Hi everyone, my Husband was diagnosed Monday 05/12/2017. I'm still in shock as hearing Cancer and the word advanced sent me into shock yesterday. However, my Husband remained upbeat and was fussing over me. Hubby is not very computer savvy so it will be me doing the research and finding answers, but that's the least I can do for him under the circumstances.
This is what the nurse wrote down regarding test results from DRE, Biopsy, and PSA results. Still waiting for CAT Scan and Bone Scan results.
PSA 34
Stage T3 on examination (awaiting Scan results)
Biopsies Gleason 7, in all 12 biopsies taken (60% of tissue)
Plan specialist meeting 8th December, to discuss scan results, and put forward a treatment plan. The nurse will then call my Husband up Monday to tell him results of the scan and which treatment he is to have.
Treatment to consist of hormone therapy, and radiotherapy. If scans show no sign of metastasis.
If metastasis as occurred treatment will be Hormone and Chemotherapy, and some radiotherapy.
I'm holding my breath I am worried that it may have spread and that's my biggest concern and fear.
Any advice about the journey he is about to go on, what to expect. What the treatment does and side effects. It would be much appreciated.
The main thing that has impressed me is the speed at which everything has been done.
My Husband who will be 59 on the 16th December, had been complaining about having the urge to pee and nothing or very little coming out. He had pain in his back and kidney area. He made a doctor's appointment on for the 17th of November 2017 and got his diagnosis yesterday the 5th December 2017. To say we are amazed by our great NHS is an understatement. Everyone as treated him with the greatest respect.
Thanks and sorry to go on so much.
Regards Marie 😊
Update!
The Nurse rang my husband today with CAT scan and Bone scan results, excellent news the cancer is only in the prostate. To say we are both ecstatic would be an understatement. Appointment made for Monday to go pick up a prescription for Hormone Therapy. The hospital on the 28th of December. Leaving radiotherapy for a further 3 month's. Thanks to everyone who posted.
≠==============================================
So today 18/12/2018 my hubby as just come back from getting his results after waiting 6 months after high beam radiotherapy, every day for 2 weeks. HRT every 3 months. For 2 years. It was good news said the consultant, Ian has responded well to all treatment. PSA 0.2 to say we are both very happy would be an understatement.
Great 60th birthday present ever for him, which he celebrated on the 16/12/2018
He now as to see the urologist in 6 months time, have another PSA test, and continue with the HRT for another 12 months.
Happy Christmas everyone, here is to good news all round for everybody. Marie 😘
Edited by member 18 Dec 2018 at 10:42
| Reason: Update
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
Hello Marrie
My hus band was in a similar position eleven years ago! So you can take heart from that. All I can suggest is to download the toolkit from this site, get a note book and write down any questions prior to the meeting on the 8th and keep lots of notes in the future. Ask the hospital for copies of the letter that they will send to your husband’s gp and just keep yourself informed I found that by making informed decisions was the key, you almost felt in control and more confident and therefore more positive. Hope everything goes smoothly at the next consultation. Also, make sure that you have the contact details ie the phone number and email for your assigned specialist nurse because they will be the primary contact for advice and support
Take care
Judith
User
Just a quick one from me as I was diagnosed with metastatic cancer last summer PSA 67, Gleason 9. I was started on hormone therapy quite quickly followed by early chemotherapy. My PSA is now undetectable and except for a some extra tiredness and muscle aches caused by the hormone therapy you wouldn’t know there was anything wrong with me. I hope this is a little reassuring. The news that your cancer has spread is a huge shock but not necessarily a disaster.
I’ll be happy to pass on other info if you would find it helpful but this will be from personal experience - make sure you get info from the experts as well.
All the best
Dave
Edited by member 06 Dec 2017 at 22:24
| Reason: Not specified
User
Hi Marie, As I said information will be from personal experience, but backed up with some knowledge. Just to clarify, when I said last summer I meant 2016.
My symptoms were pretty much like those of your husband. You probably already know that the back/kidney pain is likely caused by urine backing up because of the difficulties in emptying the bladder.
