Ovarian cancer Stage 1A

Is there anyone out there who is stage 1A (where the cancer cell was encapsulated in the cyst) but it was clear cell? That is my diagnosis. I had a full hysterectomy, my omentum lining taken out and my appendix and 20 lymph nodes were taken out and there was no spreading from w/in the cyst on my right ovary. I did 6 treatments of carbo/taxotere (b/c I had a very bad allergic reaction to the taxol). So anyway, I was wondering if anyone w/stage 1A can relate to what I went thru and if they are now in remission and for how long? I also wondered if anyone out there at any stage have problems w/their bladder whereby after you urinate it still feels sore in the urethra? I have that even after all the treatment. I had previously been diagnosed w/endometriosis and that is how this cancer cell formed. I am 45. Thanks for any feedback. JT

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Hi JT...

My wife had stage 1A clear cell. She was 37 years old at the time (last Christmas). She had fertility sparing surgery. They removed one ovary, fallopian tube, and omentum. She is European (Swiss). We took care of everything over there, where they tend to be less aggressive than the U.S. She had 4 rounds of carboplatin alone. She also had endometriosis which could have been a contributing factor to the formation of cancer. Her grandmother had ovarian cancer. It's been nearly a year and so far so good. Previous to surgery and chemo, her CA125 was 45, it is now 4. We are very confident that her cancer won't return, but of course, you never know. She, like you, can feel very lucky to have discovered the cancer at stage 1a. This is so rare. Even though she's clear cell, the most important thing is early detection.

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Hi JT,

I was diagnosed with stage 1C. The ovarian cyst in which the tumor grew was so large that the surgeon had to burst prior to removal. I decided not to have a hysterectomy b/c I am trying to preserve my fertility. I just completed 5 treatments of carbo/taxol, we stopped before 6 b/c I too was having a reaction - neoropathy. I was 29 when I was diagnosed. I have experienced the bladder problems you described but that has disappeared now - I experienced it early on in treatment. could you have a bladder infection? Might be worth checking out.

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I had the same diagnosis, I had cancer cells in my ovary which was encapsulated in a large adenofibroma. It was also clear cell. I finished 6 rounds of carbo/taxol with very few complications. It will be seven years since my surgery in December. I was 46 at the time of diagnosis and surgery. My oncologist feels at this point that I won't reoccur, and I no longer go and see her on a regular basis. I get my ca-125 tested annually by my gynecologist and feel comfortable with that. My ca-1215 we never high, it wasn't tested before surgery but was only 38 prior to treatments, it fell to the 9-12 range during treatment and has stayed there ever since. Personally while I am fairly confident that I will not have a recocurrance I still have my nights where I stay awake thinking about it. I do know women with a similar stage and grade that have reoccured, usually within a very short time. I haven't had any major bladder problems or other long term sid effects so I have been very lucky through the whole experience.

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I also have stage 1A but it is emdometrioid. I had a full hysterectomy also followed by four rounds of chemo with carbo only. My diagnosis and surgery were two years ago this month and so far I have had no recurrence. My only adverse reaction was painful neuropathy in my feet which lasted over a year but has finally calmed down. I don't have any urinary problems other than what might be normal for my age given that I am 58. I think that we are both incredibly lucky to have had our cancer caught at such an early stage. Feel free to email me at: bash155@cox.net

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could someone tell me what clear cell means? i'm trying to find out all i can about this horrible disease

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I would also like to know what clear cell means. I have been diagnosed with stage 1A granulosa cell cancer. I was told by my GYN that I wouldn't need further treatment, just testing every 3 months. Yesterday I had follow-up with GYN oncologist and he wants me to be seen by a chemotherapist to see if I should receive treatment. I don't know what to do, especially since my GYN oncologist wouldn't come right out and say I needed further treatment. He wants it left up to the chemotherapist. If anyone else has granulosa cell and is willing to talk with me, I'd really appreciate hearing from you.

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I would suggest you get many more opinions. You also have a right to hear what they have to say. They should not be quiet. Ask why they don't suggest surgery to remove the tumor.

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I was dx with stage 1a, a year ago today. I had total hysterectomy, appendix and omentum removed along with many lymp nodes. I was told since the cancer was caught early and was confined to tumor, I would not need further treatment. The oncologist did not recommend chemo, however I do get checkups every three months. There is not a day that goes by that I do not worry, the what ifs are horrible. Like I said, today is a year, a very emotional day for me. Thanks for listening.

