Newly diagnosed - so lost and scared, please help

Hello Paulina - Welcome to the club!

There's much to cover in your post and I will see what I can do.

The diagnosis is a shock and Prostate Cancer is a journey that you both take - you will need each other for support. 

T3b - this means the cancer has spread to the seminal vesicle - so I thought once it had left the gland surgery was out - I have been wrong before though.

Having said that then if it's to be HT/RT then the sooner he starts this treatment the sooner the cancer's food (testosterone) will be taken away - then it will cease to grow. As for support - you and the family just need to be there for him - my family treat me as if there's nothing wrong - yes I do get the support I need but we lead as much of a normal life as we can. Keeping fit and exercise is the do all and end all for HT/RT - you must exercise - fatigue is always lurking round the corner.

The children - all ours are adults - so we just told them outright - my 9 year old grand daughter was told I have cancer but don't worry - I am on a treatment plan - I may have off days but I will tell her if anything changes - and she's fine and sensible with that.

A Prostate Cancer diagnosis isn't the end of the world - 98% of men with prostate cancer die with it - not of it.

My personal diagnosis - Gleason 9 (5+4) T3a N0 M0 - they thought mine had gone walkabout so no surgery - 21 months down the treatment path - I am still on HT - I feel amazing - so there is hope!  You can read my journey by clicking on the icon of the beach, I do hope this gives you some inspiration.

Others will be along to post what I have missed - but that's a start - don't lose hope - stress, anxiety and tears come with the cancer (and for us men on HT the tears come even more often!!)  - you are in the right place for help. Post whatever questions you want, however trivial they may appear to you - you will get an answer - they are a great bunch on here.

(I am away for the weekend so good luck - I will check back in on Monday)

Best wishes - Brian.

Hello Paulina

The shock of the diagnosis and the diagnostic pathway were, for me, the worst part of this journey so far. I look back to Sept 2022 - April 2023 as one of the worst times of my life. I couldn’t sleep and if I did manage to get a couple of hours sleep I would wake up thinking ‘ prostate cancer’. I cried! Not just a little but bucketfuls! Whenever anybody spoke to me the tears flowed! It was darned annoying cos we were still wearing masks and mopping tears and blowing your nose is not easy with a mask!

we got through the radiotherapy in March and then Serendipity took control! We hadn’t had a proper holiday since before covid and a special offer for a half price river cruise popped into my inbox. We booked and we went! And then the tears flowed even more! Tears of laughter this time, though! We found ourselves in Germany with beautiful weather and wonderful company ( all strangers at the start) and in wonderful accommodation. It was the best holiday ever and, actually, our turning point. We realised that we could be slaves to the cancer or we could do our best for longevity but darn well enjoy ourselves in the process. We haven’t buried our heads in the sand but we do get on and do the things we enjoy doing . 

it takes time to work through the emotions and, yes, you do go through some sort of grieving process but the emotions do settle. Give yourself a bit of time!

as for telling the children- our grandchildren in England were 14,12 and 4,,. The 12 year old had picked up something and asked me outright if Grandad had got cancer and where it is. I answered truthfully and as simply as possible. I stress ‘answer’ because I let her lead the way with her  questions. The hard one was , ‘is he going to die?’ I told her that as we get old we will all die at some point but that the doctors were going to do everything they could so that Grandad lives for a long while yet. So, I didn’t promise anything but I spoke to reassure. The four ' year old also asked if grandad was alright. Her mummy told her that grandad had a poorly tummy and would be going to hospital every day for a few weeks so the doctor could make him better. we obviously told our adult children the full facts. I guess how we tell them has to be age appropriate. 

as for supporting your husband - my advice is to go with him to appointments . Prepare with him a list of all the questions you need to ask beforehand. I also did a lot of googling and asked a lot of questions on this forum. For me, finding out and knowing what was what gave me a sense of control in a world that was spinning out of control. I used to then translate all the medical terminology into everyday words so my husband could understand what was what and make his own informed choices. . little treats, kind words, showing him my love and concern, driving him to appointments when he was exhausted etc etc etc- the things we always do for someone we love. I have hated the hormone therapy side effects with a vengeance but we’re pulling together to get through it as best we can. I ‘ve told him I am here for him - always etc etc

So , yes, I guess there is an element of trying to be ‘the rock’ but for me I think there is also an element of sharing our feelings too. We can support each other and be each others rock, perhaps? 

