I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

We have the diagnosis, not good, I need a friend

Email this conversation Print this conversation
User
Posted 15 Nov 2019 at 22:19

Well, seven weeks ago we were looking forward to our month long winter holiday and buying flip flops and sun cream. Today we are talking about incontinence pads, surgery and bone scans.

What an absolute nightmare this is. My lovely husband isn't poorly, we have been to the gym today, and he was buying bonsai trees yesterday. A routine test came back as PSA 12, the scan showed cancer, the biopsies confirmed it  as T3 with a gleeson score of 8/9 and we now have a cancer nurse. There is to be a bone scan on Monday, a meeting with the oncologist a few days later and surgery as soon as possible because it turns out to be a very aggressive form of cancer. We are going through the motions but are totally bewildered by the whole thing. I am worried for Colin, I am worried about everything, what if it has spread to his bones?, how is this going to affect his depression?  It has just happened so quickly it is almost of the radar. We are lucky because one of our daughters works for McMillan, so she understands the process, but both daughters idolise Colin, so we have to seriously consider their mental state. I have cried so hard that my face has hurt for three days. I have three children by a previous marriage, their own father, my ex, is laying in a hospital bed dying from a rare form of cancer that is now in his bones and blood and has eaten away his entire shoulder. Two of our daughters have father in laws with lung cancer. I have severe mental health problems, depression and anxiety, that make it difficult for me to retain information. When the urologist was talking to us explaining the diagnosis it was as it we were watching it happen to someone else. Luckily our very organised daughter was with us and took over, asking the questions I had typed out into a spreadsheet, they are on the case, Colin is just going with the flow, we are taking it day by day, but I cannot bear to think of my wonderful man suffering. He is 70 and fit and healthy, he is gorgeous and funny and marvellous, and I adore him more than life itself. I seem to have lived with cancer all my life, my father had stomach cancer 50 odd years ago, and my mum died of breast cancer when she was 51. I am glad that Colin is taking it the way he is, but really concerned about how he will adjust mentally now everything is gaining momentum. We are having a big family Sunday Lunch this weekend, before catheters become the norm, to be closely followed by incontinence  pads. I absolutely adore this man, we have been together for 23 years, but have only been married 9 months. I really need support and a friend, to help me stand strong beside my man to support him whatever our future holds.

Many thanks for listening to my ramblings, sending love to you all, I just feel bogged down, and need to be in contact with people in the same position as us, Colin would never use a chat room, but I need to be prepared to stand by him and protect him as much as I can, if you have a few moments any words of wisdom would be greatly appreciated. Many thanks x 

User
Posted 17 Nov 2019 at 10:51
It's worth noting that to exhibit no symptoms whatsoever is typical of prostate cancer, so the diagnosis comes completely out of the blue for many of us. In my own case it was my GP deciding to do a PSA test simply because I was over 50, and the result came back as 31!

The percentage of men with prostate cancer goes roughly in step with age, so around 70% of 70 year old men have it, although most will never know it or need treatment for it. Basically, getting prostate cancer is a matter of being a man and living long enough. It's a pretty inevitable consequence of the ageing process for men, so don't think of it as an unusual occurrence - it isn't, and it's a very treatable condition when caught while it's still confined to the prostate.

Best wishes,

Chris

User
Posted 16 Nov 2019 at 09:13
Try not to be too concerned about the bone scan. It's an entirely routine diagnostic test, and with a PSA of 12 it's very unlikely that the cancer has spread. Colin is on a curative treatment path, and prostate cancer has excellent long-term survival rates. It's just something to get over - a bump in the road of life.

Best wishes,

Chris

User
Posted 16 Nov 2019 at 09:19

Of course you are scared, and bewildered. You are very naturally asking 'What if ...?' But try not to - until Colin has had the bone scan you will not know the full extent of the problem, and the scan might reveal that the cancer is limited to within the prostate. Take it one day at a time, and accept that now Colin is under treatment, the prognosis is much brighter than it would be if his cancer had not been discovered. Assuming he has the surgery, the side effects and time needed to recover vary enormously from individual to individual. You can't know at this stage - for him they might be quite easily managed. Let's hope so. In the meantime, just try to keep calm and positive (for Colin - he will need a lot of support whatever happens). Does your hospital have a cancer support group? You can also speak to the lovely people at ProstateCancerUK, or Macmillan for information and advice on anything to do with Colin's condition, and get hold of a copy of the 'Toolkit', which will answer many of your questions.

