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There is ALWAYS HOPE!

11 years 6 months ago #14956 by PinkVirgo
Hi Joe,
Ok, I know what you mean now. They were going to do that after diagnosis but he was very anxious to start chemotherapy, so they said they weren't worried about the bladder, they were worried about knocking the cancer in the lungs down first and they didn't want to start a surgery while he was undergoing chemo. The procedure will be done after his treatments end.

Momof4- I know, they called my Dad a "strange bird" from the beginning, but it's no misdiagnosis, they did a biopsy of his lung and tested the mass and they know definitively it's bladder cancer. We still have a long road ahead...as you know bladder cancer does recur and the Doctor's are telling us if it does, it will recur outside the bladder.

All the best,
Jamie

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11 years 6 months ago #14953 by momof4
As much as I would love to hear that someone beat stage IV., This sounds more like a mis diagnosis...Without ever having a TURB...and no tumor in the bladder...I am very confused...I am glad that your father is ok.

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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11 years 6 months ago #14952 by fearandfight
A Turbt=transurethral resection of a bladder tumor and this is the test they use to stage the cancer in the bladder.

http://www.cancerbackup.org.uk/QAs/BladdercancerQAs/AllQAs/related_faqs/QAs/1022

Other then that I don't know what to say because I have never heard of anything like this in my life. Cheers, Joe


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11 years 6 months ago #14951 by PinkVirgo
Hi Pat,

Thanks for the nice reply. Your story is amazing too and does sound similiar. It's funny, from early on my Mother and I kept saying that it seemed like such a fluke because they never actually saw or found the origin site. My Mom kept saying over and over "It's going to leave as fast as it came." We all wanted to believe that, and positive thinking is key, but we were so scared my Dad would be a statistic.
I wouldn't wish this disease on my worst enemy, it is such a catastrophic diagnosis. I don't know how or why this cancer came and left but why can't anyone else hope for that? EVERYONE deserves this kind of news. When my Dad was first diagnosed, we all scoured the internet looking for some "success story" of someone who had beat this at his stage, and we found nothing. We wrote to the LIVE STRONG foundation and asked them to send us Bladder Cancer survivor stories and they sent us back a letter saying that they didn't have any stories that matched my Father's cancer type. My Dad kept going out to the mailbox looking for it, and my Mom never had the heart to tell him about the letter they sent us. It would have been better if they had never wrote to us at all! I KNOW THERE ARE PEOPLE THAT HAVE BEAT THIS, BUT THEY NEED TO GET THEIR STORY OUT THERE!!! People need hope and positivity!

Anyway, my Dad is being treated at Stonybrook and his Oncologist is such a caring, upbeat, brilliant man! His name is Shenhong Wu.

http://www.stonybrookphysicians.com/doctor/WU_MD_SHENHONG_2820.asp

If I can kind find out specifics of his treatment, I'll definitley post it.

God Bless,
Jamie

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11 years 6 months ago #14936 by Patricia
Jamie...is your father being treated at Stoneybrook or Memorial or somewhere else? I'm wondering if the thickening in the bladder was CIS which isn't always seen on CT scans and had metastasised to the lungs? At any rate its an amazing story as the drugs used are the gold standard for blc chemo right now and doesn't usually produce these results...i hope they write it up in the uro journals.
I had something sort of similar about 20 yrs ago where i started having problems breathing...saw a pulmonologist at a major hospital and x-rays showed thickening of the tissue of the lungs and i was told it was progressive and always fatal. I had been working in an environment where they sprayed with insecticides every six weeks..a bit of overkill...and i removed myself from the sick building..and within 6 weeks my next scan showed nothing...it was gone...my doctor said he had never seen anything like it happen before. I asked him if maybe he had gotten the wrong x-rays originally. There was just no logical explanation other than i removed myself from a bad environment and did a lot of visualization techniques and i was young and apparently my body went into healing mode??? I guess i was being saved to fight bladder cancer!!
If you know the exact schedule your father went thru and dosages of the drugs it might be helpful to others fighting similar problems. Maybe there's something new in there about the additional time of chemo or dosage and how it was administered?
Continued success for your father.........Pat

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11 years 6 months ago #14934 by PinkVirgo
Joe, what do you mean? He was diagnosed with Stage IV at Stonybrook Univ. Hospital, Stonybrook, NY.

Pat, My father still has a bit of a journey, he is still going to receive 2 more rounds of chemo treatments. As far as the bladder...it's complicated-- the Doctor's knew by the biopsy of the lung that the cancer came from the bladder, but the CAT scan showed no tumors in the bladder. The oncologist suspects that the cancer may have originated in the ureter, the only way they will be able to determine this for sure is by doing a cystoscopy and scans after his chemo treatments are over. The Oncologist believes that the tumor at the site of orgin moved into the lungs and that there may be nothing in the bladder or ureter. The reason why he believes this is because in the original pelvic scan there showed a thickening in the ureter wall, and in the latest scan there is no thickening.

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