Ductal Adeno Carcinoma

Thanks Steve, yes PSA still <0.1 so very happy with that. PS I don’t eat Frosties lol, too much sugar as you say. Hope you’re doing well.

Hi Happypixel,

sadly my husband was admitted with severe abdominal pain last weekend and found to have extensive spread of disease. PSA <0.1..!!! 
We are shocked, heartbroken and devastated. Liver too! 
I hate to tell you this news but I had to. Ductal adenocarcinoma is cruelest of all. We were ignored for months with breathlessness and right sided pain. I have countless emails to oncologist showing my concerns about the extent of pain but low PSA.. I felt like we were ignored. Be vigilant!

sending you much love,

louli xx

Oh Louli, that’s the worst news. I’m so sorry to hear that. The frustration must be terrible, as well as the worry for your husband. My thoughts are with you and I really really hope they can treat him now. It sounds like they really have no idea how to spot this disease - my PSA is also 0.1 following RP, so your note is sobering. 
my thoughts are with you both. Do let me know how you get on.

Louli, so sorry to hear this. It’s a vile disease and these rarer types seem much more aggressive. Sending love to you all.

Hi HappyPixel,

Hope you are recovering well from your surgery. We often forget to acknowledge our partners and family who suffer along with us. 

I suggest that you request your Pathology report post operation, if you haven't already. My pathology report was detailed with a summary at the end. The summary showed the following:

• Prostatic Adenocarcinoma, Gleason score 4+4=8 with Ductal component of approximately 30%
• Lymphovascular Invasion,
• Intraductal Carcinoma present, and
• Extraprostatic extension present

Three months after the procedure my PSA dropped, but by month six it was at 0.16 which was still pretty low. Fortunately my surgeon acted swiftly and I then had radiation and Hormonal Therapy (6 months) a month later. Glad to say that the side effects from HT has now subsided. 

I have a consult with my oncologist next week to discuss DNA mapping to track down the rouge genes and hopefully be more pro-active. 

All of the best 

Dutchie

Hi Dutchie

 Thanks for this. I think have have most of that information through letters my surgeon has sent to my GP. 
After hearing from Louli yesterday, I must say I’ve been feeling pretty low. This thing is so horrible and they had raised their concerns with the oncologist. Just hope that it’s not too late for them and something can be done. 

So your message is really welcome. It’s so good to hear from someone with DAC who is making progress. Please do let me know how it goes with the DNA.

 I’ll be sure to get my oncologist to explain any changes. My PSA after 6 weeks was 0.11. I’m hoping it’s lower when I have my 3 month test, but I don’t know if PSA is much use s as an indicator for us anyway. 

thanks again

 Paul

Hi HappyPixel,

Paul, I understand exactly how you feel, we are only human. I try and appreciate every day and work at doing things that are important to my family and myself. I take time out to laugh, walk, swim, have dinners and talk Sh... with my closest friends and travel.

The best thing we can do is be proactive, research how to beat trends and discuss solutions with our medical teams. I am more than happy to keep you informed with my findings and the advice from my medical team. Australian Oncologists and Surgeons may see things differently to the UK team, it will allow us to share our learnings with the view of beating this. I know we can beat this.

I spoke to a friend (52 year old) this morning who was diagnosed with stage 4 Small Cell Carcinoma of the Prostate three years ago. This is also a very rare cancer strain and quite aggressive. They could not operate on him, the cancer had already spread to his bones with some shadows on his lungs. Mike had radiation, Hormonal Therapy and extensive Chemo over the last three years. Some of these worked for a period but not for long, things did not look good at the end of last year for him. A bit of a roller coaster ride. He had DNA mapping done and qualified for an Immuno Therapy trial. Apparently there are only 3 patients on this trial in Australia. He has turned the corner and his cancer is responding really well. He is looking really healthy and his medical team is over the moon with his results. The reason why I am sharing this is that there is always someone worse off and there is always hope and a solution. Remember, We are in control, cancer is Not.

We can find a solution and beat this.

Chin up, today is a good day!

Dutchie

Hi Dutchie

Your words are very welcome. It was 12 weeks since my RP earlier this week, and although the physical recovery is going well, the outlook and how we cope with it all mentally is undiscovered country for me. 
My wife caught Covid earlier this week - which I’ve managed to avoid, thankfully … although sometimes what you really need is just a hug from the most important person in the world to you. It’s tough knowing they are going through the mill as much as you, but they don’t get the sympathy / empathy. 

