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Does anyone have this rare type of Ovarian Cancer?
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Recurrent Low-Grade Serous Carcinoma
- By sarahliz
- Posted October 24, 2008 at 4:42 pm · 58 replies
- In Young survivors
- Shared with the public
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Exercise Cancer Premarin Surgery Hysterectomy Hormone therapy Ovarian cancer Taxotere Menopause Pain Carboplatin
58 replies
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- By Poopdeck
- Posted October 25, 2008 at 7:00 am
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I don't and I don't know of anyone that does. I didn't even know what it was till you asked the question and I looked it up.
This is a very scary disease, I know they all are, but this is a rare one, just like it says, and hard to treat.
Do you have it? If so, what type of treatment are you doing right now?
My prayers are with whover you are asking this question for, and everyone else with this type of cancer.
May God Bless You, Cindy Pooh
- By sarahliz
- Posted October 25, 2008 at 6:15 pm
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I have this disease and it would be nice to meet someone else that does. Chemo didn't work so right now I am trying to decide where to go next.
- By PattyKey
- Posted October 26, 2008 at 9:17 am
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Hi Sarah. . .
My form of cancer was serous, but I don't know about the low grade part. And I don't even know what stage. Isn't that dumb. But when I was diagnosed, I just didn't know what questions I was supposed to ask. And my doctor will tell me anything I ask, but I have to ask first. I'm not sure if that's good or not.
Anyway, I am a nine and a half year survivor. Four years ago I had a recurrence. And it seems like I am doing fine. Had a ct-last week - no evidence of disease.
I don't even bother to ask about my CA-125 anymore because when I was originally diagnosed it was around 135. After surgery it came down to 70. After chemo it stayed down six, eight, never above ten. And five and a half years later, when I had the recurrence, it still was around eight. So that test does not work for me. I rely more on CT-scans.
How are you? You said chemo didn't work. Have you had surgery? Tried different chemos.? What about a chemo. sensitivity test? Sorry to ask so many questions. I send you hope, grace, and lots and lots of positive thoughts and prayers, and look forward to hearing from you. Patty
- By hinsopa
- Posted October 26, 2008 at 9:29 am
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Hi Sarah,
The trial I mentioned was recommended to my friend because it is a different approach, not like chemo. Her cancer does not respond to chemo either. She has a high grade, very aggressive cancer.
- By michellelovejoy
- Posted October 26, 2008 at 10:17 am
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Here is a helpful link..good luck!
http://www.cancerwise.org/may_2008/display.cfm?id=a7cc1c0e-e8fb-495c-9753b2 5930a3e0d7&method=displayfull&color=red
- By sarahliz
- Posted October 26, 2008 at 11:57 am
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Thanks I actually just got back from seeing the doctor in that article. He is a great doctor. He also provided some hope for me.
- By Eileen1941
- Posted October 26, 2008 at 12:40 pm
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Hi Sara,
I can see why you are really concerned after reading about the low response rate to chemo for the low grade serous cancers.
I have serous papillary carcinoma of the uterus, but it is a high grade tumor, which is similiar to serous papillary carcinoma of the ovary. I seem to respond better to the Taxane group of drugs than to anything else. I am currently on Taxotere, every three weeks. Two of my tumors are shrinking a little and the other two have stopped growing, at least for now. My oncologist said that he is happy whenever they can find something that will at least hold this very aggressive cancer at bay.
Hopefully, they will find some medications that will work for you. Perhaps the Taxane group can offer some hope.
Please keep us up to date on how you are doing. My prayers go out to you. Eileen
- By jolock2004
- Posted October 27, 2008 at 7:18 pm
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Serous cell cancer is a subgroup under epithelial cell. Which is the most common cell type. The real problem is the low grade. Since chemo only works when your cells are busy dividing what happens is that you actually get chemo when your cancer isn't busy..which doesn't help..that is what makes grade 1 almost as bad as grade 3. At least with grade 1 I don't seem to grow any masses..I just develop spots all over. I was dx. in Nov 2004,it took 14 months to get me into remsission and I'm currently on my 3rd recurrence. I have tried 6 chemos so far and most do help me,but I just don't seem to stay im remsission very long. ~~~~Joanne
- By sarahliz
- Posted October 27, 2008 at 8:08 pm
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So are you saying this is the type of cancer that you have?
- By StillBattling
- Posted October 30, 2008 at 3:53 pm
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I have this type of cancer. I was diagnosed with it at age 31 and had been told at that time, that the cancer had been growing for the better part of ten years. did a complete hysto with no follow up chemo.
Look on the bright side though, it may take 30 or 40 years of growing before it actually kills us off LOL
- By StillBattling
- Posted October 30, 2008 at 4:29 pm
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Standard proceedure is to debaulk as much as possible. Then follow up with chemo. Or get lucky and wait for the cancer cells to speed up enough for the chemo to be affective.
