Worried about Ovarian Cancer

Posted by JMac @ch0c00ki35, Tue, Oct 22 9:15pm

Dr found a 13cm simple cyst with clean borders on my right ovary, via ultrasound. Heavy periods with severe cramping, and it's getting worse. Dr asked for bloodwork, CA125 came back at 83, but everything else is normal. Sent for abdominal/pelvic CT with intravenous and oral contrast. Dr called today, no news on cyst, but stated my lymph nodes in pelvic area and aorta are enlarged. Referred to larger hospital OBGYN. I'm 38 years old, overweight, no family history of ovarian cancer, but most women in my family have had problem periods, ovarian cysts, and hysterectomy/oophorectomy. I guess I'm just wondering what my chances are of this being cancer, and what's next.

I’m a stage 3c low and high grade serous carcinoma ovarian cancer survivor of 4 months now. The only way to definitively diagnose ovarian cancer is pathology. I am the first one in my family to have it, and there isn’t any family history of any female issues. The vast majority of ovarian cancer is not genetically linked. I can tell you that if there is any concern of OC, I would only let a gynecological oncologist perform your surgery, not a regular OBGYN. They are not trained in the detailed, and aggressive, surgery that is required to insure the best chance of a longer survival. If you have any other questions, feel free to ask me! Just keep in mind that there are over 30 forms of OC, and some are very treatable! Size of masses does not equate to stage of OC, so don’t panic about that. You’ll be in my prayers 💗

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@dswiney

I’m a stage 3c low and high grade serous carcinoma ovarian cancer survivor of 4 months now. The only way to definitively diagnose ovarian cancer is pathology. I am the first one in my family to have it, and there isn’t any family history of any female issues. The vast majority of ovarian cancer is not genetically linked. I can tell you that if there is any concern of OC, I would only let a gynecological oncologist perform your surgery, not a regular OBGYN. They are not trained in the detailed, and aggressive, surgery that is required to insure the best chance of a longer survival. If you have any other questions, feel free to ask me! Just keep in mind that there are over 30 forms of OC, and some are very treatable! Size of masses does not equate to stage of OC, so don’t panic about that. You’ll be in my prayers 💗

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I like your advice about getting a gyn oncologist rather than an Ob/gyn as they are specifically trained to deal with cancer. I had two fabulous gyn oncologists at Mayo and am currently in my 7th month of recovery from stage 3C ovarian and doing very well. The eyelashes and eyebrows are back and hair is on its way. I look normal! I have energy and an appetite. Life can be good after cancer!

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@dswiney

I’m a stage 3c low and high grade serous carcinoma ovarian cancer survivor of 4 months now. The only way to definitively diagnose ovarian cancer is pathology. I am the first one in my family to have it, and there isn’t any family history of any female issues. The vast majority of ovarian cancer is not genetically linked. I can tell you that if there is any concern of OC, I would only let a gynecological oncologist perform your surgery, not a regular OBGYN. They are not trained in the detailed, and aggressive, surgery that is required to insure the best chance of a longer survival. If you have any other questions, feel free to ask me! Just keep in mind that there are over 30 forms of OC, and some are very treatable! Size of masses does not equate to stage of OC, so don’t panic about that. You’ll be in my prayers 💗

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Thank you for your reply. I am being referred to a larger hospital that has an oncology department, my appt is next Thursday. I'm hoping they can get the ball rolling for surgery. I've already had bloods, ultrasounds, and CT, so what else might be needed?

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I suggest you ask for a HE4,S test as well. Some oncologists think it is a better indicator of cancer.

Liked by JMac

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@starko

I like your advice about getting a gyn oncologist rather than an Ob/gyn as they are specifically trained to deal with cancer. I had two fabulous gyn oncologists at Mayo and am currently in my 7th month of recovery from stage 3C ovarian and doing very well. The eyelashes and eyebrows are back and hair is on its way. I look normal! I have energy and an appetite. Life can be good after cancer!

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I’d love to know the names of the 2 good OGyn Onocologist at Mayo.

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@rochellewisner

I’d love to know the names of the 2 good OGyn Onocologist at Mayo.

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@rochellewisner I think there are a few gyn oncologists at each of the Mayo Clinic locations. I agree that for a gynecological cancer, it's important to see a gyn oncologist. Sometimes when we are referred for an urgent problem at Mayo the appointment is made with the first available provider. Personally, my partner and I have been very pleased with every physician and member of the care teams that we've seen.

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@rochellewisner

I’d love to know the names of the 2 good OGyn Onocologist at Mayo.

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I would love to give you the names of my two oncologists at Mayo, AZ. but I am not sure if this is appropriate. Can we hear from someone at Mayo as to what the correct protocol is? Merci!

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@starko

I would love to give you the names of my two oncologists at Mayo, AZ. but I am not sure if this is appropriate. Can we hear from someone at Mayo as to what the correct protocol is? Merci!

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@starko, thanks for asking first. You can certainly mention the names of the oncologists on your team at Mayo Clinic.
Rochelle, @naturegirl5 is right. Mayo Clinic specialists work as teams. No matter which expert you see, you have the benefit of many minds and expert experience.

