Hello SusieW and welcome to the site.
Firstly, yes that is a high PSA but by no means the highest we have ever had on here, sometimes up in the thousands.
CT, bone scan and biopsy are fairly usual so please don't read anything sinister into them. Once they are done the consultant will have a better picture of what's what.
Your husband will be given a Gleason score and that (and the rest) determines the advice from the consultant regarding possible treatments.
Even if (and it is a big IF) your husband's PC has spread it doesn't mean that treatments are not possible.
We have men on here who are diagnosed as incurable but it doesn't mean that their lives are over.
It is possible to live, yes live, not just exist, if you are incurable.
You are jumping ahead (understandable believe me) and stressing yourself. I'm not saying that there isn't anything to worry about, because a PSA of 210 is undeniably high but your husband will have options.
Please come back and let us know what the results are and I'm sure you'll get a lot of encouragement and support.
We have lots of members who have undergone different treatments and they can provide an insight on how to deal with side effects.
Biopsies are not pleasant and the blood in urine and semen afterwards can be a bit scary, and he may well be sore for a few days, so try not to worry about that aspect.
I'm stating the obvious because the mere fact that you have come on here means that you want to be supportive so just be you. Talk if he wants to talk about it but try and put it to the back of your minds until you get the results.
No point in worrying about results until you know there is something to worry about.
We've all been there, that horrible, frightening news that you didn't want to her and right now all you can think of is that it is the end.
It may be the end of life as it currently is but you'll have a new normal. Once decisions are made regarding treatment you will probably find that you settle down.
It's the uncertainty that gets to most of us initially, because we have no control over what's happening.
I know it's easy for me to say don't worry but I do (we all do) understand how difficult it presently is.
Chin up, all is not lost
Best Wishes
Sandra
******
Edited by member 02 Dec 2017 at 19:09
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi SusieW
Welcome
My husband was diagnosed in March this year with PSA over 1000. He also had extensive bone mets. Following Hormone Implants and 6 sessions of Chemo his latest PSA was 1.1. He has continued working through most of this time. We found the waiting the hardest to cope with but once treatment started things then improved.
Sending best wishes.
User
Hi Susie
We are in a similar situation to you and your husband. My husband was diagnosed last Monday with a psa of 179, and after the examination the consultant was certain it is cancer.
He's had his bone scan, is currently having the TRUS and another scan for tissue (I think) is booked in for Wednesday, and then it's the wait. He has been given hormone tablets, and is booked in for an injection on 27th.
It's such a difficult time,
I wish you and your husband all the very best xx
User
Hi suzie and eastyorkshire, its the waiting that we found the hardest its like been stuck in limbo, but once theres a plan for treatment decided it seems that its easier to deal with things one step at a time, although its still the worst situation to be in, its still early days on our treatment plan still on ht been 3months today to continue for probably 18months after treatment awaiting high dose brachy 29th december and 41/2 weeks external beam radiotherapy 15th january were finding that each goal is a step forward on this awful journey, were just trying to deal with it in stages trying not to let it impact on our lives by carrying on as normal while able too if that helps in anyway, talking helps and putting things into perspective, this community has been fantastic in helping us so many helpful kind people with so much experience and great advice..take care.jo.x
User
Hi Suzy, our journeys with our husbands really are similar. We had the appointment on Friday to discuss treatment etc. Sean’s bone scan showed the cancer had spread way further then we expected, it was so scary, I wish I hadn’t seen it. It has also spread to his liver, which is even more worrying. He starts the same treatment as your husband, six sessions once every three weeks, starting on 20 February, a week after his 52nd birthday. It sure what will happen beyond that, I guess it’s an ongoing battle. I’ve decided i need a coping mechanism as I’m going to have to be strong for him, so I’m upping my running, and entering races. I’m fundraising for this charity too with the Great North run, as I want to give something back. Hopefully all this will help my mental health so I can be the support that Sean will need.
Anyway, take care Suzie, am sending much love to you both, and indeed to everyone going through this nightmare xxx
User
Hi Suzie
Welcome to the forum, so sorry for the reason for your visit here but I hope you will find the support you need here.
It’s such a difficult time, this pre diagnosis time, all the waiting for results and being unsure of what’s happening and what the future holds. It does all reveal itself gradually and you will be given a plan to help,deal with it, since it’s clear it is cancer of some sort. We had a similar experience given that John saw the urologist and the DRE and he told him the the prostate was hard and was clearly cancer, so we knew that, but not how bad until after the biopsy, MRI and bone scan. We found out on Dec 23rd 2010, Gleason 10 and spread to lymph and bones! Yes 7 years ago. And still here, still fighting the diesease here,
We often wonder how we got through that period of waiting, we have virtually no memory of it. We are used to the waiting now, it is a way of life now. We now have monthly blood tests and treatment and it’s all become somewhat routine, in its way.
