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User
Posted 05 Sep 2024 at 16:33

This has been a long time in coming, having lurked for so long.


Introduction.


I am 66, married 43 years with a son who is 31 and profoundly autistic.  I was diagnosed with PCa in 2019. I am Type 2 diabetic, diagnosed in 2014 and I am in remission by diet and exercise, very low carb diet. I am a retired scientist, 20 years university research and 19 years at drug discovery company.


In the spring of 2019 I went to see my GP about an unusual urination pattern for me. My first in the morning was always done in stages, three or four separate streams. Later in the day, just a single stream. He gave me a digital examination and detected something on my prostrate. PSA and biopsies followed. Can’t remember the PSA but positive results from samples. Got the confirmation in the back of a French taxi as I was part of a transition team from work as the business was being transferred to France and I was going to be made redundant, 31-Aug-2019. Gleason 3 + 4 pT3a N0 M0.  Through July and August reviewing treatment and meeting various consultants. Decided to go for radical prostatectomy, 04-Sep-2019. I retired at 62 and became my son’s full-time carer, he is profoundly autistic.


6 monthly PSA were all undetectable until Aug of last year, 0.2. Feb-24 0.3. Appointment with consultant. PSMA PET Ct scan 30-Apr-24. Mild increased tracer uptake within posterior left seventh rib and no other abnormality elsewhere. Review, repeat CT scan later to check and another PSA. PSA 31-Aug 04. CT scan 03-Sep-24, no sign of rib abnormality.


Plan now is to repeat the PET scan with another PSA test and if the rib is still clear proceed with Hormone therapy and then radiotherapy of the prostrate bed.


 


My first consultant, who I met when first diagnosed and in June has since gone on leave. She made no mention of HT we were reviewed the plan if the rib was clear. My second consultant added the HT saying that we must have missed it with the first one. I was there with my wife as two sets of ears are better than one in these situations and she has no recollection of it being mentioned. Clearly running through a lot of threads HT appears to be standard for Salvage RT. It is probably the one part of treatment I am most concerned about because of the side effects and how my diabetes will react. Added to this I have a very large hernia, that is really slowing me down and waiting for treatment that.


I feel I have been a bit in limbo because of the uncertainty of the rib and am still waiting for the PET scan date.


Anyway, this is my first post, and I hope to return with updates and document my experiences from now.


I wish you all well.

User
Posted 05 Sep 2024 at 17:52

Hi Andrew.


It appears that you went over four years after surgery before there was a recurrence. This disease is so cruel. Like you, I was diagnosed T3a, but my Gleason was higher 9 (4+5). I had robotic surgery 18 months ago, and up to now, my PSA is undetectable. However, apparently I'm at high risk of recurrence, which I dread.


I hope that your salvage treatment is successful and wish you and your family all the best for the future.

User
Posted 05 Sep 2024 at 18:02

Thank you Adrain56.


and back to you.


My wife's cousin lost her husband to it not long ago and it really was pretty awful, so hoping for the best.


The day before I got the call about the recurrence I got a letter from the Bowl screening to say my last test was positive... had a colonoscopy, which was grueling and fortunately nothing found!!


It's all go!

User
Posted 05 Sep 2024 at 19:32

It may be worth asking for Metformin while you're on hormone therapy. There is some evidence that it reduces the recurrence of prostate cancer, and there's currently a trial running of giving it to non-diabetic prostate cancer patients, since discovering a lower recurrence rate in diabetics on Metformin than in non-diabetics or diabetics on other anti-diabetic medications. This is for radical (initial) treatments rather than salvage treatments, but whatever the mechanism, it might well apply to salvage treatments too, and it might help to control your blood glucose while on hormone therapy.

User
Posted 05 Sep 2024 at 20:26

Thank you Andy82.


Not something I have come across so will definitely have a look at. The idea of losing control of the diabetes is a serious concern at the moment.


 

User
Posted 31 Oct 2024 at 21:53

Bit slow on recent developments, Firefox does not appear to like my login so hopped over to Edge.


Had PET-CT scan earlier in the year and it showed something on a rib.


Had a CT in August, which showed nothing. Had a repeat PET-CT scan in the middle of September. Had a review meeting with consultant a week ago last Tuesday. Something on the rib was much more something. So it appear to have spread just not possible to locate with CT for a SABR treatment.


It's going to be life long Prostap injections, abiraterone and bisphosphonate.


Still not too sure what everything is and waiting for his letter to go through it again.


Off to see the dentist tomorrow, which I haven't done since before covid...


Worries. Lots, am a Type 2 diabetic and have an abnormal heart beat, which is not great for one of these treatments I understand. Fairly fit, 120/70 BP when getting bloods taken.


Sorry if this is a bit jumbled, still coming to terms with the life long bit.

User
Posted 01 Nov 2024 at 10:40

I am sorry to hear about your reoccurrence and I hope that you can soon start your new treatment plan and that it will be successful with minimum impact on your existing conditions.


If I am reading your posts correctly you went from undetectable PSA <.1 to a reading of .2 which is the cut off figure for BCR. Can I enquire whether you were having ultra sensitive PSA readings or PSA readings that read to <.1? There has been a number of discussions on this forum about the benefits of ultra sensitive PSA v standard PSA but an increase in 6 months from <.1 to .2 is a big jump and I am wondering if a trend would have emerged if you were having the ultra sensitive PSA test if indeed you were not already doing so.


Good luck at the dentist tomorrow.

User
Posted 01 Nov 2024 at 13:19

There is research into using metaformin and other drugs not usually related to cancer. David is on metformin, small dose of starins ( not for cholesterol) doxycycline and menbendazole. There is also further research into quercetin. Quite a bit of evidence about the metabolic approach to managing cancer. He’s now approaching ten yrs since diagnosis with Gleason 9 Tb3 hand currently his PSA is undetectable. He is also on life long hormone treatment ( Prostap) 


Leila 

Edited by member 01 Nov 2024 at 13:21  | Reason: Not specified

User
Posted 01 Nov 2024 at 21:18
It is interesting how there is emerging observational understanding about the benefit of metformin for a number of other conditions. It doesn't seem to be prescribed at all if you don't have type 2 diabetes (despite Andy62's recommendation from a research oncologist) unlike statins which are routinely provided to over-70s regardless of any cardiac history.

But both apparently give benefits, and for risk of dementia as well as cancer recurrence. Not sure about the benefits of quercetin specifically but eating a diet rich in polyphenols generally does seem to be beneficial.

(To be fair, good exercise levels - no prescription needed - seem to have similar benefits).
User
Posted 02 Nov 2024 at 17:50

IDK2, Leila and J.B thank you for your comments and observations.


On the PSA test I am not too sure which sensitivity it is. My results were always less than 0.2 and then last year I got 0.2 and each test after it increased by 0.1. Sitting at 0.5 at the moment. Not got the result from last Tuesday's bloods. 


I have a pretty hands on Diabetic nurse and at my last review told her about what my future was looking like. She was very supportive. I have not taken any medication for my diabetes and am not against it, always tried to keep it under control with exercise and diet. 


Dentist was good. All the teeth are sound, which was amazing as it been over 5 years...


My heart has an irregular beat so the next appointment is cardiology, 16-Nov-24 a Saturday, to understand where it is at the moment. Then a review with consultant in week before Christmas.


Next week got an appointment to have my large hernia looked at.


It's certainly all go.


I hope you and yours are well.


Thank you.

 
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