I'm new..kinda long email..explains where I'm at..

[Guest guest]

My name is Lynn..51 yr young lady from Florida..fighting bladder cancer

that has now, after 7 yrs & 4 yrs of that remission, gone also into upper

tract urethelial cancer or TCC of the kidney pelvis & ureter. Here is my most

recent story..

Well, I've made one of the biggest decisions of my life.. After going to

the oncologist last Wednesday, I've done a LOT of praying, thinking and

talking things out with my family and friends..and mostly, the Lord!

Here is what I learned from the oncologist last Wednesday ( some things I may

repeat from another post because honestly? & I didn't have it quite

straight from the surgeon/doc...so it will be to clarify!): She started by

saying, " So, you know that you have kidney cancer, yes? " Then she asked me to

tell her about my kidney cancer. So, I started by saying that up until this, I

had fought bladder cancer since December of 2003, and I explained what we had

done for that, & about it recurring just as I was about to go to annual cystos

after my last 6 month one.

She then said that yes, it was all considered bladder cancer because that is

where it started and that it was transitional cell carcinoma or urethelial

cancer.

There was one small TCC in the kidney pelvis. It was not invasive, but

considered high grade just by being IN the kidney pelvis. There was also an

almost 3 cm. TCC (tumor) in the distal end of the ureter ..this little

booger had grown THRU the ureter wall. Invasive, Stage T3.

The doctor had removed robotically my left kidney completely with the

surrounding lymph nodes, the left ureter, and the left ovary. Everything had

clean margins and the lymph nodes - cancer-free!..

However, because the tumor had grown through the ureter wall, and this cancer (

as we all know) likes to recur..there was a chance that some microscopic cells

could have gotten into the bloodstream. She said my chances that it wouldn't

come back at this point were 45-50% She said if it did spread to one or more of

the most common places, brain, lungs, bones, or liver, it would be considered

incurable. We asked her if there were any statistics on if it came back..

about how long until it showed its ugly little head..

She said anywhere from 6 months to 5 years...and that it was typically very

slow growing...which unfortunately is a reason for the 'incurable' diagnosis

when it DOES show up.. its probably too big...too late..

She then goes on to tell us which chemos.. and how long and that it would be

aggressive therapy.. She says they would use Cisplatin and Gemzar. I would have

the 2 together the first week. The 2nd and 3rd weeks, I would just get the

Gemzar. I would be receiving these by port.. ( especially since after they

did some bloodwork , they

couldn't get the vein, & called the chemo nurse to take it..and she said with

the irritant factor of the chemo & the way my veins are, it would definitely be

a good idea to go w/ the port. I would be receiving 4 cycles..or 4 months.

She told me about side effects..We talked about the possibilities of it ruining

my only remaining kidney. I told her that the kidney doctor said I had 59%

kidney function before the surgery to remove one of them. She said my

creatinine looked good..and we told her from past conversations from urologists

that said my kidney function was good..Dr. Green..the one that did my surgery,

figured it was the BUN lab result that showed my poor kidney function. I asked

her if that was something they really didnt' worry about that

much w/ chemo, and she just kind of nodded no..and said they would watch it,

that cisplatin was one of the worst.. But she had never seen anyone lose a

kidney from it. And if I did have problems after the 1st cycle, she would

change me to the next one down. We then talked about my RSD. She said that was

another possible problem we could face.. that it did sometimes cause some

pretty bad neuropathic pain & being a pain management doctor also, she

knew about RSD & said if it did affect it, it could be pretty awful.. but that

again..she would then change it the next time. The other thing w/the RSD is

she said since it affects me quite badly with not only pain, but fatigue,

etc..that I would probably feel pretty rough for most of the treatmts instead

of it leveling off in a couple to a few days like most people.

I also have some heart valve problems and am pretty susceptible to nausea,

etc..

She said that the other thing she had to tell me was.. that with this type of

cancer which is rare, and the chemos they treat it with, for reasons they

really didn't understand, sometimes it just had no effect on the cancer at

all. I was pretty surprised actually. And I asked her about how often did

that happen.. She said about 50% of the time!!!!!!