Easy for me to say, I know - but worrying about 'what if..' will not help. One day at a time!
Best wishes (and a hug, if it helps).

Edited by member 16 Nov 2019 at 09:32  | Reason: Not specified

User
Posted 16 Nov 2019 at 09:32

Take one day at a time and carry on with all your normal things. Colin is being looked after and the medical teams do a fantastic job. It is bound to be troubling and it sounds as if you are dealing with a lot of things at the moment. Sometimes it seems as if everything is happening and you cannot have any control over things. It is the waiting that is the hardest but then you learn to cope. If you find you are struggling you can access counselling services where you can talk about the fears and feelings in a safe place without judgement. It is sometimes easier to talk to someone you don't know.Just be there for your lovely man and enjoy things together - it is the little things that make life better. Take care of each other. Don't despair - lots of friends here.

Edited by member 24 Nov 2019 at 16:01  | Reason: Not specified

User
Posted 16 Nov 2019 at 12:12

Understandable that when you have been touched by cancer as you have that you are so very concerned about consequences now. But even in cases where PCa can't be eradicated (and I am not suggesting this is the case here), treatments can be given that slow the progression of the disease. I think you might find it helpful to download or obtain a hard copy of the 'Tool kit' which gives a lot of information on PCa and various treatments. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

The specialist nurses who can be contacted on this site are well regarded for a personal conversation.

Try to be brave about the situation as you don't want to add to the stress Colin has about his diagnosis by seeing how badly it is affecting you.

Let us know how things progress.

Edited by member 16 Nov 2019 at 21:11  | Reason: To highlight link

Barry
User
Posted 16 Nov 2019 at 13:21

Jonathan was diagnosed in January. Gleason 9 PSA 38. All cores positive. We were told that it was ‘very aggressive’ . It’s scary. Every new bit of bad news was like being punched in the stomach. The anxiety overwhelming.

However - treatment in the form of hormone therapy started quickly.

CT and bone scans were clear. PSA dropped rapidly.

He then had 6 rounds of docataxel over 18 weeks and on Thursday had brachytherapy. He starts 5 weeks radiotherapy next.

The side effects of all of this can be a challenge. He’s done lots of dietary and complementary things to support it all.

It’s gruelling. But he’s here. We had a lovely 2 weeks in Spain in his treatment break. His PSA is 0.05. The future? Who knows - but no-one could have done more...

Here to talk if you need to. Jane

 

 

User
Posted 16 Nov 2019 at 13:21

I know just how you are feeling.  My 70 years old husband who I have been married to for 50+ years has just received the same diagnosis. He was told yesterday and was alone at the appointment as I was home looking after our grandaughter.

I am numb and cannot believe what is happening.  I had been nagging him to get a PSA test for a long time, I don't know why,  just instinct.  He has been fast tracked so from first PSA test to diagnosis has been less than 4 weeks, the bone scan is this coming week. We are due to go on holiday in just over a week, the consultant says we should go and when we get back they will have a treatment plan in place to discuss with us. We are coming up to the 10th anniversary of our son's death so an especially difficult time for us.

 

 

User
Posted 16 Nov 2019 at 15:04

The start of this journey IS devastating. I think it must be more so when you have experienced big losses already in your life, as of course many of us have at this point in life. 

