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User
Posted 27 Nov 2019 at 09:22

After having problems going to the loo my husband visited our G.P. Within days we were at the hospital as his PSA was 13.9. He had an MRI scan and yesterday a biopsy as he was given a grade 5 from the scan. We are waiting for the next appointment. I don't know what to do to support him as I feel so useless and he keeps saying that "he is finished" and won't talk about his fears.  He is only 63 and we have 3 children who are devastated. Please can anyone help? Thank you Anni

User
Posted 27 Nov 2019 at 10:49

Hello Anni,

Waiting for all the results to come through and the consultation is a difficult time, the natural worry and darker thoughts creeping in. But your husband is far "from finished".  There are many treatments available which can lead to long term remission, sometimes long enough to die of natural old age.

If you haven't done so already download the toolkit from this site, or better still, speak to one of the super prostate nurses. 

Becoming more knowledgeable really does help ease those fears.

Best

Flexi

User
Posted 02 Dec 2019 at 20:26
Look at the figures, Ann: The 5 year survival rate between 2013 and 2017 for men diagnosed with stage 1 or 2 prostate cancer was 100.2%, while for men diagnosed at stage 3 it was 95.6%.

The figures are relative to death rates in the general population, so basically this is saying that FEWER men with localised prostate cancer died than men who did not have prostate cancer (presumably because the men with cancer are having more regular health checks).

By their very nature, survival rates are "historic", and the survival rates of prostate cancer have improved dramatically in the last 30 years, so someone diagnosed today has an even better survival probability than the figures above would suggest.

Planning your husband's funeral is, therefore, somewhat premature!

Best wishes,

Chris

User
Posted 27 Nov 2019 at 18:11
Statistically, with a PSA of 13 the odds are extremely high that the cancer is localised and treatment will be given with curative intent. My PSA was 32 on diagnosis. I had radiotherapy at the start of the year and now my PSA is 2.

Prostate cancer is an eminently treatable and survivable condition. It's very unlikely that your husband is "finished".

Best wishes,

Chris

User
Posted 27 Nov 2019 at 10:57
Hi Anni, sorry you find yourself here. Coincidentally I was diagnosed aged 63 with 13.9 PSA and thought I was finished, read my profile.

Once he gets over the initial shock and gets a full diagnosis and a treatment plan the situation will improve.

User
Posted 27 Nov 2019 at 20:41

Ann,

I really feel for you.
They will almost certainly do a bone scan as well as the biopsy, and it's very difficult to give advice until you have the result of both of those. You are facing the unknown at the moment, both because it's all new to you, and because until you have those diagnostic results, we don't know which of several different treatment paths your husband will be following. Facing the unknown is scary. When your diagnosis is known, your consultants will tell you what treatment options they recommend, and we can give you loads of advice too. The future will become less unknown and less scary as you see what your treatment options are and start deciding which way to go, which marks the start of taking back control of your lives.

At the moment, try to support each other. It sounds like your husband has stated his main fear, and a perfectly understandable one in the circumstances. Everyone in this forum has been through this personally or with a partner, but as you get to know more about the disease, you realise you aren't finished.

As Flexi said, order a copy of the Toolkit from this site, so you have it ready for use when have your full diagnosis.

Would love to give you all a big hug,
Andy.

User
Posted 27 Nov 2019 at 23:36

Hi Anni,

I can offer no advice but just want you to know that my dad is going down a similar route now. PSA @ 5.2 with MRI pi-rads 4. Biopsy done and waiting for results. The wait is horrifying. I have thought of 1000000 scenarios at the doctors appointment ranging from cancer free to he is going to die within a year (hopefully not less). Some days I am better some days I am worse. He has just had 2 7m old granddaughters and there is so much to live for. 

I have been on this forum every day to find some comfort. There is so much information and I have armed myself with questions to ask at the next appointment. I hope both of us will hear some good news then.

Melma

User
Posted 02 Dec 2019 at 11:52

I am sorry that your Old Man is such a pessimist, but I suppose the words ‘The Big C’ do strike fear into some people. Liver, lung and pancreatic cancer would have done to me, but prostate cancer did not, as statistically it’s about the least worst one to have.