I hope all goes well for you and your family

,

Hi Paulina

I echo the thoughts of Brian  and WW.  

My feeling is, with your husbands stats, if there has been any escape, then it won't have moved very far. 

As  Brian has said, if they suspect the PC has breached the gland even marginally,  then Hormone Therapy /Radio Therapy  should be the recommended option. The HT, which starts a few weeks/months before the RT, will stop it in its tracks. Based on this, the diet recommended by Poole hospital, whilst on RT ( the sunbed as Brian calls it!) is, in shirt,  low fibre everything, no pulses, no green veggies,  no fizy drinks, caffeine or alcohol. One lapse, when I had green veggies and a couple of glasses of wine, did it for me.

Finally, if the recommendation is HT/RT, then fatigue is the worst part of it, in my experience. Any exercise, particularly outdoors, will make a big difference. Gardening, walking, running - anything.

I hope this helps both you and your husband at a very difficult time.

Regards

Stuart

• Hello and welcome. I totally understand how you are feeling. My husband was diagnosed in April and at first we thought it would be ok as the MRI and bone scan didn't pick up any spread. He then had a pet scan and then the bottom fell out of our world. To keep the story short, you can read more on our profile, husband is now having chemo with the idea to treat and not cure. Your emotions will be all over the place. I thought I would never laugh or feel happy ever again but the lovely people on here supported me and told me otherwise. I didn't believe them at the start but they were right. Yesterday whilst husband was having his chemo I went to Maggie's center and they were wonderful.  I strongly suggest you see if there is one in your area and either give them a ring or pop in. They offer all sorts advice and could possibly help you with what to tell the children. To be honest husband is coping with this far better than I am. He stays so positive and says he is fine because he dosent feel ill. I think this mindset is really helping him and it keeps me on track. Just take each day as it comes, baby steps. I wore myself out at the start spending hours doing research and then scaring myself silly. We are all here for you so don't ever feel you can't ask questions. I also find the support telephone line at Macmillan a great help, talking to their cancer nurses. They explained things simply, sometimes the oncologist confused us. X

Hi Paulina

Sorry to hear about your situation.

Others have given good advice on various aspects to your questions.

I'll pick up on one of your points, treatment being offered.

Surgery, RT and HT or just RT and HT.

I would say that if not curable just go for the RT and HT.

Why put your OH through a major surgery along with side effects and then further potential side affects with RT and HT.

RT and HT is Def more simple, don't forget he has to go thru all this mentally.

I would ask the specialists how he would benefit having the surgery as well. A major point.

Also keep looking elsewhere for clinical trials, I realise they are not offering anything in this respect. Try cancer research UK.org.

Please remember this is just my  opinion and doesn't mean that I,'m right.