Here to talk if you need to and I’m sorry to hear of the loss of your son. Jane

User
Posted 16 Nov 2019 at 15:07
Thank you Jane
User
Posted 17 Nov 2019 at 09:37

Hi Jane, thanks so much for your reply. I just wasn't prepared for the diagnosis, as Colin is not ill, he just had the test like I have mammograms and we both have the bowel cancer tests that come through the letter box (joy of joys!) When we were first told it was cancer we knew it was contained and fully believed it would be the watch and wait type, but now it seems all hell has broke lose and our lives are spiralling out of control, we were supposed to be going away for a month on Thursday, but that has been cancelled because the medics want to get started asap, which is great, but just such a shock. Bone scan day tomorrow, then a meeting with the consultant a couple of days later, our daughter who works for McMillan is  coming with us for that. I have mental health issues and I find it very difficult to retain information, due to extreme anxiety, esp as harrowing as this. Will keep you up to date, thank you so much once again,

Diane

User
Posted 17 Nov 2019 at 09:47

Hi, thanks so much for your reply, sorry I am late getting back to you. What an absolute mess. I cannot believe what is happening, and it sounds like you feel the same. It's the shock isn't it. We have bone scan tomorrow then meeting with consultant a couple of days later. We were going away for a month on Thursday, but had to cancel. How absolutely horrible that all this is happening at this difficult time of year for you. I cannot even start to imagine what it must be like to lose a child, please accept my sincere best wishes, sending love, because that is all we can do x

Diane

User
Posted 17 Nov 2019 at 11:53

Thinking of you both tomorrow Diane. Jane 

User
Posted 23 Nov 2019 at 16:33

I can’t believe how fast everything is moving whilst we are still trying to get our heads around the cancer diagnosis. The bone scan was clear for any spread and on Monday we go to discuss treatment options. I hope Colin has had good news as well.

User
Posted 23 Nov 2019 at 17:40

Thinking of you. Started in our cancer journey in mid Sept. Husband 63  PSA 5.9. After 3.5 years of active surveillance.

Gleeson 4+ 3. Surgery RRP 4 weeks ago. Consultant in 4 weeks for the result.

Share here and call the excellent nurses.

Good to take someone with you to the consultant appt. I could not. Write everything that they tell you down.

Take each day as it comes. As I was told by many people Prostate cancer if localised and caught early is highly treatable. 

I suffer from SAD and depression so to face this at this time of the year has been very difficult for me. My husband has been very stoic and patient. It will be a long recovery but there is support. 

User
Posted 23 Nov 2019 at 18:03

Feel for you. Post how you get on after the appointment. 

User
Posted 23 Nov 2019 at 22:43
Hi Diane,

I can't recall anybody mentioning this so far so I will do so. Fortunately, we don't get many trolls on this forum but it has happened. I would advise that if the surname as detailed under your and Colin's profile is correct, you remove the surmane to help avoid the possibility of any unwanted attention.

Barry
Show Most Thanked Posts
User
Posted 16 Nov 2019 at 09:13
Try not to be too concerned about the bone scan. It's an entirely routine diagnostic test, and with a PSA of 12 it's very unlikely that the cancer has spread. Colin is on a curative treatment path, and prostate cancer has excellent long-term survival rates. It's just something to get over - a bump in the road of life.

Best wishes,

Chris

User
Posted 16 Nov 2019 at 09:19

Of course you are scared, and bewildered. You are very naturally asking 'What if ...?' But try not to - until Colin has had the bone scan you will not know the full extent of the problem, and the scan might reveal that the cancer is limited to within the prostate. Take it one day at a time, and accept that now Colin is under treatment, the prognosis is much brighter than it would be if his cancer had not been discovered. Assuming he has the surgery, the side effects and time needed to recover vary enormously from individual to individual. You can't know at this stage - for him they might be quite easily managed. Let's hope so. In the meantime, just try to keep calm and positive (for Colin - he will need a lot of support whatever happens). Does your hospital have a cancer support group? You can also speak to the lovely people at ProstateCancerUK, or Macmillan for information and advice on anything to do with Colin's condition, and get hold of a copy of the 'Toolkit', which will answer many of your questions.

Easy for me to say, I know - but worrying about 'what if..' will not help. One day at a time!
Best wishes (and a hug, if it helps).

