I have a question for anyone who has had or will be having prophylactic surgeries . . .
Did you get a BRCA test done and go by the results of that? Or did your onc just look at your risk factors and decide based on that?
My med onc wants me to get the BRCA test done - said that if that came back positive, she might consider a mastectomy on my remaining breast and also having my ovaries removed.
I am not planning on getting the BRCA test done, but am concerned because I do have other risk factors . . . had a sister dx with bc when she was 34 (she died at age 43) . . . have an uncle (my mom's brother) dx with breast cancer . . . my own dx . . . and I have also read that a Mayo Clinic study shows that fraternal twin sisters may be at higher risk for bc (I have a fraternal twin sister).
I'm going to bring these concerns up when I meet with my onc this Thursday . . . was just wondering how this got decided for others.
Thanks!!
♥ Lynn ♥
Comments
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Double
I am day 5 post- op. My situtation started about 10 years ago. Went in 3 times a year on average for cysts to be drained due to their large size. These liquids masses began turning solid then requiring punch biopsys along with the liquid cysts. In March the margins on the solid masses began to change in a way the doctors did not like. Hence they encouraged me to do this while I was healthy. Meeting Today with doctor to get results from all masses removed, hopefully we didn't wait too long.0 -
No I did not but had a grandmother who had breast cancer so always knew from a very young age it was a risk for me and my family. Because I was stage 3 at the time of diagnosis with 11 out of 21 positive nodes (14 years ago) surgeon and my mother the nurse both wanted me to worry about the side with the cancer and then if I still wanted the other breast removed he would do it no questions. I had more lumps grow in the breast I left so a year to the day I removed the second breast and that was truly the best thing for me.Menda said:Double
I am day 5 post- op. My situtation started about 10 years ago. Went in 3 times a year on average for cysts to be drained due to their large size. These liquids masses began turning solid then requiring punch biopsys along with the liquid cysts. In March the margins on the solid masses began to change in a way the doctors did not like. Hence they encouraged me to do this while I was healthy. Meeting Today with doctor to get results from all masses removed, hopefully we didn't wait too long.
I wanted to do both at the same time but because I was so ill my other thought it would be too traumatic for my body and she was probably right.
Had I had both breasts done at the same time my raging blood infection after 2nd chemo would have gone to the heart if that breast had been removed as well. I am amazed at how many women have both done at the same time and that is the choice they make for themselves.
You are in my thoughts and close at heart,
Tara
Genetics they still say plays less than 10% of all cancer.0 -
Based on risk factor
Lynn, my mastectomy showed microcalcifications throughout right breast. Biopsy revealed DCIS, LCIS and Invasive Lobular. Lumpectomy wasn't possible -- too extensive.
Breast surgeon said LCIS is an indicator that bc is likely to occur in the other breast (that's not a very scientific explanation -- sorry) and she recommended bilateral.
Post-surgery pathology showed cancer in the supposedly healthy left breast, as well -- so, lucky decision. Also, my bc was "fed" by estrogen.
I have not had BRCA test for financial/insurance reasons. Mother, also a bc survivor, tested negative despite family history of bc (her sister and grandmother). Testing can't yet detect all genes responsible for hereditary bc.
No BRCA test, so can't prove I have Breast and Ovarian Cancer Syndrome as a reason for oophorectomy (ovaries and uterus removal). This is not just a treatment issue but an insurance issue. Nevertheless, based on my bc being estrogen-positive, I will have oophorectomy next month and insurance will cover it.
Based on OncotypeDX test, which shows chance of recurrance, I had chemo. Will take Tamoxifen, then Arimidex to prevent estrogen from feeding more bc in the future.
Best wishes on your onc visit Thursday. Ask him/her everything and write it all down!0 -
My story has something in
My story has something in common with yours. My Sister died after a 6 year struggle with bc. She had unilateral mastectomy and it came back on other side. She was negative for barc. I had the test done to help me decide (I am negative), also to give my Mom, other sister, neice, and daughters info. for the future, should they ever need it. My Oncologist emphasized to me that he could not say removal of the noncanerous breast was medically necessary ("only" 10% chance of it spreading) but I strongly felt that I wanted to remove that 10% chance, for my own peace of mind. Our insurance said they would not cover it because it was not a "medical necessity", but then they wound up reimbursing us afterward (I did not ask questions). I am still certain that I made the right decision for me.
