Anyone have ovaries removed as a precaution?

roseann4

Hi All,

I was diagnosed with Invasive Lobular Cancer, Stage 1 in Feb. 09. My surgeon recommended I have my ovaries removed to as a precaution because there is a correlation between breast and ovarian cancer. My oncologist referred me to a gynocologist (I had my pap tests done by my primary doc). My onc thought it would be a good idea.

I saw the gyno last week and she said it was not normal to remove the ovaries in situations like mine. I was diagnosed at 58 years old and have no family history of getting breast cancer before age 50 which is when there seems to be a correlation. No one in my family has had ovarian cancer. She also said that there are benefits of keeping the ovaries. They do not know all that the ovaries do but there are benefits beyond the obvious hormonal ones. She is very experienced and very respected so I think she knows what she's talking about. She ordered an ultrasound just to get a picture of my insides which I had on Friday.

Anyone in my situation?

Now here's another twist. I walked into the ultrasound room and the tech said, "Don't be paniced that the doctor felt a mass. It could have been nothing." Felt a mass! She said everything was fine. Needless to say, it was a terrifying 15 mins. As far as the tech could see, there is no mass. She showed me the paperwork which clearly said that my gyno felt a mass. I will call her on Monday. She must have been trying to be sure insurance would cover the ultrasound but if so she should have warned me. In addition, the tech should not have told me what was written. I think she was trying to help but it really did the opposite.

These people have NO CLUE of what we go through or they would not be so casual about their notations and/or comments.

Roseann

Dot53

Hi Roseann
I asked my onco if I should have my ovaries removed as a precaution (I am 53) and he said there was no reason to b/c at my age the ovaries aren't producing hormones anymore. He said the hormones that I am producing are coming from the adrenal glands. I have an appointment with a new Gyn on Monday.. am curious to see what she will say..

Best,
Dot

Christine Louise

I'm in your situation
I had ILC, LCIS and DCIS, double mast and now chemo. My understanding is if you have the BRCA1 or BRCA2 genetic mutation, there's a greater chance for both breast and ovarian cancer. You may have a mutation even if you don't have a family history. Did you have genetic testing?

My mother, who had breast cancer, is getting a comprehensive test. If she's positive, I'll get tested only for the mutation she has. If she's negative, I'll still need the comprehensive test. If I'm positive, I'll have to decide about my ovaries. Thank you for the info from your gyno -- another factor to consider and ask about.

Yes, the doc should have told you she wrote there was a mass. At least she was thinking about your insurance coverage, however, so I'd find it hard to be too mad at her. I'm afraid you may find thoughtless things happening during your treatment. You can tell them, so maybe they'll become more sensitive. Forgive them ,too. I feel better when I can let go of the "wrongs" and concentrate on moving forward.

I'm so sorry you are going through this, Roseann! Keep us posted, please.

n01kar

Christine Louise said:

I'm in your situation
I had ILC, LCIS and DCIS, double mast and now chemo. My understanding is if you have the BRCA1 or BRCA2 genetic mutation, there's a greater chance for both breast and ovarian cancer. You may have a mutation even if you don't have a family history. Did you have genetic testing?

My mother, who had breast cancer, is getting a comprehensive test. If she's positive, I'll get tested only for the mutation she has. If she's negative, I'll still need the comprehensive test. If I'm positive, I'll have to decide about my ovaries. Thank you for the info from your gyno -- another factor to consider and ask about.

Yes, the doc should have told you she wrote there was a mass. At least she was thinking about your insurance coverage, however, so I'd find it hard to be too mad at her. I'm afraid you may find thoughtless things happening during your treatment. You can tell them, so maybe they'll become more sensitive. Forgive them ,too. I feel better when I can let go of the "wrongs" and concentrate on moving forward.

I'm so sorry you are going through this, Roseann! Keep us posted, please.

better to be safe than sorry
I had dcis 7 yrs ago on my right breast. Last october, i was diagnosed with stage 2 on the left breast. On both diagnosis , i opted for a masectomy and reconstruction via the expander/implant route. I tested positive for the braca test 3 months ago. My oncologist advised me that since this is my 2nd time with cancer and being braca positive, that if the cancer should return, there is a strong possibility it might return to my ovaries. On March 9 th, i had my ovaries removed. I am treating cancer as aggressively as i can. I dont want to say should have, could have down the road.