Edited by member 16 Nov 2019 at 09:32  | Reason: Not specified

User
Posted 16 Nov 2019 at 09:32

Take one day at a time and carry on with all your normal things. Colin is being looked after and the medical teams do a fantastic job. It is bound to be troubling and it sounds as if you are dealing with a lot of things at the moment. Sometimes it seems as if everything is happening and you cannot have any control over things. It is the waiting that is the hardest but then you learn to cope. If you find you are struggling you can access counselling services where you can talk about the fears and feelings in a safe place without judgement. It is sometimes easier to talk to someone you don't know.Just be there for your lovely man and enjoy things together - it is the little things that make life better. Take care of each other. Don't despair - lots of friends here.

Edited by member 24 Nov 2019 at 16:01  | Reason: Not specified

User
Posted 16 Nov 2019 at 12:12

Understandable that when you have been touched by cancer as you have that you are so very concerned about consequences now. But even in cases where PCa can't be eradicated (and I am not suggesting this is the case here), treatments can be given that slow the progression of the disease. I think you might find it helpful to download or obtain a hard copy of the 'Tool kit' which gives a lot of information on PCa and various treatments. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

The specialist nurses who can be contacted on this site are well regarded for a personal conversation.

Try to be brave about the situation as you don't want to add to the stress Colin has about his diagnosis by seeing how badly it is affecting you.

Let us know how things progress.

Edited by member 16 Nov 2019 at 21:11  | Reason: To highlight link

Barry
User
Posted 16 Nov 2019 at 13:21

Jonathan was diagnosed in January. Gleason 9 PSA 38. All cores positive. We were told that it was ‘very aggressive’ . It’s scary. Every new bit of bad news was like being punched in the stomach. The anxiety overwhelming.

However - treatment in the form of hormone therapy started quickly.

CT and bone scans were clear. PSA dropped rapidly.

He then had 6 rounds of docataxel over 18 weeks and on Thursday had brachytherapy. He starts 5 weeks radiotherapy next.

The side effects of all of this can be a challenge. He’s done lots of dietary and complementary things to support it all.

It’s gruelling. But he’s here. We had a lovely 2 weeks in Spain in his treatment break. His PSA is 0.05. The future? Who knows - but no-one could have done more...

Here to talk if you need to. Jane

 

 

User
Posted 16 Nov 2019 at 13:21

I know just how you are feeling.  My 70 years old husband who I have been married to for 50+ years has just received the same diagnosis. He was told yesterday and was alone at the appointment as I was home looking after our grandaughter.

I am numb and cannot believe what is happening.  I had been nagging him to get a PSA test for a long time, I don't know why,  just instinct.  He has been fast tracked so from first PSA test to diagnosis has been less than 4 weeks, the bone scan is this coming week. We are due to go on holiday in just over a week, the consultant says we should go and when we get back they will have a treatment plan in place to discuss with us. We are coming up to the 10th anniversary of our son's death so an especially difficult time for us.

 

 

User
Posted 16 Nov 2019 at 15:04

The start of this journey IS devastating. I think it must be more so when you have experienced big losses already in your life, as of course many of us have at this point in life. 

Here to talk if you need to and I’m sorry to hear of the loss of your son. Jane

User
Posted 16 Nov 2019 at 15:07
Thank you Jane
User
Posted 17 Nov 2019 at 09:21

Hi Barry, thanks so much for your reply. We are lucky that one of Colin's daughters works for McMillan, she was one of the people who was on the other end of the phone when you rang them, now she trains others to do the same, so she is really on the ball. I have spoken to the nurses on here and they are wonderful. I think I will end up on this marvellous site a lot, bone scan tomorrow, wish us luck!

User
Posted 17 Nov 2019 at 09:37

Hi Jane, thanks so much for your reply. I just wasn't prepared for the diagnosis, as Colin is not ill, he just had the test like I have mammograms and we both have the bowel cancer tests that come through the letter box (joy of joys!) When we were first told it was cancer we knew it was contained and fully believed it would be the watch and wait type, but now it seems all hell has broke lose and our lives are spiralling out of control, we were supposed to be going away for a month on Thursday, but that has been cancelled because the medics want to get started asap, which is great, but just such a shock. Bone scan day tomorrow, then a meeting with the consultant a couple of days later, our daughter who works for McMillan is  coming with us for that. I have mental health issues and I find it very difficult to retain information, due to extreme anxiety, esp as harrowing as this. Will keep you up to date, thank you so much once again,

