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 Linda, you are very welcome, I'm sorry to hear your husband is Gleason 10 as am I, and it doesn't mean the end, Linda, my PCa variants are it's intraductal, castrate resistant, hormone sensitive with cribriform pattern 4, I imagine these mean very little to you, and hopefully never will, I just want you to know that despite these and not being able to have chemotherapy or surgery "due to heart problems", life is good nearly three years on, and with more years to come, I am writing this while on holiday, our7th this year, sure I'm a little slower than I was, but I'm 100% independent, go to the gym 3 times a week. and have no problems with being intimate.PS, mention his discomfort due to HT injection to his CNS.

Eddie xx

Hi again Eddie- your words are more reassuring than you could possibly imagine. As I’m sure you’ll appreciate it’s easy to let your imagination run away with you right now with so many unknowns. I will mention about the hormone injection not being great - already learning from you that there may actually be some alternatives to consider with whatever treatment is put in place going forward.

So inspiring that you’re fit, active & enjoying frequent holidays.

Thanks again - I’m sure I’ll be messaging you again. 

Linda xx

HI Linda, thank you, It's amazing how many treatments there are these days and new ones coming through all the time, I don't watch TV, but love studying and have found a few treatments which may be suitable for me and a couple nearing the end of trials too, as well as plan C, D and E, which are still to come, Linda at your appointment, it's a good idea to record it as often we don't take everything in, and ask for a copy of your husbands notes and scans. take care.

Eddie xx

Hi love I have been with my husband from the beginning Nearly 5Yrs now I have been able to ask questions that my husband had wanted to know and forgot to ask as treatment can sometimes makes them forgetful and the specialist looks at me to tell the truth how he is as his answer is yes I'm fine we got told in may he only has  months now to live and I'm still by his side looking for signs but scared you get an inner strength from somewhere I have been to every appointment and so pleased I have hope this helps 

Hi Linda I have been to every appointment with my husband as sometimes treatment can make them forgetful and you can ask for them.in the five yrs we have been going the Dr now looks at me to see if he is telling the truth as he's such a tough old boot and just says I'm fine no no pain yes I'm eating so that's one of the reasons I go if it's bad news like ours was in May you are together you get an inner strength and the nurses all know us and make me a tea while we wait he looks so well and still got his sense of humour it brings you closer together yes I've reached out for help and I'm scared of the future but we take each day as it comes hope thus has helped love x

Hi - thank you for talking about your experience. I think we’re both quite frightened of the future as the news has come as such a shock as with everyone in this situation. Adjusting & coming to terms & uncertainty all rolled into one. I think at the moment every tweak or ache/pain we think it’s kind of creeping through him. It’s like something nasty & uninvited has come to live with us if that makes sense. It really helps hearing from others who are sharing what’s heppening to them. Can’t thank you enough.

Linda xx

Thanks Eddie - I’m absolutely dreading the date of the oncologist meeting - even that word scares me! I will make sure to ask for a copy of his notes & scans. 
I can look beyond it when you talk about your 7th holiday, exercising 3 times a week etc!! At the moment my husband’s sense of humour & optimism have disappeared - we’ve been married for nearly 44 years & never stopped laughing so I’m looking forward to seeing him smile & laugh again & will do my best to help him through all of this. 
Speaking & sharing invaluable.

Linda xx

I think it's the fear of the unknown I've proved to myself how strong I can be shed tears up the sand hill with my dog as my daughters husband was going through cancer of the throat at the same time as my husband liver cancer one in Blackburn and one in blackpool.a great 5yrs but they pulled themselves through it together but it's  very hard at the moment life span for liver cancer 5yrs 20th November when he had his op but we stay positive and take each day as it comes been away 4 times in 3mths and getting itchy feet again for scotland you stay strong love x

Morning Linda, I see your posting at 3am, poor sleep is normal, as is feeling awful meeting your oncologist, just be prepared, ask them every question you can think off, if you haven't got your cancer nurse specialist CNS yet, she may be at your  meeting, as she will be one of your MDT, she will be your connection to them and your oncologists, so get her contact details, If there is time before your meeting, could you get away or visit friends, even going for a nice long walk helps, married 44 years, that's wonderful, congratulations, Sheila, my partner and I have only been together 17 years, but we are getting married next summer, it was meant to be next Wednesday, but my eldest daughter, not Sheila's, "biologically" isn't well. We all find the strength to get through this, many couples love and relationship deepens, as I have been both carer and "cared" for, I like many others would say, being the carer is harder than being the bared for so please don't forget to look after yourself, It's so important you do. 

love Eddie xx

Hi Eddie - that’s a shame you’ve had to delay your wedding but it will happen next year & you have it to look forward to. Hope your daughter gets well soon. 
I’ve learned a lot from your posts - not least to make sure we ask questions & speak up & ask for help in need. We’ll give all of this our best shot. We’ve got our CNS - she’s nice - very approachable & I think may be helpful going forward. 

I’ve always been an insomniac & at the moment I’m just getting through as best I can. Sleep & anxiety meditation does help a bit. Posts in the middle of the night & reading are ‘par for the course’ for me. Thanks again - love Linda x

Hi Eddie - that’s a shame you’ve had to delay your wedding but it will happen next year & you have it to look forward to. Hope your daughter gets well soon. 
I’ve learned a lot from your posts - not least to make sure we ask questions & speak up & ask for help in need. We’ll give all of this our best shot. We’ve got our CNS - she’s nice - very approachable & I think may be helpful going forward. 

