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.
I did not realize that you would need surgery again. I assumed that you had optimal debulking with your initial surgical procedure.What is this next operation? If you've not had the tumor removed, they will probably recommend an abdominal hysterectomy (so as to avoid rupture of the ovary) which I believe is typically done with a vertical incision. My incision healed quickly and is barely visible, but I know everyone responds differently (scar tissue, etc). I was postmenopausal at the time of my diagnosis so there was no endometriosis present other than the endometrioma/OCCC.
Getting a second opinion is essential and I admit that I have more confidence in the institutions that have a reputation for performing gynecologic oncology surgery regularly. I grew up going to the Mayo Clinic as well as working there so I have a great deal of respect for their care which is why I obtained a second opinion from them. Dana Farber, MSK, and MD Anderson are in the same league. Unfortunately, not everyone can access these medical facilities, but having an experienced gynecologic oncology surgeon is ultimately what is most important. OCCC is rare and really a very different disease than HGSOC which is the most common. It is often confined to the ovary and is associated with endometriosis. What was your CA-125?
I also consult ESMO research regularly as I mentioned previously. Their approach to early stage OCCC has been different than that of the United States until recently. But I do think that the research coming out of Asia is cutting edge because of the prevalence of OCCC.
I have lived in France many times and was hoping to go there this summer. Not happening now.
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.
I just remembered that there is another lovely woman named Stacy who joined this site in January that I knew from other forum. She has OCCC stage 3A and went to the Mayo Clinic in Arizona for her care. I believe you can reach her at @azovercomer. She might be able to provide you with helpful information. She is very kind.
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.
I hope it is ok to share the names of my MayoAZ oncologists. Dr, Camoiano, gyn/oncologist and Dr. Magrina, gyn/oncology surgeon. Almost all of my treatments were at Mayo, including surgeries and chemos, then when I went home to Hawaii, my additional treatments were carefully outlined and supervised from Mayo. In addition, I received a presentation of what to, what to eat, how to exercise, when to be tested, etc., etc., a great follow up system. I still get blood draws monthly, for CA125 and HE4S, cancer indicators whose results are sent to Mayo. My Mayo oncologists then comment on the results.
Very happy to share any information!
I did not realize that you would need surgery again. I assumed that you had optimal debulking with your initial surgical procedure.What is this next operation? If you've not had the tumor removed, they will probably recommend an abdominal hysterectomy (so as to avoid rupture of the ovary) which I believe is typically done with a vertical incision. My incision healed quickly and is barely visible, but I know everyone responds differently (scar tissue, etc). I was postmenopausal at the time of my diagnosis so there was no endometriosis present other than the endometrioma/OCCC.
Getting a second opinion is essential and I admit that I have more confidence in the institutions that have a reputation for performing gynecologic oncology surgery regularly. I grew up going to the Mayo Clinic as well as working there so I have a great deal of respect for their care which is why I obtained a second opinion from them. Dana Farber, MSK, and MD Anderson are in the same league. Unfortunately, not everyone can access these medical facilities, but having an experienced gynecologic oncology surgeon is ultimately what is most important. OCCC is rare and really a very different disease than HGSOC which is the most common. It is often confined to the ovary and is associated with endometriosis. What was your CA-125?
I also consult ESMO research regularly as I mentioned previously. Their approach to early stage OCCC has been different than that of the United States until recently. But I do think that the research coming out of Asia is cutting edge because of the prevalence of OCCC.
I have lived in France many times and was hoping to go there this summer. Not happening now.
Aww wonderful to hear we are both Francophiles. I too was supposed to go this summer and sadly due to both COVID19 and my diagnosis I had to cancel as well. Sorry to hear you had to cancel your trip too. Yes, unfortunately my surgeon was not an oncologist because no one suspected I had a tumor. My previous MRI only showed a cyst. She was going in to remove the cyst on my left ovary when she found the tumor. So, she removed the left ovary, but the mass ruptured inside of me. I am getting scans next week and my CA-125 blood test. I would like to do everything in one place if possible. Rather than a surgery one place and treatment at another. Thank you for sharing Stacy's info. I will reach out to her. Definitely curious to read the research coming out of Asia. Thank you again for all of your support and guidance. You have no idea how helpful this has been for me.
I hope it is ok to share the names of my MayoAZ oncologists. Dr, Camoiano, gyn/oncologist and Dr. Magrina, gyn/oncology surgeon. Almost all of my treatments were at Mayo, including surgeries and chemos, then when I went home to Hawaii, my additional treatments were carefully outlined and supervised from Mayo. In addition, I received a presentation of what to, what to eat, how to exercise, when to be tested, etc., etc., a great follow up system. I still get blood draws monthly, for CA125 and HE4S, cancer indicators whose results are sent to Mayo. My Mayo oncologists then comment on the results.
Very happy to share any information!
Thank you so much for sharing your experience and this information. I plan to contact them. I sincerely appreciate it. It sounds like they have a wonderful follow-up program too. I am feeling much better after joining this group. I am so grateful. Have a wonderful weekend and thank you again. 🙂
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.