Best wishes on making the right decision for you. seof0 -
Can not add a thing .. except to send you acyber hug andseof said:My story has something in
My story has something in common with yours. My Sister died after a 6 year struggle with bc. She had unilateral mastectomy and it came back on other side. She was negative for barc. I had the test done to help me decide (I am negative), also to give my Mom, other sister, neice, and daughters info. for the future, should they ever need it. My Oncologist emphasized to me that he could not say removal of the noncanerous breast was medically necessary ("only" 10% chance of it spreading) but I strongly felt that I wanted to remove that 10% chance, for my own peace of mind. Our insurance said they would not cover it because it was not a "medical necessity", but then they wound up reimbursing us afterward (I did not ask questions). I am still certain that I made the right decision for me.
Best wishes on making the right decision for you. seof
wish the very best for you. Personal decision ..
Vicki Sam0 -
Hmm, not sureMNLynn said:was it your onc's decision or your decision?
Do you think your onc needs to think it's "medically necessary" in order for insurance to cover a prophylactic surgery?
I hope someone will know a better answer to this than me. Getting bi-lat instead of single definitely was my decision. Surgeon recommended it but I could just as easily have said no.
I believe the surgeon "coded" the paperwork -- the code defines the reason for the procedure -- in a way that insurance would pay. Don't know if that means she coded it as medically necessary even though it wasn't, strictly speaking.
My impression is that the codes are all-important. For example, for my upcoming oophorectomy, the gyn had to be careful -- although I have fibroids, she couldn't even mention them because they're a pre-existing condition for me and insurance wouldn't cover.
Some insurances are more restrictive than others, too, I would think. Definitely call the onc's office about this question. They must deal with it all the time.0 -
I was in the process ofChristine Louise said:Hmm, not sure
I hope someone will know a better answer to this than me. Getting bi-lat instead of single definitely was my decision. Surgeon recommended it but I could just as easily have said no.
I believe the surgeon "coded" the paperwork -- the code defines the reason for the procedure -- in a way that insurance would pay. Don't know if that means she coded it as medically necessary even though it wasn't, strictly speaking.
My impression is that the codes are all-important. For example, for my upcoming oophorectomy, the gyn had to be careful -- although I have fibroids, she couldn't even mention them because they're a pre-existing condition for me and insurance wouldn't cover.
Some insurances are more restrictive than others, too, I would think. Definitely call the onc's office about this question. They must deal with it all the time.
I was in the process of getting a propholactic mastectomy on the other side. I had Bc in 1994. I was told I could wait, mammo, neg. braca neg, so I planned it for the fall. /in the spring felt a lump. BC again. I forget to add I also was having biopsies every other year and I could not take the stress anymore. My BC is better detected on MRI which I never knew. anyways I prob would have had it anyway maybe an earlier stage.0 -
Lynn
Lynn I typed this whole response and it didn't go through. To make a long story short. I'm the 5th in my family to get bc. I had the BRCA test and was negative. I opted for bilateral mastectomies (June 22) because I had invasive lobular carcinoma (6.1cm) in right breast and LCIS in left breast. My surgeon removed the right breast and his partner removed the left. I didn't want to repeat the whole surgery in another year when the LCIS might have turned into bc. And they both agreed with me. Insurance did tell me if it was "medically necessary" it would be covered. I'm fairly certain that my surgeon used the right codes so that all would be paid for. So far they haven't balked at paying for anything. Good luck!!
Char0 -
Surgerycahjah75 said:Lynn
Lynn I typed this whole response and it didn't go through. To make a long story short. I'm the 5th in my family to get bc. I had the BRCA test and was negative. I opted for bilateral mastectomies (June 22) because I had invasive lobular carcinoma (6.1cm) in right breast and LCIS in left breast. My surgeon removed the right breast and his partner removed the left. I didn't want to repeat the whole surgery in another year when the LCIS might have turned into bc. And they both agreed with me. Insurance did tell me if it was "medically necessary" it would be covered. I'm fairly certain that my surgeon used the right codes so that all would be paid for. So far they haven't balked at paying for anything. Good luck!!
