Prophylactic double mastectomy and ovary removal?

[Anne]

A friend of mine has been recommended to have a prophylactic double mastectomy and her ovaries removed.  She is apparently extremely high risk - a sister and her father have both had breast cancer.   She has not had any cancer.  My friend is in her 30’s and has had all the children she would like to have.  I immediately said she needed to get a second opinion.

Beyond that, has anyone encountered this?  Have any recommendations for how she ought to proceed?

Thanks!

Anne

[ktgrok]

Has she had genetic testing done and spoken with a geneticist?

[Carol in Cal.]

Yes, I have heard of this.  There is a line of women in my family who all got breast cancer and died of it.  Thankfully these were first cousins of my grandfather, not in my direct line, and the genes don’t seem to be in my line.  There were 4 sisters, all of whom died of it, the oldest at only around 60 and the youngest before I was born so maybe at around 30.  Worse, the daughters of these women who got it got it sooner and it moved faster in them.  The remaining daughters were advised to have this surgery.  One did and still got breast cancer in the slight remaining tissue and died in her 50s I believe.  Maybe early 60s.  The other had the surgery and is still with us, 75-80ish years old now.

At the time there wasn’t genetic testing but the pattern was so obvious and relentless that you couldn’t miss it in that particular case.

[LucyStoner]

I would want a second opinion and appointment with a genetic counselor. 

[Terabith]

I have had a couple friends who have had this, but I would also want second opinion and genetic consult.  Removing ovaries has pretty major implications.  Surgical menopause is super sucky.

[lewelma]

Angelina Jolie did.  

https://www.medicinenet.com/script/main/art.asp?articlekey=169836

[Farrar]

A young friend is in the process of similar stuff right now. She had to have a great deal of genetic counseling before she came to this point.

I absolutely think it's a good idea if the genetic profile is like my friend's. At least in her case, she's doing the right thing and I'm in awe of how well she's taking it all.

[katilac]

A second opinion is never a bad idea for important medical decisions, but this is definitely something that is recommended for some people. 

[Mom_to3]

Have your firend's relatives had genetic testing? If that found a gene, then your friend could see if she inherited it. Definitely time for a genetic counselor.

[DawnM]

My cousin had a double mastectomy done.   She is very high risk.   Her mother and aunts and grandmother on that side all had breast cancer.   She was having major pre-cancer issues and decided to just have it done.

[historically accurate]

My DD's are all facing this. I (and my brother) both have the BRCA 1 gene; we got it from my father's side. My kids have a 50/50 shot of having it. However, in our case, it is a known gene, so a blood test (spit test in my case) will tell them if they carry it. The geneticist won't talk to my girls until they are 10 years younger than the cancer showed in me.  Actually the geneticist will talk to them starting at age 18, but all of the doctors we've spoken to have stated that they won't do anything until age 25. Since I was 35 when cancer was found, they can start the process of prophylactic surgery or repeated MRI/mammogram at age 25. 

Some groups your friend may want to check out are Bright Pink (awareness group for all young women but especially high risk) and FORCE (for gene carriers of all ages) if she wants to talk to other people going through it or needs to process.

Second opinion is always helpful with such a huge step.

I had the double mastectomy and oophorectomy at age 35, but I had stage 0 breast cancer. Stage 0, but I lost both breasts and my ovaries. The doctors were amazed that it had been caught so early - that doesn't happen often at younger ages. 

Edited to add: my signature says "Child" but I only have daughters. Males also have to be watchful when they have the gene, so when I say "my girls" it would be my children if I had sons as well. 

Edited August 12, 2021 by historically accurate

[TravelingChris]

9 hours ago, Carol in Cal. said:

Yes, I have heard of this.  There is a line of women in my family who all got breast cancer and died of it.  Thankfully these were first cousins of my grandfather, not in my direct line, and the genes don’t seem to be in my line.  There were 4 sisters, all of whom died of it, the oldest at only around 60 and the youngest before I was born so maybe at around 30.  Worse, the daughters of these women who got it got it sooner and it moved faster in them.  The remaining daughters were advised to have this surgery.  One did and still got breast cancer in the slight remaining tissue and died in her 50s I believe.  Maybe early 60s.  The other had the surgery and is still with us, 75-80ish years old now.

At the time there wasn’t genetic testing but the pattern was so obvious and relentless that you couldn’t miss it in that particular case.

When I was about 5, a family moved in into the garden apartment across the sidewalk and lawns for me.  The mom had this cancer issue too   They had one son when they  moved in and after they had their daughter, maybe about four or five years later, they moved into a house-and I never knew whether she got the cancer or did prophalactic or dodged the bullet-- this was in the later 60's, early 70s so no genetic testing for that.  I just remember how scared she was about getting it-  there was a tremendous amount of women in her family with Breast cancer and they were dying fairly young.

[kiwik]

I have one of the BRACA mutations.  I had my ovaries removed at about 44 I think.  I thought about getting my breasts removed but I never got my weight and it is not funded after 50 as it is no longer considered worth it. I didn't find the early menopause a problem but I think I was in pre menopause anyway.