I hope things work out as well for you as it has for us, please let us know how it goes.
Good luck
Devonmaid xx
User
Hi Suzie. I can only echo what Allison and Sandra have said. I haven't been using this site long but from reading about our loved ones experiences of this disease you will see there is lots of men still living good quality lives for many years despite their cancer and choice of treatment paths.
You will worry but it is only natural. I think in some ways our men's cancer affects us nearly as much. I can't tell you how many times I just wish we could go back to the way life was before the cancer diagnosis.
Regarding your worries about the biopsy. If it's a template biopsy he will have a general anaesthetic but you could still ask for a general anaesthetic if it is the more usual TRUS type ( through the back passage). Our local hospital would only offer local anaesthetic whereas we noticed our regional centre will do a general if asked. I expect it depends on where you live.
It is the waiting for appointments and treatments that are so difficult but you will get through it. We try to stick with our normal routine as much as possible which helps.
Good luck with the tests
Ann
User
Most men find the TRUS biopsy embarrassing but not really painful. It's rather like being flicked with a rubber band usually between 8-12 times as the needles are inserted. Personally, I would rather have this done than have a dental filling! I wouldn't opt for full anaesthesia for this procedure even if it was offered. What is of more importance I believe is the risk of infection because the needles have to pass through the Rectum. Infections can prove quite difficult and long time-wise to overcome where these develop, so antibiotics should be taken. The Transperineal template biopsy poses a smaller risk of infection as the needles to take cores,(I had 50,) pass through the Perineum rather than the Rectum but this procedure is almost always done under general anaesthetic though occasionally with an epidural.
Barry |
User
Firstly it is great that your husband is able to be calm and stoical. I wasn’t when in a similar position last year. Everybody has their own way of dealing with things but mine wasn’t exactly helpful. I obviously can’t reassure you with regards to the outcome of the biopsy/scans etc but things tend to be easier when you know what is being faced and a treatment plan is in place. Try not to worry about the biopsy too much. It’s not very pleasant but is over with quite quickly. There were six other men having it done the same morning as me and none of us suffered issues. I was able to hold a normal conversation with the surgeon during mine so it can’t be that bad can it?
Take care and good luck to you both.
Dave
Edited by member 04 Dec 2017 at 08:24
| Reason: Not specified
User
Hi Suzie, From your note I think you've read up about it. I had a biopsy followed by results 2 weeks later. Then 2 scans 2 days later. The bone scan result was the next day and the MRI result just under a week later. I rang the Macmillan nurse regularly and she read out the results. She was very good and always willing to tell me what to expect, although it's a ringback, do you have a nominated Macmillan nurse.
Regards Peter
User
I only have my own experience to go by and I realise that different areas are likely to have different procedures but I’m not so sure a nurse would have been allowed to give me results. In each case, biopsy, bone scan, CT scan and MRI the results were sent to the consultant who ordered them. My biopsy result was given to me face to face by the doctor who carried it out. I have a nurse I can contact at anytime but she works with my consultant at the Cancer Centre I attend not MacMillan
Edited by member 05 Dec 2017 at 22:18
| Reason: Not specified
User
Good luck both of you and try and remain positive (I know - not easy! )
It helps later on if you can eventually get a nurses details as has been previously said. We didn't get a McMillan nurse either, just a designated nurse for info
Fingers, toes, and eyes crossed for you
We can't control the winds - but we can adjust our sails |
User
Good luck & I’ll be thinking about you both. You are right about the care. The care I have received medically has been outstanding and support from family and friends unbelievable.
All the best
Dave
User
As I mentioned earlier in this thread 8-12 cores is typical (I had 12) but before MRI. It could be fewer where for instance MRI suggested cancer confined to a small area which 6 cores would cover or for another reason but 6 cores only would be less common.
Barry |
User
I had fourteen!! Perhaps he was lucky and only felt 6. Did he maybe have a bad time of it so it was stopped? This is just a thought on my part. Either way the doc will be able to tell you when you go for the results.
Dave
User
This is an interesting question and certainly one to ask the urology department about. Taking 6 cores must pose less chance of an infection than more I reason. However, taking more cores increases the chances of finding tumours and more advanced cancer cells . Sometimes when PCa is suspected but no cancer is seen in the cores, a further TRUS biopsy is done. There have been occasions in such circumstances where even a second TRUS has been done but revealed nothing and then a Transperineal Template biopsy has been done which could be of the order of 50 cores. This is unusual although we have had at least one member who has had this.
Barry |
User
From the sound of it you are supporting your husband. What I found was my wife just being there was pretty much and still is the support I need. Hold his hand when he’s scared, even though you will be as well. Cry together because this isn’t what either of you had planned for the future. But remember to leave plenty of time for laughs.
All the best for Tuesday.
