Hi, this is the MRI result we got today for my husband who has been having constant pains when peeing and pains in the rectal area. Sad news, there’s 2 nodules pressing on the urethra which i think are quite big (1.04x1.07x0.77cm and 1.44x1.56x1.3cm) and 2 nodules in the perirectal and presacral regions (1cm approx each).
Since I am not familiar with the terms, the ill-defined T1W/T2W hypointense nodular focus, does that mean these are the affected lymph nodes since diagnosis or another mass/tumor? There were no new mass seen on our last petscan in November 2019 so Im worried if these are new ones?
If these are indeed the existing lymph nodes that were affected since diagnosis, is it possible to take these out? Should we biopsy and check for neuroendocrine mutation? What treatment protocols shall we consider next? Did Zytiga, Docetaxel 6 infusions, Zytiga again now along with Eligard and Xgeva.
Im getting really scared to be honest but still trying to stay strong for my husband who remained positive all throughout this journey. So, appreciate for some help and guidance please. TIA.
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No not yet, our sched is still next wk so i wanted to understand and ask here first before our consultation next wk. 😔
Would you know if these nodules can be removed? Should we biopsy for neuroendocrine mutation? Our onco isnt too keen on radiation before but is it something to consider?
Before I go for biopsy to see if it is neuroendocrine differentiation..I would do THREE blood tests (1) LDH (2) Chromogranin A (3) CEA (carcinoembronic Antigen)
Also, I will carefully read the scan to see if there is any LYTIC type bone met.
If both come abnormal..I may proceed with Biopsy. Neuroendocrine type is VERY rare..less than 1% in primary Pca and might take many years to develop after ADT in 10 to 20% cases. Look for horses in horse county and not for Zebras.
Let me add that I would first do PSMA DOTATATE Scan to know Neuro endocrine differentiation before invasive Biopsy . I think this specialised scan is available in Phillipines. It is available In India (Delhi and Mumbai) for approx $300.
Great to know .., you a dedicated wife helping your husband..Mahal Na Mahal Kita !!!
Thank you so much LearnAll for your guidance! We will do the 3blood test you mentioned but CEA for sure is within normal range based on last week’s result.
Btw, I just saw your Neuroendocrine post from a month ago and i will definitely definitely check all those items you mentioned. His pca is secreting very low PSA since stage 4 Gleason 9 diagnosis in July 2018, PSA at only 32 but extensive mets all over lymph nodes, bones (ribs, pelvis, spine) with bladder invasion and seminal vesicles. He was tested in Singapore for any mutations but only MUTYH came up and doctor there said that his PSA should be in thousands with that much amount of metastases in his body.
Btw, for the initial blood test, LDH and Chromogranin-A, should we test it from a biopsy result in 2018 or should we just get recent blood sample from husband now?
As for PSMA pet scan, i will check if that is available here.
3 tests get abnormal when there is neuroendocrine differentiation...these are Serum Lactic dehydrogenase (LDH) , Carcinoembronic antigen and Chromogranin A.
Start with LAH and CEA . Do fresh tests to see what the levels are and compare them with past levels. Are they increasing ? If yes..then we have some clue in favor of Neuroendocrine state.
PSA 32 is usually considered high for NE cancer. Its more likely 10 or below.
What is the status of other biomarkers such as ALP, Albumin, Hemoglobin, CRP
and to top of all, NLR (neutrophil Lymphocyte ratio) and PLR (platelet lymphocyte ratio)
Some regular PCa cells do not produce much PSA because they might be poorly differentiated (messed up) and these are aggressive type cancer cells and thus, likely to cause more lesions. I will consider it Plain ,vanilla PCa ,(albeit aggressive) until proven otherwise.
Maraming maraming salamat po for the guidance. We have just met with our onco today and we will do these tests and also colonoscopy this sunday to understand better the rectal pains. Our uro and onco will discuss next steps after colonoscopy result and blood tests.
Tom..when I was younger..I did not believe in luck. Now, I believe in luck 100%.
Big things in life only depends on luck. What did you do to be born in a great country...in a good family...to good parents... What did you do to have this amazing, intelligent brain..
We like to give credit to ourself but biggest things were Just given to us..
Luck and destiny is pre determined...it only unfolds with time....just like in a CD..all songs are there but we can only know the songs which havealready played .
May your next song of life be sweet and peaceful...good luck,
I chose my parents wisely Luck is a big part of outcome. I'm lucky that a new treatment has become available in the past year. I also try to make my own luck by keeping appointments and staying active.
I'm also very lucky not to have been born in the middle ages. My body type is completely wrong for hard physical labor.
The reason you made good choices is because you were blessed with good mind....did you do anything to have that good mind which can think logically, choose options wisely and communicate accurately.
If you were given a lousy mind...could you make those good choices which made you what you are . Its all bleessing ! No need to be egotistical about accomlishment as all accomplishments have been possible because of blessing of good mind.
Stay strong . He needs you now . The fear of the unknown is brutal . You will do the right thing . Everything done with love is correct on your part . There is something that can be done to help . Need to get him over treatments . One step at a time . One day at a time . Hold on to each other . Scott
Yes.Stay strong and never give in to pc . Peace to you both today !✌️whatever happens,you need to get rid of that type pain. Urological pain is a brutal beast . I’m rooting for a fix soon . 🙏🏼
My neuroendocrine cancer started with painful urination, and it grew up the back side of my bladder. The whole time it was developing my PSA was <0.01.
A biopsy of the bladder is riskier as it can cause urine to leak out, so they biopsied my liver instead. None of my blood tests were abnormal, excepting a slightly elevated and increasing LDH.
If it is neuroendocrine, it is NOT game over. It is treatable with chemo and immunotherapy, and genetic testing may open up other options. My painful urination went away with the first cycle of chemo.
Having cancer come back sucks but I'm still in the game and so is your husband. Best of luck to us all!
Hello V and D, I wish I had the answer to your questions...The only thing I can say is to repeat our invitation here. Puwede kayong tumuloy sa amin kung nais ninyong magpagamot dito.
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Luck is a big part of outcome. I'm lucky that a new treatment has become available in the past year. I also try to make my own luck by keeping appointments and staying active.
My husband Mike - love of my Life
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