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Scared, looking for advice

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User
Posted 28 Apr 2020 at 23:23

Hi There,

I am 49 years old with three young kids and yesterday I was diagnosed with prostate cancer and I am not afraid to say I am scared.

With the current C-19 situation I have been just been getting sent for various scans and tests and had not been given an opportunity to speak with anyone face to face.  I had my biopsy  a few weeks back which was kinda but not quite face to face!   Understandably with C-19 they are trying to reduce the number of people coming into hospital and reduce the risk for all, so I was in and out in about 90 mins.  The only thing that they said to me was, that to lower the risk of infection and the outside chance that I might need to stay overnight because of this, they would only do a 3 sample biopsy instead of 12 sample.

The lack of any discussion, advice etc left very mentally unprepared for the phone call I made yesterday to get my results coupled with the additional bombshell they dropped on me about ED and incontinence, I naively never knew!

I am trying to make sense of this but not doing very well, they mention possible treatment options but my mind is a little scrambled at the moment and I wont get to see a specialist for at least a month and again it might just be over the phone.  I have a question about my Gleason score, I am 4+3, I know from reading through this site it would be better if it had been 3+4.  Should I be concerned that a 3 point rather than 12 point biopsy was carried out and there might be more there that was missed?  Sh*t and I cant even bring myself to think about treatment options and their side effects.  Any help and advice most welcome.

On an additional note I was tested and found to have the Brca gene 6 years ago after my Father was diagnosed with prostate cancer.  The gene clinic recommended I get a PSA and exam every year as I was in a high risk group.  My GP carried it out the first year, the second year he only wanted to do the PSA test.  The following years he refused to do either part of the test despite me asking as he felt the test was totally inaccurate.  So 4 years without any tests.   It was only after I got back in touch with the gene clinic at my local hospital  as I was concerned by the lack of testing that he agreed to do a PSA test.   Please if you know of anyone in similar circumstances and the GP tells them to go away until they show symptoms, Please, please get them to dig their heels in and insist on the test!

Thank you, all advice welcome.

 

 

 

User
Posted 29 Apr 2020 at 00:14
Okay, scary but let's break it down into manageable chunks.

You say you have had some scans - were any of those before the biopsy? If yes, that's a good thing as it suggests they already knew where they wanted to get samples from. Did they ever mention anything about there being suspicious areas on the scans? It is possible that with only 3 samples taken, there could be more cancer of a different grade but to be fair, that could be higher or lower and even if you had 12 or 30 cores taken it could be that there was a higher grade cancer lurking just beyond the needle. Biopsies are not infallible; they are just indicators or predictors.

If the scans have all or mostly been after the biopsy, that suggests that you have had a range of diagnostics and then an MDT (multi-disciplinary team) has looked at your results.So the treatment options that were mentioned to you are what a team of specialists have considered suitable.

Whether you are BRCA1 or BRCA2 makes quite a difference - can you remember which you are?

Do you know what your most recent PSA result was?

If you were given a phone number / contact name yesterday (ideally, for a named urology nurse) it will be worth phoning and asking them to copy you into the diagnostic letter they will be sending to the GP. If not a nurse, phone the urology department, the urologist's secretary or just ask your GP receptionist to send you a copy of the letter when they receive it. That letter should tell you the important things that members here will all ask - like staging (a T number) and type of prostate cancer (there are at least 27 types, adenocarcinoma being the most common by far).

John was 50 at diagnosis and I was 44 - it is life changing regardless of gleason score, stage, treatment option available or taken.

Your GP sounds like a tw*t

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

User
Posted 29 Apr 2020 at 01:14

My thoughts are very similar to Lyn's, so I will not repeat other than to say I assume you had an MRI first which showed a suspicious area (and/or perhaps a DRE at the hospital your GP failing to do this). Were it not so taking just 3 cores at random would not make sense. We don't know if you had a bone scan. The most important indicator missing as I see it is your staging because this can be an overriding factor in suitable treatment.

I appreciate this has come as a great shock and serious concern. PCa can be unpredictable in the way it progresses and responds to treatment so you cannot rely on your response being the same as another with a similar diagnosis. There may be a treatment recommendation in your case but often it is left to the patient. so learning more about the disease and possible treatments can be useful. I suggest you download or obtain a hard copy of the 'Tool Kit' in this respect. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

 

Edited by member 29 Apr 2020 at 01:20  | Reason: Not specified

Barry
User
Posted 29 Apr 2020 at 10:53
Only thing I would add is your GP is a f*cking Tw*t!!

Only real difference between 4+3 and 3+4 is:

You will not have an active surveillance option and

Treatment should be progressed with a little more urgency - I suspect you will only have options of surgery or some kind of RT?

