Hello! I also was diagnosed with ovarian cancer, but 3c, over a year ago and was treated at Mayo, AZ. I have been in remission for 9 months. I wonder if we were treated by the same extraordinary oncologists. Don’t think I can mention their names. Your great attitude is what helps your recovery. I am also striving towards those goals and a metabolic life style, as recommended at Mayo. Keep up the good work! I am on metformin, how about you?
@starko, So glad you are doing well! I agree that our attitude makes a difference in healing inside and out. The Gyn/Oncs at Mayo, AZ are extraordinary!! I am also on metformin since completing chemo. Additionally, I follow a Mediterranean diet, most of the time.
Sending best wishes,
Stacy
Hello. I know you from other sites and I am glad to see you've joined this one. The OCCC group is small. I continue to do research on this histology. Much of the research is out of Asia, particularly Japan where it far more prevalent. The NCCN guidelines for patients changed its standing in 2019 with regards to OCCC claiming that "treatment of theses ovarian cancers is beyond the scope of this book." In the medical version, they do address specific treatment. Their recommendations now seem more in line with ESMO, the European version as well as the Canadian approach. While research is done in the States, it seems limited compared to elsewhere. Funding for OVCA is lacking in general, and for clear cell seems even more so.
I know that you are doing well, thankfully. The Mayo Clinic is excellent in their care. I grew up going there. Stay in touch. If you come upon any interesting news, I'd love for you to share it. Progress is being made so we can be hopeful.
@odette, Thank you for the welcome and the information on the change to NCCN guidelines, very interesting. I will stay in touch and share any news I may hear. It is my hope that with the funding increase that passed this year that some of it will trickle down to OCCC research. Mayo does have some clear cell specific clinical trials that I'm hoping will garner good results.
Stacy
Yes, I am pleased about the funding increase as well. My gyn/onc told me a while back that there has been a renaissance in OVCA research/treatment. We have every reason to be hopeful. I do follow the research at Mayo and I am aware of the clinical trials. Thanks for joining our group and contributing your news.Stay well.
I have gone to the ACS website many times during this process, but my medical team cautioned me about joining a group of survivors with OC. OCCC is so rare. I was delighted to join Connect and find others like myself. I hope to hear from Kenwood, but I know how difficult this process can be...one day at a time. I also wrote to Felicidad who "liked"my message. We share several things in common. I hope to hear bacck from her as well. Thank you for your encouragement.
I believe that my team felt under the circumstances it would not be wise for me to join a survivors' group. In retrospect, three years later, I think they were right. At one point, they even discouraged too much participation in these on-line forum which was also a good choice for me. I think it really depends on the individual and their particular situation. I had a rare form of OC (unlike the majority of women with HGSOC). Although I don't check/write on these sites regularly, I have established relationships with other women with similar diagnoses. I will certainly communicate with anyone who writes to me, but I only have experience/knowledge about my specific histology. For me, doing exhaustive research was helpful and I am in communication with researchers/doctors with expertise in this specific area.
I hope that you are finding the support you need and perhaps a survivors' group would be beneficial at this time. It really depends on what you think is best for you. Has your team advised you regarding this matter?
@colleenyoung and @odette Hello, I am brand new to the group. Hi to everyone else, thank you for sharing your stories. I am in the beginning stages of all of this and still in shock and disbelief. I am a healthy 46 year old woman that just had a routine laparoscopy to remove some fibroids and cysts. Unfortunately during the surgery they found a tumor on my left ovary and determined it was ovarian clear cell carcinoma due to severe endometriosis that I didn't even know that I had. I have to wait 3 weeks to get my hysterectomy/staging surgery since I just had surgery. However, I am quite concerned because I am rapidly losing weight and have no appetite (could be the stress of it all). Anyway I live in California and UCSD is the option my insurance covers but because this is such a rare cancer I also want to consider Mayo and MD Anderson. Honestly, I wish I could go to Europe (I lived there for the last 10 years) and they seem to be at the forefront of research as well as Asia. Any guidance you can provide would be so greatly appreciated as I am beyond overwhelmed. I never saw this coming in a million years. I am not sure if you are allowed to recommend oncologists on this forum but if you cannot please let me know how I reach out to you individually? Thank you SO much for any support you can provide. All the best, Stacie
Dear Stacie, I'm so sorry that you've become a member of this "group" as no one expects this to happen. I was absolutely stunned myself as I was very healthy and had no risk factors to my knowledge. In fact, I had had an endometrioma about 18 years prior to my diagnosis which they didn't seem concerned about and had reassured me would never develop in to ovarian cancer, my concern at the time They did inquire as to whether or not I had been diagnosed previously with endometriosis. In retrospect, I did have a history of many of the symptoms, but they had always been dismissed by doctors. However, all of the women in my family have endometriosis and consequently various health problems (infertility, etc.). I also had the few recognized "protective" factors.
