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Newly Diagnosed

11 years 11 months ago #10128 by Melodie
Dan,
Just try to keep in mind, altho. we share our personal stories and there is much that we have in common...we all have some differences in our experiences...in my case, although I had chemo prior to surgery, I was on MVAC which wasn't all that tough on me. I had days when I was not able to keep any food down and so fatigued I couldn't take more than a short walk but that was much easier on me than going in for my RC. I did go under the knife....my surgery pain was well managed but the recovery time from surgery was much harder on me than the chemo. I knew I would be sore and stiff for the first week but didn't expect it to last longer...which it did as recovery from a major surgery takes time. But if I (a whimp) can handle it, anyone can. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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11 years 11 months ago #10117 by wendy
Hi Dan, Eileen, Maria,

Dan, I was glad you got your appointment moved forward. Maria...sorry to hear you had an invasive tumor. You're on the list at Moffitt? We are hearing that name a lot lately around here, lots of Florida people posting it seems. They have an excellent journal online free, that I have referenced on the main site for invasive blc, they're good.

Eileen! Thanks for the update, and please give my best to Mike and Dr. Schoenberg. I'm glad the worse is really over and it is now uphill from here. That fact that path report was cancer free is really the best news you could get, as good as a cure. Wonderful news.

Wendy

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11 years 11 months ago #10115 by Dan366
Eileen,

Thank you for taking the time to provide such a detailed account of Michael’s experience. I can’t tell you how much I appreciate being able to see the planning and implementation of a successful treatment regimen.

I printed it out for my wife, and she’s reading it now.

I’m very glad to hear that Michael is doing so well.

I wish you both the best of luck, and thanks again for you thoughtfulness.

Dan

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11 years 11 months ago #10111 by mikeg
Dear Dan,

I am writing to you from my husband's hospital room at Johns Hopkins in Baltimore, MD. He had his radical cystectomy on Monday, Nov. 5th. He's doing great.

Here is a quick synopsis of his chain of events:

1. Blood in urine (gross hematuria) on June 8th, 2007. Followed by blood work, urinalysis,and then a cystoscopy on June 28th.

2. First TURBT - July 2nd. DX - more than 10 tumors, 1 centimeter and larger, many of which were grouped together, suggesting muscle invasive.

3. Pathology results came back - stage T-2, T-3, muscle invasive. I forget the other exact details and don't have the info at hand. But muscle invasive is enough info.

4.CAT scan July 12th. Bone scan July 13th.

5. Met with Dr. Mark Schoenberg at Johns Hopkins for opinion. Brought all test results with, including the pathology slides. He had done 541 RC's at that point in time. He suggested three months of chemo first, followed by the RC.

6. July 30th - met with Dr. Robert Uzzo at Fox Chase cancer center for second opinion. He suggested we get the RC done in the next 3 weeks. He had done 150 RC's at that point in time. He advised against chemo because he felt it only improved your survival chances by 5% or a little more than that, and why go through the chemo.

7. Spoke to our good friend who is an oncologist. He read all the studies on the subject and said he liked the Hopkins model better. We trust this guy - he's really brilliant. And guess what - if you're in that 5%, you'll be glad you had the chemo.

8. August 1st - went to Schoenberg so he could do his own cystoscopy. He wanted to see for himself. Also the Hopkins pathologists had to re-evaluate the original slides of the cancer cells. They trust no one else's opinions - they need to see for themselves. The original pathology was done at our local hospital in PA.

9. August 7th - met with the oncologist at our local hospital. He told us the protocol:
day 1 - cisplatin/gemzar
day 8 - gemzar
day 15 - gemzar
day 22 - off
day 29 - cis/gem
day 36 - gem
day 43 - gem
day 50 - off
day 57 - cis/gem
day 64 - gem
day 71 - gem
day 78 - DONE

10. August 9th - went to the "big" bladder oncology specialist at the University of Pennsylvania. He described the exact same protocol as our local oncologist did, as detailed above. We asked if we could get the chemo done locally and he said "absolutely."

11. Chemo began August 13.

12. Chemo ended October 22nd.

13. Radical cystectomy Nov. 5th.

14. Pathology report came back Nov. 7th - ALL CANCER GONE!!!!!!!!

Please feel free to reply or if you want i'll give you my phone number. My husband is 58, in great health - no other health issues at all - and never smoked. We know how much this all sucks. The chemo was worse than the surgery but well worth it.

Eileen



Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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11 years 11 months ago #10071 by Dan366
Hi Folks,

I received some good news from my urologist today. His office communicated with the Moffitt Cancer Center. They feel that since I am on a "cancellation waiting list", it is very likely that I will get to see the Moffitt doctor well in advance of my Dec 14 appointment.

To all: Thanks for the info concerning the nature and timing of your treatments. It's comforting to know that it isn't necessary to "hurry" in order to get the appropriate care. I've read each of your submissions several times. It's helping to get a better feel for the situation I'm in, and how to proceed with less anxiety and more understanding.

Thanks again,
Dan



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11 years 11 months ago #10059 by Melodie
Dan,

Time. How much time do we have between dx and treatment. Most of us have asked that same question when we learned we had BC...and the answer depends upon a number of factors...primarily the type/stage/grade...mine was similiar to yours although one doctor said grade 2 and another grade 3. I too, have always been very healthy, have never smoked, and age 56.

I can understand your sense of anxiety and urgency; on 3/6 this year I learned I had cancer, on 3/8 had a TURB to remove the tumor and after the surgery my urgologist told me very frankly, it was muscle invasive, I needed 3 or 4 months of chemo and then the bladder needed to be removed. End of discussion. I was in shock & denial initially, but once I got past that, I wanted the opinions of at least two other well respected urologists and oncologists...and I wanted answers quickly. It took me about a month to six weeks to get all the info. I wanted before I felt OK about proceeding.

I began chemo in late April and two weeks after the finish of chemo, had my surgery in late July. So, it could be the urologist wants to have you go through chemo prior to the surgery...but whatever the case, you do need a plan in place, so press your urologist to have a good talk with you to help answers your questions and to help you feel more at ease that you are receiving the needed treatment in a timely way....and if he isn't responding to your concerns, find another who will. Will pray that you find some reassurance and peace of mind in the coming weeks. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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