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grade 3, t2n0m0

2 years 1 day ago #56285 by DianaPB
Hi Cynthia,

I feel and love this post by you and especially your remarks as quoted below:

"The goal is living and the enemy is the cancer, not losing your bladder."

Thanks for reminding us what the main purpose of the fights.

The following user(s) said Thank You: Cynthia, Knifedealer

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13 years 7 months ago #4961 by Cynthia
It has been a while since I this thread has been active but I have been busy and not keeping track. First off let me say this. What treatment one choses is a personal choice. What might seem reasonalbe to one might be unthinkable to another. Having siad that make sure you do your home work. The only real control we have over our disease is the choices we make as medical consumors. The following is something that I posted on the Web cafe list server resently. I feel it might be relivant to the discussion here.

I am the person Linda referred to that failed
with the bladder sparing protocol. I had my
treatment at the mother source from the dream
team that developed the protocol. Now let me say
this up front I believe there is a place for the
bladder sparing protocol for some. But do not
think that bladder sparing is a free ride there
is no such thing in this world. All I ask is that
you do your home work and know what it is you are
getting into and what happens if it fails.

When I was diagnosed I did not even know the
symptoms of blc I had to look them up. And as I
was searching the reality of the situation set
in. I was devastated by the thought of having a
Radical Cystectomy terrified if the truth be
told. Terrified of what life would be like after.
Would I be the same person, sexually, physically
and mentally? I knew there had to be a better
way. I hit the internet and when I found the
clinical trial I would enter within hours of my
home I felt I had been delivered.

Now first off Bob be aware not everyone is
allowed into the protocol, nor should they be.
They do stage 2 selectively and stage 3 is very
iffy. It depends on many factors the first being
the location of the original tumor. Then you have
to go through a large battery of tests. So it is
not as easy as just saying I want to do this.
Once I was accepted this is what my nine month
treatment protocol consisted of.

40 sessions of radiation

20 sessions of chemotherapy

5 trips to the OR for biopsies

Numorous CT, bone scans, x-rays, blood work and
other tests

This treatment protocol can only be done in a
large center and I would not think of trying it
with a medical team that did not do it all the
time. The numbers for success are for how many
make it though the protocol with their bladders
intact not how many keep them indefinably. I have
never been able to find the numbers on long term
success with bladder saving. The up side is that
you may keep your bladder now lets look at the
possible down side.

Possible inconstancy or intestinal problems as
well as a higher risk of some cancers in the
future due to radiation. If you ever need pelvic
radiation in the future due to a new cancer you
have had the limit and it probably would not be
As far as the chemotherapy, long term affects are
not limited to but may include neuropathy. Due to
the fact that they use the big guns as far as
chemotherapy if you have spread later you may
have built up a resistance to some of the best
front line chemotherapy drugs now available.

If it fails and you have to have a Radical
Cystectomy you will find that most surgeons will
only offer you an external bag due to the
radiation. I have found research that concludes
that complications are as much as 50% higher in
RC patients with prior pelvic radiation. It also can
exclude nerve sparring techniques due to the
radiation damage.

In the end my story so far is a happy one I was
able to find a surgeon that would try to give me
a continent diversion. We could not try for a neo
bladder because by that time the cancer had
spread to my urethra. Even though my recovery
time was more extensive due to intestinal
complications, I am now up and running again. I am
active and do all the things I used to. Like many
blc survivors I now know that life can be very
good following RC.

While you are making your decisions on your
treatment path don’t lose track of what the
enemy is here and what is the goal. The goal is
living and the enemy is the cancer, not losing
your bladder.

Chin up and straight forward

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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13 years 7 months ago #4718 by clur
Hi Joe
Sounds great as long as they are really sure the tumour is not through the muscle.Any way of beating this disease is good especially if you can keep your bladder.Keep in touch and let us know how you get on.My original diagnosis was the same as yours but on surgery the tumour had gone through into the fatty tissue microscopically may be I would have had a better run at things with chemo first.
Claire x

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13 years 7 months ago #4636 by cta7978
Awesome Joe - I personally would follow the same protocol if my tumor had been a T2 and was removable. Keep us posted and good luck!

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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13 years 7 months ago #4621 by Jmema
Read Cynthia's Corner. It is by Cynthia Kinsella. She is from Dalton, MA. and had all of her treatment at Mass. General. She is very active in BCAN and the Bladder Cancer Sisterhood. She helped me a lot when I was first diagnosed. I was also trying to decide between surgery and chemo/radiation. She even posts her phone number so you can call her and talk. She was very helpful and kind.

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13 years 7 months ago #4618 by joeburg55
Hi, Wendy, went to the cafe and read his story, how would i contact him for more info, i didnt see a e-mail.

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