Prognosis and an idea of a likely "cure" can be ascertained from these nomograms:

https://www.mskcc.org/nomograms/prostate

So read up on the side effects of both and decide what is right for you, then set about making sure you don't fall down a Covid crack and Mia your chance for a durable remission.

User
Posted 29 Apr 2020 at 15:00
BRCA1 & 2 are just two of about 20 gene faults that can increase the risk of prostate cancer. I don't think one is better or worse than the other except that there is a new treatment for advanced PCa which is particularly effective in BRCA2 cases. BRCA cases can be (but aren't always) more aggressive than others and are often diagnosed at a more advanced stage - i.e., it has already spread to lymph nodes or bone, so the fact that your bone scan was clear is good news.

I don't think anything can be deduced from your PSA rise in March, especially if the biopsy was done in between the two tests; biopsies can raise the PSA for a short while afterwards as can infection.

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

User
Posted 29 Apr 2020 at 16:57

I think the link between BRCA2 and prostate cancer is better researched and understood.
It looks like there's also a statistical link with BRCA1, but not so significant and not understood (as far as I know, but I may not be up to date).

Ask as much as you want. There are no silly questions.

User
Posted 29 Apr 2020 at 19:33

Hi

I was diagnosed on 26/03/2020 so similar situation to you ref COVID and face to face meetings with consultants. My diagnosis was given over the phone by urologist two days after biopsy.

First telephone call with Oncologist was Friday 24/04/2020 so nearly a month, however during that time I had CT scan and 3 weeks of Bicalutamide and my first Prostap jab at GP so treatment started, although chemo on hold. My first face to face with oncologist is booked for 10/06/2020.

Try to glean as much information as you can from any letters received and from the very helpful members on here to allow you to prepare for calls as I found that very helpful.

all the best

Mark

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User
Posted 29 Apr 2020 at 00:14
Okay, scary but let's break it down into manageable chunks.

You say you have had some scans - were any of those before the biopsy? If yes, that's a good thing as it suggests they already knew where they wanted to get samples from. Did they ever mention anything about there being suspicious areas on the scans? It is possible that with only 3 samples taken, there could be more cancer of a different grade but to be fair, that could be higher or lower and even if you had 12 or 30 cores taken it could be that there was a higher grade cancer lurking just beyond the needle. Biopsies are not infallible; they are just indicators or predictors.

If the scans have all or mostly been after the biopsy, that suggests that you have had a range of diagnostics and then an MDT (multi-disciplinary team) has looked at your results.So the treatment options that were mentioned to you are what a team of specialists have considered suitable.

Whether you are BRCA1 or BRCA2 makes quite a difference - can you remember which you are?

Do you know what your most recent PSA result was?

If you were given a phone number / contact name yesterday (ideally, for a named urology nurse) it will be worth phoning and asking them to copy you into the diagnostic letter they will be sending to the GP. If not a nurse, phone the urology department, the urologist's secretary or just ask your GP receptionist to send you a copy of the letter when they receive it. That letter should tell you the important things that members here will all ask - like staging (a T number) and type of prostate cancer (there are at least 27 types, adenocarcinoma being the most common by far).

John was 50 at diagnosis and I was 44 - it is life changing regardless of gleason score, stage, treatment option available or taken.

Your GP sounds like a tw*t

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

User
Posted 29 Apr 2020 at 01:14

My thoughts are very similar to Lyn's, so I will not repeat other than to say I assume you had an MRI first which showed a suspicious area (and/or perhaps a DRE at the hospital your GP failing to do this). Were it not so taking just 3 cores at random would not make sense. We don't know if you had a bone scan. The most important indicator missing as I see it is your staging because this can be an overriding factor in suitable treatment.

I appreciate this has come as a great shock and serious concern. PCa can be unpredictable in the way it progresses and responds to treatment so you cannot rely on your response being the same as another with a similar diagnosis. There may be a treatment recommendation in your case but often it is left to the patient. so learning more about the disease and possible treatments can be useful. I suggest you download or obtain a hard copy of the 'Tool Kit' in this respect. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

 

Edited by member 29 Apr 2020 at 01:20  | Reason: Not specified

Barry
User
Posted 29 Apr 2020 at 10:53
Only thing I would add is your GP is a f*cking Tw*t!!

Only real difference between 4+3 and 3+4 is:

You will not have an active surveillance option and

Treatment should be progressed with a little more urgency - I suspect you will only have options of surgery or some kind of RT?

Prognosis and an idea of a likely "cure" can be ascertained from these nomograms:

https://www.mskcc.org/nomograms/prostate

So read up on the side effects of both and decide what is right for you, then set about making sure you don't fall down a Covid crack and Mia your chance for a durable remission.