Ovarian clear cell is very rare although I am in touch with several women online with similar diagnoses. You may want to join Inspire which has a group of women with OCCC. You are correct in that it is more prevalent in Asia and consequently much of the research originates there, especially Japan. I have done exhaustive research myself over the past three years. I also consult research out of Europe (see ESMO) as I, too, have lived in Europe many times and have confidence in their research. Canada also has a different approach to treatment, especially for early stage OCCC. Your staging will be very important in determining your treatment. In the United States, the standard for care and treatment is the NCCN which you can go to for information although I've not found the recent changes regarding OCCC as helpful.
This is a terrifying experience and I understand your fear. It is also a very challenging time to be dealing with such an ordeal. If you can communicate with your surgeon/oncologist sooner than three weeks, it might help you. My surgeon contacted me with pathology and cytology results as soon as he received them. Your team will be there to support you. I lost weight and had no appetite, too, as I was overwhelmed and in shock. I hope that you have a support system in place (family, friends) who can go to appointments with you. It is important to have another set of ears and someone who can record info, help with questions you've written prior to the appointments. Try to eat well and exercise. The exercise helped me not only physically, but emotionally. Yoga and meditation were helpful to me as well as massage.
I had my treatment at Dana Farber in Boston, MA and additional advice from the Mayo Clinic. I would wait for the results so you can think more clearly about how to proceed.
Have hope. Many of us with OCCC are doing well. I will be happy to help you.
@colleenyoung and @odette Hello, I am brand new to the group. Hi to everyone else, thank you for sharing your stories. I am in the beginning stages of all of this and still in shock and disbelief. I am a healthy 46 year old woman that just had a routine laparoscopy to remove some fibroids and cysts. Unfortunately during the surgery they found a tumor on my left ovary and determined it was ovarian clear cell carcinoma due to severe endometriosis that I didn't even know that I had. I have to wait 3 weeks to get my hysterectomy/staging surgery since I just had surgery. However, I am quite concerned because I am rapidly losing weight and have no appetite (could be the stress of it all). Anyway I live in California and UCSD is the option my insurance covers but because this is such a rare cancer I also want to consider Mayo and MD Anderson. Honestly, I wish I could go to Europe (I lived there for the last 10 years) and they seem to be at the forefront of research as well as Asia. Any guidance you can provide would be so greatly appreciated as I am beyond overwhelmed. I never saw this coming in a million years. I am not sure if you are allowed to recommend oncologists on this forum but if you cannot please let me know how I reach out to you individually? Thank you SO much for any support you can provide. All the best, Stacie
Hi Stacy. I would be most interested in hearing of the research you are referring to in Europe and Japan. Was not aware of any innovative treatments in those countries. My treatment was at Mayo Clinic, AZ with what I believe to be the very best oncologists. They are at the front lines of new research, using IP infusions that definitely worked for my stage 3C cancer. I also enjoyed the bedside manner in both my oncologists, one sat with me during my first chemo. They both took calls and SMSs 24/7 and responded immediately. They truly care. I am now in remission, thanks to them.
Dear Stacie, I'm so sorry that you've become a member of this "group" as no one expects this to happen. I was absolutely stunned myself as I was very healthy and had no risk factors to my knowledge. In fact, I had had an endometrioma about 18 years prior to my diagnosis which they didn't seem concerned about and had reassured me would never develop in to ovarian cancer, my concern at the time They did inquire as to whether or not I had been diagnosed previously with endometriosis. In retrospect, I did have a history of many of the symptoms, but they had always been dismissed by doctors. However, all of the women in my family have endometriosis and consequently various health problems (infertility, etc.). I also had the few recognized "protective" factors.
Ovarian clear cell is very rare although I am in touch with several women online with similar diagnoses. You may want to join Inspire which has a group of women with OCCC. You are correct in that it is more prevalent in Asia and consequently much of the research originates there, especially Japan. I have done exhaustive research myself over the past three years. I also consult research out of Europe (see ESMO) as I, too, have lived in Europe many times and have confidence in their research. Canada also has a different approach to treatment, especially for early stage OCCC. Your staging will be very important in determining your treatment. In the United States, the standard for care and treatment is the NCCN which you can go to for information although I've not found the recent changes regarding OCCC as helpful.
This is a terrifying experience and I understand your fear. It is also a very challenging time to be dealing with such an ordeal. If you can communicate with your surgeon/oncologist sooner than three weeks, it might help you. My surgeon contacted me with pathology and cytology results as soon as he received them. Your team will be there to support you. I lost weight and had no appetite, too, as I was overwhelmed and in shock. I hope that you have a support system in place (family, friends) who can go to appointments with you. It is important to have another set of ears and someone who can record info, help with questions you've written prior to the appointments. Try to eat well and exercise. The exercise helped me not only physically, but emotionally. Yoga and meditation were helpful to me as well as massage.
