Rare cancer: ovarian clear cell carcinoma

Posted by odette @odette, Jul 18, 2018

Connect with others with ovarian clear cell carcinoma

I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old…
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at…"its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.

What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?

PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo…it hurts REALLY BAD NOT TO HAVE HER SUPPORT

REPLY

I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old…
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at…"its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.

What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?

PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo…it hurts REALLY BAD NOT TO HAVE HER SUPPORT

REPLY
@mollybradley3

I recently had major surgery to get a Large mass removed from my pelvic area. So I had surgery to get it all out, unfortunately had to have hysterectomy at 38yrs old…
So the gyno/oncologist says after "surgery went great, its ALL out, no treatment necessary"
As other nurses/doctors have said "you NEVER tell a patient it's all out, all set, you say surgery went well, she's doing good, just have to wait for the biopsies"
But he didn't, he kept it at…"its all out"
A week later, the doctor that "Got it all"
Come in my room and says, just got the biopsies back, you have 3 different types of cancer in your pelvic area 2 of them were stage 1A and didn't need treatment
But the one that was on my left ovary is called clear cell carcinoma, it's a rare, dangerous one to have, and told me I needed to have chemo to treat it to stop it from spreading. A few days later he and another oncologist from Dana Farber said I didn't need chemo!!!!
I had had it and came to Beth Israel and they are saints, my wound started to heal and their recommendation is to start chemotherapy now before it spreads, and I want to enjoy every minute of everyday, If Chemo now will prevent it from spreading, I'm going to have to do chemo.

What are people's thoughts???
Has anyone been diagnosed with ovarian clear cell carcinoma?
Did people choose to do chemotherapy to use as preventive reasons?

PLEASE PLEASE PLEASE, I want feedback because my mother doesn't think I should be getting chemo…it hurts REALLY BAD NOT TO HAVE HER SUPPORT

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Hi Molly~ I am so very sorry to hear about your diagnosis. I am fighting clear cell carcinoma right now too and have been for 1.3 years. I was told I didn't have cancer either until my biopsies came back. The problem with the clear cell, as you know, is that the doctors can't visually see it until it is a mass and it does not show up in your regular blood work. Once you have a baseline with your CA 125 it can alert you of possible growth. My oncologist believed that he got it all out with my second surgery and suggested that I do 6 rounds of carbo/taxol regimen just as to be safe. I started chemo 4 weeks after my second surgery. I would encourage you to do the chemo since the doctors can not see clear cell carcinoma. I did not want to have any regrets. My cancer came back after only three months and I am continuing to fight it!! I'm only 49 and want to see my grand babies grow up. I believe that I am here still because of the treatments I have and continue to do. This is a crazy, serious, aggressive cancer and needs to be treated!! Please reach out to me if you want to talk more in depth.

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@janice1106

I didn’t ever tell you how sorry I was for your diagnosis and recurrence. This clear cell is not FUN!! My doctor at Oregon’s OHSU MEDICAL CENTER has talked to me about a vaccine ( I think it’s called vacivir)!trial that is very promising, but I don’t have a large enough tumor to qualify. Maybe it would work for you.

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I'm sorry it's taken me so long to respond. It's been a little crazy….I'm getting ready to start radiation. The chemo is not working at all for me and there is not a lot of options right now. We're going to try radiation!! Thank you so much for your kind words…I appreciate them!! As far as what I do for emotional support….right now I have a great network of friends that are walking through this with us. However, my doctors office has put me in contact with COCA (Colorado Ovarian Cancer Alliance) and they have monthly support groups I am reaching out to. I am also thinking about doing some counseling/therapy. When your looking at a terminal illness it jacks with your mind. Some days I can't seem to focus on anything!!! I am sure the state your in has some organization for ovarian cancer.

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@carleenburch

Hi Molly~ I am so very sorry to hear about your diagnosis. I am fighting clear cell carcinoma right now too and have been for 1.3 years. I was told I didn't have cancer either until my biopsies came back. The problem with the clear cell, as you know, is that the doctors can't visually see it until it is a mass and it does not show up in your regular blood work. Once you have a baseline with your CA 125 it can alert you of possible growth. My oncologist believed that he got it all out with my second surgery and suggested that I do 6 rounds of carbo/taxol regimen just as to be safe. I started chemo 4 weeks after my second surgery. I would encourage you to do the chemo since the doctors can not see clear cell carcinoma. I did not want to have any regrets. My cancer came back after only three months and I am continuing to fight it!! I'm only 49 and want to see my grand babies grow up. I believe that I am here still because of the treatments I have and continue to do. This is a crazy, serious, aggressive cancer and needs to be treated!! Please reach out to me if you want to talk more in depth.

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Hi @carleenburch please note that I removed your email address. We recommend that you use private message to share personal contact information to protect yourself from getting unwanted spam.

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@colleenyoung

Hi @carleenburch please note that I removed your email address. We recommend that you use private message to share personal contact information to protect yourself from getting unwanted spam.

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Thanks Colleen. How do I private message her?

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@colleenyoung

Hi @carleenburch please note that I removed your email address. We recommend that you use private message to share personal contact information to protect yourself from getting unwanted spam.

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Never mind I figured out how to private message her. Thanks for all you do!!