@ch0c00ki35 JMac, thinking of you. I think you went for more testing today. I'm sure you're exhausted. I look forward to an update when you're able (if you want to of course).

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@colleenyoung

@starko, thanks for asking first. You can certainly mention the names of the oncologists on your team at Mayo Clinic.
Rochelle, @naturegirl5 is right. Mayo Clinic specialists work as teams. No matter which expert you see, you have the benefit of many minds and expert experience.

@ch0c00ki35 JMac, thinking of you. I think you went for more testing today. I'm sure you're exhausted. I look forward to an update when you're able (if you want to of course).

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Hi Rochelle. My two gyn oncologists at Mayo, AZ are Dr.John Camoriano and Dr. Magrina, both exceptionally well qualified, on top of all new therapies and truly magnificent individuals. They are responsive, answer my emails promptly and truly care about their patients. Dr. Camoriano sat with me during my first bout with chemo. He wanted to be certain all was going well and that I was okay. Even after completing my treatment about eight months ago, they still check in on me on a regular basis and request the results of my monthly CA125 and HE4,S tests from my home in Hawaii. What more can one ask of their doctors?

Liked by odette

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Hey all! I'm tired and sore, but I saw a GYN/ONC today, and he and a visiting MD examined me and came to the same conclusion; My uterus is hard and enlarged, in fact, it's a 15 week size. I also have a 13cm simple cyst on my right ovary. I have to repeat the CA125 test next Friday, but regardless of the results, I AM SCHEDULED FOR A HYSTERECTOMY in 2 weeks! Yay for progress! Biopsies will be done as things are removed, and staging done if needed. He will try to save my left ovary if it looks ok. Sleeping is difficult, I've been up since 4am today; my hips hurt from laying on them and I have pains shooting down the front of my legs. I'm not going to worry about cancer right now, just getting this painful gut taken care of.

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@ch0c00ki35

Hey all! I'm tired and sore, but I saw a GYN/ONC today, and he and a visiting MD examined me and came to the same conclusion; My uterus is hard and enlarged, in fact, it's a 15 week size. I also have a 13cm simple cyst on my right ovary. I have to repeat the CA125 test next Friday, but regardless of the results, I AM SCHEDULED FOR A HYSTERECTOMY in 2 weeks! Yay for progress! Biopsies will be done as things are removed, and staging done if needed. He will try to save my left ovary if it looks ok. Sleeping is difficult, I've been up since 4am today; my hips hurt from laying on them and I have pains shooting down the front of my legs. I'm not going to worry about cancer right now, just getting this painful gut taken care of.

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A hysterectomy sounds menacing, but truly it is not a big deal! Many women today have it done after they are over child bearing age, simply to limit the probability of various types of gynecological cancers. Mine was done on a Friday, I went home the following morning and needed no medication. The scarring is minimal. Good luck!

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@starko

A hysterectomy sounds menacing, but truly it is not a big deal! Many women today have it done after they are over child bearing age, simply to limit the probability of various types of gynecological cancers. Mine was done on a Friday, I went home the following morning and needed no medication. The scarring is minimal. Good luck!

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Because of the size of my uterus, I will be cut open from pubic bone to belly button.

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@ch0c00ki35

Hey all! I'm tired and sore, but I saw a GYN/ONC today, and he and a visiting MD examined me and came to the same conclusion; My uterus is hard and enlarged, in fact, it's a 15 week size. I also have a 13cm simple cyst on my right ovary. I have to repeat the CA125 test next Friday, but regardless of the results, I AM SCHEDULED FOR A HYSTERECTOMY in 2 weeks! Yay for progress! Biopsies will be done as things are removed, and staging done if needed. He will try to save my left ovary if it looks ok. Sleeping is difficult, I've been up since 4am today; my hips hurt from laying on them and I have pains shooting down the front of my legs. I'm not going to worry about cancer right now, just getting this painful gut taken care of.

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JMac, I had postmenopausal bleeding and cramps which led me my gynecologist. Within days after an endometrial cancer diagnosis I was at Mayo Clinic where, I had a radical hysterectomy with bilateral salpingo oopherectomy (fallopian tubes and ovaries also removed). I did not have any pain prior to that but with a diagnosis of endometrial cancer it was the right decision. I have had friends who've had longstanding pain and discomfort as you've had. One of my friends was pain-free within hours of awakening from her hysterectomy and was so greatly relieved. So, with that, I'd like offer encouragement that your pain will disappear and that will be a great relief. I understand your anxiety and fear. It's a very natural response. It sounds to me that you've consulted the physicians best equipped to help you through this. Please let us know as you proceed and know that all of us are wishing you the best. naturegirl5

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My gyn oncologist at Mayo Clinic in Rochester is Dr. Amanika Kumar. She is empathic, answered our many questions, was responsive, and her whole team was awesome. I wrote her a thank you note after my surgery – I've never written a thank you note for anything like this in the past but I was so moved by her care and expertise.

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