What to expect now?

Good Morning Indykid 

A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here. I am Brian one of the Community Champions here at Macmillan. I am in my 4th year of my personal Prostate Cancer journey.

You are correct in the fact that after Radiotherapy your PSA should reach it's nadir or lowest reading about 18 months after the treatment. The Hormone Therapy is working as it's dropped your PSA down from 15 to 2 and after RT it should still be dropping. I assume that your radiotherapy was to both the Prostate and Your Pelvic Lymph Nodes?

I would have thought you would stick with oncology now and your treatment would be on their advice (but all hospital trusts are different). The normal progression I would have thought would be HT for 3 years to be overseen by oncology with either 3 or 6 monthly PSA tests.

I hope this helps. Feel free to ask any questions - the above is of course my personal opinion and not Macmillan advice.

Best wishes - Brian.

Good morning Brian, thanks for your helpful and speedy response. Yes RT was split between prostate and pelvic lymphs. I also assumed I would stay under care of oncology but perhaps as you say just a different approach (North East England). I have a tel appt with Urology tomorrow and my first appt post RT with oncology in a couple of weeks, also by tel so I guess I will know more soon anyway. 

Hi Indykid I was same staging as you 7 years ago. Feel free to ask any questions you want.  Best wishes, David 

Good Morning Indykid 

It sounds like my journey there, let's blast the pelvic lymph nodes and hope the HT does it's stuff. I am still under oncology (The Christie Manchester) and on 6 monthly PSA's for life.

Please do keep us posted as it's interesting to see the different ways each Health Authority deal with the ongoing care. I wish you well.

Best wishes - Brian.

Thanks, I will post an update in a couple of weeks when I have a bit more clarity myself.

I have a family member who is under care of the Christie. They are doing a fantastic job with him so you are undoubtedly in very good hands!

Thanks David. What was your Gleason score? The urologist I first saw was actually quite pessimistic because of my Gleason being 10 I thought. They suggested that even though they couldn't see any mets yet, didn't mean they weren't there ... Oncologist was much more positive. 

Good morning Indykid . To add to Brian's great post, the rate at which the PSA drops as well as the level to which it drops both add in to the equation of whether you are likely to have a recurrence. The drop from 15 to 2 on the Zoladex in 2/3 months is a good indicator that the cancer is sensitive to the hormone treatment. Now that you have had radiotherapy then this should bring the PSA down further and ideally to a negligible level in 6/9 months from the start of treatment, however, don't panic if the decline is slower or you don't achieve this provided the PSA continues to decline or remains stable. They don't normally do a PSA until at least 6 weeks after finishing the radiotherapy because there is still a lot of debris floating around in the blood which can skew results. It then takes 18+ months to continue to clear the dead cancer cells from the body. There are some hormone therapies which, when added to things like the Zoladex, can produce very low PSA levels very quickly simply because they work slightly  differently so there is not a one size fits all in what to expect. Now that you have had radical treatment the PSA is a good indicator for monitoring in the future. I would certainly want to see a blood test 3 months after completing the radiotherapy and then every 3 to 6 months after that. There is also a phenomenon called the PSA bounce which can occur around 12 to 18 months which is a small rise for a short time so be aware of it but don't stress provided it goes back down again or remains stable. Finally when you come off HT your testosterone levels will start to normalise and this can cause the PSA to rise a little but the number to keep in mind is that the PSA should remain below 2 after radiotherapy.

Thanks Alwayshope. Yeah my next PSA (on Wednesday) will be around 6 weeks post RT. Not really sure what to expect number wise but your post is really helpful. The urologist I saw said HT for life and oncologist said for 3 years. I really struggled with first HT treatment. Felt absolutely dreadful for weeks and had all kinds of shooting pains in my pelvic area. Second one was better apart from massive blood bruise which covered half my abdomen! I understood they would want the PSA to be as close to 0.0 as possible as soon as possible as any PSA is potentially a "fuel". Are you suggesting a PSA of 2.0 might be ok going forward? Apologies if I have misunderstood.

Hi Indykid, and a warm welcome from me, a fellow Gleason 10 with lymph node involvement, as well as 4/5 organs, all now NED, bar 1 lymph node, which will be zapped soon, will know more after tomorrow's MDT meeting, there's new evidence that suggests a slightly slower fall in your PSA, is mirrored by a subsequent slow rise, if/when it should ever rise.

Bloods/PSA checks are overseen by urology, though you can ask for them to be done at your GPs, and you should still see your oncologist regularly.

Eddie 

Many men don't achieve a negligible PSA after radiotherapy because you still have a prostate even though it has been zapped, and it can grow after a while. Whether you are likely to have a recurrence or a progression is influenced by many factors such as initial PSA, TNM, histology, age, initial radical treatment but with radiotherapy it is ideal to get it as low as possible and if possible below 0.2 as this is one of the indicators of whether you may need further treatment at some stage. A recurrence is defined as 3 consecutive rises in PSA in a short period of time or an increase of 2 above your lowest level (nadir). It is not unusual to have different opinions on the length of time you will be on HT but some of the latest thinking is that if you can achieve a negligible PSA in a short period and maintain it there for at least 18 months then coming off it (intermittent hormone therapy) prolongs the time that HT continues to work. If you are on continuous HT then the cancer can find a way round it eventually. An initial increase in pain is caused by your body getting used to the drop in testosterone levels but usually settles down particularly if you exercise. Some men do get a bruise with the injection but a blood bruise is unusual - report it before your next one and check how experienced the nurse is in doing the injection.

Let us know what your PSA is but I would expect it to drop well below 2 at this stage.