My surgery is scheduled for Tuesday, June 2. I had a PET scan done and it showed that my cancer has not spread from my uterus. The surgeon said she plans to remove my uterus, ovaries and fallopian tubes laparoscopically. She will make a few small incisions rather than one large incision. Still, I'm very anxious about the surgery. The surgeon isn't sure if she will keep me in the hospital overnight Tuesday. I plan to recuperate at my brother's home for a few days. Susan54
My surgery is scheduled for Tuesday, June 2. I had a PET scan done and it showed that my cancer has not spread from my uterus. The surgeon said she plans to remove my uterus, ovaries and fallopian tubes laparoscopically. She will make a few small incisions rather than one large incision. Still, I'm very anxious about the surgery. The surgeon isn't sure if she will keep me in the hospital overnight Tuesday. I plan to recuperate at my brother's home for a few days. Susan54
I wish you the best with your surgery. You are in my prayers. I just had a laparoscopic surgery, and I have to say I am quite impressed with how small the incisions are. They are not very noticeable and I have four of them. Unfortunately for my second surgery my surgeon is suggesting one large incision because my endometriosis has attached to other organs. 🙁 I am still getting second opinions so hoping someone can do it laparoscopically. Wishing you all the best and thank you for sharing your story with me. xo 🙂
Hello, This seemed like the best place to introduce myself. I was diagnosed at 47 with Ovarian Clear Cell Carcinoma, stage 3a, in September 2017. I have been fortunate to be in remission since completing chemo at Mayo in AZ. I strive to focus on staying healthy, active and engaged in life.
Hello Stacy, I am also Stacie and thank you for sharing your story. May I ask did you have your surgery at Mayo. I am currently in the process of getting second opinions. Thank you for any information you would feel comfortable sharing. I am happy to hear you are doing well.
All the best,
stacie
Hello Stacy, I am also Stacie and thank you for sharing your story. May I ask did you have your surgery at Mayo. I am currently in the process of getting second opinions. Thank you for any information you would feel comfortable sharing. I am happy to hear you are doing well.
All the best,
stacie
Hello Stacie, I'm sorry that you have recently been diagnosed with OCCC. My surgery and all subsequent treatment has been done at Mayo. Dr. Javier Magrina performed my hysterectomy/debulking via laparoscopic robotic surgery. After surgery, Dr. Kristina Butler, also a gynecologic oncologist, then took over my care for IP port placement, chemotherapy and subsequent followup. I continue to be in remission and monitored by Dr. Butler and now by her PA. I feel so fortunate to have the opportunity to have these talented doctors on my side. We are now seeing more clinical trials that include clear cell which I think is promising.. at the time I was diagnosed (2017) there were very few. I second Odette's recommendation of Inspire as there is a wealth of clear cell information there. Like you, I started to lose weight initially. I met with a nutritionist at Mayo, who recommended following a mediterranean diet. I was able to increase my protein intake during treatment to keep my weight consistent through treatment. I am more than happy to share any additional information if you have questions. Sending best wishes, Stacy
@azovercomer, @starko, @odette
Stacy thank you so much for your reply. I am so happy to hear that you are doing well. 🙂 Does anyone know why Dr. Javier Magrina left the Mayo Clinic? I asked to schedule an appointment with him for surgery, and I was told they do not know if/when he is coming back. Does anyone have contact information for him? This is such a bummer as this is who I was really hoping to perform my surgery. Stacy, they referred me to Dr. Kristina Butler instead who you mentioned was on your oncology team. Would you feel comfortable with her for surgery? To all three of you I would love to hear your general thoughts on chemo therapy as I have read to much research stating clear cell ovarian cancer is shown to be resistant to platinum-based chemotherapy and adjuvant chemotherapy. I know this is a very sensitive question, so if you do not feel comfortable answering I completely understand. But my question is did you lose your hair during chemo? Thank you SO much for your candor, support and guidance. I sincerely appreciate. Sending lots of love and light to all of you. 🙂
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I did not realize that you would need surgery again. I assumed that you had optimal debulking with your initial surgical procedure.What is this next operation? If you've not had the tumor removed, they will probably recommend an abdominal hysterectomy (so as to avoid rupture of the ovary) which I believe is typically done with a vertical incision. My incision healed quickly and is barely visible, but I know everyone responds differently (scar tissue, etc). I was postmenopausal at the time of my diagnosis so there was no endometriosis present other than the endometrioma/OCCC.
Getting a second opinion is essential and I admit that I have more confidence in the institutions that have a reputation for performing gynecologic oncology surgery regularly. I grew up going to the Mayo Clinic as well as working there so I have a great deal of respect for their care which is why I obtained a second opinion from them. Dana Farber, MSK, and MD Anderson are in the same league. Unfortunately, not everyone can access these medical facilities, but having an experienced gynecologic oncology surgeon is ultimately what is most important. OCCC is rare and really a very different disease than HGSOC which is the most common. It is often confined to the ovary and is associated with endometriosis. What was your CA-125?
I also consult ESMO research regularly as I mentioned previously. Their approach to early stage OCCC has been different than that of the United States until recently. But I do think that the research coming out of Asia is cutting edge because of the prevalence of OCCC.
