0 Recommendations
Does anyone have this rare type of Ovarian Cancer?
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Recurrent Low-Grade Serous Carcinoma
- By sarahliz
- Posted October 24, 2008 at 4:42 pm · 58 replies
- In Young survivors
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Premarin Surgery Hysterectomy Hormone therapy Ovarian cancer Taxotere Menopause Pain Carboplatin
58 replies
- Oldest first
- Newest first
- By louiseskiingvail
- Posted August 21, 2009 at 2:55 pm
- Report post
Your story is inspiring to me. I am new to this site and i just posted my story. I also found it at the age of 28. We just found it again at the age of 41 last October. Both times i did not do Chemo and i am on an anti estogen hormone, fermarra. I hope i am making the right choose. Please read my intoductory posting.
Thanks again!
- By Shelter
- Posted May 27, 2009 at 3:10 pm
- Report post
Hi I was diagnosed with
Peritoneal
Low Grade Serous Adenocarcinoma
October 29/08
surgery - ( you can read my profile)
followed by 5 rounds of Chemo
if you'd like to keep in touch that'd be great!
Wishing you WELL
take care
-MA
- By mallmomma
- Posted May 27, 2009 at 11:08 am
- Report post
I have worked thru much of this journey. I am currently taking arimidex and have not had many side effects mainly weight gain. But the weight gain could be from too much ice cream. I would feel puny for a few days after cisplatin/taxotere. With doxil the side effects were more with my skin and I used to slather the lotion on. I work with a great group of people and it has been no problem if I did need to leave early or come in late. I found that work would often help. I often felt like I was on the fence as far as feeling bad and work would help keep my mind off of it. Also a lot of water would help when I feel puny. I do sometimes come home tired but fortunately I can take it fairly easy when I get home. Plus I have been tired for 20 years that is nothing new. This disease has changed a lot of things in my life I am glad that it has not severly impacted my job. I do find that I have to write things down more or I might forget. OK I have babbled on enough. Good luck in your journey.
Marion
- By Kat56
- Posted May 22, 2009 at 9:10 pm
- Report post
Do you still work with your diagnosis? Just wondering how some ladies handle this.
- By mallmomma
- Posted May 20, 2009 at 8:50 pm
- Report post
I recently found this site and sure am glad. I also have low grade serous, stage IIIC. I have had surgery, 6 rounds of cisplatin/taxoere thru IV, 2 rounds of cisplatin/taxol thru iP. I seemed to respond but had my first recurrence after only 3 months. Then it was 7 rounds of doxil and a couple rounds of carboplatin, I have now been taking arimidex for a little over 2 months and it seems to be keeping me stable. I seem to have trouble adjusting to the fact that it will most likely never go away. My ca 125 had been staying steady around 55 but went up slightly to 70 after the 1st check since starting arimidex. I decided to get a 2nd opinion at MD Anderson (I live in Houston) I feel a lot better. While I knew that I have a good doctor, it was nice to get the reassurance from mda. The ct scan showed no change since December and the doctor would not change my treatment. That was a relief. Sorry if I have babbled on, I just haven't find many people that can really relate to this.
Marion
- By sarahliz
- Posted May 20, 2009 at 8:23 pm
- Report post
Read my journal entries that I have posted about the opinions of some of the top names in this type of cancer as a way to treat this.
- By Kat56
- Posted May 20, 2009 at 8:18 pm
- Report post
SaraLiz -
Do you know the name of the hormone therapy you are on? Would appreciate any info as I would like to discuss this with my Dr. next week.
Thanks -
Kat
- By packerfan
- Posted May 20, 2009 at 9:07 am
- Report post
sarahliz do you know what type of borderline tumor you had?
- By Sandiestar
- Posted May 19, 2009 at 9:12 pm
- Report post
I am confused is this not the same as borderline low grade tumors?
I thought they looked at surgery to remove the tuomurs for this rather then Chemo?
thanks
- By sarahliz
- Posted May 19, 2009 at 9:10 pm
- Report post
Don't live in fear everyday this disease can allow you to live a healthy life for a long time. First ask your doctor to test your tumors for estrogen receptive. Then make a decision about whether or not hormone therapy is right for you. Since mine are I am having to go through menopause at age 27. So I take hormone therapy but it is to get rid of all my estrogen. I am not sure what stage mine was i think 3 grade A
- By packerfan
- Posted May 19, 2009 at 6:06 pm
- Report post
Do you know what kind of borderline tumors they were. I know there are several. The only two that I can think of off hand are mucinous and serous but I know there are others. I am just wondering because I had a hysterectomy for my borderline tumor and because I was just 35 my doctor put me on hormone replacement. (I got a second opinion and he also said I should take hormone replacement) I was very scared about this but he said it was safe to take. I don't think they tested my tumor to see if it is estrogen receptive. It is so hard to make decisions on what to do when you are not a doctor and have to rely on them to do what is best. I live in fear everyday and I hate it. I feel like I am wasting precious time worrying but I can't stop. Also, do you know what stage your borderline tumors were? Thanks so much for sharing with me.
