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Terrified Wife

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User
Posted 03 Aug 2019 at 01:42

Hi all & thank you for taking the time to read this.sorry if I waffle.

My husband 1st started his journey 5 years ago when a member of his family had a prostate cancer diagnosis & told him to get checked out.Apologies because I can't remember all of his exact PSA results.

So 5 years ago he had his first PSA test which was elevated for his age, this resulted in a DRE which said he had an enlarged & misshaped prostate. They did a biopsy to be careful which was negative and it was assumed that the results of the raised PSA was due to the enlarged prostate.

It was advised that he continued to have repeated PSA Tests done every 2 years. The next one was slightly elevated on the previous but not drastically. He then had a further PSA 18 months ago which had elevated again, this time the consultant decided he wanted him tested again in 6 months, this test hadn't been excessively high, around 5 & he was 51 at the time. 

The next test was again raised on the previous one & this time he had the additional symptoms of never feeling like he had emptied his bladder & being unable to 'hold on' when the urge happened. The consultant decided he had an overactive bladder but again wanted to see him 6 months later but this time was to have a PSA done 1 week prior to the appointment.

That appointment was in march 2019, again his PSA levels has raised further this time being 5.8 not excessive but as far as I'm aware higher than it should be of somebody aged 52. So the consultant decided to have an MRI with dye done. This showed a mass in his prostate. It was therefore decided that he would have a biopsy.

The biopsy was the type that goes through the peritoneum. That was 3 weeks ago. He was told that he would have a follow up appointment in 2-3 weeks to discuss the results. As of yet he hasn't received an appointment letter & I can't help but think it's because they're having to do further tests to find out what type of cancer it is & how advanced.

I've asked my husband to contact the hospital to find out what's happening but he's admitted he's too worried. So basically he would rather not know. I'm of the opposite frame of mind & would rather know what we're dealing with. 

Luckily he's managing to sleep, even if it's not as nourishing as normal he is getting about 6 hours sleep a night, I'm not & although it's not me who maybe ill, it will be soon if things aren't resolved soon. If it is Cancer he needs me to be strong, fit & healthy so I'm the best support possible. However at the moment my general health is deteriorating due to stress (I have various mental health conditions & have developed an acute case of hives).

Am I getting ahead of myself? I'm not sure if my mental health is playing a part & clouding my objectivity so it's possible I'm worrying obsessively without reason but at present I can't eat or sleep which I know will be no good to him if it's worst case scenario.

I can't loose him, I can't even begin to imagine a life without him. From the limited information I've been able to find out about biopsy results it says y the longer it takes the more likely it is that it's cancer. From what I've read if the results are negative then they'll be available within 7-10 days but if it's positive then they need to do further tests to find out what type of cancer it is and how progressed it is. So obviously as it's now 3 weeks I'm thinking worst case scenario & they're busy testing it to find out. I know with a PSA result of around 6 it's nothing in comparison to what a lot of people have who don't have cancer but the fact that his has been steadily rising over a period of time, his other symptoms & the mass that was detected on the MRI I'm feeling quite pessimistic.  Am I right in thinking they must be doing further tests? Or is it normal to wait longer for the results that what is advised?

I'm sorry for my ramblings h

User
Posted 03 Aug 2019 at 01:42

Hi all & thank you for taking the time to read this.sorry if I waffle.

My husband 1st started his journey 5 years ago when a member of his family had a prostate cancer diagnosis & told him to get checked out.Apologies because I can't remember all of his exact PSA results.

So 5 years ago he had his first PSA test which was elevated for his age, this resulted in a DRE which said he had an enlarged & misshaped prostate. They did a biopsy to be careful which was negative and it was assumed that the results of the raised PSA was due to the enlarged prostate.

It was advised that he continued to have repeated PSA Tests done every 2 years. The next one was slightly elevated on the previous but not drastically. He then had a further PSA 18 months ago which had elevated again, this time the consultant decided he wanted him tested again in 6 months, this test hadn't been excessively high, around 5 & he was 51 at the time. 

The next test was again raised on the previous one & this time he had the additional symptoms of never feeling like he had emptied his bladder & being unable to 'hold on' when the urge happened. The consultant decided he had an overactive bladder but again wanted to see him 6 months later but this time was to have a PSA done 1 week prior to the appointment.

That appointment was in march 2019, again his PSA levels has raised further this time being 5.8 not excessive but as far as I'm aware higher than it should be of somebody aged 52. So the consultant decided to have an MRI with dye done. This showed a mass in his prostate. It was therefore decided that he would have a biopsy.