Dave
User
Just being there counts hugely, on a more practical note, going along with prepared questions in a notebook and a pen to write down the responses. I’ve got my little red book which is almost a journal of our visits over the past ten years, so, be positive, you need to get a good thick notebook! Good luck for Tuesday
User
Hi Elaine, so sorry to hear your husbands diagnosis. I guess we must both be going through the same agony. The waiting has been hard as you can’t get it out of your mind. I was really worried for my husband when he had the TRUS but he coped really well and had no particular issues afterwards. I really hope your husbands tests go well and that you get your staging diagnosis soon. It will have taken 2 weeks to first appointment and 19 days to tomorrow’s staging consult. Amazing really it all happens so fast, even if it does feel like an eternity.
I know the psa level will be bothering you, it is me. I have found this site so helpful and people have been so kind to take the time to message. It feels really supportive.
This time tomorrow we will know what we are up against.
Take care and keep in touch.
Susie
User
I too am in the same position as you Suzie. Tomorrow my husband goes for a bone scan and the next day a pelvis and thorax scan. He is quite stoic too but I'm not and like you it is all I can think of. We see the oncologist on 28th December so we have Christmas in between. Please keep everything crossed for us. Everyone on this forum are going through the same thing and success stories even at the darkest times help us hope for the future.
Love and hugs
User
Hello J.t.
Interesting to read your story so far. We are at St James and they have been so good. Sounds like you are getting good treatments. I’m not expecting we will be as lucky with results as Hubbys PSA was 210! Still we will know tomorrow.
Feeling very scared tonight. Take care
susie x
User
Hope all goes well tomorrow, for the both of you. I’ll be thinking about you and if your husband finds he’s in a similar position as me as far as treatment goes I may be able to give you some useful info. Sorry, just realised tomorrow in now in fact today.
Dave
Edited by member 19 Dec 2017 at 00:20
| Reason: Not specified
User
Hi susie just wishing you luck for today thinking of you, our path has been a bit of a long one so far as my partner understaged at first at our local hospital so things seemed to take longer but once properly staged treatment and care has been great..sending love.xx
User
Well results afternoon could have gone better. Or possibly worse!
After a PSA of 210 we now know that the tumour is T3+ N1M1b. So bone mets, and also lymph involvement and left kidney involved and not draining correctly.
Hubby was put on Bicalutamide 3 weeks ago and now has had injection of Prostap.
New year we will attend oncology appointment. Expecting Docetaxel. Think I got that right. Then we are on our journey, proper. We were expecting the bone but hasn’t thought too much about the lymph and soft tissue.
We were assigned specialist nurses and phone numbers and the one we met today was really lovely and helpful.
So feeling a bit stunned tonight.
Hope eastyorkshire and adnyl get better news! Thinking about you.
Thankyou so much to all who have supported us. You have really helped.
Susie xx
User
Good luck with it all Susie. Mine is a strange case in that I have lymph involvement only noticed post surgery , and I have a rapidly rising psa. Yet no scans have found any bone or further tissue spread. Hopefully the chemo will slow it all down for you.
User
Hi Susie,
I’m sorry to see that you’ve got more than you bargained for. I don’t have any knowledge of the soft tissues but I can give you info about Docetaxel if you need any.
All the best and take care
Dave
User
Hi Susie,
I have been holding back from posting for you as even though I knew your probable outcome with your husbands PSA , we always live in hope .
It is so easy to live in fear and be gripped by terror trust me I took that route for quite a long time.
I know at this moment in time you are feeling scared and overwhelmed, I was too 4 and a half years ago but the biggest thing I learned in those years was to accept and live everyday , squeeze every moment .
So many on here are are still going strong many years after a pretty dim diagnosis.
You can do this
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Susie
My husband had a similar diagnosis but without the soft tissue. He had 6 sessions of Docetaxel, one every three weeks. The HT worked on it's own to begin with as before Chemo started his PSA had gone down from over a thousand to about 12. With the Chemo his PSA reduced to 1.1 although now it has started to increase again. He didn't find the Chemo too bad and continued to work most days. You will need to watch for any rise in temperature and react very quickly, you will be told when to act. My husband did have one and ended up in hospital with antibiotics for a couple of days.
For now the HT should be working and already bringing the PSA down so try and enjoy Christmas.
User
I had the same cycles/frequency as hiitsme’s husband.
The treatment is given through a cannula in the back of the hand. As well as the Docetaxel there will be an anti-sickness drug and a steroid put through the line first. The whole procedure takes several hours so having something to occupy you is a good idea. My sons and daughter gave me a chemotherapy survival pack that they made up themselves! I escaped pretty much unscathed apart from some bouts of fatigue and issues with my finger and toes nails. My hair and beard thinned a bit and turned white but that has grown again and back to it’s normal grey. All body hair went but has regrown. As mentioned above there is a risk of infection when the white blood cell is down. This happens during each cycle but you should be told when the riskier periods are. Steriod tablets are taken throughout the chemotherapy cycles with extra taken the day before and the morning of the next treatment. A blood test and an appointment with the doc are also required before each treatment. I had mine the day before but it can also happen on the day. My wife was allowed to sit with me during the first treatment but after that it’s just the patient. Obviously I don’t know how other locations operate but I was happy with that and had no problems with the forty mile drive home afterwards. We actually had a very good briefing of what to expect and what to do if at all worried, from the nurse who gave my first treatment.
