When we realized what exactly G9 meant, we were scared. That was 11 years ago, and were still fighting this beast!!! Danny's first recurrence was 5 years after surgery, in the prostate uretera which...
Fantastic news!!!...
Glen, I watched my Father die of lung cancer in 8 months, I watched my Mother live in a wheelchair paralyzed for 19 years because of a stroke, I watched my Grandmother go blind in the last 5-10 years...
Hi Glen, He was put on Lupon before starting chemo to get testosterone level down, because ductal prostate cancer really thrives on the hormone. Even though there was a lot of cancer in the area,...
Hey Michael, While he was taking chemo, he was on Lupron. When he had the cystoprostatectomy in 2013, his testicles were removed as well. That way we didn't have to worry about testosterone ebbs and...
****UPDATE*** Our radiation oncologist looked at scans, and at first was a little leery about radiating that spot. So we headed to MD Anderson at the end of October to do a simulation to make sure...
Thanks guys. It has been a battle from day one, but neither of us were ready for the wait and die approach. I have not heard of Pluvicto treatment...will definitely look into it. We absolutely LOVED...
It's been a while since I've posted, but we're still fighting this ugly beast. Danny had his first recurrance in 2018 which we threw 5 weeks of radiation at it in the urethra. Then it decided to...
Mike, Yes, bladder cancer and prostate cancer are treated differently. When we found out that Danny's bladder had to removed, we were able to get a lot of information on bladder cancer forums as well...
Mike, We go to MDA in Houston. We are both convinced that if we had stayed at Duke, Danny would not be with us today....
My husband has had 3 small spots radiated on his spine...sacrum, second anterior rib, and most recently the L1. Our approach has been to get rid of these small spots before they become larger or...
Hi Mike, When my husband was first diagnosed, we weren't sure if it was bladder caner or prostate cancer. Biopsy results were ductal prostate cancer that spread to the bladder. We were not happy with...
Sorry that I haven't posted in a while....Danny has had some reoccurrences after being cancer free for 5 years. In 2018, a tumor was found in his penile urethra and went thru 25 rounds of radiation...
Spot on rib was not cancer. Going to do 3 radiation treatments for place on sacrum bone. We feel very blessed that it is just one spot and not multiple ones. He tolerated the 25 treatments this...
Latest bone scan showed a spot in Danny's sacrum and something questionable in one of his ribs. Biopsy of sacrum said it is cancer....still waiting on final pathology to see what we're dealing with....
P34, thank you for the prayers. That is what we can use the most of. We truly do believe that the power of prayer is a gotten us this far. InTheShop and RobLee, the diarrhea and bloating he has now...
After 5 years of no cancer present, stupid beast showed up in urethra...this time it's only 4+4. Because of complications from paranormal hernia and kidney removal last year, radiation oncologist is...
Still at MD Anderson, trying to figure out what to do. Referred to radiation oncology, who are waiting on surgery notes and slides from local urologist. The MRI and CT were inconclusive about where...
After 5 years of no signs of cancer, our local urologist did a biopsy of poloyp in what's left of Danny's urethra...Pathology from a TUR of the urethra lesion and biopsy at the base or anastomotic...
Well, after 5 years of being cancer free, this stupid beast has reared it's ugly head. Danny had a biopsy of a poloyp/lesion whatever you want to call it. It was in what is left of the urethra....
We just got back from out checkup at MD Anderson, and Danny is still CANCER FREE!!!!!! It is hard for us to believe this considering where we were 5 short years ago. So all you Gleason 9ers, don't...
We're in western NC, but went to Duke after our local doctor diagnosed my husband with either prostate or bladder cancer...there were many tumors in alot of areas. We were not happy at all with our...
Hi Hilander, We are talking about Ductal. They gave Danny a Gleason of 4+4 at Duke. MD Anderson rescored it to 4+5...So we always had a Gleason score. Danny had biopsies taken from prostate, bladder,...
Dr Shu-Ming Tu is our oncologist at MD Anderson. I don't know how many patients he's treated, but he is one of the few doctors in US that we were able to find that has treated ductual. We believed in...