Do yourselves a favour and order the free ‘Toolkit’ comprehensive information folder from this website, under the ‘Publications’ section.

The biopsy result should come through within a week or two, and the results of that and his other tests will be evaluated by a committee of many medics called the Multi-Disciplinary Team, who will advise the best way to proceed going forward.

Best of luck.

Cheers, John.

Edited by member 02 Dec 2019 at 12:00  | Reason: Not specified

User
Posted 02 Dec 2019 at 14:38

Hi Anni,

So sorry that your husband and yourself have joined the club. His reaction is completely understandable and I can only echo the words of others, as your journey progresses things become clearer and more easily dealt with and that this forum is a big source of the information and support that you need.

There are so many positive stories on here. Finished, far from it! In a small way my own story may help him. My initial diagnosis was a PSA of 738, which is by no means exceptional. I've just passed two years since diagnosis, my PSA has been <0.1 for 16 months. I won't pretend that the last two years have been fun but I'm as fit now as I have been for three years and looking forwards to many more. You will find many on here with more encouraging tales than mine. You will both get through this.

Best Regards

Andy

I will jump the fence in front of me. I'll worry about what's on the other side when I land.

If I can't see another fence then I will enjoy the ride.

I won't fret about fences which may never appear.

If I see another fence then I will jump it.

 

 

User
Posted 02 Dec 2019 at 17:15

Hi Anni

I agree with what the others have said. Having started this journey in September I can only say that Prostate Cancer is treatable and curable. Hold on to this thought. Good support here. 

 

User
Posted 02 Dec 2019 at 18:13
I agree with the above , IT IS MOST TREATABLE ! I have had my treatment and very pleased with the outcome there is plenty of support on here . Ok with all treatment there are side effects but most can get thru it , me I ended up,in A/E acute water retention but treated professionally , it’s ALL part of it the journey , from the time I had my first scan I found it bizarrely interesting and I just got my medical records and reading them , what the layman can understand , it surprised me how many people involved and reading it , the health professionals , did a extremely good job I thank them from bottom of my heart . DONT worry too much
User
Posted 02 Dec 2019 at 18:31

Originally Posted by: Online Community Member
Can anyone advise me on how long it can take to get a clear diagnosis and begin a treatment plan please. The waiting and uncertainty is horrible. He has started to plan his finances in preparation for his death.

Ann,
In my experience, you get an appointment about 3 weeks after any diagnostic test, but this varies with hospital.
The biopsy will probably either confirm or clear him of cancer.

If it does confirm cancer, there will be more tests to look and see where it is, which usually starts with a nuclear bone scan and sometimes CT and MRI scans (these are all painless procedures). These further tests will define the treatment path, and hence what treatment options are available to him. Sometimes, there's more than one choice of treatments, in which case you need to decide which to go for. Sometimes treatment starts before a full diagnosis is known (e.g. hormone therapy, if that's going to be part of the treatment plan).

Sorry, but this all takes time.

User
Posted 03 Dec 2019 at 13:39
It would be dangerous to draw too many conclusions from this but on the face of it, it seems that they have found some cancer but it is contained and he is therefore suitable for curative treatment. If that is the case, I hope he will also ask to see an oncologist to discuss alternatives to surgery.

It may not mean that at all though. It may be that at your hospital, one urologist is responsible for a patient during diagnostics but then if the patient is diagnosed with cancer (or is cleared of cancer, who knows?) the case is passed to another urologist for any interventions that might be helpful / necessary.

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

User
Posted 05 Dec 2019 at 12:01
Well if the 6 means a Gleason score that's about as good as it can be for somebody with cancer. Some consultants now regard 3+3 Gleason as hardly being classified as cancer although this cannot be taken for granted as it is possible that some higher grade has not been unearthed and the 3+3 could be very close to the periphery of the Prostate. Be cautiously optimistic!
Barry
User
Posted 05 Dec 2019 at 12:39
If indeed his Gleason score is 3+3=6, you may or may not be encouraged to know that if he had critical illness insurance with Aviva, they would not pay out as G6 is not classed as ‘life threatening’.