Good luck

Steve 

Hi Paulina,

Your husbands diagnosis is similar to my partners . Look at my bio  by clicking on my name . There you will find his treatment and drugs, exercise is very important and supplements of vitamin d and calcium are good for bones. Abiraterone is a great drug as a first line treatment to really knock back the cancer, research it and its use in the stampede trial.( In the trial they found that it extended men’s lives by a significant amount by being used as an early treatment rather than later ) Push for that as a drug if you want it . It’s worth considering it as an option all depending on where your consultants think you are at the moment. 
You are in early stages of panic, you have a lot more time than you think at this point and your treatment will really knock back everything. Take a breath. My partners PSA was 115. Over 100 is an indicator of metastatic spread statistically, your husband is under so statistically he falls into less likely category. Very much on the cusp and very early days. Everyone’s cancer journey is different as there are different variables. My partners cancer has been hit really hard to pull it back and he is doing well with the treatment . 
Telling the children , that was my biggest fear . Though they are 25 and 21 they are always my children in my eyes . We waited till we had a grip on the situation and were able to talk calmly about it. We knew in October but waited till January to tell them. By then we were in a better place and were able to talk about it easily, because it was easier as we knew we were on an excellent path of treatment by then . We used words like “treatable” “manageable “ responding well and not to worry . We answered every question they asked and they accepted the situation really well. That turned out to be a lot easier than we thought and by holding off we didn’t transfer any panic into the situation. 
“How do you not lose hope” Seriously don’t lose hope, I’m not medical but your husband is on the same road that my partner is travelling along but a way back and it’s a long road ahead with many possibilities and not all bad. 
You are also helping him, because you have come here to find answers, you are reaching out to find information that will help and you are supporting him by just being there at his side. 

Keep strong, the more knowledge you acquire the more control and understanding you will have of this cancer and things will fall into place and not be so terrifying. There’s hope and plenty of it. 

Best wishes to you and your husband 

L

So sorry to read about your husbands diagnosis at such a young age. My husbands stats on diagnosis were T3a 3+4+7 N0 M0. The cancer had started to break through the prostate capsule, but he was told that it was treatable and curable. Initially he was told that his treatment choices would be surgery or HT followed by RT. At his next appointment he was expecting to tell them which option he'd chosen, but we were shocked to be told that he needed a CT and Bone scan to make absolutely sure it hadn't spread because this would mean him needing chemo and rt. Fortunately both scans were negative so surgery was still possible and this was the route he chose.

I am surprised that your husband has been told that one of his choices is surgery then radio and hormone therapy. I may be wrong but I thought that the latter 2 were only used after surgery if there was a possibility that they', but  not removed all the cancer cells or if the regular monitoring of the PSA levels showed a rise. My husband had the surgery in June and his first PSA test 7 weeks later was less than.0.01,so classed as undetectable. No further treatment required , the PSA rises to 0.2 or above, then further scans will be needed and radiotherapy. 

One of the reasons my husband chose the surgery route was because he can have radiotherapy if the PC re emerges but it's not possible to have surgery after radiotherapy.

You can read about our journey if you look at my profile.

Regarding telling your kids. Our kids are grown up and I told them everything and left them to decide what to tell our 5 grandchildren. My daughter told her 15 and 13 year olds the full story as they had lost their other grandma suddenly last year and the 13 year old had taken that really hard. Her 15 year old has learning difficulties and she didn't show her emotions when her other grandma died, but she has been studying health and social care for 2 years at school and wanted to know about the staging. Prior to this her 13 year old had a real attitude, but suddenly she has become more affectionate and loves a cuddle. I saw them last week for the first time since June as we live 250 miles apart, my husband stayed at home as he still wasn't ready for the long journey.. She didn't tell her 10 year old and 6 year old, but the older one overheard them talking and demanded to know what was going on, so he was told. He also was exceptionally affectionate and wanted to hold my hand all the time. When he was told about his other grandma dying, his reaction was 'I've still got my other nanna. The 6 year old hasn't been told much as he's not mature enough to understand, but I explained to him at the weekend that the next time he see's grandad he must not jump on his tummy like he usually does because he's got a poorly willy. He only has one kidney so he's not supposed to get involved in any rough and tumble, but he and his siblings are always scrapping, so I am expecting that grandad will still get jumped on.

Our son's 15 year old was slightly more complicated as his mum and dad are divorced. I told his mum and left her to decide what to tell him and she decided to wait until he had finished his mock GCSE's. I saw him at the weekend and asked him how much he'd been told and he knew his grandad had cancer, but didn't know much. Rightly or wrongly I decided to explain it to him, with his dad present,, including the fact that his dad will need to start being tested when he is 45 and he will also need to do the same. The poor kid is also mixed race so he is more at risk. I told him that I will still be around to kick his dad's backside to get tested, but it will be another 30 years before he needs to worry and by then I probably won't be around to do the same with him. I also told him that by then medical science will have advanced so better treatments may be available. He is quite mature for his age, so he was able to understand and deal with this.

