Post Treatment Follow up.....

I had a similar experience re post treatment in that there was no clear guidance post treatment.

I have read related press articles that given the demands on NHS charities such as this one

and MacMillan are picking much of this void.

Hi Angela, 

I am in a very similar position to your husband, treated at the Christie, I finished RT about 12 months ago. Though it seems a poor follow up, I think it is reasonable at least it was for me and my cancer.

I am on HT my PSA is now <0.1 and has been since a few months before RT treatment.

I was told after treatment "any problems, give us a call". I didn't have any problems so that was fine. 

First review is by telephone and is really just to ask if you have "any problems".

So first real follow up is six months after treatment. I have to go to my GP to get PSA about a week before. This has always come back as <0.1 (so far). I then go to see the specialist nurse at Ashton Health Centre, which is not my local GP, but I guess has some spare rooms. The nurse is sent out from the Christie Hospital, she is not just a nurse from the local GP surgery. I am as happy to see her as my consultant. 

She looks at PSA and says "that's good". I then go through a list of any questions I have (I write them down beforehand), she usually goes through a list of known side effects and I say whether I have them or not. She offers advice and would presumably refer me on if necessary. 

About a week later she writes to my GP summarising the meeting and I get a copy. Eventually I get a letter for the next appointment in six months.

For me this is fine, my cancer emits PSA, the HT reduces the PSA to near zero. There is no need to monitor things very closely until I come off HT (only one more injection to go, hooray!). Once I'm off HT we will just have to see how fast PSA rises, maybe I will then need monitoring more closely.

Will it be fine for your husband? I don't know. If he is on HT and the HT is controlling the cancer, and the cancer emits PSA I would say this would be fine. However your husbands cancer does not emit much PSA and is unusual so maybe it needs monitoring by something more than just a PSA test.

So in short I think the monitoring is fine for people with normal prostate cancer. I think the Christie are assuming your hubby has normal prostate cancer, if it is "unusual" yes give them a call and ask them to explain why they think six monthly psa check is sufficient.

"There are some rare types of prostate cancer that do not produce any PSA so blood tests all come back normal - these types are notoriously difficult to diagnose before they have spread so while it is awful to know that your partner has cancer, he is rather fortunate that this one was identified before it had gone to his bones or elsewhere.

If you have received a copy of the diagnosis letter from the urologist / oncologist to the GP it should say somewhere which type he has been diagnosed with. It is unlikely to be small cell or large cell PCa as he has been put on hormones, but your letter may say something like ductal cell carcinoma? If you haven't received a copy of the diagnosis letter, your OH can request one from the GP practice."

This is what I posted to you in February 2019; although you didn't respond at the time, did you confirm exactly what kind of prostate cancer he had been diagnosed with? If the letter says adenocarcinoma, the consultant may simply have meant that it was unusual because it had spread but with a low PSA.

The appointment system you are being puled into now is normal for Christie's - while he is still on HT, scans wouldn't tell them anything really and as Chris says, the clinical nurse specialist is probably more helpful / engaging than the oncologist and can probably give more time to each patient.

Edited by member 15 Jan 2020 at 20:34  | Reason: Not specified