Gyn-Oncology surgeons at Mayo Rochester

@monicalu2626,
Does your daughter have an appointment yet at Mayo? It is a team approach and the appointment coordinator will arrange her first appointment and the team will proceed from there. You can ask about a specific provider, but they may not be available or based on your daughter situation, your team may recommended an alternative provider.

If she has not requested an appointment, she should start here: http://mayocl.in/1mtmR63. In your daughter situation, having your local provider referrer her may be best approach.

I see you asked last month about seeking a 2nd opinion at Mayo for yourself. Have you had your appointment. Comment: https://connect.mayoclinic.org/member/00-4693ab4aac3f71ce454436/

I am interested in surgeon recommendations please. Would like to hear from those who have had ovarian surgery.

@monicalu2626 I don't have a recommendation as I did not have ovarian surgery. I can share the following with you. When I was referred to Mayo Clinic in Rochester to Orthopedics I was asked if I had a particular physician in mind.

When I had endometrial cancer I was referred to Mayo Clinic. I was scheduled with the first available gyn-oncologist. That has been the case in other departments where I've seen providers and I have been happy with the outcome.

If it is helpful to you, my gyn oncologist who performed my hysterectomy was Dr. Amanika Kumar. She was very kind during my first consult with her. She explained what she had learned from reviewing my information and my biopsy and what she recommended. If one can say their surgery was a positive experience I will say this. Everything and every person who worked along side me and with me when had the hysterectomy was skilled, compassionate, attentive and I felt well cared for.

Just a fyi...since your daughter is so young, she may have one of the rare ovarian cancer subtypes. Be sure to have the doctor go over the pathology with you and have them explain how they came up with the results. I was misdiagnosed 4 times with the wrong type of ovarian cancer from incorrect pathology results. I ended up having one of the rare subtypes but was originally diagnosed with the most common. Best of luck to your daughter

Excellent response lv67 as juvenile GCT and Adult Granulosa Tumor types are rare. I have Adult type, looking for more information from people.

My 4th misdiagnosis was AGT. It didn't make sense because my cancer has always been very aggressive. I reached out to both Mayo and MD Anderson. Mayo said they didn't have anything to add to my local treatment, which wasn't working. MD Anderson has a rare cancer department with multiple gynecologic oncologists
that specialize in AGT and other Stromal ovarian cancers. They have pathologists that only look at gynecologic cancers and have experience with identifying the rare ovarian cancers. They dx me as high grade Sertoli-Leydig cell tumor.

First, I am so sorry that your daughter has been hit with this shocking blow. I’m so very sorry, too, that you have been hit, as well. I can only imagine what a huge blessing it is for her to have you by her side as she faces this, and how much she might want to spare you this as well. Those of us receiving diagnoses post-menopause might not have mothers or fathers available for such support, and don’t have to know how it pains them.

I was not diagnosed with ovarian cancer, but the same general diagnostic picture and surgical procedures that Helen described, with a few other components to my surgery. I underwent the radical, robotic hysterectomy, oophorectomy, salpingotomy and sentinel node biopsies at Mayo Rochester in 2023 and continue to return for surveillance exams every six months. So far no recurrences.

I want to echo Helen’s report of her experiences there. I was treated with utter kindness throughout. My husband and I met with the surgical team via telehealth prior to making the decision to travel to Rochester. I had another appointment with anaesthesiology prior. Because this was during the pandemic still, I was only able to meet with a local GYN ONC one day prior to our flight to MN. She reviewed my records, listened to my questions and concerns and told us that she had trained at Mayo with the surgeon I was assigned/offered(?), had liked him as a person and learned a tremendous amount from him, and added that there was no way her team here could meet my needs in the comprehensive way that had been set up for me in Rochester, much less in such a rapid timeline. Prior to that I had been wondering if I’d been being over-dramatic in reaching out to Mayo when I hadn’t heard back from the locals after a month of waiting on phone lines only to leave messages.

For what it’s worth, my surgeon was Dr. Andrea Mariani. He was kind, clear, a good communicator and fully answered my questions. I saw him and a uro-gynecological surgeon together once in person the day prior to the surgery, after numerous tests had been completed so they could present my choices to me and decide together on a plan.

I don’t remember seeing Dr. Mariani the morning of the surgery. What/who I do remember that morning (I was first in, arriving at 5AM) was the nurses, the anesthesiology resident and the anesthesiology attending who inserted my IV’s and administered the meds that put me under. I will never, ever forget their attentive kindness! They did NOT talk to each other over as if I wasn’t there, but included me if there was a question or as one professional made a suggestion to another. Not only were they extremely competent (I’m not an easy stick), but they kept me chatting just about where I am from, what I enjoy, what helps me feel safe, etc. The last words I heard from the anaesthesiologist before I slipped into unconsciousness were, “now, feel free to take your attention to that rock you sit on by the pond, and watch for dragonflies there…”. These people absolutely understood that feeling calm and safe are not easy in those moments when it feels as if so much (survival, quality of life) depends on what’s going to happen when I can’t watch, can’t communicate and have no control. And, they made me feel as safe and calm as possible. I felt cared about as an individual and utterly as safe as could be in their care. I think this is most important for you and your daughter to know.

I was the last patient to come out of recovery that evening, after 8pm (very challenging for my waiting spouse but because I’d undergone two procedures with two teams and needed time to become conscious enough for the team to assess me and discharge me from recovery). I do remember Dr. Mariani coming in to check on me once I was back in the regular hospital room with my husband, and to tell me that he believed he’d gotten out everything that needed to be removed, and that he was optimistic that the follow-up pathology report would be reassuring (it was).

My thought for you in all of this is to go to the Mayo GYN ONC website and look at the surgeons listed and read their interests, the research they do and any specialties they have. If you already have info from your daughter’s pathology report that specifies the kind of ovarian cancer she may have, you might look to see if any of the surgeons list this in their bios. You or your daughter, more likely, can certainly contribute your understanding to any discussion about who to request. Otherwise, know that once the team has your daughter’s records, they will determine who is available and would be the best choice given their expertise and the urgency of getting the procedure completed.

I hope she will be able to receive her care at Mayo. I will be keeping you and her and your family in my thoughts and hope for the best.

Gynosaur

Thank you for being so kind and sharing your experience. My sister and I were crying as we read your note. Nothing about cancer is easy- physically or emotionally.
I’m glad to hear that you are doing well.
We are in the queue at Mayo but are also pursuing Sloan Kettering as backup. Hoping to have a destination confirmed this week.
Please continue with the well wishes!
And, again… I am so thankful that you took the time to reply to me. I will share this with my sweet baby when the time is right.

I'm so glad that you're in the queue for Mayo and Sloan Kettering. My family have had experiences there, as well, as my mother-in-law was treated for leukemia there. She had an oncologist there who treated her with such respect and kindness, and she adored so much that she once told me that she had walked through the city just imagining that he might live somewhere nearby, and that gave her tremendous comfort. I was amazed at the time to hear that she was walking anywhere at all! He took an interest in her and related to her around her strengths and gifts as a human, while also educating her about her disease and providing her with treatments that were effective for her. Our entire family continues to hold him in high regard and with profound gratitude for the ways he extended and enhanced the quality of my mother-in-law's life. I hope, wherever your daughter ultimately turns for care, that she will receive the same kinds of tender, respectful and expert care.

My surgeon was dr Kumar and her surgical team. They were awesome. They are there for me every step of the way!