Hello Heather. I'm so sorry that you have gone through this experience, but I'm glad you found us. We are a small group because OCCC is rare as you mentioned. I have no expertise in this matter, just personal experience and the extensive research I have done. I have never encountered anyone with bilateral CCOC. Most women have/ had endometriosis with an endometrioma being the origin of the lesion. I believe that there is a clear cell uterine cancer which is an endometrial cancer, but I don't really know anything about it. Did you receive a second opinion? What stage are you?
Taxol/carbo is the typical regimen given and everyone responds differently. I found exercise, meditation, yoga helpful during this process. Healthy nutrition.
In terms of research, much of it comes out of Asia, particularly Japan as CCOC is far more prevalent in that population. I would recommend the NCCN (USA), ESMO (Europe), Canada in addition.
There is a group of women on INSPIRE with CCOC that are very supportive. I'm on several sites myself. The Mayo Clinic is an outstanding medical institution and I always follow their research as well.
Sorry I can't provide you with any additional information, but do feel free to write any time.
Hello Heather. I'm so sorry that you have gone through this experience, but I'm glad you found us. We are a small group because OCCC is rare as you mentioned. I have no expertise in this matter, just personal experience and the extensive research I have done. I have never encountered anyone with bilateral CCOC. Most women have/ had endometriosis with an endometrioma being the origin of the lesion. I believe that there is a clear cell uterine cancer which is an endometrial cancer, but I don't really know anything about it. Did you receive a second opinion? What stage are you?
Taxol/carbo is the typical regimen given and everyone responds differently. I found exercise, meditation, yoga helpful during this process. Healthy nutrition.
In terms of research, much of it comes out of Asia, particularly Japan as CCOC is far more prevalent in that population. I would recommend the NCCN (USA), ESMO (Europe), Canada in addition.
There is a group of women on INSPIRE with CCOC that are very supportive. I'm on several sites myself. The Mayo Clinic is an outstanding medical institution and I always follow their research as well.
Sorry I can't provide you with any additional information, but do feel free to write any time.
Thank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?
Thank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?
The NCCN provides the standards/recommendations for cancer treatment in the U.S. I follow the evidence based research with references, including some from outside the U.S. I consult the pubmed.ncbi.nlm.nih.gov for recent research. You will quickly become adept at finding the latest research.
Thank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?
Hi @heather2020, I'd like to add my welcome. It sounds like your oncologist and oncology team is being very thorough. With respect to getting a second opinion on the pathology report, I might recommend looking into that. It is possible that your tumor samples are kept for a period of time. It's worth asking.
Hi @heather2020, I'd like to add my welcome. It sounds like your oncologist and oncology team is being very thorough. With respect to getting a second opinion on the pathology report, I might recommend looking into that. It is possible that your tumor samples are kept for a period of time. It's worth asking.
HI @heather2020 Welcome đŸ™‚ I was diagnosed with 3a OCCC at 47 a little over 3 years ago, treated at Mayo in Phoenix. I also had a fairly uncommon diagnosis, where cancer was found in one ovary and a lymph node. I second the recommendation by Odette that you also visit the Inspire site. There are many clear cell ladies there and some who have had radiation as part of their frontline treatment. Radiation seems to be more common with a clear cell diagnosis in Canada. Sending best wishes as you continue through treatment.
HI @heather2020 Welcome đŸ™‚ I was diagnosed with 3a OCCC at 47 a little over 3 years ago, treated at Mayo in Phoenix. I also had a fairly uncommon diagnosis, where cancer was found in one ovary and a lymph node. I second the recommendation by Odette that you also visit the Inspire site. There are many clear cell ladies there and some who have had radiation as part of their frontline treatment. Radiation seems to be more common with a clear cell diagnosis in Canada. Sending best wishes as you continue through treatment.
Hello
Recent removal of CC ovarian tumor. Grade 1..no mets to any if the intraoperative specimens. Plan PET scan 4 weeks post op. If no further cancer, thoughts on treatment options
@mema2 Hello, and welcome. That’s very good news that the clear cell carcinoma was removed with no evidence in any in the specimens sent to pathology. Was your surgery a bilateral oophorectomy (both ovaries removed)? How are you feeling? A PET scan will detect signs of activity where there is glucose uptake activity - will you have a PET/CT or PET/MR that will also show bones, organs, and tissue also? I am hopeful after your surgery that the PET will be negative. If there are no signs of cancer shown in the PET Scan I would imagine that you will return to your oncologist on a regular basis for what is called cancer surveillance. That way you will be checked on a regular basis.
I am on a 4-month schedule for cancer surveillance where I return every four months and have a CT Scan and physical exam. I had endometrial cancer (endometrioid adenocarcinoma, FIGO 1, Stage 1a) in 2019 and these regular follow-up appointments revealed a recurrence in 2021. I had radiation therapy for the recurrence and in retrospect I am so glad that I keep those regular follow-up appointments. I have another one coming up next week.