When you go to the next consultation, go with a list of questions, and if you want, record the answers on your phone. Moreover, speak to both a urological surgeon and an oncologist as to the way forward.

I hope old grumpy bum has cheered up a little bit😉

Cheers, John.

User
Posted 10 Jan 2020 at 13:25

You mentioned ‘you know who your friends are’ - in my case loads of friends who I hadn’t heard from for yonks got in touch to commiserate with me when they heard about my diagnosis of The Big C, presumably to offer me the Last Rites!

I have to say they may or not be disappointed as the reports of my imminent untimely demise were somewhat exaggerated...

Cheers, John.

Edited by member 10 Jan 2020 at 13:26  | Reason: Not specified

User
Posted 10 Jan 2020 at 16:40
Sorry about the spread and now Gleason 7 but hopefully HT/RT will now do the job. It does show that it is as well to wait for a full diagnosis before making judgements.
Barry
User
Posted 10 Jan 2020 at 19:42
So it sounds as if your husband will be on a treatment pathway with curative intent? That's excellent news. I had very similar treatment myself: 6 months' HT, then RT over two months and a further year's HT, which I'll finish next month. In my case at least the treatment hasn't been too bad at all in terms of side-effects. Please ask if there's anything you'd like to know about RT!

Very best wishes,

Chris

User
Posted 09 Apr 2020 at 10:48

Ann,

So pleased your husband is feeling better about the future now, and for you too.

Good insurance deals can sometimes be had buy paying for a premier banking account that includes insurance. You will probably have to pay an extra premium for the cancer, but this is often vastly less than from the travel insurance companies. It can also vary considerably depending where you are in treatment - it will likely become cheaper the longer after radical treatment (radiotherapy in your case) you take it out.

Do have a look at Macmillan's advice about traveling. They do a free book on it which you can pick up from any Macmillan cancer centre (if they're still open - probably available online too).

User
Posted 09 Apr 2020 at 10:55

As regards travel insurance have a look here https://community.prostatecanceruk.org/posts/t21596-Travel-Insurance-so-high

 

Edited by member 09 Apr 2020 at 10:55  | Reason: to highlight link

Barry
Show Most Thanked Posts
User
Posted 27 Nov 2019 at 10:49

Hello Anni,

Waiting for all the results to come through and the consultation is a difficult time, the natural worry and darker thoughts creeping in. But your husband is far "from finished".  There are many treatments available which can lead to long term remission, sometimes long enough to die of natural old age.

If you haven't done so already download the toolkit from this site, or better still, speak to one of the super prostate nurses. 

Becoming more knowledgeable really does help ease those fears.

Best

Flexi

User
Posted 27 Nov 2019 at 10:57
Hi Anni, sorry you find yourself here. Coincidentally I was diagnosed aged 63 with 13.9 PSA and thought I was finished, read my profile.

Once he gets over the initial shock and gets a full diagnosis and a treatment plan the situation will improve.

User
Posted 27 Nov 2019 at 18:11
Statistically, with a PSA of 13 the odds are extremely high that the cancer is localised and treatment will be given with curative intent. My PSA was 32 on diagnosis. I had radiotherapy at the start of the year and now my PSA is 2.

Prostate cancer is an eminently treatable and survivable condition. It's very unlikely that your husband is "finished".

Best wishes,

Chris

User
Posted 27 Nov 2019 at 20:41

Ann,

I really feel for you.
They will almost certainly do a bone scan as well as the biopsy, and it's very difficult to give advice until you have the result of both of those. You are facing the unknown at the moment, both because it's all new to you, and because until you have those diagnostic results, we don't know which of several different treatment paths your husband will be following. Facing the unknown is scary. When your diagnosis is known, your consultants will tell you what treatment options they recommend, and we can give you loads of advice too. The future will become less unknown and less scary as you see what your treatment options are and start deciding which way to go, which marks the start of taking back control of your lives.

At the moment, try to support each other. It sounds like your husband has stated his main fear, and a perfectly understandable one in the circumstances. Everyone in this forum has been through this personally or with a partner, but as you get to know more about the disease, you realise you aren't finished.

