Very high likelyhood of ovarian cancer - advice on doctors

Posted by christyw @christyw, Apr 27 2:06pm

I have a very suspicious mass on my ovary, one inch with irregular borders found with an ultrasound and had a high ROMA score blood test. My GYN seems very concerned and has referred me to a Surgical Oncologist (the one who is in her group). I don't know if I should take her recommendation or look for my own? Also, for those who have been at this first stage, what are the typical next steps. I have no idea what to expect at the first Dr. appt with an oncologist???? MRI, CAT scan, discussion with doc on next steps??? I kind of feel like I'm in the dark.

Hi Christy, and welcome. I know it is very frightening at this pre-diagnosis stage when so much is still unknown. I think you can take comfort that your gyn is being thorough and making referrals for further investigation. I'm bringing in fellow ovarian cancer members like @starko @miriam57 @odette @pauldale4 @stparker54 @rochellewisner to share their experiences and to be there with you as you journey through the next steps.

As for doctor recommendations, my thoughts are to go to a cancer center of excellence where you will receive care from a whole team. Cancer (if it is cancer) is rarely treated by one specialty. You want to go somewhere where teams work well together. Naturally, I recommend Mayo Clinic, but am well aware there are several premiere cancer centers in the country. Do you live in the US? Do you live near a major cancer center?

Your GYN has likely referred you to a surgical oncologist for further testing first, not treatment. Testing may involve more imaging, but since you're being referred to a surgical oncologist, the next step may be a biopsy. You should be able ask what procedures you are being booked for. Do you already have an appointment with the surgical oncologist?

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Hi Christy. I am sorry that you believe you might have ovarian cancer. I was there almost 3 years ago and my cancer was discovered by accident. I had a colon blockage that was surgically removed, and a CT scan and ultrasound were administered which is when they discovered the tumor on my ovaries. They also did blood tests that can indicate this cancer, CA125 and HE4,s. Both tumor markers were very high.
My husband and I were on the next flight to Scottsdale, AZ to Mayo Clinic, where I was immediately admitted and had a plan laid out. I had a gym/oncologist and an gym/oncology/surgeon taking care of me. First was the exploratory surgery to determine if they could remove the tumor without spreading it. They could not, so I began chemotherapy immediately and within a few weeks of chemo, my tumor markers returned to normal. About two months later, I had a hysterectomy. Three months after the first discovery, we headed home to Hawaii, with very detailed instructions on what to eat and not to eat.
My gyn/oncologist kept close tabs on me. We emailed and spoke often. He answered all the questions we had, even the very silly ones and offered wonderful support the whole time.
If I were to give you advice,I would say, go the best doctor you can find (I recommend Mayo) and do not delay as this cancer can spread rapidly!

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@colleenyoung

Hi Christy, and welcome. I know it is very frightening at this pre-diagnosis stage when so much is still unknown. I think you can take comfort that your gyn is being thorough and making referrals for further investigation. I'm bringing in fellow ovarian cancer members like @starko @miriam57 @odette @pauldale4 @stparker54 @rochellewisner to share their experiences and to be there with you as you journey through the next steps.

As for doctor recommendations, my thoughts are to go to a cancer center of excellence where you will receive care from a whole team. Cancer (if it is cancer) is rarely treated by one specialty. You want to go somewhere where teams work well together. Naturally, I recommend Mayo Clinic, but am well aware there are several premiere cancer centers in the country. Do you live in the US? Do you live near a major cancer center?

Your GYN has likely referred you to a surgical oncologist for further testing first, not treatment. Testing may involve more imaging, but since you're being referred to a surgical oncologist, the next step may be a biopsy. You should be able ask what procedures you are being booked for. Do you already have an appointment with the surgical oncologist?

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This helps tremendously. I wish I could go to the Mayo Clinic but I don't have the kind of insurance that would allow me to do so. I live in Atlanta with a lot of great hospitals and doctors. I believe the doctor they referred me to is a good one but probably not the best. And yes, he is a surgical oncologist. I have gotten a lot of references from friends and from friend's doctors which has been great but their advice is to first go to the one who I have been referred to first and if I am unhappy then to go after another top doc.

They haven't told me what procedures I am booked for on this first visit. So far I've had an ultrasound and the ROMA blood test. I thought they couldn't do a biopsy on a cervical mass as it may cause it to spread?

I appreciate all your help. It's the waiting and not knowing that is driving me mad.

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@christyw

This helps tremendously. I wish I could go to the Mayo Clinic but I don't have the kind of insurance that would allow me to do so. I live in Atlanta with a lot of great hospitals and doctors. I believe the doctor they referred me to is a good one but probably not the best. And yes, he is a surgical oncologist. I have gotten a lot of references from friends and from friend's doctors which has been great but their advice is to first go to the one who I have been referred to first and if I am unhappy then to go after another top doc.

They haven't told me what procedures I am booked for on this first visit. So far I've had an ultrasound and the ROMA blood test. I thought they couldn't do a biopsy on a cervical mass as it may cause it to spread?

I appreciate all your help. It's the waiting and not knowing that is driving me mad.

Jump to this post

The waiting is the worst! Biopsies are commonly used diagnostic tests done safely to rule out ovarian and cervical cancer. Often tumors are benign (non-cancerous).

I understood in your original message that the mass was on your ovary. Is it on or in the ovary? Your latest post refers to a cervical mass. Is the mass on your ovary or cervix?

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