Ductal Adeno Carcinoma

Hi Sylvo 

Sorry to hear about the DAC. as you will see from this thread, Munster & I both have DAC. He is also in Australia, I’m in the UK. 
i had Gleason 9 also and started RT 8 months after my RP, due to increasing PSA. I have 3/37 to go and will be glad when it’s over. 

As you will know, DAC doesn’t present itself in PSA so although they could see mine on a PET scan, my PSA was actually still quite low. 

tbh, I’m not sure what will happen after my RT - as I don’t know what they will look for. They won’t want to do another PET scan - as those involve a high dosage of radiation, and what with the x-rays and RT I’m already starting to glow in the dark. 

Do you know the percentage DAC they found? That might be significant. Please do stay in touch, we are a very select group!

Hi Sylvia,

I have seen Happypixel’s response to you. He is almost through his Radiation and hopefully got it under control.

I am on the Gold Coast, more than happy to have a coffee and have a chat if you are by any chance close. As Happypixel said, we are part of a very small group having DAC. Do you have pure DAC or mixed DAC? Do you have your pathology report post your operation? 

I had my procedure in January 2022 and since then a few more treatments. Have a look at Happypixel and my profile, it seems like we are further down the road.

All of the best, you are not alone!

Cheers

Munster

I thought I would join in this thread as my husband also has a rare aggressive type of PCa that has metastasized to the pancreatic region but is also non secreting PSA. It was confirmed by a fine needle biopsy via endoscopy. The prognosis is poor and there is no recommended treatment path because it is so rare, so very much trial and error. He had been on active surveillance since 2010 with annual blood and CT or MRI scans. Things rapidly escalated in July 2020 to T4 with lymph node involvement and a secondary mass behind the pancreas. Hormone therapy started immediately, rapidly following by EBRT to the prostate region (surgery was not an option). Since then he has had Bicalutamide stopped and Enzalutamide added in which kept everything under control until July 2023 when he had 6 rounds of Docetaxel. The primary mass had escaped the capsule and constriction of the ureters resulted in some loss of kidney function so his 3 monthly MRI scans to the upper and lower abdomen are done without contrast, as is the occasional chest CT scan to check for any further spread.

It is essential that anyone who has PCa which is non secreting PSA has it monitored regularly by scans if they are on a non curative pathway as this is the only way to check whether there is any spread.

My husband's initial prognosis was maybe 6 months. That was 40 months ago. He is feeling good at the moment and we have a good quality of life, enjoying every day as it is a bonus. A positive attitude is essential and we have made the recommended changes to diet and lifestyle. We have confounded the experts so far and will continue to do so for as long as possible. We have an excellent medical team who have said that there are still more options further down the line when necessary even though my husband is now 80. They are not giving up provided we don't.

The take away from this is do your part with lifestyle changes and positive attitude but make sure that you are monitored very regularly as things can change very quickly so quick action is needed.

All the best to everyone but especially those with the rarer forms who have additional challenges.

Thank you both so much for your replies.

Munster we are at Lennox Head- not far from you at all.

My husband may be interested in meeting for a coffee but possibly not until after his next pet scan in Feb.

would love to keep in touch 

Hi Alwayshope,

So sorry to hear about your husband’s condition. It sounds like your husband has a fight on his hands. Having a positive mindset makes such a difference. 

How are you coping, I know it is a massive weight on our partners.

All of the best and thank you for the insight.

Dutchie

Morning Dutchie.

I am coping OK thanks but like everyone I have had my wobbles. I have been my husband's carer since 1997 when he had a stroke, heart attack and then develop PTSD as a result of his forces service so I am used to dealing with everything since then. I am a naturally glass half full type of person and both my husband and I have a wacky sense of humour which definitely helps. For his health we moved permanently to Greece in 2006 and it is the best thing we ever did for our personal quality of life.

Hello Munster 

Just to let you know that it's against Community Guidelines to put your personal telephone number in a public post.

To make a personal contact with another Community member - will you please use the personal message system. It's just a personal safety thing and to avoid identification.

Best wishes - Brian.

Understand thanks