I wonder anybody else has experienced what's now happening with me.
Prostatectomy in 2012 Gleason 4 + 3 T2b, N0, M0, Cells close to margin bit not definitely positive.
PSA undetectable until 12 months.
PSA rising since e.g. 0.06 mid 2015 0.12 in Aug 2020, i.e. tsken 5 years to double.
CT scsns, bone scan and MRI Aug 2019 showed no recurrence in prostate bed, N0, M0, but kidney lesion found - Possible unrelated growth. PSA 0.1
Repeat interval CT scan Aug - kidney lesion disappeared. Lymph node found near aorta and left subclavicular.
Urologist say these nodes are prostate recurrence.
Oncologist doesn't agree + awaiting urgent biopsy of subclavicular node.
Has anybody else had lymph node recurrence of prostate cancer with a slow rising PSA still below 0.2 after 8 years post prostatectomy.
This must be nearly a one off Urboros, psa rising to under .2 in eight years.
Possibly one cancer cell remaining replicating once a year.
Sounds like the oncologist feels it's not related to PC, in other words a different cancer but then that wouldn't explain the psa rise albeit slowly.
Wait for the biopsy, if there r some rogue cells in the node (s) hopefully some RT will finish it off.
I don't know whats worst.
Last year I had scans for recurrence, none detected. However they found a possible growth in my right kidney. Unrelated They wanted a repeat scan after a year, (last month).
In the meantime, I persuaded the urologist to refer me to an oncologist about prostate follow up. They did. I had an appointment with her in May and another was arrsnged for yesterday, 7th Sept.
Had repeat scan on 3rd August. Possible growth in kidney had disappeared. However urologist phoned me to say the scan found a node, which he said was pelvic. I needed another scan.
I asked why are you calling me, I'm under the oncologist. She's on holiday!
Had repeat scan on 23rd Aug. On 4th Sept received an appointment letter with urologist on 9th Sept. I rang up appoinments to ask why I'd been given this appointment. I was told my scan results were to be taken to the urology MDT meeting, not the oncology one, they're different!
In my appointment with oncologist yesterday, I was told I have an abdominal lymph noe and a sub clavicular node (neck). She said that the (urology) MDT decided this was recurrence and I should start hormone therapy. Luckily she found this out and doesn't sgree because it's taken five years to double my PSA is still below 0.2. Hence she's requested the biopsy.
This might sound like good news, but it.might mean that as well the still lurking (slow growing) prostate cells, I also have lymphoma.
Please excuse my ranting on. I was discharged by urology when my PSA was 0.06 and told to come back if and when it reached 0.15. If I hadn't insisted on going back when it reached 0.1, I wouldn't have had sny of these scans.
This trusts urology department are under external investigation for their mistakes abd cover ups over the last few years and it's quite scary that they appear incompetent.
They do get things wrong, I can vouch for that.
Hopefully it's not Lymphoma, although it is treatable/curable.
Have u had a check of the symptoms online to see if u match any?
I would have thought that as there is a small, or very small rise in psa that might mean there is a recurrence albeit , slow growing , hope that u don't have to wait too long for biopsy to find out.
Hi Uroboros, sorry to hear your dealing with this. My understanding is that if PSA starts to rise slowly, as in your case, it usually points to a local recurrence in the prostate bed. As usual there will be exceptions. It sounds like getting the biopsy will give you a definitive answer which will be very helpful. Were the scans you had mpMRI? Hopefully you don’t have much longer to wait for biopsy.
First of all, I think you should keep your calm. The official recurrance level is 0.2 ng/ml and considering your very long doubling time, you should not sweat about it.
Can they make a biopsy before reaching the official reccurance level of 0.2 ng/ml ?
On the other hand, the cancer cells producing a PSA level of 0.1 ng/ml must be very small and hard to catch on a biopsy. Wouldn't it? What is the accuracy level of an image guided biopsy on PSA level of 0.1 ng/ml ?
I think you should ask these questions to yourself and to your doctor.
I have in fact been feeling a little less energy than usual for most of this year.
The last few weeks (noteably since the urologist told me of the lymph node) I have had unremitting fatigue. Can barely do anything without feeling I want to lie down. Unrelieved by sleep. Appetite totatlly went at first, but recovering a little now. Apparently this is a symptom of lymphoma, but as I have no other signficant signs or symptoms wouldn't expect it to be so severe so quickly. A bit sweaty at night, lost a little weight this year, bnut otherwise nothing.
Blood tests for anaemias, diabetes, kidney function, liver function and thyrodi function all normal. So can't explain this fatigue.
Yes hopefully won't have to wait for too long for biopsy, but also hope it's conclusive, otherwise will need a biopsy of the abdominal node, general anaesthetic etc. I belive for invasive procedures you have to self-isolate for 2 weeks beforeand 2 weeks after!
Yes I had believed that the slow rising PSA suggested a recurrence in the prostate bed. Prior to the latest CT scan, the oncologist's plan was if PSA rises 3 times then a PSMA then RT to the prostate bed.
My understanding of all the scans I had last year was none of them can detect anything under 5mm in size. It was an mpMRI, bone scan. whole body CT scan with contrast, CT scan of kidney (wrong one) and a CT scan kidney with contrast (right one).
I've also read that small recurrences aren't really detectable until PSA is 0.2
Interesting experience in some ways last year since after all those scans I was informed of the results by letter only. The letter simply said I had some scarring in my kidney which might be a growth, needed a re-scan of this in 12 months and I would be given an appointment with urology in six months.
That was all.
It didn't seem to occur to them that anybody would want to be told "there is no sign of any recurrence". I had to request copies of all the scan reports to find that out.
I am still pursuing my complaint in relation to that!
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