Kat11

n01kar said:

better to be safe than sorry
I had dcis 7 yrs ago on my right breast. Last october, i was diagnosed with stage 2 on the left breast. On both diagnosis , i opted for a masectomy and reconstruction via the expander/implant route. I tested positive for the braca test 3 months ago. My oncologist advised me that since this is my 2nd time with cancer and being braca positive, that if the cancer should return, there is a strong possibility it might return to my ovaries. On March 9 th, i had my ovaries removed. I am treating cancer as aggressively as i can. I dont want to say should have, could have down the road.

I am waiting for results on
I am waiting for results on the Brac 1 & 2 testing. If I am positive for this gene, then I have to have the ovaries taken out. This is for precaution. I have not completed menopause yet even with the chemo and Tamoxifen, so yes they have to go.

DianeBC

Dot53 said:

Hi Roseann
I asked my onco if I should have my ovaries removed as a precaution (I am 53) and he said there was no reason to b/c at my age the ovaries aren't producing hormones anymore. He said the hormones that I am producing are coming from the adrenal glands. I have an appointment with a new Gyn on Monday.. am curious to see what she will say..

Best,
Dot

I never considered it, nor,
I never considered it, nor, did my oncologist recommend it. Your ovaries do a lot of good for your body. Be sure and get all of the facts before having the surgery. Good luck!

ms_independent

I had mine removed
I had my ovaries removed as a precaution. My breast ca MD sent me to my GYN to discuss risk of ovarian cancer, he referred me to a gynecologic cancer specialist. I have a really strong family history and I tested negative for the known breast ca genetic stuff. All 3 of the above mentioned MD's felt that my breast ca was genetic---there is just not a test for it yet. Because there is a known genetic link (in familial breast cancer) to ovarian cancer it was felt I should get my ovaries removed. If there were any good methods of diagnosing ovarian cancer they might have advised differently. Ovarian cancer is found less then 50% of the time on every 6 month screening blood work and ultrasounds. It is usually found too late---even when you are looking for it!! That really scared me, I wanted to prevent it---not---treat it after it happened.

I am 52 years old and I think I was still producing some estrogen in my ovaries (Uterus was removed many years ago). My hot flashes have gotten worse since the surgery 2 weeks ago. Anyway, the purpose of the surgery was to prevent ovarian cancer not to limit estrogen production. As you probably know, they can not get all of the breast tissue or all of the ovarian tissue during surgery. There is always some they don't get so, there is always a risk of recurrent breast ca or ovarian ca despite having the organs removed. The belief (per the oncologic GYN) is that removing my ovaries reduces my risk of ovarian cancer to that of the general population. Still not the best odds but, I'll take any improvement I can get.

You are right, so many of the medical techs need to learn what not to say. Most of them mean well. But, most of their patients are in a vulnerable position and need to hear as much positive as they can. I'm sorry yours was insensitive. You don't need anything else to be fearful of.

You know you could seek another opinion, possibly with a gynecologic cancer surgeon/specialist. That Dr should be the most up to date on the statistics and current recommendations. It could help you to feel more confident in the recommendation.

Best of luck.

Hugs, El

24242

ms_independent said:

I had mine removed
I had my ovaries removed as a precaution. My breast ca MD sent me to my GYN to discuss risk of ovarian cancer, he referred me to a gynecologic cancer specialist. I have a really strong family history and I tested negative for the known breast ca genetic stuff. All 3 of the above mentioned MD's felt that my breast ca was genetic---there is just not a test for it yet. Because there is a known genetic link (in familial breast cancer) to ovarian cancer it was felt I should get my ovaries removed. If there were any good methods of diagnosing ovarian cancer they might have advised differently. Ovarian cancer is found less then 50% of the time on every 6 month screening blood work and ultrasounds. It is usually found too late---even when you are looking for it!! That really scared me, I wanted to prevent it---not---treat it after it happened.

I am 52 years old and I think I was still producing some estrogen in my ovaries (Uterus was removed many years ago). My hot flashes have gotten worse since the surgery 2 weeks ago. Anyway, the purpose of the surgery was to prevent ovarian cancer not to limit estrogen production. As you probably know, they can not get all of the breast tissue or all of the ovarian tissue during surgery. There is always some they don't get so, there is always a risk of recurrent breast ca or ovarian ca despite having the organs removed. The belief (per the oncologic GYN) is that removing my ovaries reduces my risk of ovarian cancer to that of the general population. Still not the best odds but, I'll take any improvement I can get.