Diane

User
Posted 17 Nov 2019 at 09:47

Hi, thanks so much for your reply, sorry I am late getting back to you. What an absolute mess. I cannot believe what is happening, and it sounds like you feel the same. It's the shock isn't it. We have bone scan tomorrow then meeting with consultant a couple of days later. We were going away for a month on Thursday, but had to cancel. How absolutely horrible that all this is happening at this difficult time of year for you. I cannot even start to imagine what it must be like to lose a child, please accept my sincere best wishes, sending love, because that is all we can do x

Diane

User
Posted 17 Nov 2019 at 10:51
It's worth noting that to exhibit no symptoms whatsoever is typical of prostate cancer, so the diagnosis comes completely out of the blue for many of us. In my own case it was my GP deciding to do a PSA test simply because I was over 50, and the result came back as 31!

The percentage of men with prostate cancer goes roughly in step with age, so around 70% of 70 year old men have it, although most will never know it or need treatment for it. Basically, getting prostate cancer is a matter of being a man and living long enough. It's a pretty inevitable consequence of the ageing process for men, so don't think of it as an unusual occurrence - it isn't, and it's a very treatable condition when caught while it's still confined to the prostate.

Best wishes,

Chris

User
Posted 17 Nov 2019 at 11:53

Thinking of you both tomorrow Diane. Jane 

User
Posted 23 Nov 2019 at 16:33

I can’t believe how fast everything is moving whilst we are still trying to get our heads around the cancer diagnosis. The bone scan was clear for any spread and on Monday we go to discuss treatment options. I hope Colin has had good news as well.

User
Posted 23 Nov 2019 at 17:40

Thinking of you. Started in our cancer journey in mid Sept. Husband 63  PSA 5.9. After 3.5 years of active surveillance.

Gleeson 4+ 3. Surgery RRP 4 weeks ago. Consultant in 4 weeks for the result.

Share here and call the excellent nurses.

Good to take someone with you to the consultant appt. I could not. Write everything that they tell you down.

Take each day as it comes. As I was told by many people Prostate cancer if localised and caught early is highly treatable. 

I suffer from SAD and depression so to face this at this time of the year has been very difficult for me. My husband has been very stoic and patient. It will be a long recovery but there is support. 

User
Posted 23 Nov 2019 at 17:48
Thank you. I haven’t rung the nurses yet but guess that will happen down the line. We have a dedicated oncology nurse at the hospital that either of us can ring. My husband keeps his emotions to himself, always has, difficult to get him to open up about how he really feels. We will have a better idea of the way forward after Monday’s consultation.
User
Posted 23 Nov 2019 at 18:03

Feel for you. Post how you get on after the appointment. 

User
Posted 23 Nov 2019 at 21:21

Hi Denrog, I think you and I are living parallel lives. Colin's bone scan came back clear too. We are due to meet our Oncologist on Tuesday, at St James's in Leeds. I have Googled her and she specialises in radiation therapy. We think it will be surgery first, Colin is stage T3. Our daughter who works for McMillan is coming with us, which is just as well because if last time is anything to go by, I will be totally useless. Let's keep in touch, our timescale seems almost identical. All the best, Diane x

User
Posted 23 Nov 2019 at 22:43
Hi Diane,

I can't recall anybody mentioning this so far so I will do so. Fortunately, we don't get many trolls on this forum but it has happened. I would advise that if the surname as detailed under your and Colin's profile is correct, you remove the surmane to help avoid the possibility of any unwanted attention.

Barry
User
Posted 23 Nov 2019 at 22:54

Hi Diane Good to hear that Colin's bone scan is clear as well, still traumatic though isn't it?   Our paths are running even closer than you realise as we will be as the Royal Hallamshire in Sheffield On Monday.  I was a little worried when I mentioned his scan in case you had not been given the all clear.

We were due to leave on a cruise on Tuesday, so again, like you our lives are running parallel, spooky! All the best for Tuesday.