Char
MNLynn,
I had a bilater. mast. (8 wks ago) I had a choice since cancer was only found in the right. I did go through the genetic counseling. (You have to do this for the test to be covered... at least I was told this.) It takes so long. At first my oncologist said it was worth waiting a few weeks to make the right decision... (They can put a rush on it -- ) The stress of waiting wasn't helping. I turned out to be neg. but by then I had already made peace with the fact that I was going to have a bilat. mast.
This has to be your choice, not what is easier for the doctor. I had a lot of family history so it was something that was important to me. I have no regrets....
Take care.
** Your insurance should cover it even if you do one now, and then do the second later.0 -
My biological mother had BCSally5 said:Surgery
MNLynn,
I had a bilater. mast. (8 wks ago) I had a choice since cancer was only found in the right. I did go through the genetic counseling. (You have to do this for the test to be covered... at least I was told this.) It takes so long. At first my oncologist said it was worth waiting a few weeks to make the right decision... (They can put a rush on it -- ) The stress of waiting wasn't helping. I turned out to be neg. but by then I had already made peace with the fact that I was going to have a bilat. mast.
This has to be your choice, not what is easier for the doctor. I had a lot of family history so it was something that was important to me. I have no regrets....
Take care.
** Your insurance should cover it even if you do one now, and then do the second later.
My biological mother had BC aged 37 but i am adopted and so was she,so we don't fully know our family historys.
Because i could only provide the docs with ONE primary relative who had BC, they said thid din't warrant getting genetic testing.But they did agree my risk was elevated.
My main risk came from me recieving mantle radiation when i was 17,for Hodgkins lymphoma. I was notified in 2003 about the 'new found' high risk.Since then,i had undergone annual Mammograms,MRI+Contrast scan and ultrasounds.
Each time i got a mammo,this exposed me to more radiation so it was a catch 22 situaution! I have been getting these scans since the age of about 30 and each year i went for them,i thought i was going to be told i had BC.
So i decided to enquire about proph BMx and they said i was a perfect candidate for it, and they would set the ball rolling.
After speaking to women on here who had mantle rads for HL years ago,i found some of them to have gone on the get BC, so i know i made the right decision. This doesn't mean i will never get BC,but my risk is GREATLY reduced.0 -
It was my decisionSally5 said:Surgery
MNLynn,
I had a bilater. mast. (8 wks ago) I had a choice since cancer was only found in the right. I did go through the genetic counseling. (You have to do this for the test to be covered... at least I was told this.) It takes so long. At first my oncologist said it was worth waiting a few weeks to make the right decision... (They can put a rush on it -- ) The stress of waiting wasn't helping. I turned out to be neg. but by then I had already made peace with the fact that I was going to have a bilat. mast.
This has to be your choice, not what is easier for the doctor. I had a lot of family history so it was something that was important to me. I have no regrets....
Take care.
** Your insurance should cover it even if you do one now, and then do the second later.
I had a lumpectomy first and they didn't get clear margins.
After ample research I decided to go with a bilateral mastectomy
for my own piece of mind. I didn't take the very aggressive chemo.
I did T/C and not A/T, so I took the more aggressive approach
with the mastectomy. The way I figure, both breast were exposed
to the same things what makes me think that I wouldn't get it in
the other breast. I rather loose my breasts then have to go through
this battle again. I know there's no guarantee but my surgeon said
with a mastectomy my chance of recurrence is less than 1 percent.
Ayse0 -
I too opted for bilateralaysemari said:It was my decision
I had a lumpectomy first and they didn't get clear margins.
After ample research I decided to go with a bilateral mastectomy
for my own piece of mind. I didn't take the very aggressive chemo.
I did T/C and not A/T, so I took the more aggressive approach
with the mastectomy. The way I figure, both breast were exposed
to the same things what makes me think that I wouldn't get it in
the other breast. I rather loose my breasts then have to go through
this battle again. I know there's no guarantee but my surgeon said
with a mastectomy my chance of recurrence is less than 1 percent.