I had my treatment at Dana Farber in Boston, MA and additional advice from the Mayo Clinic. I would wait for the results so you can think more clearly about how to proceed.
Have hope. Many of us with OCCC are doing well. I will be happy to help you.
I am so sorry to hear about your story and your battle with OCCC, but I am so happy to hear you are doing well. I sincerely appreciate your advice and guidance. I am still getting my 2nd and 3rd opinions as I am not sure I want to have my surgery at UCSD. So as of right now I have not settled on an oncology team. Plus only one pathology team has reviewed my tissue so I do want to get a second opinion on the diagnosis. As you well know it is a lot to take in and your life changes over night. Plus I am still in pain from surgery and recovering so it is a lot. I know once I have a plan, surgery date and course of action I will feel much better. May I ask you a personal question did you have an open incision for your surgery or a robotic surgery. They want to do open on me as the endometriosis has spread to other organs, but I would really rather avoid the open surgery with the huge incision down by tummy. Thank you so much and I am so grateful to have found this support group. A girlfriend sent it to me.
Hi Stacy. I would be most interested in hearing of the research you are referring to in Europe and Japan. Was not aware of any innovative treatments in those countries. My treatment was at Mayo Clinic, AZ with what I believe to be the very best oncologists. They are at the front lines of new research, using IP infusions that definitely worked for my stage 3C cancer. I also enjoyed the bedside manner in both my oncologists, one sat with me during my first chemo. They both took calls and SMSs 24/7 and responded immediately. They truly care. I am now in remission, thanks to them.
Thank you so much for your response. That is such great news that you had such an amazing experience at Mayo Clinic, AZ and that you are in remission. I am so happy for you. I sent you a private message wondering if you would be willing to share the name of your oncologist there. Did you do your surgery at Mayo clinic as well or just your treatments? This is where I have focused my European (ESMO - Oncology Pro). Also, I lived in France for the last 10 years, so I have discussed my diagnosis with friends in the oncology world over there. I really appreciate you sharing your story about your experience at Mayo, AZ. It sounds like such a positive one.
Connect
Connect
Like
Helpful
Hug
@starko, So glad you are doing well! I agree that our attitude makes a difference in healing inside and out. The Gyn/Oncs at Mayo, AZ are extraordinary!! I am also on metformin since completing chemo. Additionally, I follow a Mediterranean diet, most of the time.
Sending best wishes,
Stacy
-
Like -
Helpful -
Hug
1 Reaction@odette, Thank you for the welcome and the information on the change to NCCN guidelines, very interesting. I will stay in touch and share any news I may hear. It is my hope that with the funding increase that passed this year that some of it will trickle down to OCCC research. Mayo does have some clear cell specific clinical trials that I'm hoping will garner good results.
Stacy
-
Like -
Helpful -
Hug
2 ReactionsYes, I am pleased about the funding increase as well. My gyn/onc told me a while back that there has been a renaissance in OVCA research/treatment. We have every reason to be hopeful. I do follow the research at Mayo and I am aware of the clinical trials. Thanks for joining our group and contributing your news.Stay well.
-
Like -
Helpful -
Hug
2 ReactionsOdette: why did your cancer team caution you against joining a survivors' group? Susan54
I believe that my team felt under the circumstances it would not be wise for me to join a survivors' group. In retrospect, three years later, I think they were right. At one point, they even discouraged too much participation in these on-line forum which was also a good choice for me. I think it really depends on the individual and their particular situation. I had a rare form of OC (unlike the majority of women with HGSOC). Although I don't check/write on these sites regularly, I have established relationships with other women with similar diagnoses. I will certainly communicate with anyone who writes to me, but I only have experience/knowledge about my specific histology. For me, doing exhaustive research was helpful and I am in communication with researchers/doctors with expertise in this specific area.
I hope that you are finding the support you need and perhaps a survivors' group would be beneficial at this time. It really depends on what you think is best for you. Has your team advised you regarding this matter?
