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Diagnosis update

User
Posted 26 Apr 2024 at 15:39

Hello everyone. Well it’s now official, I have cancer… however I am one of the lucky ones. Spoke to the CNS and She says the biopsy has come back, 7 out of 14 cores all at 3 giving a Gleason score of six, however she did say it was a CPG 2 ? Looking at the available information that means it must be over 4 mm. MDT meeting next week so I will probably get the consultation appt after that. Fingers crossed it will not be too big and it is just on one side.

The wife is now breathing again ! Will post again after the consultation. But I urge all men to insist on an urology appointment and not rely on the GP to diagnose. I went to my GP for a swollen knee, he sent me for a blood test and I asked for a PSA test, he was a little reluctant and ask why and if I had symptoms. To be honest I had a slower flow than I used to have but nothing I would worry about, PSA came back at 8.66. A different GP at the same practice gave me the result and ask me t book a second test and in the mean time come in for a DRE. Second test came back as 8.36, during the consult the doctor who did the DRE said it was ok and no further action was needed and she put this in my notes. Following a telephone conversation and me voicing my concerns the GP team referred me on to the 2 week pathway. It is down to the Urologist that I have been diagnosed and diagnosed early. My advice is get tested, if your PSA is above 5 or 6 insist on seeing a urologist don,t rely on your solely on your GP.

I am not disrespecting them they are excellent at what they do and they are overworked, but they are not specialists.

User
Posted 27 Apr 2024 at 07:53

Hi Paul,

Im sorry you’ve had such a struggle to get diagnosed, I really can’t understand why (some) GPS are reluctant to give you a PSA test and the DRE is only a guide to whether you have PCa. I had 2 DREs from different people and they both felt normal, but my PSA was 36 and I certainly HAD PCa, T3BN0M0. Because of this surgery was ruled out so I had to go down the HT😩/RT route. Hopefully being diagnosed early ish will mean you will have a choice of treatments and you can choose which is the best option for you.

Good luck on your journey,

Derek

Edited by member 27 Apr 2024 at 07:54  | Reason: Not specified

User
Posted 27 Apr 2024 at 08:14

Hi Derek. My point is the GP that gave the DRE said the prostate was normal and would not refer me (no further action needed). The Urologist found the left side to have a hard lump and be “craggy”. I can’t believe there was that much difference within 10 days.

Apparently, reading my GP notes it was only after the practice clinicians meeting did one of the other doctors suggest referring me due to the consistent high PSA and to follow guidelines. From what I can gather if my PSA had been around 4 or 5 they would not have referred me and the cancer would have been missed.

Reading the various experiences on here it seems a lot of early diagnoses are being missed. 
Scary as not everyone is as pushy as me. How many men are being diagnosed later than they need to be, this is not necessarily a disease that kills you but your quality of life is determined by what stage you are at due to the treatment side effects.

User
Posted 27 Apr 2024 at 09:14

Hi Paul,

TBH I think some GPS are not really that good at doing DREs, maybe it’s just because it involves putting your finger up someone’s bum! As I said mine felt perfectly normal but the large lesion was in a place that the DRE would not feel.

I have to say I cannot fault my diagnosis and treatment in Fife, the Urology Department is first class, I can phone my CNS anytime and they will call back. The communication is very good, now that I have had my last HT injection I will be sent a reminder letter every 3 months to get a PSA check and they will keep a close eye on things.

I do find however that sometimes you have to be proactive on your journey(that word still makes me laugh🤣🤣) so it’s good that you have pushed to get a diagnosis and can now get a treatment plan in place ASAP. Once you’ve done that most men find they feel better about this disease.

Derek

 
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