The biopsy was the type that goes through the peritoneum. That was 3 weeks ago. He was told that he would have a follow up appointment in 2-3 weeks to discuss the results. As of yet he hasn't received an appointment letter & I can't help but think it's because they're having to do further tests to find out what type of cancer it is & how advanced.

I've asked my husband to contact the hospital to find out what's happening but he's admitted he's too worried. So basically he would rather not know. I'm of the opposite frame of mind & would rather know what we're dealing with. 

Luckily he's managing to sleep, even if it's not as nourishing as normal he is getting about 6 hours sleep a night, I'm not & although it's not me who maybe ill, it will be soon if things aren't resolved soon. If it is Cancer he needs me to be strong, fit & healthy so I'm the best support possible. However at the moment my general health is deteriorating due to stress (I have various mental health conditions & have developed an acute case of hives).

Am I getting ahead of myself? I'm not sure if my mental health is playing a part & clouding my objectivity so it's possible I'm worrying obsessively without reason but at present I can't eat or sleep which I know will be no good to him if it's worst case scenario.

I can't loose him, I can't even begin to imagine a life without him. From the limited information I've been able to find out about biopsy results it says y the longer it takes the more likely it is that it's cancer. From what I've read if the results are negative then they'll be available within 7-10 days but if it's positive then they need to do further tests to find out what type of cancer it is and how progressed it is. So obviously as it's now 3 weeks I'm thinking worst case scenario & they're busy testing it to find out. I know with a PSA result of around 6 it's nothing in comparison to what a lot of people have who don't have cancer but the fact that his has been steadily rising over a period of time, his other symptoms & the mass that was detected on the MRI I'm feeling quite pessimistic.  Am I right in thinking they must be doing further tests? Or is it normal to wait longer for the results that what is advised?

I'm sorry for my ramblings h

User
Posted 03 Aug 2019 at 23:07

“From the limited information I've been able to find out about biopsy results it says the longer it takes the more likely it is that it's cancer. From what I've read if the results are negative then they'll be available within 7-10 days but if it's positive then they need to do further tests to find out what type of cancer it is and how progressed it is.”

If you have read that online, it was an unreliable source. If anything, it tends to work the other way round - if the results are really bad, the patient gets called back earlier than expected. Plus they don’t look at a sample, see cancer and then look at it again but in more detail. All of that information will already have been assessed in the lab, for every core that they took, and the info is passed back to the urologist for consideration. As Andy says, if cancer has been detected then the results usually go to a MDT meeting (unless you are in the private sector) for discussion.

The suggestion above to speak to a Macmillan nurse may or may not be helpful; I think Andy is forgetting that not all hospitals have Macmillan nurses but if you phone the urology department at the hospital and ask to speak to the urology nurse specialist, you might be lucky and get put through.

 

Edited by member 08 Aug 2019 at 23:13  | Reason: italics

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

User
Posted 26 Aug 2019 at 07:17
Don't want to rain on anyone's parade but!!

From what I can see this guy has not had an MRI or Template biopsy AND has a lumpy prostate. At age 50 those are all major concerns that significant disease is being missed.

Nedebz if active surveillance is offered you need to make sure it is ACTIVE and insist on an MRI so they can stage it more accurately.

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User
Posted 03 Aug 2019 at 12:11

Originally Posted by: Online Community Member
The biopsy was the type that goes through the peritoneum. That was 3 weeks ago. He was told that he would have a follow up appointment in 2-3 weeks to discuss the results. As of yet he hasn't received an appointment letter & I can't help but think it's because they're having to do further tests to find out what type of cancer it is & how advanced.

No, it's because there's a country-wide shortage of the staff who do the histology on the samples.

When the results are available, they are passed to the multi-disciplinary team (MDT) containing all the urologists, oncologists, and many other related staff, and once a week, they discuss the cases with new data, deciding what action to take next, and call you back in for a consultation on what the MDT has decided, and to get your views on treatment choices if treatment is necessary. 3 weeks is a typical turnaround from a test to next appointment, but overrunning that duration is common too. It makes no difference if the test is positive or negative to the time of the consultation. If it's positive, they'll want to do more tests, but not on those samples - they'll need to see him first and then book more tests/scans.