Char

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I should have added that I did have a total hysterectomy three weeks ago. They did a full staging and took many biopsies. All the biopsies came back negative. Granulosa cells were confined to the tumor on the ovary. I'm just not sure what to do about further treatment. OB/GYN said no further treatment needed, GYN oncologist said he would defer to chemotherapist but if it was him, he would get further treatment. I have appointment next week with chemotherapist. Did you have granulosa cell?

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Was it Granulosa cell? I was told I would also need checkups every three months. Did you ever see a chemotherapist? Congratulations on one year. Your odds are getting better every day.

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Regarding whether or not to have chemotherapy following surgery... My surgery was done by a gynecologist so the onco /gynegologist said he would redo the surgery which I would have gone through or I could have chemo which he felt was a good idea anyway. He gave me literature to read which convinced me that chemo was the best way to go to ensure my chances of survival, even with early stage disease. I'm very happy that I did it because I feel that I did what was necessary and in the two years since my checkups have all been clear. Good luck with your decision.

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Hi, I was diagnosed in Dec of 06 with Endometrial (uterine) cancer Stage 1A At the time of my surgery in Jan 07 they ALSO found Ovarian cancer stage 1A. Both were endometriod type. My oncological surgeon removed my uterus, ovaries, appendix, omentum and 36 nodes. There was No sign of any spread. She presented my case to the hospital tumor board (made up of doctors of different specialties ) and even though I had 2 Primary cancers they all agreed that I did NOT need any further treatment. My surgeon follows me at 3 month intervals (which will change as time goes on) and we check my ca 125 which went from about 20 down to 9. I was 52 at that time and I feel fine and confident for the future. The surgery for the Uterine cancer found the Ovarian cancer and probably SAVED MY LIFE. Early Detection is EVERYTHING.!!!

I wish you all good luck and good health.

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Dear Marge1980,

I was diagnosed with Granulosa Cell Tumor of the Ovary in 2003, stage 1a. The advice your doctor gave is the right one - no further treatment is needed. But you do have to be checked by a gyn/onc every three months for the first 2 years and every 6 monthes thereafter because GCT can recur up to 33 years after diagnosis. There is a very active granulosa cell tumor thread on the OVCA.net website which I use quite often. I'm glad to see the subject on this forum also, because not many people know about GCT, including doctors. For more information on GCT, go to www.gctf.org.nz. There is a wealth of information that the founder, who is a GCT survivor, has compiled and she also is keeping a database of GCT people and their experiences with the disease. Please put in your information!

I have not had a recurrence yet and hope I never do. But there are women who were stage 1a and have had multiple recurrences. So we must be vigilant.

Take care,
Cindy

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Dear Cindy,

Thank you so much for the information. I have not been able to find much information about GCT and I can't tell you how much I appreciate your help. My GYN/Oncologist wants me to have chemo. Mostly as a preventative. He said if I do not have chemo and have a recurrence, he'll never forgive himself for not making me go for further treatment. I will be meeting with a chemotherapist this week so I'll see what he has to say.

Again, many thanks.

Margaret

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I was diagnosed with stage 1C with clear cell. Sounds like I had a similar course of treatment. My first surgery was to remove the cyst, which was found to contain pre-cancerous clear cells.

My second surgery was to remove the ovary, where cancer was found.
Since the cyst burst during removal, it was diagnosed as 1C.
After several opinions, I decided to remove my other ovary and have a hysterectomy.
No sign of spread or cancer was found in my other ovary or te surrounding areas.
I followed it up by 6 treatments of Taxol.

When I was first diagnosed they also found extensive evidence of endometriosis.

I completed all of my surgeries and chemotherapy this past May, and have been going for check-ups every 3 months since then. At this time, there are no signs of cancer. Since I took an aggressive form of treatment the doctors are optimistic.

I had problems with my bladder righ after surgery, but it subsided.

I can certainly relate to some of the feelings you may be having after diagnosis and treatment.
I struggled with taking these measure before being able to have children. While going through the surgeries and treatments I was so focused on getting better, that I found it difficult afterwards, while dealing with all I went through.

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I read your comment and was astounded by the similarities. I don't recall if my Stage1 is A, B, C I don't really understand all the stages. But I was told that I am stage1, clear cell, with the cancer encapsulated. I had a full hysterectomy along with lymph nodes removed. My appendix had been removed about 5 years ago, so that was not involved with this diagnosis.