@mema2 Hello, and welcome. That’s very good news that the clear cell carcinoma was removed with no evidence in any in the specimens sent to pathology. Was your surgery a bilateral oophorectomy (both ovaries removed)? How are you feeling? A PET scan will detect signs of activity where there is glucose uptake activity - will you have a PET/CT or PET/MR that will also show bones, organs, and tissue also? I am hopeful after your surgery that the PET will be negative. If there are no signs of cancer shown in the PET Scan I would imagine that you will return to your oncologist on a regular basis for what is called cancer surveillance. That way you will be checked on a regular basis.
I am on a 4-month schedule for cancer surveillance where I return every four months and have a CT Scan and physical exam. I had endometrial cancer (endometrioid adenocarcinoma, FIGO 1, Stage 1a) in 2019 and these regular follow-up appointments revealed a recurrence in 2021. I had radiation therapy for the recurrence and in retrospect I am so glad that I keep those regular follow-up appointments. I have another one coming up next week.
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Hello Heather. I'm so sorry that you have gone through this experience, but I'm glad you found us. We are a small group because OCCC is rare as you mentioned. I have no expertise in this matter, just personal experience and the extensive research I have done. I have never encountered anyone with bilateral CCOC. Most women have/ had endometriosis with an endometrioma being the origin of the lesion. I believe that there is a clear cell uterine cancer which is an endometrial cancer, but I don't really know anything about it. Did you receive a second opinion? What stage are you?
Taxol/carbo is the typical regimen given and everyone responds differently. I found exercise, meditation, yoga helpful during this process. Healthy nutrition.
In terms of research, much of it comes out of Asia, particularly Japan as CCOC is far more prevalent in that population. I would recommend the NCCN (USA), ESMO (Europe), Canada in addition.
There is a group of women on INSPIRE with CCOC that are very supportive. I'm on several sites myself. The Mayo Clinic is an outstanding medical institution and I always follow their research as well.
Sorry I can't provide you with any additional information, but do feel free to write any time.
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1 ReactionThank you, Odette. I am stage 3C. I haven't looked into a second opinion, mostly because I already like my oncologist quiet a bit. If I were to get a second opinion it would be on the pathology report, but I assume that's not possible since I doubt they kept my tumor samples at the hospital. My doctor mentioned that the folks doing the pathology were some of the best in the area. He also took my case to a "tumor board" with local oncologists to discuss it, since I present so differently. It's just confusing that I don't have typical symptoms/history for OCCC. Treatment for uterine and ovarian cancer with CCC is similar. The only difference, since they are not 100% sure of its origin, is that I will get some radiation therapy after chemo is complete. That's typical for uterine cancer. I will look at the sites you recommended, thank you! Do these sites report on the studies from Asia as well?
The NCCN provides the standards/recommendations for cancer treatment in the U.S. I follow the evidence based research with references, including some from outside the U.S. I consult the pubmed.ncbi.nlm.nih.gov for recent research. You will quickly become adept at finding the latest research.
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Helpful -
Hug
1 ReactionHi @heather2020, I'd like to add my welcome. It sounds like your oncologist and oncology team is being very thorough. With respect to getting a second opinion on the pathology report, I might recommend looking into that. It is possible that your tumor samples are kept for a period of time. It's worth asking.
How often are you getting chemo?
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1 ReactionThank you, Colleen. I will ask. I am getting chemo every three weeks. They have planned six cycles. Two treatments down, four to go.
HI @heather2020 Welcome đŸ™‚ I was diagnosed with 3a OCCC at 47 a little over 3 years ago, treated at Mayo in Phoenix. I also had a fairly uncommon diagnosis, where cancer was found in one ovary and a lymph node. I second the recommendation by Odette that you also visit the Inspire site. There are many clear cell ladies there and some who have had radiation as part of their frontline treatment. Radiation seems to be more common with a clear cell diagnosis in Canada. Sending best wishes as you continue through treatment.
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1 ReactionThank you, Stacy!
Hello
Recent removal of CC ovarian tumor. Grade 1..no mets to any if the intraoperative specimens. Plan PET scan 4 weeks post op. If no further cancer, thoughts on treatment options
@mema2 Hello, and welcome. That’s very good news that the clear cell carcinoma was removed with no evidence in any in the specimens sent to pathology. Was your surgery a bilateral oophorectomy (both ovaries removed)? How are you feeling? A PET scan will detect signs of activity where there is glucose uptake activity - will you have a PET/CT or PET/MR that will also show bones, organs, and tissue also? I am hopeful after your surgery that the PET will be negative. If there are no signs of cancer shown in the PET Scan I would imagine that you will return to your oncologist on a regular basis for what is called cancer surveillance. That way you will be checked on a regular basis.
I am on a 4-month schedule for cancer surveillance where I return every four months and have a CT Scan and physical exam. I had endometrial cancer (endometrioid adenocarcinoma, FIGO 1, Stage 1a) in 2019 and these regular follow-up appointments revealed a recurrence in 2021. I had radiation therapy for the recurrence and in retrospect I am so glad that I keep those regular follow-up appointments. I have another one coming up next week.
When will you see your oncologist again?
Hi
I had one ovary removed 10 years ago, no cancer. PET scan 2 weeks.. along with a mammogram. I am 61 far from a young asian woman hahaha!
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