Thinking of you both
Dave
User
I just hope I’ve have been some help.
User
So sorry to hear about your Husbands diagnosis. I'm afraid that I'm 7 months ahead of you having been diagnosed in May with Cancer widespread through the bones but not in soft tissue. PSA of 126 which is currently not registering as HT has got it down and controlled it. I am on 3 monthly Prostap and was originally booked in for chemo but then we heard about the STAMPEDE trial results which suggested an improved outcome going on Abiraterone instead of chemo and my Onco got that funded by BUPA. Was all going really well until by liver decided it didnt like the Abi so I'm currently off it for the second time and got bloods on 3rd Jan which may see me back on a half dose.
May be worth talking to your Onco about the Abiraterone.
My Wife and I spent the first 3 months pretty much falling apart as the words "incurable" and "cancer" are not words you want to hear, especially when they are talking about you. However, you do get stronger and life does return to a bit more like normal. I have learned that it's vital to live life to the full when you have little idea how much of it this bloody disease is going to allow you to have.
Edited by member 21 Dec 2017 at 16:12
| Reason: Not specified
User
Hi Susie
Just been reading your posts and I can totally understand how you are feeling . We like so many on this forum have been in and are still in the same situation eighteen months down the line. Our journey has been a bit more complex as hubby has had a few more cancers to deal with on top of advanced prostate cancer. But I really think a positive attitude and an active body has helped to keep him focused. He totally amazes me everyday with his outlook on live and takes things in his stride. The lovely people at cancer support have been brilliant and can offer counselling and other relaxation therapies which do help the mind as well as the body.
Good luck to you both on this journey and keep in touch. Try and enjoy Christmas the best you can in the circumstances.
Debbie x
User
I asked about Abiraterone a little while back when it was cleared for early use. I was told I didn’t need it yet but would get it when the time came. Bear in mind that I had already had chemotherapy, which an earlier STAMPEDE trial showed had better outcomes being given early on rather than was the case of not giving it until the cancer became HT resistant. I am currently taking part in the STAMPEDE trial looking to see if the diabetic drug Metformin will be of use as future PC treatment so things are evolving all the time.
I’m glad you were both able to have an enjoyable day out. Hope you can have a good Christmas. Our house looks like Santa’s workshop at the moment and we are looking forward to a house full of children and grandchildren 😀
Edited by member 22 Dec 2017 at 10:11
| Reason: Not specified
User
Ironic about the unpleasant Metformin side effects as that is one of the things being looked at. Whether it will help with hormone therapy side effects as well as treat the disease itself.
User
That’s great news susie so please for you 😀
Don't deny the diagnosis; try to defy the verdict |
User
That is fantastic news which I am sure has given you a real boost.
So pleased for you - long may it continue.
User
Brilliant news Susie.
Very pleased for you both
We can't control the winds - but we can adjust our sails |
User
That's great news. So pleased for you.
User
User
Fantastic news for you both, so pleased youve got some good news..jo.xx
User
Brilliant news Susie! - so pleased for you both.
Debbie x
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Hello SusieW and welcome to the site.
Firstly, yes that is a high PSA but by no means the highest we have ever had on here, sometimes up in the thousands.
CT, bone scan and biopsy are fairly usual so please don't read anything sinister into them. Once they are done the consultant will have a better picture of what's what.
Your husband will be given a Gleason score and that (and the rest) determines the advice from the consultant regarding possible treatments.
Even if (and it is a big IF) your husband's PC has spread it doesn't mean that treatments are not possible.
We have men on here who are diagnosed as incurable but it doesn't mean that their lives are over.
It is possible to live, yes live, not just exist, if you are incurable.
You are jumping ahead (understandable believe me) and stressing yourself. I'm not saying that there isn't anything to worry about, because a PSA of 210 is undeniably high but your husband will have options.
Please come back and let us know what the results are and I'm sure you'll get a lot of encouragement and support.
We have lots of members who have undergone different treatments and they can provide an insight on how to deal with side effects.
Biopsies are not pleasant and the blood in urine and semen afterwards can be a bit scary, and he may well be sore for a few days, so try not to worry about that aspect.
I'm stating the obvious because the mere fact that you have come on here means that you want to be supportive so just be you. Talk if he wants to talk about it but try and put it to the back of your minds until you get the results.
No point in worrying about results until you know there is something to worry about.
We've all been there, that horrible, frightening news that you didn't want to her and right now all you can think of is that it is the end.