As Flexi said, order a copy of the Toolkit from this site, so you have it ready for use when have your full diagnosis.

Would love to give you all a big hug,
Andy.

User
Posted 27 Nov 2019 at 23:36

Hi Anni,

I can offer no advice but just want you to know that my dad is going down a similar route now. PSA @ 5.2 with MRI pi-rads 4. Biopsy done and waiting for results. The wait is horrifying. I have thought of 1000000 scenarios at the doctors appointment ranging from cancer free to he is going to die within a year (hopefully not less). Some days I am better some days I am worse. He has just had 2 7m old granddaughters and there is so much to live for. 

I have been on this forum every day to find some comfort. There is so much information and I have armed myself with questions to ask at the next appointment. I hope both of us will hear some good news then.

Melma

User
Posted 02 Dec 2019 at 10:51

Morning firstly can I thank everyone for their kindness and support at this difficult time. My husband had his biopsy last Tuesday 26th November and his consultant said that he would meet us next week to discuss the next step. As we have not received an appointment I contacted the hospital earlier today. I have been informed that his results are not back and we will be contacted once they are and an appointment will be arranged. 

Can anyone advise me on how long it can take to get a clear diagnosis and begin a treatment plan please. The waiting and uncertainty is horrible. He has started to plan his finances in preparation for his death. 

My thoughts are with you all. 

Thank you Anni

User
Posted 02 Dec 2019 at 11:52

I am sorry that your Old Man is such a pessimist, but I suppose the words ‘The Big C’ do strike fear into some people. Liver, lung and pancreatic cancer would have done to me, but prostate cancer did not, as statistically it’s about the least worst one to have.

Do yourselves a favour and order the free ‘Toolkit’ comprehensive information folder from this website, under the ‘Publications’ section.

The biopsy result should come through within a week or two, and the results of that and his other tests will be evaluated by a committee of many medics called the Multi-Disciplinary Team, who will advise the best way to proceed going forward.

Best of luck.

Cheers, John.

Edited by member 02 Dec 2019 at 12:00  | Reason: Not specified

User
Posted 02 Dec 2019 at 14:38

Hi Anni,

So sorry that your husband and yourself have joined the club. His reaction is completely understandable and I can only echo the words of others, as your journey progresses things become clearer and more easily dealt with and that this forum is a big source of the information and support that you need.

There are so many positive stories on here. Finished, far from it! In a small way my own story may help him. My initial diagnosis was a PSA of 738, which is by no means exceptional. I've just passed two years since diagnosis, my PSA has been <0.1 for 16 months. I won't pretend that the last two years have been fun but I'm as fit now as I have been for three years and looking forwards to many more. You will find many on here with more encouraging tales than mine. You will both get through this.

Best Regards

Andy

I will jump the fence in front of me. I'll worry about what's on the other side when I land.

If I can't see another fence then I will enjoy the ride.

I won't fret about fences which may never appear.

If I see another fence then I will jump it.

 

 

User
Posted 02 Dec 2019 at 17:15

Hi Anni

I agree with what the others have said. Having started this journey in September I can only say that Prostate Cancer is treatable and curable. Hold on to this thought. Good support here. 

 

User
Posted 02 Dec 2019 at 18:13
I agree with the above , IT IS MOST TREATABLE ! I have had my treatment and very pleased with the outcome there is plenty of support on here . Ok with all treatment there are side effects but most can get thru it , me I ended up,in A/E acute water retention but treated professionally , it’s ALL part of it the journey , from the time I had my first scan I found it bizarrely interesting and I just got my medical records and reading them , what the layman can understand , it surprised me how many people involved and reading it , the health professionals , did a extremely good job I thank them from bottom of my heart . DONT worry too much
User
Posted 02 Dec 2019 at 18:31

Originally Posted by: Online Community Member
Can anyone advise me on how long it can take to get a clear diagnosis and begin a treatment plan please. The waiting and uncertainty is horrible. He has started to plan his finances in preparation for his death.

Ann,
In my experience, you get an appointment about 3 weeks after any diagnostic test, but this varies with hospital.
The biopsy will probably either confirm or clear him of cancer.

