your dad isn’t in too much pain & discomfort - thank goodness he has his family for support. I think of him often & wish him the very best. 
Please keep in touch when you have time - it’s very much appreciated.

Love Linda x

Hi Linda, and thank you for your support, I'm feeling much better today, my heart has stabilised and I'm able to eat normally, and all being well I will be home tomorrow, I'm sorry but I have a few posts to catch up on and I'm still tired, but I will get round to reading yours and replying in full, PS the tumours in my spine were anticipated, and new treatment started before they were detectable and in just 6 weeks my PSA is own over 90%, and I'm virtually pain free, and looking into SBRT. take care my friend

love Eddie xx

Hi Eddie - I just wanted you to know I’m thinking of you - DON’T expect a reply. Just hoping you’re getting through ok.

Love Linda x

Hi Linda, and thank you, I'm feeling fine, I found out on Monday I don't need heart surgery, and tomorrow I'm off to Scotland, visiting friends then family, who we will be travelling together to the Scilly Isles for a wedding next Friday, sadly not mine, so will have to make do with being best man, we were hoping for 3 weeks in the Scilly's, lol, but are happy to have 6 days, anyway enough about me how are you my friend, and how's your husband doing, please feel free to post me even though I'm away, I do have time for my friends.

love Eddie and Sheila xx

Hi Eddie - that all sounds very positive & I’m delighted for you. Great you don’t need heart surgery. So pleased you’re feeling better. 
Nige finished his 4 weeks of rt on Friday. Just the fun side effects to get through now which he’s done well to manage with a careful diet so far. Then as I know you’re aware it’s just hormone injections & regular monitoring now. 
Hope your family are doing ok too. 
Take care & enjoy the Scilly Isles. 
Love Linda xx

Thanks Linda, I'm delighted to avoid heart surgery too, and I'm feeling pretty good, just had a lovely relaxing day in Scotland with family before the long drive to Shropshire tomorrow to spend a day with my newest granddaughters, 10 weeks old and gorgeous, I wish I could send a photo.

That's great Nige, is through his RT, and great to hear he's standing up to side effects so well, can I ask Linda, is Nige taking any bone supplements as treatment can weaken them, it's good to take something to be safe, and how did you find RT, I found everyone staff and patients so friendly, a lovely couple I met have become close friends.

Family is great, thank you my friend, looking forward to seeing them at the Scilly's.

I know from experience being the carer is a tough calling, so how are you doing Linda, I hope your looking after yourself as well.

love Eddie and Sheila xx 

Hi Eddie - good to hear from you as always & great also to hear you’re travelling & seeing your beautiful granddaughters! 
I mentioned to Nige about the bone supplements - he’s always reading up & looking into things & takes any advice on board - so thank you. 
I’m doing ok thanks - up & down at times but Nige has a great sense of humour which helps me enormously especially now he’s more himself generally, We’re both very determined to give everything our best shot with exercise, reasonable diet, planning travel & seeing as much of the family as we can whenever we can. Our grandsons are all very sporty so that’s great for us to go along & support - huge pleasure. 
Unfortunately my youngest brother had a stroke recently - he lives in Portugal so we’re hoping to fly from our house in France to visit him as soon as we can. Just trying to get a few things in place beforehand. So - plans afoot! 
Anyway - thanks for your support, kind words & inspiration. Stay well & happy.

Love Linda xx

Hi Linda, I am so sorry to hear about your little brother, and hope he's doing as well as possible and finds a way through it 

That's so good to hear Nige,  is much more like his old self, and having a sense of humour is fab too, it's so helpful as is family, especially the little ones,  and having your ups and downs is normal my friend, so, please don't bottle things up

Nige has probably read this already, but bisphosphonates to help your bones take about 6 months to start working, so any indication  or possibility of bone weakness, you should start them.

Sadly we only had a couple of days with the twins, as we have a wedding at  the Scilly Isles on Friday, we only arrived today, hence the late reply, keep up the exercises, and  reasonable diet, I like that it's probably similar to mine, the main thing I avoid is processed food.

Glad to help my friend, and I will have everything crossed for your little brother, and of course you and Nige. I'm doing ok Linda, we're at my favourite place with the most important people in my life, looking forward to my favourite auntie finally getting married after 61 years, with her partner, a wonderful lady I've known all my life.

love Eddie and family xx

Hi Eddie - how are things with you? Hope you’re doing ok managing to get away as much as possible & see your family too. 
We’ve planned a bit more now the radiotherapy done so going to Portugal next week for a few days to see my brother who’s had the stroke. My other two brothers will be there too so first family reunion for ten years. Then going back out to France in May & June all being well. 
Nige seems happy & optimistic atm which I’m very grateful for. 
Hope your daughter’s treatment going well too. Love Linda xx