It may be the end of life as it currently is but you'll have a new normal. Once decisions are made regarding treatment you will probably find that you settle down.
It's the uncertainty that gets to most of us initially, because we have no control over what's happening.
I know it's easy for me to say don't worry but I do (we all do) understand how difficult it presently is.
Chin up, all is not lost
Best Wishes
Sandra
******
Edited by member 02 Dec 2017 at 19:09
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Suzie
Welcome to the forum, so sorry for the reason for your visit here but I hope you will find the support you need here.
It’s such a difficult time, this pre diagnosis time, all the waiting for results and being unsure of what’s happening and what the future holds. It does all reveal itself gradually and you will be given a plan to help,deal with it, since it’s clear it is cancer of some sort. We had a similar experience given that John saw the urologist and the DRE and he told him the the prostate was hard and was clearly cancer, so we knew that, but not how bad until after the biopsy, MRI and bone scan. We found out on Dec 23rd 2010, Gleason 10 and spread to lymph and bones! Yes 7 years ago. And still here, still fighting the diesease here,
We often wonder how we got through that period of waiting, we have virtually no memory of it. We are used to the waiting now, it is a way of life now. We now have monthly blood tests and treatment and it’s all become somewhat routine, in its way.
I hope things work out as well for you as it has for us, please let us know how it goes.
Good luck
Devonmaid xx
User
Hi Suzie. I can only echo what Allison and Sandra have said. I haven't been using this site long but from reading about our loved ones experiences of this disease you will see there is lots of men still living good quality lives for many years despite their cancer and choice of treatment paths.
You will worry but it is only natural. I think in some ways our men's cancer affects us nearly as much. I can't tell you how many times I just wish we could go back to the way life was before the cancer diagnosis.
Regarding your worries about the biopsy. If it's a template biopsy he will have a general anaesthetic but you could still ask for a general anaesthetic if it is the more usual TRUS type ( through the back passage). Our local hospital would only offer local anaesthetic whereas we noticed our regional centre will do a general if asked. I expect it depends on where you live.
It is the waiting for appointments and treatments that are so difficult but you will get through it. We try to stick with our normal routine as much as possible which helps.
Good luck with the tests
Ann
User
Most men find the TRUS biopsy embarrassing but not really painful. It's rather like being flicked with a rubber band usually between 8-12 times as the needles are inserted. Personally, I would rather have this done than have a dental filling! I wouldn't opt for full anaesthesia for this procedure even if it was offered. What is of more importance I believe is the risk of infection because the needles have to pass through the Rectum. Infections can prove quite difficult and long time-wise to overcome where these develop, so antibiotics should be taken. The Transperineal template biopsy poses a smaller risk of infection as the needles to take cores,(I had 50,) pass through the Perineum rather than the Rectum but this procedure is almost always done under general anaesthetic though occasionally with an epidural.
Barry |
User
Hi SusieW
Welcome
My husband was diagnosed in March this year with PSA over 1000. He also had extensive bone mets. Following Hormone Implants and 6 sessions of Chemo his latest PSA was 1.1. He has continued working through most of this time. We found the waiting the hardest to cope with but once treatment started things then improved.
Sending best wishes.
User
Firstly it is great that your husband is able to be calm and stoical. I wasn’t when in a similar position last year. Everybody has their own way of dealing with things but mine wasn’t exactly helpful. I obviously can’t reassure you with regards to the outcome of the biopsy/scans etc but things tend to be easier when you know what is being faced and a treatment plan is in place. Try not to worry about the biopsy too much. It’s not very pleasant but is over with quite quickly. There were six other men having it done the same morning as me and none of us suffered issues. I was able to hold a normal conversation with the surgeon during mine so it can’t be that bad can it?
Take care and good luck to you both.
Dave
Edited by member 04 Dec 2017 at 08:24
| Reason: Not specified
User
Thankyou, thankyou all so much for the info and support. I will let you know when I hear more.
User
Hi Suzie, From your note I think you've read up about it. I had a biopsy followed by results 2 weeks later. Then 2 scans 2 days later. The bone scan result was the next day and the MRI result just under a week later. I rang the Macmillan nurse regularly and she read out the results. She was very good and always willing to tell me what to expect, although it's a ringback, do you have a nominated Macmillan nurse.
Regards Peter
User
No I don’t have any contact with McMillan. Maybe it’s too soon.
User
I only have my own experience to go by and I realise that different areas are likely to have different procedures but I’m not so sure a nurse would have been allowed to give me results. In each case, biopsy, bone scan, CT scan and MRI the results were sent to the consultant who ordered them. My biopsy result was given to me face to face by the doctor who carried it out. I have a nurse I can contact at anytime but she works with my consultant at the Cancer Centre I attend not MacMillan
Edited by member 05 Dec 2017 at 22:18
| Reason: Not specified
User
Well tomorrow the tests begin. CT of pelvis and abdomen tomorrow, biopsy Friday and bone scan on Monday. I’m just focussing on how lucky we are to have such good care. Wish us luck.