If it does confirm cancer, there will be more tests to look and see where it is, which usually starts with a nuclear bone scan and sometimes CT and MRI scans (these are all painless procedures). These further tests will define the treatment path, and hence what treatment options are available to him. Sometimes, there's more than one choice of treatments, in which case you need to decide which to go for. Sometimes treatment starts before a full diagnosis is known (e.g. hormone therapy, if that's going to be part of the treatment plan).

Sorry, but this all takes time.

User
Posted 02 Dec 2019 at 18:41

Thank you, its the waiting and the unknown that I think is causing the depression and the panic. But as I have read from many people on this forum a diagnosis of prostate cancer does not seem to mean a death sentence. Thank you to everyone who has commented, I really appreciate your assistance. Anni 

User
Posted 02 Dec 2019 at 20:26
Look at the figures, Ann: The 5 year survival rate between 2013 and 2017 for men diagnosed with stage 1 or 2 prostate cancer was 100.2%, while for men diagnosed at stage 3 it was 95.6%.

The figures are relative to death rates in the general population, so basically this is saying that FEWER men with localised prostate cancer died than men who did not have prostate cancer (presumably because the men with cancer are having more regular health checks).

By their very nature, survival rates are "historic", and the survival rates of prostate cancer have improved dramatically in the last 30 years, so someone diagnosed today has an even better survival probability than the figures above would suggest.

Planning your husband's funeral is, therefore, somewhat premature!

Best wishes,

Chris

User
Posted 03 Dec 2019 at 13:33

We have received my Husbands appointment this morning and we are seeing a different Consultant. This Consultant specialises in minimal invasive surgery ( Google). Any advice or thoughts? Thank you Anni

User
Posted 03 Dec 2019 at 13:39
It would be dangerous to draw too many conclusions from this but on the face of it, it seems that they have found some cancer but it is contained and he is therefore suitable for curative treatment. If that is the case, I hope he will also ask to see an oncologist to discuss alternatives to surgery.

It may not mean that at all though. It may be that at your hospital, one urologist is responsible for a patient during diagnostics but then if the patient is diagnosed with cancer (or is cleared of cancer, who knows?) the case is passed to another urologist for any interventions that might be helpful / necessary.

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

User
Posted 05 Dec 2019 at 11:02

We have been informed today that my Husband does have prostate cancer but the good news is that his Consultant does not feel that it has spread.  He will be given a bone scan to confirm this. We have been given two options to consider provided his scan is clear, surgery or radiotherapy. The Consultant was lovely and spoke to him as a man, not just a visitor to his clinic which helped him so much. We feel relieved and he is more positive now. Thank you all for your support with this. 

Anni

User
Posted 05 Dec 2019 at 11:13
Did the consultant tell you what the Gleason score was, Ann?

Best wishes,

Chris

User
Posted 05 Dec 2019 at 11:24

No I don't think so but he mentioned the number 6.  He said that we would get written information following the bone scan. He said that once my husband had his treatment the cancer should not give him any more problems for at least 10 to 15 years. Am I being too optimistic? Anni 

User
Posted 05 Dec 2019 at 12:01
Well if the 6 means a Gleason score that's about as good as it can be for somebody with cancer. Some consultants now regard 3+3 Gleason as hardly being classified as cancer although this cannot be taken for granted as it is possible that some higher grade has not been unearthed and the 3+3 could be very close to the periphery of the Prostate. Be cautiously optimistic!
Barry
User
Posted 05 Dec 2019 at 12:39
If indeed his Gleason score is 3+3=6, you may or may not be encouraged to know that if he had critical illness insurance with Aviva, they would not pay out as G6 is not classed as ‘life threatening’.

When you go to the next consultation, go with a list of questions, and if you want, record the answers on your phone. Moreover, speak to both a urological surgeon and an oncologist as to the way forward.

I hope old grumpy bum has cheered up a little bit😉

Cheers, John.

User
Posted 10 Jan 2020 at 09:26

Happy New Year to everyone and I hope that it is for us all.