My treatment has involved hormone therapy in the form of Triptorelin, which I am on for life, this stops the production of testosterone which the tumours need to be able to grow. This is given by injection, initially every 4 weeks then every 3 months. Side effects in my case involve loss of libido, less muscle strength, bouts of fatigue and most of my muscles aching most of the time. Please don’t look at this as a bleak outlook. Far from it. The muscle aches I have got used to, my strength is improving all the time through exercise and most of the time I feel pretty good.
Chemotherapy started 6 weeks later (Docetaxel) consisting of 6 cycles, one every 3 weeks. This is done through a cannula in the back of the hand. Steroid tablets are taken throughout the cycles to help with side effects. Regardless of what your doctor might tell you the whole process takes several hours (mine told me 45 mins which is physically impossible). The nurses giving chemotherapy will be a mine of information. If you read up on side effects you will see there is quite a list. Don’t be daunted by this as nobody is likely to get all of them. The main thing to be aware of is the risk of infection during the periods that the white blood cell count is low. You will be told when this is. I escaped pretty much unscathed except for bouts of fatigue and issues with fingernails which didn’t happen until the last two cycles. I lost body hair early on but not my head hair and beard. They both thinned somewhat and went from grey to pure white. All back to normal now and the bald spot I had before treatment has disappeared!!
I don’t have any experience of radiotherapy but believe this is more usually given if there are issues with bad bone pain.
And lastly, if there is metastasis you will no doubt hear the term incurable. Please, please remember that this does not mean untreatable or terminal.
If there are any specific things you can think of I’ll be happy to answer.
Take care
Dave
User
Hello Marie and welcome to you and your husband
Firstly, there is no need to apologise for "going on" as we really do appreciate and understand your feelings.
I cannot give any useful answers to some of your questions because our path was different but please be assured that you wil get advice and support from those members who have the experience you need.
Please don't despair. There are treatments available, even if there is spread.
I do know that the hormone treatment is likely to reduce the PSA. I've picked that much up during my membership of this site.
We have men on here with high PSA, spread and other unrelated ailments who, with treatment, go on and live life to the full, albeit a different life to the ones they had before. Even for those who are in the incurable camp
That initial diagnosis is dreadful, the word Cancer producing fear in all of us.
Once a full treatment plan is in place, then you will find that life calms down a bit as you and your husband are more in control.
Best wishes
Sandra
*****
We can't control the winds - but we can adjust our sails |
User
Originally Posted by: Online Community MemberJust a quick one from me as I was diagnosed with metastatic cancer last summer PSA 67, Gleason 9. I was started on hormone therapy quite quickly followed by early chemotherapy. My PSA is now undetectable and except for a some extra tiredness and muscle aches caused by the hormone therapy you wouldn’t know there was anything wrong with me. I hope this is a little reassuring. The news that your cancer has spread is a huge shock but not necessarily a disaster.
I’ll be happy to pass on other info if you would find it helpful but this will be from personal experience - make sure you get info from the experts as well.
All the best
Dave
Hi Dave all information is welcome always. It is good to hear it from someone who has experienced it first hand.
Thanks in advance for your time. Wishing you all the best. Marie 😊
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
Show Most Thanked Posts
User
Hello Marie and welcome to you and your husband
Firstly, there is no need to apologise for "going on" as we really do appreciate and understand your feelings.
I cannot give any useful answers to some of your questions because our path was different but please be assured that you wil get advice and support from those members who have the experience you need.
Please don't despair. There are treatments available, even if there is spread.
I do know that the hormone treatment is likely to reduce the PSA. I've picked that much up during my membership of this site.
We have men on here with high PSA, spread and other unrelated ailments who, with treatment, go on and live life to the full, albeit a different life to the ones they had before. Even for those who are in the incurable camp
That initial diagnosis is dreadful, the word Cancer producing fear in all of us.
Once a full treatment plan is in place, then you will find that life calms down a bit as you and your husband are more in control.