I have lived in France many times and was hoping to go there this summer. Not happening now.
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2 ReactionsI just remembered that there is another lovely woman named Stacy who joined this site in January that I knew from other forum. She has OCCC stage 3A and went to the Mayo Clinic in Arizona for her care. I believe you can reach her at @azovercomer. She might be able to provide you with helpful information. She is very kind.
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2 ReactionsI hope it is ok to share the names of my MayoAZ oncologists. Dr, Camoiano, gyn/oncologist and Dr. Magrina, gyn/oncology surgeon. Almost all of my treatments were at Mayo, including surgeries and chemos, then when I went home to Hawaii, my additional treatments were carefully outlined and supervised from Mayo. In addition, I received a presentation of what to, what to eat, how to exercise, when to be tested, etc., etc., a great follow up system. I still get blood draws monthly, for CA125 and HE4S, cancer indicators whose results are sent to Mayo. My Mayo oncologists then comment on the results.
Very happy to share any information!
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1 ReactionAww wonderful to hear we are both Francophiles. I too was supposed to go this summer and sadly due to both COVID19 and my diagnosis I had to cancel as well. Sorry to hear you had to cancel your trip too. Yes, unfortunately my surgeon was not an oncologist because no one suspected I had a tumor. My previous MRI only showed a cyst. She was going in to remove the cyst on my left ovary when she found the tumor. So, she removed the left ovary, but the mass ruptured inside of me. I am getting scans next week and my CA-125 blood test. I would like to do everything in one place if possible. Rather than a surgery one place and treatment at another. Thank you for sharing Stacy's info. I will reach out to her. Definitely curious to read the research coming out of Asia. Thank you again for all of your support and guidance. You have no idea how helpful this has been for me.
Thank you so much for sharing your experience and this information. I plan to contact them. I sincerely appreciate it. It sounds like they have a wonderful follow-up program too. I am feeling much better after joining this group. I am so grateful. Have a wonderful weekend and thank you again. 🙂
My surgery is scheduled for Tuesday, June 2. I had a PET scan done and it showed that my cancer has not spread from my uterus. The surgeon said she plans to remove my uterus, ovaries and fallopian tubes laparoscopically. She will make a few small incisions rather than one large incision. Still, I'm very anxious about the surgery. The surgeon isn't sure if she will keep me in the hospital overnight Tuesday. I plan to recuperate at my brother's home for a few days. Susan54
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1 ReactionI wish you the best with your surgery. You are in my prayers. I just had a laparoscopic surgery, and I have to say I am quite impressed with how small the incisions are. They are not very noticeable and I have four of them. Unfortunately for my second surgery my surgeon is suggesting one large incision because my endometriosis has attached to other organs. 🙁 I am still getting second opinions so hoping someone can do it laparoscopically. Wishing you all the best and thank you for sharing your story with me. xo 🙂
Hello Stacy, I am also Stacie and thank you for sharing your story. May I ask did you have your surgery at Mayo. I am currently in the process of getting second opinions. Thank you for any information you would feel comfortable sharing. I am happy to hear you are doing well.
All the best,
stacie
Hello Stacie, I'm sorry that you have recently been diagnosed with OCCC. My surgery and all subsequent treatment has been done at Mayo. Dr. Javier Magrina performed my hysterectomy/debulking via laparoscopic robotic surgery. After surgery, Dr. Kristina Butler, also a gynecologic oncologist, then took over my care for IP port placement, chemotherapy and subsequent followup. I continue to be in remission and monitored by Dr. Butler and now by her PA. I feel so fortunate to have the opportunity to have these talented doctors on my side. We are now seeing more clinical trials that include clear cell which I think is promising.. at the time I was diagnosed (2017) there were very few. I second Odette's recommendation of Inspire as there is a wealth of clear cell information there. Like you, I started to lose weight initially. I met with a nutritionist at Mayo, who recommended following a mediterranean diet. I was able to increase my protein intake during treatment to keep my weight consistent through treatment. I am more than happy to share any additional information if you have questions. Sending best wishes, Stacy
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1 Reaction@azovercomer, @starko, @odette
Stacy thank you so much for your reply. I am so happy to hear that you are doing well. 🙂 Does anyone know why Dr. Javier Magrina left the Mayo Clinic? I asked to schedule an appointment with him for surgery, and I was told they do not know if/when he is coming back. Does anyone have contact information for him? This is such a bummer as this is who I was really hoping to perform my surgery. Stacy, they referred me to Dr. Kristina Butler instead who you mentioned was on your oncology team. Would you feel comfortable with her for surgery? To all three of you I would love to hear your general thoughts on chemo therapy as I have read to much research stating clear cell ovarian cancer is shown to be resistant to platinum-based chemotherapy and adjuvant chemotherapy. I know this is a very sensitive question, so if you do not feel comfortable answering I completely understand. But my question is did you lose your hair during chemo? Thank you SO much for your candor, support and guidance. I sincerely appreciate. Sending lots of love and light to all of you. 🙂