User
Posted 29 Apr 2020 at 13:49

Firstly thank you all for your kindness including Andy 62 who emailed me as well.  Sometimes it is the little things that make the biggest difference and the quickness of response and the kindness that you have all shown has made a big difference to me just now as I have been feeling totally lost.

Secondly thank you for all the good advice especially on the questions I need to ask and the areas that I need to read up on, I really appreciate this as I feel with the current C-19 situation I am missing out on being sat down at a clinic and things being explained to me [ which of course is understandable ]  Compounded by the non interest from my GP [ which is less understandable ] 

Thirdly would it be ok to ask some questions just now.   My PSA test at the start of March was 13.7 and at the end of March 14.9, does this indicate anything when combined with the results from my biopsy of 4+3?

I had a MRI scan before the biopsy and I believe I have a lump right side circa 1cm.  My bone scan came back clear.  There was cancer in each of my three samples.

I think the BRCA gene I have is BRCA2, though I am trying to find out, is BRCA 2 better than BRCA 1.  Sequels generally aren't! [ think Jaws ]

I am waiting on a call back from the hospital so I can ask about my T stage and type of cancer.  Lyn, I might come back and ask you more questions when I get that info, hope that is ok?

Fourthly, I can be a little slow so might have some questions about all the great info you have recommended to help me better understand it,  esp the nonograms bit as longevity has been praying on my mind. Francij what do you mean by a Covid crack?  - Told you I can be slow.  

And finally thank you, really humbled by your kindness.

Chris 

User
Posted 29 Apr 2020 at 15:00
BRCA1 & 2 are just two of about 20 gene faults that can increase the risk of prostate cancer. I don't think one is better or worse than the other except that there is a new treatment for advanced PCa which is particularly effective in BRCA2 cases. BRCA cases can be (but aren't always) more aggressive than others and are often diagnosed at a more advanced stage - i.e., it has already spread to lymph nodes or bone, so the fact that your bone scan was clear is good news.

I don't think anything can be deduced from your PSA rise in March, especially if the biopsy was done in between the two tests; biopsies can raise the PSA for a short while afterwards as can infection.

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

User
Posted 29 Apr 2020 at 16:57

I think the link between BRCA2 and prostate cancer is better researched and understood.
It looks like there's also a statistical link with BRCA1, but not so significant and not understood (as far as I know, but I may not be up to date).

Ask as much as you want. There are no silly questions.

User
Posted 29 Apr 2020 at 19:33

Hi

I was diagnosed on 26/03/2020 so similar situation to you ref COVID and face to face meetings with consultants. My diagnosis was given over the phone by urologist two days after biopsy.

First telephone call with Oncologist was Friday 24/04/2020 so nearly a month, however during that time I had CT scan and 3 weeks of Bicalutamide and my first Prostap jab at GP so treatment started, although chemo on hold. My first face to face with oncologist is booked for 10/06/2020.

Try to glean as much information as you can from any letters received and from the very helpful members on here to allow you to prepare for calls as I found that very helpful.

all the best

Mark

User
Posted 01 May 2020 at 20:02

Thank you all again for your help and advice, for the first time in this process I feel I have been given a bit of support and it has come from you guys here and nowhere else, thank you it has meant a lot. 

Mark CBR1100XX, hope things are starting to piece together in your head as well.  Mentally I am finding it tough.  I really hope you are starting get the head/mental bit to settle.

I found out my T stage any help with this and what it all means would be great.

So I am T2 with Lymph nodes clear and metastatic clear?  adenocarcinoma is the type I have.

My two psa  tests 3 weeks apart and all before my biopsy were 13.7 & 14.9.

One aspect I find a little strange from the process so far is that I have not spoken to a doctor either face to face or on the phone, dont get me wrong the nurse specialists and the people doing the various scans have been nice but I find it strange I have been diagnosed with cancer and I have not been able to see a doctor and I got told it will be the end of May before I get to see one.  I have not been put on any drugs.  Is all of this normal?  I have also found out that prostrate cancer care in Edinburgh and East of Scotland is terribly underfunded. 

 

With regards to my GP I called this week to raise a compliant on his refusal to test me over the years and he responded very aggressively and referred back to the letter from the gene clinic when I was identified with BRCA 2, stating that it only recommended that I get tested regularly and it never stated at what interval.  Got to say it got my back up, failed in his duty of care, ignored the guidance and now trying to cover himself, oh and at no point during the conversation asked how I was doing.  Once I get my head around my cancer I might need some other advice on escalating the issue with my GP

Thank you all again

Chris 

 
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