Best wishes
Sandra
*****
We can't control the winds - but we can adjust our sails |
User
Hello Marrie
My hus band was in a similar position eleven years ago! So you can take heart from that. All I can suggest is to download the toolkit from this site, get a note book and write down any questions prior to the meeting on the 8th and keep lots of notes in the future. Ask the hospital for copies of the letter that they will send to your husband’s gp and just keep yourself informed I found that by making informed decisions was the key, you almost felt in control and more confident and therefore more positive. Hope everything goes smoothly at the next consultation. Also, make sure that you have the contact details ie the phone number and email for your assigned specialist nurse because they will be the primary contact for advice and support
Take care
Judith
User
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
Just a quick one from me as I was diagnosed with metastatic cancer last summer PSA 67, Gleason 9. I was started on hormone therapy quite quickly followed by early chemotherapy. My PSA is now undetectable and except for a some extra tiredness and muscle aches caused by the hormone therapy you wouldn’t know there was anything wrong with me. I hope this is a little reassuring. The news that your cancer has spread is a huge shock but not necessarily a disaster.
I’ll be happy to pass on other info if you would find it helpful but this will be from personal experience - make sure you get info from the experts as well.
All the best
Dave
Edited by member 06 Dec 2017 at 22:24
| Reason: Not specified
User
Originally Posted by: Online Community MemberJust a quick one from me as I was diagnosed with metastatic cancer last summer PSA 67, Gleason 9. I was started on hormone therapy quite quickly followed by early chemotherapy. My PSA is now undetectable and except for a some extra tiredness and muscle aches caused by the hormone therapy you wouldn’t know there was anything wrong with me. I hope this is a little reassuring. The news that your cancer has spread is a huge shock but not necessarily a disaster.
I’ll be happy to pass on other info if you would find it helpful but this will be from personal experience - make sure you get info from the experts as well.
All the best
Dave
Hi Dave all information is welcome always. It is good to hear it from someone who has experienced it first hand.
Thanks in advance for your time. Wishing you all the best. Marie 😊
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
Hi Marie, As I said information will be from personal experience, but backed up with some knowledge. Just to clarify, when I said last summer I meant 2016.
My symptoms were pretty much like those of your husband. You probably already know that the back/kidney pain is likely caused by urine backing up because of the difficulties in emptying the bladder.
My treatment has involved hormone therapy in the form of Triptorelin, which I am on for life, this stops the production of testosterone which the tumours need to be able to grow. This is given by injection, initially every 4 weeks then every 3 months. Side effects in my case involve loss of libido, less muscle strength, bouts of fatigue and most of my muscles aching most of the time. Please don’t look at this as a bleak outlook. Far from it. The muscle aches I have got used to, my strength is improving all the time through exercise and most of the time I feel pretty good.
Chemotherapy started 6 weeks later (Docetaxel) consisting of 6 cycles, one every 3 weeks. This is done through a cannula in the back of the hand. Steroid tablets are taken throughout the cycles to help with side effects. Regardless of what your doctor might tell you the whole process takes several hours (mine told me 45 mins which is physically impossible). The nurses giving chemotherapy will be a mine of information. If you read up on side effects you will see there is quite a list. Don’t be daunted by this as nobody is likely to get all of them. The main thing to be aware of is the risk of infection during the periods that the white blood cell count is low. You will be told when this is. I escaped pretty much unscathed except for bouts of fatigue and issues with fingernails which didn’t happen until the last two cycles. I lost body hair early on but not my head hair and beard. They both thinned somewhat and went from grey to pure white. All back to normal now and the bald spot I had before treatment has disappeared!!
I don’t have any experience of radiotherapy but believe this is more usually given if there are issues with bad bone pain.
And lastly, if there is metastasis you will no doubt hear the term incurable. Please, please remember that this does not mean untreatable or terminal.
If there are any specific things you can think of I’ll be happy to answer.
Take care
Dave
User
Thanks Dave, I got a notebook and I'm researching and writing questions down. As for loosing hair my husband as shaved his head since his early 30s lol. We decided because it's near Christmas to not worry and take each day as it comes. Just wanted a nice quiet Christmas with as little fuss as possible. My husband loves golf and all his golfing mates and his work mates have been great. I think it helps to have some humour. I'm really grateful for your replies as it's nice to hear others points of view.
All the best Marie 😊
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
Humour certainly helps. My sons and ex workmates have provided plenty of that. Some of it black humour but never cruel or unthinking and always funny!