User
Posted 24 Nov 2019 at 01:47

Originally Posted by: Online Community Member

We are due to meet our Oncologist on Tuesday, at St James's in Leeds. I have Googled her and she specialises in radiation therapy. We think it will be surgery first, Colin is stage T3. 

If you are only seeing the oncologist it sounds like surgery may not be in the plan, and surgery would be quite unusual with a T3. If they do suggest surgery followed by RT, I hope your daughter will ask them to explain the thinking behind that; committing him to three lots of side effects is a big ask unless there is a demonstrable benefit. 

Edited by member 24 Nov 2019 at 01:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Nov 2019 at 12:10
Thanks for that Lyn, To be perfectly honest I haven't a clue what I am talking about, I feel totally out of my depth. I live with permanent high anxiety, but this has taken it to a whole new level. I just cant wait for Tuesday to arrive and hopefully get answers to the questions we so desperately need.
User
Posted 24 Nov 2019 at 12:18

Thanks Barry, have done as you suggested. I cannot believe bloody trolls could even think to attack a site as sensitive as this. They are the spawn of the devil. 

User
Posted 24 Nov 2019 at 15:48

Two Yorkshire girls then! Let me know how you both get on tomorrow xxx

User
Posted 25 Nov 2019 at 16:51

Hi everyone Well we were over 4 hours in total at RHH today. We started off seeing the surgeon and as a result of that the operation is arranged for Friday the 13th December, it has to be open surgery because of an old scar. He is expected to need further treatment after his surgery which would be at the Weston Park hospital. We are Sheffield born & bred so are familiar with the hospitals and problems parking.
Still feeling numb and yet to tell family and friends about todays appt.

Hope all goes well tomorrow Diane but because I am a recent member I am not allowed to send you a private msg yet. Bye for now, high time I got my lunch, yes lunch!

Edited by member 25 Nov 2019 at 18:52  | Reason: named consultant, didnt know it was against the rules

User
Posted 25 Nov 2019 at 17:08

Hi, hope you had a lovely lunch, so now you know what is happening, will anything happen before 13th? like hormone therapy? I am at the mo knee deep in McMillan books looking at treatments. I know what you mean about the shock, it just keeps coming in waves doesn't it? I think  both you and I feel utterly bewildered by this whole thing.  Is your husband still keeping it together, Colin is, but yesterday was a very strange day. We seemed to be treading on eggshells around each other, not like us at all.  Do you feel better now you have a plan in place? Sending hugs to you both xxx

User
Posted 25 Nov 2019 at 17:49
Cheese & crackers for my lunch and a nice pot of tea. I can’t be bothered with food today. I think I feel more numb now and actually frightened that everything is happening so soon. I don’t think my husband is coping well emotionally with the diagnosis but he looked a bit cross when I said that to the surgeon.

So much to sort out in the next couple of weeks. I have mobility problems so some things will just have to fall by the wayside................

User
Posted 25 Nov 2019 at 18:06

Hi Denrog,  Dec 13th is a decently short time to wait.  That's exactly 3 years after my op. 

With open surgery you'll be in hospital longer but some say it's better as the surgeon can see and feel better what he's doing.   There's the pre-op to fit in as well where they check your blood pressure and do an ECG and check for MRSA.  It's better to get it done asap.  I was worried in case I failed MRSA as it's 5 days treatment and my op was only a few days later. 

All the best.

User
Posted 25 Nov 2019 at 18:36

Hi everything has been done today including all the pre op assessments so hopefully everything will go ahead as planned.  We had already discussed possibility of surgery before Christmas and we were both agreed it was the best way forward so we had no hesitation when the surgeon suggested that date.  Would have preferred it NOT to be Friday the 13th!  I hope that you made a good recovery and that your cancer is under control now.

 

 

 

User
Posted 26 Nov 2019 at 10:39
Hi Diane I hope all wen't well at Colin's appointment today. Thinking of you both.
User
Posted 28 Nov 2019 at 16:40

I am concerned that there has been no update from you Diane. Hope all is well, as much as it can be in this situation.

Edited by member 06 Dec 2019 at 09:09  | Reason: Not specified

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK