been a little scared to come here

14 years 6 months ago #27845 by Bill in Philly
Replied by Bill in Philly on topic been a little scared to come here
thanks... there was quite a few spots, in different places, they didn't discuss a surgical option. Seems clear that system-wide treatment is needed. Side effects from my second chemo round seem less dramatic than the first.

Hard to find any silver linings, but I guess it could be worse if they did the surgery, then found the spread, and couldn't start chemo until the recovered from the operation, and the bladder removal wouldn't have done anything in terms of preventing spread. Like I say, not much of a silver lining.

But thanks to all for your good wishes and support.

Today I called the Phila Inquirer news desk to propose the story topic, on the angle of the important research my doctors are doing in this under-reported disease. I've also volunteered with the hospital to help with some content for their own web site... because it doesn't even feature this work. fccc.edu/cancer/types/genitourinary/bladder.html

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14 years 6 months ago #27837 by mmc
Replied by mmc on topic been a little scared to come here
Bill,

Really sorry to hear about the spread. you certainly don't want to try to deal with a surgery like a neobladder when you have to get the other things taken care of.

I hope things go well for you in getting things under control with the chemo.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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14 years 6 months ago #27833 by Cynthia
Replied by Cynthia on topic been a little scared to come here
Bill,

I for one am very happy that you decided to post here. What a up and down time you have had it must be impossible to get your bearings at this point. We may not have answers but we can support and lend an ear, know that we are here for you.

Are you considering a second opinion or have you already done so?

I look at posting as being an advocate be it an answer to a post or asking a question. The other day there was a post and I happen to note that in four hours it had been read almost six hundred times, by the time it goes to the back of the posts it will have been read thousands of times. For everyone that posts there is a host of as we call them “lurkers”. I receive emails from these people telling me how much inspiration and information they take away from this site. Just knowing that others share our feelings and we are not alone can be a major gift.

Advocacy is also part of our goals outside of offering support to survivors and their loved ones. With a united effort we look forward to the day that bladder cancer is no longer the “forgotten cancer”. Many of us know if we had had an awareness of bladder cancer and its symptoms we would have pushed harder and would have had a quicker diagnosis. But the awareness has to expend to not only the general public but to the medical establishment as a whole.

Welcome to our family and I hope that our online home offers you a haven to share your journey.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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14 years 6 months ago #27826 by Julie
Replied by Julie on topic been a little scared to come here
Bill, I'm sorry that lesions were seen in your lungs. Is there one or more than one. How did they determine they were cancer?

There has been more lung surgery done in recent years. One of the Thoracic Surgeons here teaches people from all over how to do lung resections laproscopically. So they can be minimally invasive and have a shorter recovery time. It is best to go after them right away.

Julie

Volunteer Coordinator
ABLSC

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14 years 6 months ago #27823 by Bill in Philly
been a little scared to come here was created by Bill in Philly
Hi; I joined this site shortly before the rebuild and posted some in the invasive section. Haven't posted since then. At that time, I was set for RC with neobladder on Sept. 11, and had gone through the big decisions of partial vs. total, then what type of reconstruction. More I learned, total seemed to be the way to go.

Went in for pre-admission, at a nearby specialty cancer hospital (lucky to have one 2 miles from home), on Sept. 1. Everything looked good, including a cystoscope with the surgeon. Staging was t2, although he cautioned only the path on the lymph nodes could rule out involvement there.

Then, later that day, he called to tell me that the Ct showed spots in the lung. So the surgery's off, and he referred me to a medical oncologist, who saw me 2 days later. Had my second round of chemo yesterday.

So, that's why I've been scared to open this door. Big adjustment, getting prepared to deal with the major surgery, recuperation, and facing a percentage risk of recurrence that tapers off after a couple years... to the reality.

Going about as well as it can. The people at the hospital are very good. My family and job are supportive, I can work from home as needed, the kids are out of the house, and we have good health coverage.

That's about it, no questions, just introducing myself.

I'm going to take up the cause of trying to raise awareness for bladder cancer. My docs are keenly aware of how this disease doesn't get the level of attention it should. He pointed out that for men, it's the 4th most common. Where are the walks, ribbon colors, awareness weeks, celebrity spokespeople?

Obviously, this is the goal of the society and this site, so I certainly will keep that in mind and try to publicize it.

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