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Possibly spread to bones

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User
Posted 11 Mar 2018 at 17:21
Hi. Have just discovered my husband has prostate cancer following a PSA of 7.6, a DRE and an mri and biopsy. To say we are worried is an understatement. Unfortunately the surgeon has stated that the shading on one side of his prostate would indicate the cancer may have spread outside the prostate and that he will have to have nerves etc removed in that area. He is booked in for a bone scan followed by surgery to remove the prostate in April by the Di Vinci robot.

His Gleason has been calculated at 7.

If the cancer has spread to the bones does it mean his disease is effectively terminal or can it be kept at bay?

The DRE seemed to reveal his prostate was smooth and tender and was told that it felt fine. Luckily the doctor advised my husband to have an MRI and biopsy to be on the safe side. If he hadn’t insisted on this I think it may have been a different story in a few years.

We are now both sick with worry. He doesn’t want to talk about it and I am left with lots of unanswered questions and feeling quite anxious and isolated.

All the waiting is very stressful. I presume the results of the bone scan may or may not determine the treatment needed. I am dreading the results of the bone scan.

I am interested to know what happens after prostate is removed. Presume we will get an appointment to see surgeon to discuss results.

Another worry is that as my husband has ankylosing spondylitis the anethetist may not be able to get the tube down his throat. This is because his back and neck are curved due to the cartilage fusing.

Sorry this post is all over the place. It is a lot to take in.

Do as you would be done by
User
Posted 11 Mar 2018 at 20:04

Hi Sue,

While the surgeon has indicated the growth may have penetrated the capsule, your husband’s relatively low PSA strongly suggests that PCa would be unlikely to have spread to the bones.

I had a clear bone scan after diagnosis of PSA 9.6, T2 bilateral and Gleason 7

It is a very worrying time waiting for scans, results etc, but get as much information as you can. Have you downloaded the ‘Toolkit’ from the top of the page, Information –Get Support –Our Publications and Get Support

I would suggest telephoning the number at the top of the web page to speak to a Specialist Nurse about your concerns.

Best wishes, G

User
Posted 11 Mar 2018 at 19:36

If the scan shows that it has spread to the bones, it will be considered incurable but not terminal; terminal is usually used to describe someone for whom no further treatment is to be offered except pain relief whereas men with incurable prostate cancer can live for many, many years on hormone treatment.

The best thing to do is download the toolkit from this website or call the number at the top of the page to order a copy.

It is a bit worrying that the treatment has already been decided without any mention that you have seen an oncologist to discuss alternatives such as radiotherapy, especially with the complication of the other medical issues. In any case, if the bone scan shows spread they will not do the operation and will suggest alternatives - there is no point going through the trauma of surgery and the side effects / likely side effects if it has already metastasised (gone to other parts of the body).

Re what happens after surgery (assuming that goes ahead as planned) - he will see the surgeon 6 - 12 weeks later and will be given a full pathology report ... whether the G stayed at 7, whether it was contained, whether they think any cancer was left behind, etc.

He is likely to be incontinent for a while after the op - some men can control their bladder immediately but most find that it takes 3 - 12 months and some are left with permanent problems. It will be worth clarifying the nerves thing a bit more - if they need to remove all his nerve bundles then he will not be able to get erections in future (although there are injections and cream that might help with this). Even if they can save the nerves, he may be left with erectile dysfunction temporarily or permanently.

In your situation, I think I would be pushing for a referral to an oncologist to discuss what other treatments are available and also checking that the urologist is consulting with specialists about the spinal spondylitis

Edited by member 11 Mar 2018 at 19:38  | Reason: Not specified

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

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User
Posted 11 Mar 2018 at 19:36

If the scan shows that it has spread to the bones, it will be considered incurable but not terminal; terminal is usually used to describe someone for whom no further treatment is to be offered except pain relief whereas men with incurable prostate cancer can live for many, many years on hormone treatment.

The best thing to do is download the toolkit from this website or call the number at the top of the page to order a copy.

It is a bit worrying that the treatment has already been decided without any mention that you have seen an oncologist to discuss alternatives such as radiotherapy, especially with the complication of the other medical issues. In any case, if the bone scan shows spread they will not do the operation and will suggest alternatives - there is no point going through the trauma of surgery and the side effects / likely side effects if it has already metastasised (gone to other parts of the body).

Re what happens after surgery (assuming that goes ahead as planned) - he will see the surgeon 6 - 12 weeks later and will be given a full pathology report ... whether the G stayed at 7, whether it was contained, whether they think any cancer was left behind, etc.

He is likely to be incontinent for a while after the op - some men can control their bladder immediately but most find that it takes 3 - 12 months and some are left with permanent problems. It will be worth clarifying the nerves thing a bit more - if they need to remove all his nerve bundles then he will not be able to get erections in future (although there are injections and cream that might help with this). Even if they can save the nerves, he may be left with erectile dysfunction temporarily or permanently.

In your situation, I think I would be pushing for a referral to an oncologist to discuss what other treatments are available and also checking that the urologist is consulting with specialists about the spinal spondylitis

Edited by member 11 Mar 2018 at 19:38  | Reason: Not specified

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

User
Posted 11 Mar 2018 at 20:04

Hi Sue,

While the surgeon has indicated the growth may have penetrated the capsule, your husband’s relatively low PSA strongly suggests that PCa would be unlikely to have spread to the bones.

I had a clear bone scan after diagnosis of PSA 9.6, T2 bilateral and Gleason 7

It is a very worrying time waiting for scans, results etc, but get as much information as you can. Have you downloaded the ‘Toolkit’ from the top of the page, Information –Get Support –Our Publications and Get Support

I would suggest telephoning the number at the top of the web page to speak to a Specialist Nurse about your concerns.

Best wishes, G

 
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