I thought that I would give an update on our journey which started in December. My husband has been confirmed as having prostate cancer with a Gleason score of 7. He had a bone scan and we received the results January 2nd.

The scan was clear however the cancer has spread and he is no longer eligible for surgery but started on oral hormone therapy the same day. He will be getting his first injection next Friday before starting Radiotherapy.

Both his Consultant and the Prostate Nurse were positive about his prognosis which has reduced some of our fears. 

Although we don't expect an easy ride with this at least the waiting and uncertainty is over.

You certainly find out who your friends are when the dreaded "C " word is mentioned.

The worst Christmas ever but hopefully a happier New Year.

Thank you for your support. 

Anni 

User
Posted 10 Jan 2020 at 13:25

You mentioned ‘you know who your friends are’ - in my case loads of friends who I hadn’t heard from for yonks got in touch to commiserate with me when they heard about my diagnosis of The Big C, presumably to offer me the Last Rites!

I have to say they may or not be disappointed as the reports of my imminent untimely demise were somewhat exaggerated...

Cheers, John.

Edited by member 10 Jan 2020 at 13:26  | Reason: Not specified

User
Posted 10 Jan 2020 at 14:20
Where has the cancer spread to, Anni?

Best wishes,

Chris

User
Posted 10 Jan 2020 at 16:40
Sorry about the spread and now Gleason 7 but hopefully HT/RT will now do the job. It does show that it is as well to wait for a full diagnosis before making judgements.
Barry
User
Posted 10 Jan 2020 at 19:31

I am not sure where it has spread to as we got so much information I don't think that we took it all in and the news that it had not affected his bones seemed to take priority. He has an appointment for his urine output in early February another scan I think. The Consultant said something about the hormone treatment should shrink the obstruction or he could shave it to encourage a more positive flow of urine before he starts the radiotherapy.

Overall he did not seem too concerned about the change in treatment  and explained that the radiotherapy would not change the outcome if he had surgery. 

I have a list of questions to ask the prostate nurse when we see her on Friday.

My post earlier referred to support coming from people you do not expect it to come from and people who you thought were friends avoiding you like you have the plague. Interesting experience and a steep learning curve from different directions. 

Thank you again for taking the time to read this and your replies.

Anni

 

User
Posted 10 Jan 2020 at 19:42
So it sounds as if your husband will be on a treatment pathway with curative intent? That's excellent news. I had very similar treatment myself: 6 months' HT, then RT over two months and a further year's HT, which I'll finish next month. In my case at least the treatment hasn't been too bad at all in terms of side-effects. Please ask if there's anything you'd like to know about RT!

Very best wishes,

Chris

User
Posted 09 Apr 2020 at 10:23

Update my husband is following the prescribed pathway and is having hormone injections next one due later this month. His Radiotherapy has been postponed due to the virus however he is much more upbeat about his future which is great. He has been reassured that he is on a cureable pathway and he is starting to think about a holiday however finding affordable insurance has become difficult. We have bought annual travel insurance from Cover for you for several years but they will no longer insure him. Does anyone have any experience of this and where can we buy affordable insurance? Surprisingly though it has not lowered his mood. Hope that everyone is remaining safe and well. Thank you. 

User
Posted 09 Apr 2020 at 10:48

Ann,

So pleased your husband is feeling better about the future now, and for you too.

Good insurance deals can sometimes be had buy paying for a premier banking account that includes insurance. You will probably have to pay an extra premium for the cancer, but this is often vastly less than from the travel insurance companies. It can also vary considerably depending where you are in treatment - it will likely become cheaper the longer after radical treatment (radiotherapy in your case) you take it out.

Do have a look at Macmillan's advice about traveling. They do a free book on it which you can pick up from any Macmillan cancer centre (if they're still open - probably available online too).

User
Posted 09 Apr 2020 at 10:55

As regards travel insurance have a look here https://community.prostatecanceruk.org/posts/t21596-Travel-Insurance-so-high

 

Edited by member 09 Apr 2020 at 10:55  | Reason: to highlight link

Barry
User
Posted 09 Apr 2020 at 12:11

Thank you everyone. I will discuss the suggestions with him. Best wishes Ann 

 
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