Hi Firemana, The first hospital we went to wanted to do chemo then surgery, and possibly radiation. They were treating it like regular prostate cancer. The surgeon that did biospy thought it was...
Hi Firmana, Welcome to our little family, but sorry about your father's diagnoses. As you are realizing, finding ductal prostate cancer info is very frustrating. Danny's cancer had already spread to...
Hi Hope, The days and weeks after diagnosis is probably the worst part of this journey. My husband was is also a member of the G9 club, with a twist...his is a rare form called ductal prostate...
Hey David, if you decide to go, you might want to double check that non stop from GSP. We've been having a hard time getting nonstop from Greenville to NO or Houston. If there is one, it's like...
We credit MD Anderson in saying my husband's life. Duke is a lot closer for us, but they didn't have a single clue what to do with Danny's cancer. In fact, the radiation oncologist called Danny at...
My husband had ductal as well. Because it doesn't increase PSA like regular cancer, it is very difficult to know you have it until it's advanced. And normal prostate biopsy doesn't not catch it; in...
My husband was diagnosed 3 years ago with ductual prostate cancer. It spread to his bladder, urethra, ureters, and several lymph nodes. With chemo and surgery, he is still cancer free. There is not a...
Hey Bill, Glad you have been doing well, and that you found doctors and facility that you are comfortable with, and are willing to discuss issues. We are lucky as well that we really like our...
Hi Bill, Was wondering how you've been doing? 2015 was a rough year for us. Fortunatley, Danny's still cancer free. But he's been in the hospital 3 times this year for serious gastro and/or urine...
According to report these lymph nodes....retroperitioneal lymph nodes in the region of the left renal hilum. Yes, 12 lymph nodes removed on right side, none came back positive for cancer. Not sure...
Hi all, 2015 has been a pretty crappy year so far, litteraly. Thankfully, Danny's cancer still is at bay; however, he's been battling serious diarrhea since Nov. Part of the problem was C Diff which...
Danny got one last year(his first ever), and was sick for 3 months because of it. The ER(yes, he felt so bad that we ended up in the emergency room) said that because his immune system was...
I cannot believe that you were told that. Wait, let me take that back, we've been told some pretty stupid wrong stuff from nurses also, so I'm kinda not surprised. Looks like yours is confined and...
Up date on my husband. All recent scans showed all clear once again. When we first found out how aggressive and serous this was, the outlook was not good. But here we are, 18 months after surgery and...
Thanks everybody, we appreciate the good wishes....
Thanks alot. We are truly blessed with such good news!...
Danny had another great check up....still cancer free!!! Still having issues with the ureters closing, but not enough to have stents put back in, which made is day. CT Scan did see a mass on his...
Hi Willk, That is great news that your margins and lymph nodes are clear. Sounds like it was caught relatively early? Danny's wasn't caught until it had spread to the bladder, lymph nodes and...
Hi Hopeful, As the wife of someone diagnosed with G9 I can relate to some of the emotions you're going through as you research what all this means. When we found out that Danny had cancer that had...
Hey Songbird, Yes, you are in a tough situation, but this is one of the best forums out there. Sometimes you get people who's treatment hasn't been what they thought it would be, and sometimes you...
We just got back from MD Anderson, and none of Danny's test showed any sign of cancer coming back!!!! When we began this journey a little over a year ago, we were mad, scared, and confused. Now we're...
Heading back to MD Anderson for bone scan, CT scan, blood work and praying to have stents removed....
Just got back from MD Anderson...Danny's PSA still undetectable(yeah, yeah, yeah); however, still having problems with both ureters closing. Doc in unsure why. Going back in January to do a round of...
Back at MD Anderson for a week or so. Hoping they will be able to take the stents out permanently this time...waiting in IR appointment so they can take a look at Danny's ureters. When we saw...
My husband is 4+5 also. He was diagnosed in Jan 2013 How did you find out: He was seeing urologist for 5 years that was treating him for BPH, but the meds weren't helping at all. Needle biopsy was...
Love it, thanks for sharing....