Waiting again....for what...?

Therefore, this information in the letter sent to us in May is all complete lies:

Presenting PSA 9.1

• 27 March 2023 - MRI of the pelvis/prostate. Prostate gland volume at approximately 21 ml

and main area of abnormality in the left lateral transitional zone with breach through the

prostate capsule (T3a stage) and closely related to ipsilateral seminal vesicle

• 11 April 2023 - biopsy confirmed a diagnosis of adenocarcinoma Gleason 4+5 with cribriform

pattern; 10/21 cores positive, bilateral disease, but mainly left-sided.

• 21 April 2023 – MDT review of available investigation concluded to local staging T3aN0.

Recommendation for staging CT and bone scan, and consideration of radical treatment

options providing localized disease. Given urinary symptoms, to consider surgery.

• 21 April 2023 – CT scan of the chest, abdomen and pelvis, essentially clear with no evidence

of distant metastases; small pelvic lymph node reported, but not significantly sized

• 24 April 2023 – bone scan clear with no evidence of metastatic disease

After the RARP in June the surgeon said he was confident it was all removed.

So either the surgeon and the whole team are liars or this has progressed very very rapidly. Either way, from what I can see my husband seems to be in a situation that no one else can understand.

This is precisely why hardly any one answers me on this forum, whereas other people have hundreds of responses.

Which is why I have not asked questions for a year.

I appreciate this is a wonderful and supportive group but I am coming to the conclusion that it is only for those that have the normal progression of this disease.

Maybe it should be put out there that PCa does not always follow the slow growing progression that everyone says time after time after time.

I feel like my husband’s experience, although rare, is very real and men should know that this disease does not always sit there just growing slowly.

The last scan on the list you gave was a CT scan which isn't the most accurate for very small tumour detection - I suspect that the post RARP was a PET scan.

So it doesn't seem like you are being lied to but that they followed standard protocols which is fine in 99% of cases - it's unfortunate that your husband is in the 1% and I'm so sorry that was the case.

Hopefully he is now getting the treatment to help. Good luck to you both.

I guess you've used the word "lies" for dramatic effect. And I fully approve of that, these posts should entertain as well as inform.

I think the letter you received with the diagnosis was the best information they had at the time. As Steve has said the scans were the most appropriate for 99% of people but your husband slipped through the net.

Allowing 1% to "die" (used for dramatic effect), in order to treat 99% at less cost, is the reality of the NHS. Us common folk can't expect to be treated like royalty.

People on here are very hesitant to post outside of their own experience. As your husbands situation is so unusual very few can speak from direct experience, but some have encyclopedic knowledge of other posts and research papers and can give a reasoned reply.

Edited by member 23 Mar 2024 at 12:21  | Reason: Not specified