Anyone out there with clear cell ovarian cancer ?

[Silver]

Hi , I am 43 and was diagnosed with clear cell cancer stage 1a , I was told it was caused by the endometriosis that I had  . Is there anyone out there with this cell type as I have been told it is quite rare and that it is hard to treat because of chemo resistance ? . I would be pleased to hear from anyone about this  . Thanks-Silver

[Kimchi]

Just wondering how your mom is doing? Is she on chemo or anything else??

[Kimchi]

I have clear cell oc and diagnosed as stage 4 due to fluids in abdomen and diaphram...Scan showed minute nodus on both lungs and liver and was put on carbo/taxol for 12 months.  Went for second opinion and was advised to stop the chemo cause the nods had not changed, multiplied or shrunk after 12 times (3 scans later)a nd 2nd doctor thinks they maybe cysts or stuff that has been there since before starting and what I was doing now with the chemo was poisoning my organs as s there were no signs of cancer. He also told me to have periodic CA125 tests and if numbers go crazy, then have another scan done and then maybe surgery or/and more chemo.  Very glad to have a break right now...Not sure what to say for your Mom, it's her decision, maybe she might want to monitor the cancer this same way.,

[diamond333]

Hi Diana ,
when I had my reports back from the path lab they said that my cancer was contained in the ovary stage 1a but they still reccommended the chemo as the clear cell type can be very aggressive if it returns . Reluctantly I agreed that a couple of years down the line I didn,t want to be in worse trouble from this horrible cruel disease so I took their advice and fingers crossed am still ok . I finished my chemo in sept 05 and so far no reoccurance. Chemo is no picnic but is certainly doable , I had 6 treatments even though they said that they had probarbly cured me with the surgery alone I would do it again as you never know if 1 cancer cell is lurking ready to multiply . I know it must be so hard for you in this situation but it comes down to personal choice , i hope all goes well whatever your mum decides to do . Keep me posted  about how you are and take care   love silver xx

[Diana14]

Hi Silver, i hope you check this page.  My mom, was diagnosed with clear cell from a large cyst in her abdomen.  She is cancer free but they want her to have carbo/taxol and she is refusing since all her scans have come back normal.. i have explained the consequenses but she is very stubborn and doesn't want "poisons" in her body.
SHe had a hyterectomy and the cancer was contained within the mass.  I'm going crazy tryng to have go along with the chemo.  What can i do?

[Silver]

Hi there  ,  thanks for your message and I think you have a really great attitude . I am going to have to just take one day at a time and try to stop worrying and live my life . How lovely to have two little ones , I have got a 17 year old boy who is out and about quite a lot and i must admit I wonder where all of the years have gone as it seems only yesterday that I was pushing him on the swings at the park !!. It must have been tough when you  you were having the chemo with the little ones to look after . I have been reading some of the other messages on the forum and I guess I am lucky compared to some others .  Thanks for your support and keep well , best wishes Angie

[loralai]

No, I did not have any endometriosis. They only found mine due to some heavy irregular bleeding and then my 1 year followup for my daugher came about the same time. My oncol even said he didn't think it was cancer and then WHAM...to my surprise it was. All my biopsies from the surgery came back clear, as did my first CT scan and today I just got a letter telling my my mammogram was also clear. My cyst that contained the tumor was very large by the time I had my surgery. I always look at my girls kickball and think...man that thing was that big! Thank God for the cyst & bleeding or I may never have known it was there. I do worry about the clear cell part of it all. I think because there is so little information and unclear statistics. I try to tell myself this...if my doctors aren't making a big to do about it then I can't either right now. Again, I might not have the right attitude but it's the one that is getting through this and being a mom to my 2 & 3 year old girls :) I actually feel better than I have in a LONG time. I too get nervous around testing times but I truly believe that a positive attitude plays a huge part in it all. I haven't and will not let this slow me down. I rest when I can but I don't like to not be busy so it's probably not as much as I should. I got through the chemo treatments pretty good with little side effects. I have a lot of angels watching over me I guess! Anyway...please write anything you need to to me and the forum. It got me through the tough times and I check it out here and there. It's all going to be okay...keep telling yourself that!  xo Lori