User
Good luck both of you and try and remain positive (I know - not easy! )
It helps later on if you can eventually get a nurses details as has been previously said. We didn't get a McMillan nurse either, just a designated nurse for info
Fingers, toes, and eyes crossed for you
We can't control the winds - but we can adjust our sails |
User
Good luck & I’ll be thinking about you both. You are right about the care. The care I have received medically has been outstanding and support from family and friends unbelievable.
All the best
Dave
User
So pleased you have had such good care.
User
Well today went really well. All very kind at the hospital and great organisation. Also a bit of a dummy run as same journeys, parking etc tomorrow, Leeds centre can be exciting at rush hour!
Still feeling nervous and I can tell Hubby is. He,s not saying much and not really wanting to talk about stuff. Had a letter today which was copy letter from consultant to GP. It was hard to read the words ‘Typical of T3+ DRE. Black and white text seems more scary. Anyway we have to keep going. Just wish we weren’t expecting snow in the morning. Thanks to everyone for your support. You are helping me so much. X
User
Does anyone know about how many biopsy samples is normal. I thought 12 but today they only took 6 in my husbands TRUS.
User
As I mentioned earlier in this thread 8-12 cores is typical (I had 12) but before MRI. It could be fewer where for instance MRI suggested cancer confined to a small area which 6 cores would cover or for another reason but 6 cores only would be less common.
Barry |
User
I had fourteen!! Perhaps he was lucky and only felt 6. Did he maybe have a bad time of it so it was stopped? This is just a thought on my part. Either way the doc will be able to tell you when you go for the results.
Dave
User
No they definitely only did three each side. I think because cancer is so evident.
User
This is an interesting question and certainly one to ask the urology department about. Taking 6 cores must pose less chance of an infection than more I reason. However, taking more cores increases the chances of finding tumours and more advanced cancer cells . Sometimes when PCa is suspected but no cancer is seen in the cores, a further TRUS biopsy is done. There have been occasions in such circumstances where even a second TRUS has been done but revealed nothing and then a Transperineal Template biopsy has been done which could be of the order of 50 cores. This is unusual although we have had at least one member who has had this.
Barry |
User
Well the call has come for the consultant appointment. It’s two weeks to the day since the first appointment. Hard to believe my husband has had CT scan, Biopsy and bone scan. The Urology dept has been so efficient. I had hoped we could see someone before Christmas but I’d expected to wait longer really.
We are feeling a bit shocked to be honest that on Tuesday we will know what we are up against. Our grandchildren are counting the sleeps before Christmas, I’m counting four sleeps to Tuesday! If anyone out there has any advice how to best support my husband I’d be grateful. I know I have to be strong but I feel a bit wobbly today.
User
From the sound of it you are supporting your husband. What I found was my wife just being there was pretty much and still is the support I need. Hold his hand when he’s scared, even though you will be as well. Cry together because this isn’t what either of you had planned for the future. But remember to leave plenty of time for laughs.
All the best for Tuesday.
Dave
User
Thanks Dave, that’s lovely. Have a good Christmas. Hope we can.
User
Hi Susie
We are in a similar situation to you and your husband. My husband was diagnosed last Monday with a psa of 179, and after the examination the consultant was certain it is cancer.
He's had his bone scan, is currently having the TRUS and another scan for tissue (I think) is booked in for Wednesday, and then it's the wait. He has been given hormone tablets, and is booked in for an injection on 27th.
It's such a difficult time,
I wish you and your husband all the very best xx
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Just being there counts hugely, on a more practical note, going along with prepared questions in a notebook and a pen to write down the responses. I’ve got my little red book which is almost a journal of our visits over the past ten years, so, be positive, you need to get a good thick notebook! Good luck for Tuesday
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Hi Elaine, so sorry to hear your husbands diagnosis. I guess we must both be going through the same agony. The waiting has been hard as you can’t get it out of your mind. I was really worried for my husband when he had the TRUS but he coped really well and had no particular issues afterwards. I really hope your husbands tests go well and that you get your staging diagnosis soon. It will have taken 2 weeks to first appointment and 19 days to tomorrow’s staging consult. Amazing really it all happens so fast, even if it does feel like an eternity.
I know the psa level will be bothering you, it is me. I have found this site so helpful and people have been so kind to take the time to message. It feels really supportive.
This time tomorrow we will know what we are up against.
Take care and keep in touch.