I wish I could give you some advice about diet, but my husband refused to change. I think this was because it was the one thing he was in control of. After his surgery when I had full control of the kitchen I made some subtle changes, but this was mainly reducing the amount of unhealthy fat and sugar. We went to a wellbeing session at our hospital the week before last and one of the speakers was a dietician. I wish we had seen her before my husbands surgery as she put a lot of myths to bed. Her job is to help cancer sufferers to get through their treatment at a time when they may need extra calories and once treatment is ended to modify this. I would suggest that you ask for an appointment with the dietician at your hospital as they may be able to help you with family meals to fit in with your husbands needs. 

I suggest that you read as much as possible on the different options. We were given booklets and pamphlets at the diagnosis appointment, but Prostate Cancer Uk has lots of useful information on their website. There's also an NHS website called Predict Cancer where you can add your husbands stats and it uses these to calculate things like the likelihood of  the various side effects. 

Lots of advice here. As someone else said, the first few months of diagnosis and confirmation were the worst. Not knowing what’s coming next. It’s an emotional rollercoaster for both of you. 
my numbers are similar to his, I was diagnosed July 2022 so I’m 15 months into it. 
wasn’t offered surgery, (wouldn’t have had it anyway from what I read), once it’s escaped to the seminal things, I don’t think they can get it out, so radiotherapy and hormones. First 9 months on hormones I was an emotional mess. I’ve learnt how to handle it better now but some things still make me cry for no apparent reason! The RT was relatively easy, as it progressed I needed to wee more often and that causes its own problems, finding a loo isn’t simple. Trees help.

We didn’t tell anyone until a treatment plan was decided so we had all the details. Our 2 kids, 14 and 16 we told first sat around dinner. First question was from 14yr old, was I going to die? I said we’re all going to die but this cancer won’t mean I’ll die soon. Explained it’s a bit tough for a while and we’ll have to adjust how we do things but it shouldn’t impact our lives too much. I was totally honest, they didn’t know where a prostate was!! They took it all well as we we’re totally honest. 
It did affect us for about 9 months, we usually travel a lot but from last September to this August we never went hardly anywhere, I was tired. Fatigue is really the only lasting issue I have. Still do today. 
But, they now just treat me the same as ever, I don’t let it stop us doing anything. We went away in School holidays for 4 weeks, lots of walking, did everything we would normally do, I just arrive after a walk 5 minutes after they did!

Men with our numbers rarely die from this, I never thought I’d die  I have complete trust in my consultant in Suffolk where we live, no confidence whatsoever in McMillan, they made me feel worse, lots of oh dear comments and no encouragement so after 1 meeting with someone like my grandma, we don’t go anywhere near.

My one thing I hate  is our sex life has gone. Not for me, but for my wife, I really miss that and I’m sure she does to. The only part that makes me sad and despair. It’s not been easy to accept and still isn’t. That’s the worse thing for me, the rest is easy. 
Support for our wives isn’t anywhere I found. You’ll be affected immensely and your support is invaluable. You have each other, so lean on him as he will you as you adapt. 
I’ve got 2 years of HT to go, I’ll be glad when it’s over. 
Hope you can get help and he gets good treatment soon.

Thank you all for welcoming me to this forum and responding to my post. The words “men die with it - not because of it” give me so much hope. Yes, you are right, the community here is such a great bunch. Never in a million years I expected so much support and time so generously invested to answering my questions. I am humbled and so grateful that we are not alone on this journey. Thank you! 

Thanks, Brian. Your progress is inspirational but even more so the positive energy to fight this illness. I know that strong mindset will be critical on this journey. And yes, exercise! My husband isn’t particularly fond of it, so that will have to change and quickly