Ayse
I too opted for bilateral mastectomy although my IDC was only 1.8cm and was hormone positive. The oncologist said that the survival rate was the same whether I had lumpectomy & rads or mastectomy, but I figured, I was as interested in recurrence as I am survival. It made no sense to me to have lumpectomy and if I was going to have one breast removed I would need surgery on the other for reconstruction symmetry anyway, so why not just go all the way. My surgeon's comment was 'you're going big, girl' and I did agonize over the decision, but I am so glad I decided to take the most aggressive position I could.
Likewise, I came back in the 'gray area' in the OncotypeDX test, so I could either opt for just hormone therapy or chemo and hormone therapy. I opted again to go 'whole hog' and am currently getting taxotere/cytoxin. I would rather do all I possibly can while I'm at my healthiest than face a recurrence later when I would perhaps have other health issues to complicate things. If I have a recurrence I will know I did all I could possibly have done to prevent it. If I didn't do all this and I had a recurrence I would always wonder if I could have prevented it.
Just my own rationale, but I am glad I have chosen this particular path. No regrets.
Good luck. You'll choose what's right for you.
Chickadee0 -
All very helpful . . . thanksChickadee1955 said:I too opted for bilateral
I too opted for bilateral mastectomy although my IDC was only 1.8cm and was hormone positive. The oncologist said that the survival rate was the same whether I had lumpectomy & rads or mastectomy, but I figured, I was as interested in recurrence as I am survival. It made no sense to me to have lumpectomy and if I was going to have one breast removed I would need surgery on the other for reconstruction symmetry anyway, so why not just go all the way. My surgeon's comment was 'you're going big, girl' and I did agonize over the decision, but I am so glad I decided to take the most aggressive position I could.
Likewise, I came back in the 'gray area' in the OncotypeDX test, so I could either opt for just hormone therapy or chemo and hormone therapy. I opted again to go 'whole hog' and am currently getting taxotere/cytoxin. I would rather do all I possibly can while I'm at my healthiest than face a recurrence later when I would perhaps have other health issues to complicate things. If I have a recurrence I will know I did all I could possibly have done to prevent it. If I didn't do all this and I had a recurrence I would always wonder if I could have prevented it.
Just my own rationale, but I am glad I have chosen this particular path. No regrets.
Good luck. You'll choose what's right for you.
Chickadee
Thanks all for giving me information on your decisions.
Chickadee - my situation seems pretty similar to yours . . . IDC - just under 2 cm. I think my surgeon and rad onc thought I would be "a good candidate" for a lumpectomy & rads, but at that time I choose a mastectomy of my rt breast. They thought, at that point, that the cancer had not spread to any lymph nodes, and that it was/is a non-aggressive cancer. I really didn't want to be concerned about side effects of radiation, so I opted for the mastectomy. Turns out that there was a little bit of cancer in two of the sentinel nodes, so then I was scheduled for chemo. Had the Oncotype Dx test, which showed a low recurrence score, so chemo was cancelled. Then, my med onc and one of my rad oncs didn't like how close the tumor was to my chest wall, so I ended up having rads anyway.
I, also, want to do everything I can now so to decrease my chances of ever seeing this cancer return - or have a new cancer show up. I was uncertain about the Oncotype Dx test - I read that it has been used mainly for node-negative cancers, and I was node-positive. I have also read than not all oncologists are "on-board" with the test. So, I'm hoping that we made the right decision not to have chemo - as much as I was glad not to go through that, I would do it if it meant that it would decrease my chances of a recurrence.
Anyway, my surgeon never brought up the option of a prophylactic mastectomy of my left breast while we were planning for surgery. The only time prophylactic surgeries were mentioned was by my med onc who said that, if I tested positive on the BRCA test, we may want to consider that. I feel like I have some major risks (as I had mentioned in the first post here), and I'm kind of wondering why we never discussed that. I really like my surgeon, and I do believe that he has done what he felt was in my best interest. Just wondering about some of this stuff when I hear about what others have done.
I am also ER,PR + (I started on Arimidex last month).
Wishing you the best . . .
♥ Lynn ♥0
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