Susie
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Hi suzie and eastyorkshire, its the waiting that we found the hardest its like been stuck in limbo, but once theres a plan for treatment decided it seems that its easier to deal with things one step at a time, although its still the worst situation to be in, its still early days on our treatment plan still on ht been 3months today to continue for probably 18months after treatment awaiting high dose brachy 29th december and 41/2 weeks external beam radiotherapy 15th january were finding that each goal is a step forward on this awful journey, were just trying to deal with it in stages trying not to let it impact on our lives by carrying on as normal while able too if that helps in anyway, talking helps and putting things into perspective, this community has been fantastic in helping us so many helpful kind people with so much experience and great advice..take care.jo.x
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I too am in the same position as you Suzie. Tomorrow my husband goes for a bone scan and the next day a pelvis and thorax scan. He is quite stoic too but I'm not and like you it is all I can think of. We see the oncologist on 28th December so we have Christmas in between. Please keep everything crossed for us. Everyone on this forum are going through the same thing and success stories even at the darkest times help us hope for the future.
Love and hugs
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Hello adnyl, sorry to hear that you too are in this awful situation. For the first time on here I feel I can actually offer some support. The bone scan and Ct were very easy according to hubby. Really well organised and lovely staff. I took my kindle and just tried to concentrate on my book. I’m beginning to used to the anxious waiting room situation already. We are in Leeds and I honestly cannot fault the care we have had so far. Hope you manage to have some time for enjoyment over Christmas. We will all have to get together on here in the new year and pull together. I’m feeling very nervous tonight. Counting down the hours!
Good luck tomorrow, I’ll be thinking of you both. Think about taking something to read, book, newspaper etc. Cos you will have 3 hours after the injection to wait till scan. We had breakfast then found some comfy chairs and read for an hour.
Very best wishes, susie xx
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Hello J.t.
Interesting to read your story so far. We are at St James and they have been so good. Sounds like you are getting good treatments. I’m not expecting we will be as lucky with results as Hubbys PSA was 210! Still we will know tomorrow.
Feeling very scared tonight. Take care
susie x
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Hope all goes well tomorrow, for the both of you. I’ll be thinking about you and if your husband finds he’s in a similar position as me as far as treatment goes I may be able to give you some useful info. Sorry, just realised tomorrow in now in fact today.
Dave
Edited by member 19 Dec 2017 at 00:20
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Hi susie just wishing you luck for today thinking of you, our path has been a bit of a long one so far as my partner understaged at first at our local hospital so things seemed to take longer but once properly staged treatment and care has been great..sending love.xx
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Well results afternoon could have gone better. Or possibly worse!
After a PSA of 210 we now know that the tumour is T3+ N1M1b. So bone mets, and also lymph involvement and left kidney involved and not draining correctly.
Hubby was put on Bicalutamide 3 weeks ago and now has had injection of Prostap.
New year we will attend oncology appointment. Expecting Docetaxel. Think I got that right. Then we are on our journey, proper. We were expecting the bone but hasn’t thought too much about the lymph and soft tissue.
We were assigned specialist nurses and phone numbers and the one we met today was really lovely and helpful.
So feeling a bit stunned tonight.
Hope eastyorkshire and adnyl get better news! Thinking about you.
Thankyou so much to all who have supported us. You have really helped.
Susie xx
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Good luck with it all Susie. Mine is a strange case in that I have lymph involvement only noticed post surgery , and I have a rapidly rising psa. Yet no scans have found any bone or further tissue spread. Hopefully the chemo will slow it all down for you.
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Hi Susie,
I’m sorry to see that you’ve got more than you bargained for. I don’t have any knowledge of the soft tissues but I can give you info about Docetaxel if you need any.
All the best and take care
Dave
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Hi Davywls
Thanks for the offer. I’d be really interested to hear about you got on with Docetaxel. I have no experience of chemo at all. How often did you have it?
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Hi Susie,
I have been holding back from posting for you as even though I knew your probable outcome with your husbands PSA , we always live in hope .
It is so easy to live in fear and be gripped by terror trust me I took that route for quite a long time.
I know at this moment in time you are feeling scared and overwhelmed, I was too 4 and a half years ago but the biggest thing I learned in those years was to accept and live everyday , squeeze every moment .
So many on here are are still going strong many years after a pretty dim diagnosis.
You can do this
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Thankyou Julie. How kind of you to send such an inspirational message. I am really going to try to sqezze every moment! Xx
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Hi Susie
My husband had a similar diagnosis but without the soft tissue. He had 6 sessions of Docetaxel, one every three weeks. The HT worked on it's own to begin with as before Chemo started his PSA had gone down from over a thousand to about 12. With the Chemo his PSA reduced to 1.1 although now it has started to increase again. He didn't find the Chemo too bad and continued to work most days. You will need to watch for any rise in temperature and react very quickly, you will be told when to act. My husband did have one and ended up in hospital with antibiotics for a couple of days.
For now the HT should be working and already bringing the PSA down so try and enjoy Christmas.
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I had the same cycles/frequency as hiitsme’s husband.
