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Clear cell - IC

susy2006
Posts: 3
Joined: Apr 2006

I have been diagnoised with IC oc. I had talked to my dr, he said the cure free for this one is 50-65% and if it recurs then the life expectancy is 5-6 years. This is really scares me. I will be starting on chemo from monday. please share your experience

mopar
Posts: 1950
Joined: May 2003

Susy:
I'm so sorry you have to deal with this, but you are not alone. I was diagnosed with Clear Cell Stage 1C in March of 2000 (when I was 44 years old). Had a total hysterectomy, lymph node removal, omentum removal. I had 6 rounds of carboplatin/taxol. I was cancer free until February of this year, when surgery revealed a small mass on the pelvic wall. I am now receiving another 6 rounds of the same regimine. The good news is that the 11 lymph nodes removed this time showed NO CANCER, as well as the 'washing' that they did.

As far as statistics, I remember my doctor giving me the 'numbers' the first time. I realize he may have been obligated to give me the facts, but at that point it was all so scary and overwhelming. Once I was able to focus better, I tried not to think about all those numbers and just focus on getting through chemo and getting better. I've done other things for myself (nutrition and exercise, etc.), and I do have a strong faith. As for statistics this time around, I haven't even asked and I haven't even researched it. I guess it's different for everyone, but for me I want to concentrate on all the positives I can.

So, you will find a lot of support here, a lot of information. Just don't try to absorb too much regarding 'statistics' and do what you need to do. As for going through chemo, if you have any special questions we'd all be happy to answer them. And since I'm going through it a second time (some of us are), we can really share 'current events' together.

Please keep in touch. You're in my thoughts and prayers.

Monika

susy2006
Posts: 3
Joined: Apr 2006

Thanx for replying. Your message is really engaraging. I thought cancer won't return back if you are cancer free for 5 years. That's what I was thinking. Since I am new to this, I may not be correct. From your case it looks like it can come at any time .

pierz
Posts: 2
Joined: Oct 2006

can you give me some advice also? I am new to it.Start chemo next week.Have no idea what I have since nobody talks to me .Had debulking done 2 weeks ago. Any idea what to expect? You sound so optimistic and I am scared.Got used to idea of dying but the mess I will create for everybody in my family is scary.

jesssheu
Posts: 4
Joined: Apr 2006

Hi, Susy,

I was dignosed w 1A oc with Clear cell in Jan. Had a surgery done to remove both my ovaries, uterus, and lymphnodes. I need to have 3 cycles of chemo. Started 2nd cycle last week. First chemo was not too hard. Didn't have many side effects but the 2nd one has been making me feel tired all the time and my fingers and feet are numb. My hair is almost completely gone. Been feeling very depressed. Good luck w your chemo. Hang in there.

Jessica

susy2006
Posts: 3
Joined: Apr 2006

I am starting my first chemo on 4/10/06. since both of us are starting almost in the same time, let us keep us in loop.

maryfrank
Posts: 2
Joined: Aug 2006

Susy,
I just found this site, so this is the first I have seen your message. I hope you are doing well, it's been about 4 months since you started chemo, are you almost done?
I was diagnosed with 1C in November 2005. I had the total hysterectomy- the lymph nodes were clear, but there were some cells in the fluid, so my Dr. recommended chemo. When I asked about recurrance rates, he said about 40% without chemo and 5-10% with chemo. It made the decision real easy. I began chemo- taxol and carboplatin in Dec, three weeks after my surgery and finished up in March. I was never nauseous, thanks to some wonderful meds, and the first couple of treatments were really uneventful. After about the third, I would have fatigue and a lot of achiness- I heard it referred to as "being hit by the taxol truck" and I can relate to that, but it only lasted a couple of days and then I would feel more like myself.
My hair all fell out, and I wore a wig to work and often just a warm hat if I was outside since it was winter. At home, I just wore a lightweight fleece cap, that I could easily whip off when a hot flash came along. I looked a little like a beanie baby! I gave up the wig as soon as possible. The hardest part for me about the hair loss was the eyebrows and eyelashes- I tried eyebrow pencil, but gave up on that. My hair is pretty well grown back now, although it is super short- I've had a lot of people who don't know I had chemo compliment me on it and say they wish they could do a hairstyle like this! In the meantime, I've saved a lot of money on haircuts and color.
I have been back for two follow up appts and so far everything is good, I go again in two weeks. Residually, I have some neuropathy in my feet and fingers and "chemo-brain", but in general I have done very well and am very optimistic. I'm back to my normal activities and am looking forward to skiing again next winter, since I missed the whole ski season this past year.
For the most part, I feel very fortunate- grateful that the cancer was found so early and that there is treatment. I was really scared when I was told the diagnosis, but I trusted my Dr. and had a lot of support. I have a friend who was diagnosed about 12 years ago with a much more advanced stage and she is doing well today - she was my mentor through this whole process. I have found that having the support of my family and friends and having a sense of humor- odd as that may seem- have been very helpful to me.
I hope you are through the worst of it and are on the upswing now. Please give us an update.
Mary

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