T3N1M1B // 4+5

I have just put a reply up on your other thread.

Hi DJBF 

I am just another fellow PC bloke who is 3 years down the track. I was diagnosed at 57 and going strong, albeit that I am still not cured having stage 4 PC. I had a Prostatectomy, Salvage Radiation, Hormonal Treatment and recently Radiation to my spine.

I understand that it is really early days for you and must be all consuming and confronting. There is plenty of hope, you will get through this, stay strong and ask plenty of questions. It is something that I had to come to terms with and still occasionally have to deal with.

How many spots have they discovered outside of your prostate, seems like 1? If it is just 1 spot they have found, did you have a PSMA PET scan, it would be defined as Oligometastatic Disease. It is important to know if it is distant or local. Synchronous Oligometastatic Disease is curable. What else did your pathology report say.

Stay on this platform, you have access to highly knowledgeable people who can help you understand the road ahead.

All of the best

Hi Munstar

Just reading your reply above and you offer a great deal of hope and advice. May I ask please what do ypu mean when referring to synchronous oligometastatic disease?

my OH was simply told incurable oligometastatic (1 lesion to T5 & a very small spot on 7th rib defined all as ‘suspicions’ onPSMA scan so not even clear).

they offered chemo,HT&RT to prostate. I know evidence suggests primary removal and also that triple therapy offers better outcomes but despite numerous requests these have all been denied to him.

I appreciate I’m hopping on Djbf’s post and apologies if not allowed but tbh am going through that desperate for hope stage which fluctuates on a daily basis.

Sending Best Wishes to all here and thank you x

Hi Hanandy 

Please note that I am not a Dr or medically trained, but have and continue to research clinical papers to ensure I know what to ask when I meet my Oncologist.

There are a fair amount of clinical papers the types of Oligometastatic disease. Oligometastatic lesions may be observed coincident with the untreated primary tumor (synchronous or de novo). Oligo = few, it appears that they describe OMD where the patient has less that 5 metastases. Not sure about the volume of each. Here are some interesting papers I have found. 

The following paper has an interesting picture of where Oligometastatic disease sit in the journey:   

http://www.urotoday.com/library-resources/advanced-prostate-cancer/114375-oligometastatic-prostate-cancer-treatment-of-the-primary-tumor-and-metastasis-directed-therapy.html

The next article looks at OMD from the Oncologist’s perspective, as you can see it is a contentious subject - my Oncologist and I believe that I can still potentially be cured:

https://pmc.ncbi.nlm.nih.gov/articles/PMC10130609/pdf/main.pdf

There is hope as I see it.

All of the best.

Munster

Hi Hanandy 

Take a look at my profile, I have been documenting my journey. I forgot to mention that I had two tumours on my spine. One on the C5 and the other on T4. I had SBRT two months ago and feeling good. Make no mistake, I have my off days every now and then. 

Kind Regards 

Munster

Thank you so much- I’ll have a read of these. Appreciate you sharing the links x

Thanks for this Munster. I hadn't seen the urology today article but it makes sense with my husband's unconventional treatment that he has been given in Greece. He was also T4 with de Novo oligometastatic disease to a distant viscera, diagnosed in 2020, but was given total pelvic radiotherapy at the start of his treatment in order to deal with the 'mothership'. This, along with the HT put the distant visceral met into hibernation for a while but this has now been dealt with by SBRT in April as hubbies type of prostate cancer appears to be particularly radiosensitive and speaking to the radio oncologist last Friday this is definitely working at the moment.

To add on to your excellent post can I point you in the direction of a video if you haven't already seen it.

https://youtu.be/-RVVq0uDAEE?si=P3sF_Pe0k_IqaZnI

Hello Munster,

thanks for your reply on this.

I've not had a PSMA PET scan.

I  had started with 2x colonoscopy's 1x endoscopy, x-ray of my lower spin and blood work as my original compliment to my GP was coccyx pain when sitting, GP was unable to complete a PE.