Prostate cancer usually moves slowly, so it doesn't have the extreme urgency of many other cancers. That means these appointments are not urgent, and also means that if cancer is diagnosed, you can take your time deciding which treatments are best for you (often they'll give you choices).

You could ring the urology department, explain you are worried, and ask when your consultation is likely to be.
You could also call and ask for the Macmillian nurse dealing with prostate cancer, and have a chat. They are wonderful, but you won't normally get introduced to them unless there is a cancer diagnosis. However, they completely understand the stress of waiting and being a partner of a patient, and may be able to help calm you. They can also influence consultant appointments, for example if the results are ready but there's a waiting list for appointments due to holidays - they could reschedule if they can see it's having  bad effect on you.

User
Posted 03 Aug 2019 at 12:50

Hi I think the waiting for results is the hardest but don't think because it's taking a little longer it means bad news.

As Andy said prostate cancer does not race away and the extra time being taken could be down to work load.

You both need all the information and advice from the specialists to go forward and make some decisions if you look at the toolkit it will help you with answers and what you need to ask the doctor when you get some better idea of the diagnosis .

All the members here will help you with questions as they did when i was diagnosed in 2016.

Good luck John.

 

User
Posted 03 Aug 2019 at 23:07

“From the limited information I've been able to find out about biopsy results it says the longer it takes the more likely it is that it's cancer. From what I've read if the results are negative then they'll be available within 7-10 days but if it's positive then they need to do further tests to find out what type of cancer it is and how progressed it is.”

If you have read that online, it was an unreliable source. If anything, it tends to work the other way round - if the results are really bad, the patient gets called back earlier than expected. Plus they don’t look at a sample, see cancer and then look at it again but in more detail. All of that information will already have been assessed in the lab, for every core that they took, and the info is passed back to the urologist for consideration. As Andy says, if cancer has been detected then the results usually go to a MDT meeting (unless you are in the private sector) for discussion.

The suggestion above to speak to a Macmillan nurse may or may not be helpful; I think Andy is forgetting that not all hospitals have Macmillan nurses but if you phone the urology department at the hospital and ask to speak to the urology nurse specialist, you might be lucky and get put through.

 

Edited by member 08 Aug 2019 at 23:13  | Reason: italics

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

User
Posted 03 Aug 2019 at 23:41

I got no letter. They rang after 2 weeks and said can you attend in 1 hour.  I was out but managed it. It wasn't good news but I felt mixed feelings as I was glad it was found as I'd gone to the GP for another reason. With a low psa he should be optimistic about treatment.

User
Posted 08 Aug 2019 at 21:31

Hi all, thanks for your guidance. We received his diagnosis today, T2,N0,MX, Gleason score 6 (3+3) so treatment options look hopeful.

Edited by member 08 Aug 2019 at 21:56  | Reason: Not specified

User
Posted 09 Aug 2019 at 01:51
Providing the cancer seems to be well contained, some men with 3+3 Gleason are told that Active Surveillance (AS) is an option with regular monitoring. This defers potential side effects of treatment, at least for a time but some men just want to get treatment done as soon as possible.
Barry
User
Posted 09 Aug 2019 at 10:16
Your man’s result is about as good as it gets without an out-and-out ‘all-clear’.

My friend in his seventies, G3+4=7, has been quite happily on active surveillance for five years, albeit with regular tests, scans and consultations.

In your fellow’s situation I would avoid radical treatment as long as possible.

Best of luck.

Cheers, John.

User
Posted 09 Aug 2019 at 12:35
T2 may rule out AS but it is definitely worth asking the question.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Aug 2019 at 07:47
Good result. G3+3 is the mildest possible type of prostate cancer, and is eminently treatment (or indeed, as others have said, may very well require no treatment at all). Any cancer diagnosis is of course worrying, but G3+3 cancer is not going to kill your husband, so put that thought entirely out of your mind.

Best wishes,

Chris

User
Posted 26 Aug 2019 at 07:17
Don't want to rain on anyone's parade but!!

From what I can see this guy has not had an MRI or Template biopsy AND has a lumpy prostate. At age 50 those are all major concerns that significant disease is being missed.

Nedebz if active surveillance is offered you need to make sure it is ACTIVE and insist on an MRI so they can stage it more accurately.

User
Posted 27 Aug 2019 at 23:39
I don’t think you have read it correctly, Francij ... he has had mpMRI with template biopsy. And the only people that have suggested AS so far are members on here!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2019 at 11:23
Re read and agree re MRI and template were done
 
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