The more I read about the effects and what they can do..with all the

health problems that I already have and not being strong physically, I just

couldn't see how ..what really is about a 50/50 chance that it will work or

help, was worth going through all that and taking chances with coming out of

it with even more problems...and then the chemo may not even work.

I told her that I might not do it because of those things. And she said she

could understand. She wanted me, of course, to understand that if it did come

back, it wouldn't be good..and I told her I did. She said that if I chose not

to do the chemo, that she would still see me.. and what she would do is see me

every 3 months for blood work for 2 years and there would be CT scans

throughout in there also so we could try really hard to catch any recurrences.

See..I also still have the CIS cancer in my bladder. It was superficial when

the surgeon went in and looked w/ me under anesthesia back on Feb. 2nd. He

thought I would be fine if he removed my left kidney, ureter, lymph nodes and

ovary, and after recovering from surgery, I would do the BCG/Interfuron

treatments for 6 weeks. He also checked my right ureter during that

procedure, and it looked fine. He sent a washing off to the lab & it came back

w/ some 'atypical cells'. Because of that, he was going to take me to the OR

again after I finished the 6 wks of BCG/ interfuron when I would have usually

had a recheck cysto to see how the treatments did, anyway..and at the same

time, take a look at the right ureter again, do the washing..and if something

was starting, then do more treatments for the ureter..which he felt

had a great chance with how well I did w/ the last of these treatments I had.

( remission for 4 years).

But if I did the chemo..then we were to forget about the bladder CIS for now,

and get the chemo done first.. ohh..and that was to be 4 cycles.We asked the

oncologist if the chemo would help the bladder with the CIS & she said no,

that usually it didn't. SOO..that's waiting another 4 months with the CIS

growing in there! I just didn't feel comfortable about that either.

After a LOT of praying and talking and thinking like I mentioned at the

beginning.. I've decided that I would rather give..what seems to be about a

50-50 chance.. to God whom I have GREAT faith in..to just keep my body from

having a recurrence without the chemo. I feel like if that is what is going to

take me to Heaven, then no matter what I do, its not going to stop it from

coming back.. and if its not my way to Heaven, it won't take my life.

I have seen God do amazing things in so many people's lives around me..and in

my own, and even in the worst case scenerio..which really wouldn't be BAD for

me anyway.. because I'm a Christian and know I would go to Heaven..I just

think that a 20% difference by doing the chemo and hurting my body..

to then only have a 50/50 chance anyway that it would work, with my poor

health, I'm better off to trust God and have the 4 months feeling as good as

possible. Its been a difficult decision, I must admit.. but my family and my

close friends.. all understand and are on my side.. God is sooo good to me,

I really just can't lose either way.

I will be getting on a super good diet with lots of fresh fruits and

veggies..( which I should have already done..silly me.. seriously!).. There

is a doctor near us that is a nutritionist and has worked with cancer patients

with some good success.. So we are probably going to pay him a visit also. (

interestingly enough? he's my daughter-in-love's primary care doc!!

I know that chemotherapy has been a big part of a lot of people's cure and I am

not saying anything against anyone doing it. On the contrary, this is a very

personal decision..that no one could make but ME! And I also have a rarer form

of cancer. The percentage of us that will have this cancer go into a ureter or

kidney or both, is small; however, it doesn't feel small to those of us for

which it has happened!!!

I will probably have another cysto to have my bladder rechecked & do the BCG

Interfuron treatments we had planned. The doctor wanted to do them without

doing any TURBS. ( I had 2 spots of CIS in the biopsies but at that time, they

were too small to see.. so I'm not sure he wouldn't want to recheck them after

2 mos.. maybe not. I'm not having any bleeding, or blood in my urine etc..

Ohh.. I am also having a PET scan on Wednesday! That is part of the

oncologist's program whether starting chemo or starting the 3 mo. watching

program. And they also did some blood work. So we will be starting out right.