Just diagnosed with clear cell

[goPurdue]

Due to a large pelvic mass found during my routine gyne exam I had a complete hysterectomy on 1/14. The pathology report came back as clear cell ovarian cancer 1A. All washings were clear and the tumor was totally encapsulated in the ovary. There were no cancer cells in the uterus or tubes. The reading I have done suggests that chemotherapy post op is helpful in increasing chances of recurrence. I would like some info from those who have dealt with this. I have heard that Northwestern University is doing some work in the field of clear cell ovarian cancer. I know that clear cell is extremely rare and aggressive. I would like any suggestions or info available on what my next move should be.

Thanks,  

[Kat55]

Hi I just want to say that after I read a few posts today that I'm quiting the flax and going back to the fish oil because I just found out that flax has estrogen like compounds and I've been advised to stay away from estrogen. Live and learn.----Kat

[Joy2727]

I also had a clear cell encapsulated in one ovary. I  had a full hysterectomy, then I had a staging surgery where they removed the omentum, my appendix and 20 lymph nodes and did a washing and all was clean. how many lymph nodes did they test for you? anyway, i then was recommended to do 6 tx of carbo/taxol. i had an allergic reaction on the first treatment to the taxol so I used carbo/taxotere (the sister drug). I finished tx at the end of sept. 2007 and my last ca 125 was a 2. I was very pleased. I go again for a ca125 in Feb. I consulted several doctors before the chemo and they all recommended the 6 tx of carbo/taxol. Did you have a ca125 since your tx? I was curious to know what the number was. when did you finish tx? yes, i also developed the cell as a complication of endometriosis. i never knew i even had endometriosis except that in the last year i started bleeding heavy during my period.  my original gyno said he thought it was just a fibroid and that it would shrink after menopause (never bothered to recommend an ultrasound)but i persisted and asked my primary doctor for an ultrasound and that is how I caught it early. I did have a fibroid as well but b/c of my own persistence for the ultrasound is why i caught the cancer early. it was first diagnosed as a complex cyst at 1cm but it kept growing so after the hysterectomy -the ovary was sent to harvard medical and they diagnosed the clear cell. I think more women must demand an ultrasound to catch this horrible cancer early b/c most women catch it at much later stages because ultrasound is not pushed like mammograms. I feel great now and I am just a bit anxious about my next ca 125. Regards, JT

[Kimchi]

I was diagnosed with  clear cell ovarian cancer stage 4.  Had hyste and 12 cycles of carbo and taxol, 4 ct scans and 1 pet scan...nods on liver and lungs have not changed in size or numbers so I decided to stop the chemo. Have been on reishi mushroom, high dosage of vitamin c, fish oil, multi, calcium , e and drink an herb called Jia gu lan for cholestrol before, during and after chemo. will have my 3 month ct scan end of Feb and see what's going on internally.  

[Diana14]

HI.... I can certainly relate to you!!!  My mom had a hyterectomy for a very large tumor in her belly, it was ovarian cancer, washing were normal, CT, PET scans  were all normal.  Pathology reports showed clear cell and chemo was recommended.  My mom refused the chemo because all was normal but i know about this bad kind of cell!!  She finally agreed, She just completed her first of 6 cycles of carbo/taxol.  Absolutly no side affects, not even tired.  She is getting once a weeks for 3 weeks which is considered a cycle, than she rests for 1 week and starts again for 3 more sessions.  It is  scary but we got a second opinion and the same exact thing was told to us.  The once a week treament is lower medice and less side effects.  At the end it will be the same amount of medicine.  PLease keep me posted, I will keep you in my thoughts and prayers....believe me I pray a ton!!!!
Hugs....Diana    

[silver&gold]

Hi Ive written in the above post and was wondering if you could tell me what allergy pills you are taking ? my clear cell cancer was found to be related to the endometriosis i had and i have a lot of allergies myself .  Angie

[Kat55]

I had surgery for clear cell ovarian cancer. I was told that it was related to endometriosis. It was stage 2c. The tumor was very large. I had 8 rounds of taxol and carboplatin. I went to cancer support group meetings and cried alot. Because I read all the bad news about this rare cancer. The worst part of this whole thing was that it took a long time to get a dx and 4 years to get social security checks.  February 14th will be my fifth year anniversary!!  My ca125 has been stabile and low, cat scans are all negative. The 2 things that I try to concern myself with now is weight and cholesterol levels. I also take flaxseed oil or salmon oil. I avoid hormones and soy and I take allergy pills. I've been writing in a journal everyday for almost 5 years. I'd say that you're in a good postion to beat this YOU GO GIRL!!!!  

[gma718]

Just letting you know I am sending positive prayers your way. Stay Strong.  Gia :)

[silver&gold]

Hi I was diagnosed with clear cell ovarian cancer stage 1a in april o5 .  the cancer was encapsulated in one ovary and all washings were clear and other biopsies negative. I live in the uk and was strongly advised to have chemotherapy as this cell type is aggressive if it reccurs . I had six cycles of carboplatin and paclitaxol as an insurance policy they said. Fingers crossed am ok at the moment and hope to stay that way . I found information hard to find as this is a rare (5%)  cell type and statistics look gloomy .  was yours found along with endometriosis? .  Although chemotherapy  is no fun I myself would
do it again as it has given me the best chance of the cancer not reccuring. If there is anything else I can answer for you im more than happy to . Take care Angiexx