- By sarahliz
- Posted May 19, 2009 at 3:58 pm
- Report post
I did have borderline tumors at age 22. My tumors were estrogen receptive, which my doctor didn't test for at the time. So in order to prevent me from going into early menopause he ordered me to take estrogen pills. Then five years later my tumors turned into low grade serious carcinoma. So did taking estrogen pills do this, I don't know. I have ask the question and they will not give me a strong answer. At 22 I was told nothing would ever happen to me. It would never turn into anything more. So I can't answer that question.
AS for the hormone therapy. It is going very well, just have complications with muscles. Sometimes I feel like I am 40 instead of 27. I did have some slight carpletunnel issues at first but they have disappeared. Nothing I can't handle, I try to do regular exercise to balance the muscle stuff.
- By packerfan
- Posted May 19, 2009 at 10:11 am
- Report post
sarahliz
I saw one of your posts where you mentioned you were first diagnosed with ovarian cancer at 22. I was just wondering if you had borderline tumors. I was diagnosed with a borderline tumor last year and I am in constant fear that it will return and be worse.
- By Kat56
- Posted May 19, 2009 at 8:58 am
- Report post
Just came across this post - wondering how you are doing. I live with the same diagnosis. Hoping you would be willing to share some information about hormonal treatment. Just checking to see that thread is still active.
- By Amethystmd2559
- Posted May 6, 2009 at 7:58 pm
- Report post
The surgery date is getting closer, just a few more days till Monday. The nerves are starting to get to me. Guess it is more than just the surgery, it is the unknown, exactly what the doctors will find. They may have to do a bowel resection, everything just depends, and that is the worst part of it.
- By Amethystmd2559
- Posted April 25, 2009 at 10:19 am
- Report post
Sarah,
Right now, I am not on any treatment. Dr. Wolf wants to do surgery first, talk about my case at the dispo conference, and then proceed.
The way it was found, I went in to have my gall bladder removed, because tests showed it was not working, and when the surgeon went in, he saw all the tumors. He took a few to biopsy, without removing the gall bladder. This was on April 6. From there, he did a few more tests, then referred me to MDA. I got in very quickly, and have had numerous more tests done.
I am pretty much staying in pain, some days it is more tolerable than others. As much as I am dreading the surgery, at the same time I want all this over with. Of course, as Dr. Wolf said, she may not be able to get all of them out, but she will get as much as she can. She may start me on chemo after the surgery. Just have to wait and see!
One of the doctors I support that works with the GYN clinic says she is really good.
Are you going to have to have surgery?
Bobbie
- By sarahliz
- Posted April 25, 2009 at 4:13 am
- Report post
What is the trial for that you are doing. I two have 100's of tiny tumors growing in my abdomen. Let me know what you are doing for treatment?
- By mixy
- Posted April 24, 2009 at 9:32 pm
- Report post
I started off with Dr. Bevers who I loved almost three years ago. I have now with Dr. Schmeler who is in charge of the trial. She is also very nice and approachable. I will do scans every two months to monitor. My next one is next Friday,May 1 at the ACB building. I would love to talk to you or meet you. Please keep me updated at ekugler@sbcglobal.net. Good hearing from you.
- By Amethystmd2559
- Posted April 24, 2009 at 8:34 pm
- Report post
I am seeing Dr. Wolf, but I also actually work at MD Anderson in the radiology department, as an assistant to some radiologists. My docs read all the xrays, scans, and mri's. The office I work in is in the ACB building, on the 7th floor, where they do regular xrays and ct scans.
Since I am newly diagnosed, I am not sure what will happen after I have surgery on May 11, but Dr. Wolf is presenting my case at a dispo meeting on the 1st of May. I am assuming some other docs will have opinions on how to proceed. One of the funny things about this, I work on the dispo list for one of my docs, he works more on the gyn scans, so I have been asking him lots of questions, and having him read my scans and such so I know what is going on before my doctor visits. One of the perks I love about working there. I would hate to be sitting at home scared to death about everything and having to wait to hear what is going on.
In my case, I had a tah with bso, 10 years ago. However, I had tumors on my ovaries, but they were benign, then at least, they think a few cells were left that have grown into the hundreds of tiny tumors I have now.
I would love to stay in contact, you can email me at my work email, bblaylock@mdanderson.org, or home, anglwndrvn@yahoo.com.
I know this is a rare cancer, but Dr. Wolf said if you have to have ovarian cancer, this is the one to have. It has a better outcome and longer expected life span.
Bobbie
Add to the discussion