Despite all this, I’m still trying to keep positive and doing things that make me happy. As you say, you never know what’s around the corner … Good or bad … so we need to make the most of today. 

I have a PSA Tests and Oncology appointment later this month - I’ll let you know how it goes. I wish I had your optimism, but deep down I think I feel the cancer will do whatever it wants. What I can do is keep on top of it, and not let it get so far ahead we can’t catch up with it. I dunno about beating it, but I’m not going down quietly. 

Anyway, as a very astute friend advised me:

• today I am not going to be angry. 
  
  
• today I am not going to be sad. 
  
  

Thanks again for your note. These do help, and what amazing news about your friend. There is hope for us all…

Paul

Hi Paul,

I am so sorry our sad news was painful. I really am and although that was a risk with my post I had to do it. If I had the last 18months to go through again I would have asked why chemotherapy isn’t offered to healthy over 70s especially with ductaladenocarcinoma from the outset. 

biopsy on Tuesday if he is fit to see if it is prostate spread or something new. It’s all too late with a prognosis of weeks to two months.

Dexamethasone has been wonderfull in reducing pain, inflammation, fatigue and increasing appetite 

Be vigilant and assume it’s there but keep trying to find it. It will drive you mad but you honestly need to do it.

love to all from Louli xx

Hi Paul,

I have received information regarding DNA testing, but still need to discuss it with my Oncologist next week to determine if we should move forward with this. 

This is an extract from a long email I can forward to you. The pricing is in AUD.

Focused Treatment Panel - $3,500
This assay is a multiple-biomarker, next-generation sequencing (NGS)-based assay, that has been adopted by leading cancer institutions around the world. To perform this test, we require tissue that has been excised from your most recent biopsy. The aim of this test is to provide information for your health care professional to help tailor treatment to your specific needs as well as identify access to clinical trials, and it will provide you with the genetic characteristics of the tumour which can then be matched with specific medication that may help to increase the likelihood of disease-free progression. This also gives an indication of tumour mutational burden (TMB) and homologous recombination deficiency (HRD), all of which are important emerging biomarkers in predicting your likely response to immune checkpoint inhibitors, should you be considering immunotherapy options. The Focused Treatment Panel will only include Australian clinician trials and on-label medication. It will also only include therapeutic options with a level of evidence from I-III, which means that the therapeutic agent has progressed past animal studies into human trials or approval.

Expanded Treatment Panel - $5,600
The Expanded Treatment Panel is a larger version of the Focused Treatment Panel. It sequences the same genes but includes additional information and analyses for clinical utility both in Australia and Overseas. In addition to the above, the Expanded test includes both Australian and International clinical trials, off-label medication options that are undergoing trial and validation, COSMIC analysis of the gene variants and an expanded therapeutic options section, to include more levels of evidence and therapeutic agents that may not yet be in human trials.

Comprehensive Treatment Panel - $8,200
This assay is a combination of our Expanded Treatment Panel and Transcriptome Sequencing and provides a complete molecular profile of the tumour. In addition to the above Expanded Treatment Panel information, Transcriptome sequencing may provide information regarding gene expression changes within the tumour profile. Transcriptome profiling can measure the activity of thousands of genes at once, that can enable us to create an overall picture of cellular function. For example, we may be able to detect cells that are actively dividing and driving the cancer or show how they are going to respond to a particular treatment. Gene expression profiles help assess the functional status of critical pathways. Sequencing can indicate up or down regulation of RNA pathways within the tumour, helping highlight additional medication targets and pathways, when used in conjunction with DNA sequencing. This testing can also provide information on Vitamin C and CBD pathways as well. The Comprehensive Treatment Panel is particularly beneficial for metastatic cancer, to provide the most treatment options possible. For Triple Negative Breast Cancer and Pancreatic Cancer, this testing also provides the molecular subtype of the cancer, to further clarify diagnosis and inform likely responsiveness to chemotherapy.

I will keep you informed, I have a consultation with their practice Manager next week to discuss after I had my meeting with my Oncologist.

Kind Regards

Dutchie