[zimom]

BTDT have the t-shirt.   I was BRCA negative well over ten years ago but there is genetic testing now that checks for a whole host of other genetic mutations.  In my case it is another gene mutation that runs in my family that combined with family history placed my risk over 70%.   Scheduled my double mastectomy as soon as possible.   I hope to be there to see all my children graduate, get married and meet all my grandchildren, something my mother never did.  

[Guest]

2 hours ago, kiwik said:

I have one of the BRACA mutations.  I had my ovaries removed at about 44 I think.  I thought about getting my breasts removed but I never got my weight and it is not funded after 50 as it is no longer considered worth it. I didn't find the early menopause a problem but I think I was in pre menopause anyway.

Not funded after 50?? That feels so wrong to me! Is that supposed to be something like, “Well, you haven’t gotten breast cancer yet, so you don’t have more likelihood than average.”? 

[kiwik]

4 minutes ago, Quill said:

Not funded after 50?? That feels so wrong to me! Is that supposed to be something like, “Well, you haven’t gotten breast cancer yet, so you don’t have more likelihood than average.”? 

The mutation I have is characterised by breast cancer presenting before menopause.  Most people get it in their late 40's.  If you reach 50 without getting it and you have had your ovaries removed the risk is not considered high enough to justify preventative masectomy.  If I get it they will however strongly recommend removing both breasts.  I still have way higher than average risk but not the crazy high risk I had 8 years ago.  The ovary removal by itself greatly reduces the risk.  Reconstruction is only funded if you have cancer so it would have meant having no breasts.

[J-rap]

I agree with genetic counseling and a second opinion.  That said, I'm definitely supportive of people who choose this option based on their risk.  We have breast cancer in my family -- very strong.  My mother had it, her mother, her great-grandmother (interestingly it skipped her grandmother).  My mother was 42 when she had it, and it was discovered in both breasts.  This was back in the 70's, and she chose to have a double mastectomy.  Then her younger sister who had no cancer chose to have it preventatively.  

My sister and I discussed having one too, and my dh was very supportive of whatever I decided.  In the end, even though both my sister and I have very dense breast tissues making lumps hard to find, we met with a breast cancer specialist and decided to go the yearly breast MRI route -- which we've been doing now for over 15 years.  However, if we knew we had one of the powerful breast cancer genes, we most likely would have had the prophylactic double mastectomy.  I'd already decided I wouldn't want breast implants. 

I did have genetic testing about 7 years ago, and my mother did too at age 85.  We were told that the best confirmation as to whether a gene runs in the family is if someone who has actually had breast cancer is tested as well.  Surprisingly, neither of us had any of the known genes.  Obviously some kind of genetic tendency or not-yet-discovered gene runs in our family line though.  Perhaps there's some environmental factor that affects the likelihood of it developing.  My sister's and my diet is very, very different than my mother's and grandmother's...who knows!

(Also, the breast cancer in our family tends to be slower growing.  None of the women actually died of breast cancer in my family...  It was always caught early enough.  My mother is now 93!  That also was a factor in our decision to go with annual MRI's instead of a prophylactic double mastectomy.)

 

[SKL]

She can check for the breast cancer risk gene.

Her husband's opinion also matters as far as the breasts go, IMO.  From what I've heard from husbands of people with mastectomies.

I don't know why getting rid of the ovaries would be suggested.  Do they realize that will put your friend right into menopause, with all its "joys"?  And I read that early menopause can shorten one's lifespan too.

If ovarian cancer is the concern, I'd rather just get periodic scans and then remove an ovary if and when needed.

[J-rap]

12 minutes ago, SKL said:

She can check for the breast cancer risk gene.

Her husband's opinion also matters as far as the breasts go, IMO.  From what I've heard from husbands of people with mastectomies.

I don't know why getting rid of the ovaries would be suggested.  Do they realize that will put your friend right into menopause, with all its "joys"?  And I read that early menopause can shorten one's lifespan too.

If ovarian cancer is the concern, I'd rather just get periodic scans and then remove an ovary if and when needed.

No doubt this is true for some, but is complete selfishness as far as I'm concerned.  What kind of husband would not support his life partner in having this surgery if it gave her a much higher chance of a longer, healthier, worry-free life?  

Some of the strongest breast cancer genes also include ovarian cancer.  The BRCA genes involve both.  Ovarian cancer is harder to detect and often by the time there are symptoms, it's too late.  

[zimom]

11 hours ago, SKL said:

 

I don't know why getting rid of the ovaries would be suggested. 

I would imagine this depends on which mutation she has.  Which based on this in the OP first post, to me strongly suggests she has already had genetic testing.  Certain genetic mutations dramatically increase your risk of breast AND ovarian cancer.  With that mutation your chance of dying from ovarian cancer is even higher than dying from breast cancer.  The mutation I had was not associated with an increased risk of ovarian cancer.   This is why part of all of this should be genetic testing AND counseling.

And if your husband isn't on board, you need a different husband.  

