Worried the cancer has spread

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Hello

i have used the site for literature up until now and found it really helpful. My name is David, I am 68 years old and was diagnosed with prostate cancer late 2021 with regional spread to seminal vesicles and lymph glands of the pelvis left and right. 

Considered regional spread Categorised by T.N.M. stage

T (local) 3b

N (nodal or regional) 1

M (metastasis) 0

Treatment Hormone therapy (Decapeptyl) immediately to mediate the cancer by quickly reducing testosterone levels and reducing PSA levels. Reduced to less than 1 within a few months.

20 sessions of radiotherapy during Spring 2022.

All seemed well until,

July 2023, PSA increased to 3.8

October 2023, PSA increased to 8.5

I was quickly sent for a Bone scan which appeared clear and a CT scan which showed no noticeable change from my last one.

A PET scan was ordered with a  focus on pelvic region. I will receive feedback  on Friday 8 December during a face to face review with Consultant. The original review was to be a telephone consultation as normally happens, the change to a face to face was made following the report from Nuclear Medicine after the PET scan.

Now really worried and anxious as to what can be done 

David

  • Hi L

    thanks for that, my psa was 153 ish on diagnosis.  Will have a look at the link now I am home

    David

  • Hi David,

    Please let us know how you get on on Friday and what your consultant says. I find it really intriguing how people are treated and what different medicines are used. I think you are possibly in a slightly similar position as my OH, his PSA was 115 at diagnosis. Also whats interesting is that you have had a PET scan whilst on HT, whereas my partner had one a few days after he had started HT and was warned that it could be too late to see if there was any metastatic spread as it would have shrunk back with HT treatment. Maybe that is only for very early micro metastatic spread. I have no real idea. I may ask that question on our next meeting.

    Hope it goes well for you Friday.

    L

  • Hi BarryW.

    I think a partial explanation on PET scanning can depend on the age of the scanner and the PSA of the patient at the time. More up to date scanners can measure 0.2mm and above but older versions are not as sensitive. For prostate cancer recurrence after a prostatectomy I think the retrospective analysis of results suggest that if the PSA goes above 1.27 then results are a lot more accurate. For those on hormone therapy the results are above 5.35? A PSMA PET scan is even more accurate and sensitive. My husband is on HT and has not had a prostatectomy but still had a PSMA PET scan earlier this year when his PSA was just over 1 and that still lit up like a Christmas tree even though he is classified as a non secreter. PET scans are not used to routinely monitor the cancer because of the increased risks caused by the radioactive markers even though they are more accurate than the MRI and CT scans. I agree that advice can be confusing. When my husband had his routine check up with the urologist and was initially told that a mass was felt he was booked in for a bone nuclear scan the next morning and told to start taking Bicalutamide straight after, not before, as it could skew the results. One good thing you can take from this is that hormone therapy starts working immediately.

  • Hi BarryW

    When my psa rose in July I had a bone scan and a ct scan which were inconclusive. The October reading went up to 8 and the PET scan was ordered which I had a couple of weeks ago. I think it was a PET/CT type which the radiologist told me was very precise like Alwayshope said. I will let you all know once I have me my team what they have found, I am expecting bad news in terms of progress of the disease as I am aware of strange achy feelings in my right pelvic area but hoping for the best. 
    I have found the care and treatment provided by the cancer team and all others at Aberdeeen to be brilliant with me and hope they are able to find a way to continue what they have been doing for me.

    David

  • Hi 
    Adele and I were seen by my cancer Doctor this morning re my psa rise and for feedback on the PET scan.
    The good news is she saw nothing that requires urgent attention but will request a CT scan to compare with the current one as she wants more detail on areas near the lungs and bowel wall. This will be organised for the new year and she will call me in again after the results are processed.
    Dr will also add an oral tablet to supplement my current prescription of hormone injections in an attempt to reduce my psa levels.
    She was of the opinion that nothing else was required at this time and will see me again in the new year. We are a bit less anxious now and will await the next review.
    Thanks for the support, will keep you updated in the new year
  • Hi David.

    Sounds like good news that you have time to sort things out. If you are being offered tablets then it is probably the second generation antiandrogens such as Abiraterone, Darolutamide, Enzalutamide or Aptalutamide. My husband was put on Enzalutamide which acted very quickly. Side effects were similar to those for Bicalutamide with the main one being fatigue so keep as fit as possible. Hopefully you can relax now until January. All the best.

  • Hi Alwayshope,

    That is interesting and still a bit confusing. We had the PETscan at the Royal Marsden so It must be tiptop as a scanner and advice. At that time his PSA was 115 as well. The consultant said it was clear of any metastatic activity. But he had been taking Bicalutamide for over a week and had been warned it could be a false reading. I still don't really understand the correlation between Pet scanning and HT. But like you say it's definitely shows how well HT works.

    Lx

  • Hi BarryW.

    If you really want the technical blurb then this is it.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465097/

    In particular section 5.3 relates to detection of the Androgen Receptors in prostate cancer. I think it is saying that hormone therapy can interfere with the way that markers bind to cancer cells but don't quote me.

    Need a strong drink now having ploughed through that lot.

    Dizzy face

    Star2

  • Oh my laws! I couldn’t read it ! But It does seem that HT will effect PET scans. Because my partner is taking HT for life we wanted him to be able to take breaks intermittently and be monitored incase it kicks off. But it’s sounding like that maybe the wrong thing to ask for. ?

    L

  • Good morning BarryW.

    It definitely gave me brain ache and I have been trained to read this kind of thing. Keep an eye on the PSA and if it starts rising then ask for an MRI or CT first but if not satisfied see if you can get a PSMA PET scan which is a lot more sensitive. Fortunately your husband is a PSA secreter so you should get some warning if things need adjusting.

    Have a good day.