User
Hi Marie,
Only just noticed your update as you added it to your first post. That’s probably why nobody else has commented on the good news that there is no spread. You will notice that the PSA level will already be dropping at next blood test/hospital visit.
Hope you have a good Christmas
Dave
User
Originally Posted by: Online Community MemberHi Marie,
Only just noticed your update as you added it to your first post. That’s probably why nobody else has commented on the good news that there is no spread. You will notice that the PSA level will already be dropping at next blood test/hospital visit.
Hope you have a good Christmas
Dave
Hi Dave, sorry I haven't been on in a while with appointments and then Christmas. Hope everyone had a lovely Christmas.
Hubby went to see Doctor to discuss his treatment on the 28th December.
He is having HDR, 2 sessions I think, then a couple more at outpatients. Doctor said this was the quickest way to get it over with.
Can anybody explain what this entails, I know they said he would have an overnight stay in hospital. Any information would be appreciated.
Hubby as to go to our local hospital to have his urine flow rate test on the 4th January 2018.
Since starting his hormones he as felt really tired all the time. Will this tiredness pass or at least ease of somewhat. He is finding this hard to cope with.
Hope everyone as a very happy new year.
Thanks in advance Marie 😊
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
Hi Marie,
Had a great Christmas, thanks.
I don’t have any experience of HDR but here’s the link to the fact sheet on PCUK website.
https://prostatecanceruk.org/media/11608/high_dose-rate_brachytherapy-ifm.pdf
As far as the tiredness goes: I have found after being on HT for nearly 18 months it still comes and goes. I now no longer find it debilitating but it still hits hard at times. As my doc keeps saying “Just do what you can and don’t overdo it”. When questioned by my wife (cos she knows I’m prone to overdoing it) the doc conceded that I wouldn’t do myself any harm other than extra tiredness. But I do know from experience that if it is actual fatigue your husband is suffering from that is difficult to cope with and almost impossible to do anything about other than wait for it to pass.
Dave
User
Hi marie in reply to your post about HDB, my OH has just been discharged today after treatment yesterday at st james leeds, all went realy smoothly wouldnt think hed had anything done, he had to be down at the brachy suite yesterday morning at 7.15 we stayed in the patient hotel the night before, from there they prepped him gave enema put on stockings etc he said he went under anaesthetic at around 8.30 am..he was in recovery at 11.30 then transfered to a ward he had a catheter in was full of blood they removed it at around 5.30, he had to drink a couple of litres of water and try to pass urine, for a couple of hours he was only managing small dribbles he said he felt like he wanted to go but just wouldnt start the urine flow, then eventualy managed but.lots of clots still blood in urine, they prescribed tamusolin for a month which seems to have got things on track.discharged today up and about passing urine fine now no accidents..obviously its early days and dont know if any later effects might crop up but so far so good..he starts EBRT 15th january hes also on zoladex..hope this has given you a bit of an insight into HDB everything is such a learning process with this awful disease and as much as i read up on things just feel that real experiences give a better picture, i know each case is different, side effects etc, all any of us can hope for is that the treatments are doing the job..good luck with your decisions choose which one is best for you with the best outcomes, we didnt realy have the choice as with OH dx the choice was made for him as not many other options..jo.xx
User
Hi Dave thanks for your reply much appreciated. I went and read the information on the link you provided, explains quite a lot. Hubby is very frustrated by this tiredness, everything is a big effort for him.
I know all to well as I have suffered from severe depression for many years so myself and fatigue are well acquainted.
I just hope it passes for him as he loves golf and walking our dogs. He as two weeks off work for now. Happy new year Dave and thanks for your time.
Marie😊
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
Thanks ever so much for sharing your husband's experience with me.
We wish you all the best for the new year.
Marie😊
You never know how strong you are until being strong is the only choice you have.
Cayla Mills |
User
My husband was diagnosed just after Christmas and has had a whole raft of tests. The cancer has not spread, according to the bone scan conducted yesterday. He started 30 days of tablets yesterday. He has to have an injection in 14 days time.
There may be radiotherapy but we don't know when.
Thinking of escaping the cold and setting off for a few weeks in Spain tomorrow......