I’ve always been an insomniac & at the moment I’m just getting through as best I can. Sleep & anxiety meditation does help a bit. Posts in the middle of the night & reading are ‘par for the course’ for me. Thanks again - love Linda x

Morning Linda, and thank you for your kind words, my daughter and I boht have our MDT meetings next Monday, so a little stressful here, hence the 10 days at the Scilly Isles, the weddings all sorted, just a change of dates, we could have had it sooner but Sheila has SAD really bad and migrates to Australia for 4 months from November.

It's good to hear you already have your CNS, mine is at urology but she's on my MDT, and arranged for me to have an open door arrangement with her and urology, so i can pop in anytime without an appointment. sorry to hear about your insomnia, i had it for 18 months, I did relaxation therapy which has helped enormously, If your interested, you can attend or do it online at www.maggies.org PS if you have a local Maggie's, there well worth a visit, patients, partners and family all welcome open 9am to 5pm, no appointment needed, take care.

Eddie xx

Hi Eddie - thank you for your reply and as always reassuring words. Hope you and your daughter’s MDT meetings go ok tomorrow - goodness you do have a lot going on. 
We’re still waiting for a date for an appointment with the oncologist - we’ve both done lots of reading and have plenty of questions ready to ask. 
I think the elapse of time has helped us both process things a bit better and especially for me linking up on this chat line has made me feel less alone. I’ve taken a look at where my local Maggies is and my son has already reached out to them with questions which he’s found helpful.

Anyway - I’ll be thinking of you and your daughter on Monday and hope there’s some good and positive news for you both. 

Love Linda x

Morning Linda, and thank you for your kind words regarding Mandys and my MDT meetings, it's almost certain it will be surgery later in the week for Mandy, i I have some idea where my treatment is going, I have 2 scan results tomorrow  too which may influence my treatment.

Good to hear your researching, on reputable sites I trust, the more you know, the better you can prepare. Regarding your questions, if you do a copy to give to your oncologist, they can answer them in an order which is easier to follow and understand, but always record meetingsand ask for a full copy of the meeting and any scan results.

I'm glad you are both feeling a little better, it's so tough in the beginning for everyone, and knowing your not alone and can talk to others on a similar journey, and realising your emotions are the same as everyone's is comforting 

Good your in contact with Maggies, they are wonderful and offer so much support, my Maggies are both about 70 minutes away, but well worth the drive.

Thank you again Linda, for tomorrow, it's appreciated, and best wishes to you both.

love Eddie xx 

Thinking of you Eddie & sending lots of very positive energy. 
Love Linda x

Thank you Linda, that's very kind of you and appreciated.

love Eddie xx

Hi Eddie - just wondered how things are with you? Whatever’s happening I hope you’re doing ok.

We saw the oncologist today. It’s advanced localised prostate cancer - hormones & radiotherapy treatment. In lymph nodes but not bones. Took your advice & recorded the meeting which has proved very useful & also got copies of everything we could. 
Treatment feels daunting atm but we’re trying to take one step at a time & not let our imagination run away with things. 

Love Linda x

Hi Linda, it's good to hear from you, and glad you got to see your your oncologist, your diagnosis is very similar to mine, as is your treatment, Linda, i'm sure your aware of possible side effects from hormone therapy, and there are a few, not everyone gets them, most of us just get some of them and they are usually treatable and eventually pass, but 1 fatigue, almost everyone gets, and it's the only one you can prepare for. It will really help your husband in the months to follow if he could get himself as fit as he can, it will lessen the fatigue and help him feel better physically and emotionally. treatment does feel daunting, but you get used to it, and fingers crossed, your lucky with side effects and HT give your cancer a massive blow. Radiotherapy is usually a few months after HT starts to give it time to shrink the cancer, I will have everything crossed for you both.

Thank you Linda, I am ok, I see my oncologist next Tuesday, as my PSA is rising, my treatment will change. I don't know if I told you but my eldest daughter is also fighting cancer, her 2nd time in 12 years, she's been through radiotherapy and surgery with chemo to follow, when her recurrence was1st diagnosed, the consultant gave her a year, so we swapped oncologists, and with just chemo to  come, her fab team are confident her chemo will cure her, you can imagine how happy I am, my very best wishes for your treatment.

love Eddie xx

Hi Eddie - just wondered how things are going with you & your daughter. Hope you are both getting through ok. 
My husband is getting lots of hot flushes with the hormone treatment but is managing to make light of it so far. Lots of appointments ahead - treatment & monitoring. 
Thinking of you.

Love Linda x

Hi Linda, It's good to hear from you, my daughter, Mandy has recovered from surgery, which went as well as possible, she will be having a scan next week and starting chemo Jan 2nd, all her tam are confident of it being done to cure.

I've been getting faulty scan results, and have seen my oncologists 4 times in 6 weeks, but my last 2 a fortnight ago CT/contrast and NM bone, show my cancer, 5 organs and 8 lymph nodes, is undetectable except for 1 lymph, which we are hoping to hit with SABR, there are 2 markers on my ribs, probably cancer but will know on Tuesday for sure, if it is, they will get hit by SABR as well.

Linda you said hubby is getting lots of hot flushes, but is managing them, if they become a problem, Menoforce sage tablets from Hollande & Barrett can help, and try to see appointments as opportunities to expand your understanding and discuss your concerns, I like Maggie's too and also go to the one in Leeds.

best wishes to all your family.

love Eddie xx

Hi Eddie - really sounds like positive news for your daughter & yourself with treatment going forward. Feels like they’re really on top of situations which is very reassuring. 
Thanks for the tip with Menoforce - anything that might help is very welcome. He also has a cold pack for his forehead sometimes which is really quick to lower his temperature. Every little helps as they say. 
Thanks for keeping in touch & take good care. 
Love Linda x