-
Like -
Helpful -
Hug
1 Reaction@colleenyoung and @odette Hello, I am brand new to the group. Hi to everyone else, thank you for sharing your stories. I am in the beginning stages of all of this and still in shock and disbelief. I am a healthy 46 year old woman that just had a routine laparoscopy to remove some fibroids and cysts. Unfortunately during the surgery they found a tumor on my left ovary and determined it was ovarian clear cell carcinoma due to severe endometriosis that I didn't even know that I had. I have to wait 3 weeks to get my hysterectomy/staging surgery since I just had surgery. However, I am quite concerned because I am rapidly losing weight and have no appetite (could be the stress of it all). Anyway I live in California and UCSD is the option my insurance covers but because this is such a rare cancer I also want to consider Mayo and MD Anderson. Honestly, I wish I could go to Europe (I lived there for the last 10 years) and they seem to be at the forefront of research as well as Asia. Any guidance you can provide would be so greatly appreciated as I am beyond overwhelmed. I never saw this coming in a million years. I am not sure if you are allowed to recommend oncologists on this forum but if you cannot please let me know how I reach out to you individually? Thank you SO much for any support you can provide. All the best, Stacie
-
Like -
Helpful -
Hug
1 ReactionDear Stacie, I'm so sorry that you've become a member of this "group" as no one expects this to happen. I was absolutely stunned myself as I was very healthy and had no risk factors to my knowledge. In fact, I had had an endometrioma about 18 years prior to my diagnosis which they didn't seem concerned about and had reassured me would never develop in to ovarian cancer, my concern at the time They did inquire as to whether or not I had been diagnosed previously with endometriosis. In retrospect, I did have a history of many of the symptoms, but they had always been dismissed by doctors. However, all of the women in my family have endometriosis and consequently various health problems (infertility, etc.). I also had the few recognized "protective" factors.
Ovarian clear cell is very rare although I am in touch with several women online with similar diagnoses. You may want to join Inspire which has a group of women with OCCC. You are correct in that it is more prevalent in Asia and consequently much of the research originates there, especially Japan. I have done exhaustive research myself over the past three years. I also consult research out of Europe (see ESMO) as I, too, have lived in Europe many times and have confidence in their research. Canada also has a different approach to treatment, especially for early stage OCCC. Your staging will be very important in determining your treatment. In the United States, the standard for care and treatment is the NCCN which you can go to for information although I've not found the recent changes regarding OCCC as helpful.
This is a terrifying experience and I understand your fear. It is also a very challenging time to be dealing with such an ordeal. If you can communicate with your surgeon/oncologist sooner than three weeks, it might help you. My surgeon contacted me with pathology and cytology results as soon as he received them. Your team will be there to support you. I lost weight and had no appetite, too, as I was overwhelmed and in shock. I hope that you have a support system in place (family, friends) who can go to appointments with you. It is important to have another set of ears and someone who can record info, help with questions you've written prior to the appointments. Try to eat well and exercise. The exercise helped me not only physically, but emotionally. Yoga and meditation were helpful to me as well as massage.
I had my treatment at Dana Farber in Boston, MA and additional advice from the Mayo Clinic. I would wait for the results so you can think more clearly about how to proceed.
Have hope. Many of us with OCCC are doing well. I will be happy to help you.
-
Like -
Helpful -
Hug
1 ReactionHi Stacy. I would be most interested in hearing of the research you are referring to in Europe and Japan. Was not aware of any innovative treatments in those countries. My treatment was at Mayo Clinic, AZ with what I believe to be the very best oncologists. They are at the front lines of new research, using IP infusions that definitely worked for my stage 3C cancer. I also enjoyed the bedside manner in both my oncologists, one sat with me during my first chemo. They both took calls and SMSs 24/7 and responded immediately. They truly care. I am now in remission, thanks to them.
-
Like -
Helpful -
Hug
1 ReactionI am so sorry to hear about your story and your battle with OCCC, but I am so happy to hear you are doing well. I sincerely appreciate your advice and guidance. I am still getting my 2nd and 3rd opinions as I am not sure I want to have my surgery at UCSD. So as of right now I have not settled on an oncology team. Plus only one pathology team has reviewed my tissue so I do want to get a second opinion on the diagnosis. As you well know it is a lot to take in and your life changes over night. Plus I am still in pain from surgery and recovering so it is a lot. I know once I have a plan, surgery date and course of action I will feel much better. May I ask you a personal question did you have an open incision for your surgery or a robotic surgery. They want to do open on me as the endometriosis has spread to other organs, but I would really rather avoid the open surgery with the huge incision down by tummy. Thank you so much and I am so grateful to have found this support group. A girlfriend sent it to me.
Thank you so much for your response. That is such great news that you had such an amazing experience at Mayo Clinic, AZ and that you are in remission. I am so happy for you. I sent you a private message wondering if you would be willing to share the name of your oncologist there. Did you do your surgery at Mayo clinic as well or just your treatments? This is where I have focused my European (ESMO - Oncology Pro). Also, I lived in France for the last 10 years, so I have discussed my diagnosis with friends in the oncology world over there. I really appreciate you sharing your story about your experience at Mayo, AZ. It sounds like such a positive one.