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@carleenburch

Never mind I figured out how to private message her. Thanks for all you do!!

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Glad you figured out how to private message, @carleenburch, and that you offered extra support to @mollybradley3. I'd also like to add that by sharing here on the public forum about ovarian clear cell carcinoma, we can all help many more people. OCCC is rare, so the pool of people to share with is small. I'm thrilled that you, Molly, @odette @kenwood1 @janice1106 have all connected here.

I also want to let you all know about a Video Q&A coming up next week, Feb 6 at 9:30 CT. Find out more here:
> Video Q&A about Women's Cancers https://connect.mayoclinic.org/webinar/video-qs-cancers/

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I am DX with clear cell stage 1c, grade 2. Had total hysterectomy. Had my 2nd chemo 2 days ago. Only side effects i have is a bit of numbness on my finger tips and toes. Doing yoga and walking for 40 min every day seems to help. Hope you get excellent care from your medical team.

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@colleenyoung

Glad you figured out how to private message, @carleenburch, and that you offered extra support to @mollybradley3. I'd also like to add that by sharing here on the public forum about ovarian clear cell carcinoma, we can all help many more people. OCCC is rare, so the pool of people to share with is small. I'm thrilled that you, Molly, @odette @kenwood1 @janice1106 have all connected here.

I also want to let you all know about a Video Q&A coming up next week, Feb 6 at 9:30 CT. Find out more here:
> Video Q&A about Women's Cancers https://connect.mayoclinic.org/webinar/video-qs-cancers/

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Thank you Colleen! I will attend the webinar.

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@colleenyoung

Glad you figured out how to private message, @carleenburch, and that you offered extra support to @mollybradley3. I'd also like to add that by sharing here on the public forum about ovarian clear cell carcinoma, we can all help many more people. OCCC is rare, so the pool of people to share with is small. I'm thrilled that you, Molly, @odette @kenwood1 @janice1106 have all connected here.

I also want to let you all know about a Video Q&A coming up next week, Feb 6 at 9:30 CT. Find out more here:
> Video Q&A about Women's Cancers https://connect.mayoclinic.org/webinar/video-qs-cancers/

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Thank you! Planning to participate.

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@miyonggilman

I am DX with clear cell stage 1c, grade 2. Had total hysterectomy. Had my 2nd chemo 2 days ago. Only side effects i have is a bit of numbness on my finger tips and toes. Doing yoga and walking for 40 min every day seems to help. Hope you get excellent care from your medical team.

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Hi @miyonggilman, welcome to the OCCC group. Keep up the good work with doing physical activities when you're able. Have you ever attended yoga specially for people with cancer? Your cancer center may offer them.

How many chemo rounds will you have? What chemo regimen?

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@colleenyoung

Hi @miyonggilman, welcome to the OCCC group. Keep up the good work with doing physical activities when you're able. Have you ever attended yoga specially for people with cancer? Your cancer center may offer them.

How many chemo rounds will you have? What chemo regimen?

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Thank you so much Colleen. Miyong, first timer here.
My oncologist said, 6 round is the plan. Now i am having rashes joint pain, 4th day into my 2nd treatment of Paclitaxel/Carboplatin. I lost 2/3 of my hair so saved off the rest.
No i haven't attended that special Yoga. Will check it out.

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@odette

Just wondering how you are doing. I recently had an appointment and all was well, fortunately. Prior to an appointment, I experience a great deal of anxiety although it seems a bit more manageable as time goes by. My oncologist did not recommend joining a "support group" following treatment as my circumstances are so different, I guess. After feeling very isolated at times, I joined this group as well as other on-line sites. Although I have "met" several women who have similar circumstances to mine, many of them have serious challenges to face. I find that I empathize so much with them, I become distraught at times. Many of them are significantly younger (I am in my early 60s). I continue to pursue my understanding of OCCC which is rare, but research is being done. It is associated with endometriosis so I am very interested in this condition as it afflicts all of the women in my family.
We are actually visiting Arizona this winter as a possible retirement location as we have friends and relatives in the Tucson and Scottsdale areas. One of our criteria is excellent medical care which is available at the Mayo Clinic in Scottsdale. The warm weather is certainly appealing as well.
I hope that you are doing well.

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Hi Odette,
This is Miyong in Tucson. I a snow bird from Wa St.
Been treated for occc at st Mary's for 2 months. Had surgery and on 2nd round of chemo. I love being in Tucson for winter.

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@miyonggilman

Hi Odette,
This is Miyong in Tucson. I a snow bird from Wa St.
Been treated for occc at st Mary's for 2 months. Had surgery and on 2nd round of chemo. I love being in Tucson for winter.

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Hi Miyong, If I understand correctly, you live in Tucson and are having treatment there? There is also a St. Mary's in Rochester, MN where the Mayo Clinic is based.
A diagnosis of clear cell is hard to face, but 1C is early stage and often has good outcomes. I, too, had 6 rounds of chemo although modified because of peripheral neuropathy. I didn't have many other symptoms besides losing my hair which is traumatic, of course. Exercise was very helpful in my recovery, not only physically, but emotionally as well. I also did/and do yoga.
I hope you are getting lots of support from family or friends. Please feel free to write me.
My husband and I are planning to look at a retirement community in Tucson or Scottsdale. Warm weather is appealing. I live in New England.

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