The treatment is given through a cannula in the back of the hand. As well as the Docetaxel there will be an anti-sickness drug and a steroid put through the line first. The whole procedure takes several hours so having something to occupy you is a good idea. My sons and daughter gave me a chemotherapy survival pack that they made up themselves! I escaped pretty much unscathed apart from some bouts of fatigue and issues with my finger and toes nails. My hair and beard thinned a bit and turned white but that has grown again and back to it’s normal grey. All body hair went but has regrown. As mentioned above there is a risk of infection when the white blood cell is down. This happens during each cycle but you should be told when the riskier periods are. Steriod tablets are taken throughout the chemotherapy cycles with extra taken the day before and the morning of the next treatment. A blood test and an appointment with the doc are also required before each treatment. I had mine the day before but it can also happen on the day. My wife was allowed to sit with me during the first treatment but after that it’s just the patient. Obviously I don’t know how other locations operate but I was happy with that and had no problems with the forty mile drive home afterwards. We actually had a very good briefing of what to expect and what to do if at all worried, from the nurse who gave my first treatment.
Thinking of you both
Dave
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Thank you for that information. It really helps to hear stories of how others get along. Hope you have a very Happy Christmas.
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That’s really helpful to hear. My husband doesn’t often like to hear too many detail, unlike me, but he was really interested to hear that. Great preparation for the actual event. I hope you too have a really happy Christmas. Thanks again fo taking the time to post.
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I just hope I’ve have been some help.
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So sorry to hear about your Husbands diagnosis. I'm afraid that I'm 7 months ahead of you having been diagnosed in May with Cancer widespread through the bones but not in soft tissue. PSA of 126 which is currently not registering as HT has got it down and controlled it. I am on 3 monthly Prostap and was originally booked in for chemo but then we heard about the STAMPEDE trial results which suggested an improved outcome going on Abiraterone instead of chemo and my Onco got that funded by BUPA. Was all going really well until by liver decided it didnt like the Abi so I'm currently off it for the second time and got bloods on 3rd Jan which may see me back on a half dose.
May be worth talking to your Onco about the Abiraterone.
My Wife and I spent the first 3 months pretty much falling apart as the words "incurable" and "cancer" are not words you want to hear, especially when they are talking about you. However, you do get stronger and life does return to a bit more like normal. I have learned that it's vital to live life to the full when you have little idea how much of it this bloody disease is going to allow you to have.
Edited by member 21 Dec 2017 at 16:12
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Hi Susie
Just been reading your posts and I can totally understand how you are feeling . We like so many on this forum have been in and are still in the same situation eighteen months down the line. Our journey has been a bit more complex as hubby has had a few more cancers to deal with on top of advanced prostate cancer. But I really think a positive attitude and an active body has helped to keep him focused. He totally amazes me everyday with his outlook on live and takes things in his stride. The lovely people at cancer support have been brilliant and can offer counselling and other relaxation therapies which do help the mind as well as the body.
Good luck to you both on this journey and keep in touch. Try and enjoy Christmas the best you can in the circumstances.
Debbie x
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Hello, All - just tripped into this website because a member posted a short review of my serio-comical memoir that was sent to him by a friend in America, SAYING GOOD-BYE TO YOUR PROSTATE by Jamie MacKenzie. I am very gratified that it has been mentioned here, and want to encourage men AND women to consider purchasing it at Amazon or Audible, because partial proceeds go to the wonderful Prostate Cancer Foundation in California in memory of a childhood friend. It's short, large print, funny and will allow you to learn and laugh, while being reassured, at this very scary subject. Test early. PC is 33% MORE prevalent than breast cancer - but almost NO ONE knows this. And SO treatable and curable, but must be caught early. If I can be of any help to any members, please don't hesitate to reach out to me. Best wishes for the holidays and EVERY day --- Jamie
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Thankyou for taking the time to post. Your words really rang true this evening. We decided to go into Leeds this afternoon and experience the Christmas lights and atmosphere. Went for a cocktail in the middle of shops then for a really lovely meal at a new to us restaurant. Back on train. What a tonic it was. We were able to make references to the PC and chemo coming up without too much misery! How great was that. Thanks for the inspiration and time to talk. Xx
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Fantastic news. I so hope we have good results. I will definitely be asking about that when we go in the new year. I’ve read about it. Hope your Christmas is lovely and that the New Year brings happy times. X
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I asked about Abiraterone a little while back when it was cleared for early use. I was told I didn’t need it yet but would get it when the time came. Bear in mind that I had already had chemotherapy, which an earlier STAMPEDE trial showed had better outcomes being given early on rather than was the case of not giving it until the cancer became HT resistant. I am currently taking part in the STAMPEDE trial looking to see if the diabetic drug Metformin will be of use as future PC treatment so things are evolving all the time.
I’m glad you were both able to have an enjoyable day out. Hope you can have a good Christmas. Our house looks like Santa’s workshop at the moment and we are looking forward to a house full of children and grandchildren 😀
Edited by member 22 Dec 2017 at 10:11
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