These resulted in nothing other than polyps - which were removed on the second colonoscopy..

Returned to my GP still in pain who did blood that day for PSA and came back with a PSA of 5.35 - and started me on antibiotics as tho inflamed and referred for MRI.

MRI showed a tumour and an increase of size and Urology referred for CT, Bone and Biopsy.

The Biopsy doctor saw my scans and immediately started HRT, - i did wonder if this should have already been done and i was asigned a keyworker - he was the first person to call this what it was and saying as the lymph nodes were lit up it was no longer localised.

Once all the results were done I saw the consultant who gave me the diagnosis, discharged from urology and referred to oncology with was 27th Sept, and I see them on 29th Oct ( this coming tuesday ).

The consultant told me i was "ahead" as far as treatment goes having already started HRT and the nurse there gave me a 6 month injection. He was also surprised that the pain hadnt lessoned ( in fact it was worse ) and couldnt explain to me how i can present at a PSA of 5.35 with advanced cancer.

I did ask for a Pradict to be run so I could have some time indication but its not possible for metastatic.

I would be interested to hear others experiences who may have walked a similar path. 

Hi DJBF 

I have over the last 3 years discovered how little I really know and how much more complicated and unique this disease is.

My PSA was also around the 5 mark. Not all variants of this disease omit high PSA though. Doubling time is an indicator of the aggressiveness of your cancer. If for example your cancer doubles within 6 months it may be more aggressive than if it double every 12 months.

The majority of men will be diagnosed with Acinar Adenocarcinoma (+/- 97%), or Mixed Ductal Adenocarcinoma (+/- 2.3%) or Ductal Adenocarcinoma (+/- 0.7). There are then some rare variants that I will not list. Mixed DAC and DAC may be less sensitive to PSA scores and can spread in to visceral organs as well as bones whereas AA is most likely to metastasise in Bones and a lot more PSA sensitive. I recommend that you ask you Oncologist or Urologist to tell you what variant you have as they behave differently.

Starting on HRT was a good thing as it will slow down the progress, allowing your medical team to develop a plan. I have learnt that this is a constant waiting game for results and that you cannot worry about those things out of your control. Focus on the things in your control, like exercise, sleep, eat well and occupy your mind with positive thoughts.

Hope this makes sense.

All of the best

Munster

Hello DJBF .

My husband had a low initial PSA but has advanced metastatic prostate cancer to a distant visceral organ and lymph nodes. As I said earlier he was diagnosed in July 2020 and is still going strong now. From our experience the PSA is not such a good marker (but is of some value in that we use smaller changes to indicate progression) so hubby has regular MRI's to monitor the stability of the cancer. As Munster has said, there are different types of prostate cancer which can behave in different ways to treatment so on Tuesday you need to find out which variant you have. Visceral mets like my husband's are not as hormone sensitive as most men's cancer so he has never been able to achieve a negligible PSA following HT treatment. Similarly chemotherapy did not achieve the full killing of the cancer. His cancer does seem to be particularly radiosensitive. He had EBRT to the pelvic region in 2020 to kill off the 'mothership' and this remains successful in that area. In April this year he had targeted radiotherapy to the visceral met, distant lymph nodes and new lesions which had developed on the adrenal glands and, talking to the radio oncologist last Friday, this is working very well. The oncologists say it is very difficult to give a prognosis because they don't know how the cancer is going to react to treatment or how well the patient is able to tolerate it - in their words, they can do 50%, the other 50% is down to us in terms of having a positive attitude along with lifestyle changes to diet and keeping as physically strong as possible. 

As for the future, there are more tools in the toolbox if necessary and we are awaiting the results of genetic testing to see which ones might be the most appropriate.

We live in Greece so things are done a little differently to the UK and we have easier access to scans, plus the speed of treatment and results, so if you read my profile please bear this in mind.