[Silver]

Hi Libby , I have finished chemo , I am getting myself in a state as I have got to go for a 3 month check and my stomach is churning . I was on carbo/ taxol for 6 cycles and had the usual side effects and put on a lot of weight due to the steroids . I decided to sign up to this forum as I wanted to see if there was anyone else with this type that was found with endometriosis . I should feel optomistic as I had my surgery in april 2005 but as I say I have the hospital appointment looming and its causing me a lot of anxiety . How are you ? is the chemo causing you many side effects? .
I have had no one to talk to about this horrible journey we are going through at least not anyone until this forum . I hope you are feeling ok  and thanks for your support . If there is anything you might want to know maybe I could help . Thanks again -Silver

[libbyisi]

Hi Silver, I know that appalling pain you speak of due to endometriosis and too was diagnosed following surgery. Having the clear cell form of this cancer does not make it a hopeless situation, there are options for treatment.  In fact, I am allergic to taxol (which I received during the first two rounds of treatment) and so I'm being switched to taxotere, which has been found to be pretty much equally as effective.  I just wanted to write to tell you to that there are options available.  What drugs have the doctors suggested for you?  I hope that you are well.  Best, Libby

[Silver]

Hi Libby , thanks for your message , I suffered apalling pain with the endometriosis and was only diagnosed with it during surgery to remove complex cysts . Its great to know that your specialist says you will be fine ,i will have to start being more optomistic but have been on a general downer recently . Hope everything goes well for you . Best wishes - Silver

[libbyisi]

Hi, I'm 24 and diagnosed with 1c clear cell carcinoma ovca in endometriosis.  I am currently being treated with taxol/carbo, and while I know that this is a rare and agressive form of ovca, I have never heard that it is chemo resistant. My doctors have expressed that this treatment will be successful.  
Best of luck!  Libby

[Silver]

Hi , I do understand what you mean when you say about not finding out too much , I wish I didn,t  worry so much . When I go for checkups at the hospital i see someone different every time and they are giving me different and sometimes conflicting info .Did you have endometriosis as well like me ? as they have told me this was the cause of my cancer . I am going to look at a website that someone on the forum gave me the address of . Thanks for your reply and keep well , best wishes - Silver

[Silver]

Hi Paula, thanks very much for that info. I am going to go and have a browse now. I will keep you posted, thanks again - Silver

[loralai]

I was diagnosed in August with Stage 1C clear cell. My doctors also said it's rare but didn't offer too much information. I also checked on the internet a bit and didn't find much. I finished 6 rounds of chemo in Dec and just has my first scan come back clear and am waiting on my first CA 125 test since this all began. Honestly, I try not to read too much right now about it. I am just trying to take better care of myself and keep my head positive. I know being informed and proactive is good but right now I just try to assume the best. If I get any info in my treatment travels I will pass it on to you. Good luck and keep up your spirits!! xo Lori

[PPhelps]

http://wes.endometriosis.org/ejournal_april2006-cancer.htm

Try this link and google Ovarian Cancer-Endometriosis

Paula

[Silver]

Hi ,  I would be grateful for any info at all about this . Thanks very much for your response as im new to this forum . Best wishes - silver

[PPhelps]

There is a lady on another forum that had OVCA because of endo. I did some research about it, and I had found some documentation about it, but not awhole lot. This was last year some time. But if I remember correctly. I thought it said this type of OVCA had good results with chemo.  I'll have to see if I can find it again.

Paula

[Silver]

Hi , thanks for your message , any positive infomation is always good .  I have tried to find out about this cell type but there is very little reported on it . I hope your mum is coping ok with the chemo , very best wishes to her and thanks again for sharing this info with me . Take care and best wishes - Silver

[4mom]

Hi Silver-

My mom who is 55 just finished her 6th chemo treatment for stage 2c ovca- clear cell. Her gyn.onocogist at johns hopkins and she said that stage, surgery and age are more important than cell type. She asked about the chemo resistence- but he said it is not true- just that the CA-125 levels are not accurate for clear cell. Before surgery, my moms was 11.
She got her first CT scan and everything was clean. We just have to hope and pray....

Hope this helps.
Best wishes to you.