- By sckada
- Posted October 30, 2008 at 5:06 pm
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I have low grade cancer too, but it is endermoid. The good thing is that it grows slowly, but that bad news is that it does not seem to respond to chemo well. I've been in remission about 17 months.
- By sarahliz
- Posted October 30, 2008 at 5:22 pm
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You people are giving me hope. I went to New York to Memorial Sloane Kettering today. They said the doctors at duke should have never put me on Birth Control pills after my surgery. They and MD Anderson both said that these estrogen pills may help this cancer spread more. They told me to stop taking these and put me on hormone therapy. Have any of you used hormone therapy for this? Or since you have this type what types of treatments have you used. I am trying to decide what is right for me to try.
- By sckada
- Posted October 30, 2008 at 6:17 pm
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I don't have any advice, but I am being seen at Duke. May I ask who your Dr. was? They never put me on anything with estrogen in it. Duke is supposed to be one of the best hospitals and it makes me nervous to hear they are doing something other doctors don't agree with.
- By sckada
- Posted October 30, 2008 at 6:48 pm
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Here is the link to the longer article about low grade ovarian cancer. I know you met with this doctor so he probably already told you this. I hope this part makes you feel a little better.
Low-grade serous carcinoma represents about ten percent of all serous ovarian cancers. The disease is characterized by a young age at diagnosis - an average of 42 years old, versus more common ovarian cancers, which are generally diagnosed at about 60 years old. In addition, the median overall survival of women with low-grade serous carcinomas is much longer than that of patient with high-grade ovarian cancers-82+ months versus 50-67 months in various reported series.
http://www.sciencedaily.com/releases/2008/03/080310155228.htm
- By sarahliz
- Posted October 30, 2008 at 10:13 pm
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My doctor is Dr. Berchuck, I don't know if I spelled that right. He is suppose to be the best of the best. But he acts like he has never seen this type of cancer before.
- By sckada
- Posted October 30, 2008 at 10:37 pm
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I'm seeing Dr. Valea. Not sure of spelling either. I really like and trust him. I think if I have a recurrence, I may get a second oponion since some of the other oncolgists seem to have more expercience with low grade.
- By Kellie63
- Posted October 31, 2008 at 7:20 am
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I have stage3b but haven't been able to stay in remission. I wish I could find someone with loads of information but that doesn't seem to be in the cards.
I wish you warm wishes and good health. remember always be positive eat well. I have been fighting for 4 yrs and don't plan on giving up anytime soon.
- By MrsSumners
- Posted October 31, 2008 at 1:01 pm
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I have Recurrent Low
grade Serous Carcinoma. I was DX on 10/27/07 was in remission from March 12, 2008 to June 1 after Carbo/Taxol. Now I am on Doxil had my fourth and final scheduled treatment 10/22. I can tell by knowing my body that I am probably not in remission. (will find out at the end of November). Not sure what potion I am going to be offered next. Hopefully I can keep my hair though! It helps a little to tollerate this stubborn disease :) Anyone have similar situation and can tell me what potion they chose after Doxil?? I am being treated by MD Anderson. Also, thank you StillBattling for the positive of 30 or 40 years! That made me feel much better. My cousin has been battling for 37.5 years! We are the only two out of a huge family that has this disease. God Bless to All
- By rhino718
- Posted October 31, 2008 at 1:49 pm
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Sarah-- i have posted to the site several times regarding this type of cancer. I have had this for 37.5 yrs. they found it when i was 29. I more than likely had it from my early 20's. CERTAIN CHEMOS DO NOT WORK ON THIS TYPE OF CANCER.(i say this with tongue in cheek so to speak) ALSO IT DOES NOT GO INTO REMISSION. IT IS VERY SLOW GROWING. ALOT OF THE TUMORS WILL DIE BY THEMSELVES AND CALCIFY. I HAVE HAD NUMEROUS OPERATIONS TO GET RID OF THE LARGER MASSES . THIS CANCER HAS ITS BEGINNIGS IN THE PERITONUM AS SMALL CELLS, AS THEY MATURE THEY FLOAT INTO LYMPHATIC SYSTEM AND ATTACH THEMSELVES TO EPITH. TISSUE.
DO NOT BE AFRAID OF THIS DISEASE--YOU CAN LIVE LONG WITH IT AS LONG AS YOU UNDERSTAND IT AND KEEP ON TOP OF IT. I AM DEALING WITH AFTER AFFECTS OF CHEMO THAT I SHOULD NOT HAVE HAD. I HAVE CHRONIC OBSTRUCTIVE PULMONARY DISORDER SINCE 2004. THIS IS WORSE THAN THE CANCER. I HOPE THIS HELPED YOU SOME.
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