I have however, been struggling with endometriosis since as far back as I can remember, which likely delayed by diagnosis has the new and additional pain I was experiencing I had chalked up to that condition until the pain became so very severe, it was unbelievable. I am 49 years old so when my menstrual cycles became excessively painful (more than the usual endo pain-which in itself, as you know, exterme) extremely heave and full of large clots; I wrote it off to peri-menipausal symptoms. It was actually by having developed an infeceted MRSA sore that was infected to the point it could not be treated with oral anti-biotics. My doctor sent me to the hospital for IV treatment and they had to do a CT to see how the deep the MRSA infection went, to determine if they would have to cut to drain and relieve. The CT showed I didn't need surgery for the infection, but showed a 9mm mass. (sorry, a little off point, but a lesson not to take anything for granted or make assumptions regarding my health)

I do not have problems with urination but do have problems with by bowel movements and tend to experience pain with mis-shaped stool.

I also had a bit of a problem with the taxol, I experienced nausea and, what seemed to me, one long horrible hot flash about 15 minutes into the treatment. In addition to some pain in the vain they were pumping the medication into. They had to stop treatment until I stabilized, about and hour; then resumed. When they started the IV back up, they slowed down the drip. The nausea pretty much went away, but that first treatment I literally dripped sweat for the reaming 5 hours of the process. We kept the taxol for the second treatment, with a slower drip it went much better it's what I stuck with for chemotherapy. With the slowed down process I didn't experience the nausea again (at least during treatment) nor did the 8 hour hot flash occur.

Yes, according to my doctors, at the moment I am cancer free. I am told that having be fortunate for the cancer to have been found in stage one, I have a 90% chance of staying a permanent survivor. Unfortunately I have been left with the toe and finger neuropathy (don't think I spelled that correctly), the pain and numbness in my toes and fingers, which may or may not go away. I have just completed my treatments, so I am only a short term survivor but have confidence that my doctors are correct and should not experience a relapse. They also suggest that I should get normal feeling back for my toes and fingers. The hands are better, they don't really hurt or even tingle much anymore. I do on occassion drop things though, because at times I really don't have full feeling of them in my hand. (bit of a weird feeling)

I've been trying to find out all I can about reoccurence, I'm trying to really figure out why it potentially can come back at all. Given that the tumor was encapsulated, and the ovaries (which I thought is the source of the cancer) are gone; what does it come back to? I'm still looking for a reasonable answer. Also trying to determine how much the fact that it was clear cell plays a role in it's potential return.

This sounds weird but I was surprised and somewhat comforted to learn someone else can relate to many of my specific experiences. Thank you for sharing them, I don't know if my comments have help you at all, but yes there is someone else out here who experienced almost identical symptoms and diagnosis.

Be well. gg

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I too was diagnosed with a GCT. My primary sent me to the gyne who deferred surgery to the gyne oncologist. He did not want me to have surgery twice when the onc could do the staging while I was in surgery. I had had a hyst (2005) but retained my ovaries. These were both removed during surgery last Oct (07). My tumor was the size of a football- 15cm and some. I asked about the appendix removal and was told that they would only do it if the ovaries were mucinous. I did not have that so the appendix is still with me. I wanted it out because I did not want to have another surgery if I could just have all the unnecessaries removed at one time. Oh well. Me and my appendix are well and destined to be together I guess. Anyway, I was told that the only treatment after surgery was follow up- I have an inhibin reading every 3 months and was told that the duration was to be for an indefinite period of time. I go for a CT each year, normal gyne visit and then a yearly visit to the gyne onc.
I have not heard of there being a need for chemo after having a GCT 1a - Is it possible that the physician is "over treating"? I ask because of his comment about "never forgiving himself if you did not have it". Get opinions, opinions, opinions.

Good luck to you
melf

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had same thing, so far so good. But, still very nervous. Experiencing some cramping and am very concerned. its been two years.

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I had stage IA with fertility saving surgery (lost one ovary and fallopian tube) but no chemo. I was dx 18 months ago and still all clear.
I'm also 8 weeks pregnant :-)

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Heyyyyyy snowwhite.. Did I read Pregnancy???? Make a post about it!!! I want to know everything!!! Did you need IVF? How long did it take for you to get pregnant??

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