You are right, so many of the medical techs need to learn what not to say. Most of them mean well. But, most of their patients are in a vulnerable position and need to hear as much positive as they can. I'm sorry yours was insensitive. You don't need anything else to be fearful of.

You know you could seek another opinion, possibly with a gynecologic cancer surgeon/specialist. That Dr should be the most up to date on the statistics and current recommendations. It could help you to feel more confident in the recommendation.

Best of luck.

Hugs, El

Not Comforting
Ms, I am sorry you feel that way because that is a whole pile better than getting the line that if the doctor didn't call as he said he would then "no news is good news". I had already been assured from two doctors that my chances of having breast cancer were slim to none. Tell that to someone who didn't have a grandmother with this disease.
He didn't bother to pick up the results too busy. I ended up phoning the surgeon's office and he was astounded that I didn't know I had breast cancer, I should have been told when I was told I would get results.
Now I just wish the techs told me so there isn't all this waiting around as I wait some more. That to me is the worst part of being ill with lumps is waiting for them to find out what it is.
I had altra sound tech basically pat my arm and made me practically promise I would see my doctor for MRI or CT scan very least. This woman already admitted to me I was so smart having double mastectomy and she had lost her sister to this disease only a few years after her dx.
I don't need the doctor to lesson the blow because when they should have they certainly did not. My GP didn't bother to see me in Hospital too busy and the Surgeon refused to give any medication stronger than T3's. Wow and I am to trust and find comfort with them.

Waiting is the worst for me
Tara

24242

ms_independent said:

I had mine removed
I had my ovaries removed as a precaution. My breast ca MD sent me to my GYN to discuss risk of ovarian cancer, he referred me to a gynecologic cancer specialist. I have a really strong family history and I tested negative for the known breast ca genetic stuff. All 3 of the above mentioned MD's felt that my breast ca was genetic---there is just not a test for it yet. Because there is a known genetic link (in familial breast cancer) to ovarian cancer it was felt I should get my ovaries removed. If there were any good methods of diagnosing ovarian cancer they might have advised differently. Ovarian cancer is found less then 50% of the time on every 6 month screening blood work and ultrasounds. It is usually found too late---even when you are looking for it!! That really scared me, I wanted to prevent it---not---treat it after it happened.

I am 52 years old and I think I was still producing some estrogen in my ovaries (Uterus was removed many years ago). My hot flashes have gotten worse since the surgery 2 weeks ago. Anyway, the purpose of the surgery was to prevent ovarian cancer not to limit estrogen production. As you probably know, they can not get all of the breast tissue or all of the ovarian tissue during surgery. There is always some they don't get so, there is always a risk of recurrent breast ca or ovarian ca despite having the organs removed. The belief (per the oncologic GYN) is that removing my ovaries reduces my risk of ovarian cancer to that of the general population. Still not the best odds but, I'll take any improvement I can get.

You are right, so many of the medical techs need to learn what not to say. Most of them mean well. But, most of their patients are in a vulnerable position and need to hear as much positive as they can. I'm sorry yours was insensitive. You don't need anything else to be fearful of.

You know you could seek another opinion, possibly with a gynecologic cancer surgeon/specialist. That Dr should be the most up to date on the statistics and current recommendations. It could help you to feel more confident in the recommendation.

Best of luck.

Hugs, El

Not Comforting
Ms, I am sorry you feel that way because that is a whole pile better than getting the line that if the doctor didn't call as he said he would then "no news is good news". I had already been assured from two doctors that my chances of having breast cancer were slim to none. Tell that to someone who didn't have a grandmother with this disease.
He didn't bother to pick up the results too busy. I ended up phoning the surgeon's office and he was astounded that I didn't know I had breast cancer, I should have been told when I was told I would get results.
Now I just wish the techs told me so there isn't all this waiting around as I wait some more. That to me is the worst part of being ill with lumps is waiting for them to find out what it is.
I had altra sound tech basically pat my arm and made me practically promise I would see my doctor for MRI or CT scan very least. This woman already admitted to me I was so smart having double mastectomy and she had lost her sister to this disease only a few years after her dx.
I don't need the doctor to lesson the blow because when they should have they certainly did not. My GP didn't bother to see me in Hospital too busy and the Surgeon refused to give any medication stronger than T3's. Wow and I am to trust and find comfort with them.

Waiting is the worst for me
Tara