 

[zimom]

11 hours ago, J-rap said:

No doubt this is true for some, but is complete selfishness as far as I'm concerned.  What kind of husband would not support his life partner in having this surgery if it gave her a much higher chance of a longer, healthier, worry-free life?  

 

I just had to quote this.   Thank you J-rap.   I would think one would need to really consider if they are with the right person if their husband was more worried about their breasts than their  life.  One of the reasons I have always hated the slogan Save the TaTas.  

[KSera]

5 minutes ago, zimom said:

One of the reasons I have always hated the slogan Save the TaTas.

Thank you for saying this. I always thought it was just me, but it always makes me feel like it’s about the breasts and not the woman. And even more so when teenage boys are encouraged to wear the slogan.

[zimom]

15 hours ago, kiwik said:

Reconstruction is only funded if you have cancer so it would have meant having no breasts.

Just curious, are you in the US?   I need to go back and re-read the laws but I'm pretty sure this is not allowed in the US.   My reconstruction is fully covered even though I have not had an actual cancer diagnosis.  Is it because the mastectomy is not covered?   My mastectomies would not have been covered when I was younger with only the family history but were once the genetic mutation was found.  

The Women's Health and Cancer Rights Act of 1998 (WHCRA) is a federal law that provides protections to patients who choose to have breast reconstruction in connection with a mastectomy.

 

[KSera]

5 minutes ago, zimom said:

Just curious, are you in the US?   I need to go back and re-read the laws but I'm pretty sure this is not allowed in the US.   My reconstruction is fully covered even though I have not had an actual cancer diagnosis.  Is it because the mastectomy is not covered?   My mastectomies would not have been covered when I was younger with only the family history but were once the genetic mutation was found.  

The Women's Health and Cancer Rights Act of 1998 (WHCRA) is a federal law that provides protections to patients who choose to have breast reconstruction in connection with a mastectomy.

 

I’m very glad to hear this is the case. When I read that earlier, it struck me as extremely unfair that our insurance covered my kid’s top surgery for being non-binary, but that someone wouldn’t have the same benefit if they had to have mastectomy for medical reasons. Maybe it’s not like that in New Zealand. 

[J-rap]

11 minutes ago, KSera said:

Thank you for saying this. I always thought it was just me, but it always makes me feel like it’s about the breasts and not the woman. And even more so when teenage boys are encouraged to wear the slogan.

I'd never heard of this slogan, but yes -- what you say is certainly spot on.

[ktgrok]

12 hours ago, SKL said:

She can check for the breast cancer risk gene.

Her husband's opinion also matters as far as the breasts go, IMO.  From what I've heard from husbands of people with mastectomies.

I don't know why getting rid of the ovaries would be suggested.  Do they realize that will put your friend right into menopause, with all its "joys"?  And I read that early menopause can shorten one's lifespan too.

If ovarian cancer is the concern, I'd rather just get periodic scans and then remove an ovary if and when needed.

The hell it does. 

[ddcrook]

16 hours ago, kiwik said:

The mutation I have is characterised by breast cancer presenting before menopause.  Most people get it in their late 40's.  If you reach 50 without getting it and you have had your ovaries removed the risk is not considered high enough to justify preventative masectomy.  If I get it they will however strongly recommend removing both breasts.  I still have way higher than average risk but not the crazy high risk I had 8 years ago.  The ovary removal by itself greatly reduces the risk.  Reconstruction is only funded if you have cancer so it would have meant having no breasts.

My sister with a brca2 mutation but no cancer got a bilateral mastectomy and reconstruction at age 54 and it was covered by her insurance. 

[Slache]

30 minutes ago, ktgrok said:

The hell it does. 

You sparked a conversation between my husband and I, who generally believe a wife should submit to her husband, and that generally her body belongs to him. He said "I do not have the right to make a decision regarding your health based on aesthetics." I thought that was good point but he struggled to say his opinion did not matter at all, just that it's completely my decision. We had different points of view. 

[ddcrook]

13 hours ago, SKL said:

I don't know why getting rid of the ovaries would be suggested.  Do they realize that will put your friend right into menopause, with all its "joys"?  And I read that early menopause can shorten one's lifespan too.

If ovarian cancer is the concern, I'd rather just get periodic scans and then remove an ovary if and when needed.

There is no good screening for ovarian cancer, so it is usually not discovered until it is advanced. Also my surgeon told me that cancer is already present in 5-10% of prophylactic oopherectomies of women with a brca mutation. 

[zimom]

55 minutes ago, ddcrook said:

My sister with a brca2 mutation but no cancer got a bilateral mastectomy and reconstruction at age 54 and it was covered by her insurance. 

Yes, I'm past 50.  Reconstructions and ALL revisions I need are covered even now that I have switched insurance from the one that originally covered my mastectomies.   Was planning on a revision a year or so ago but as we all know, Covid...  and now I need to lose that quarantine weight first for the best results  🙂   

[ktgrok]

9 hours ago, Slache said:

You sparked a conversation between my husband and I, who generally believe a wife should submit to her husband, and that generally her body belongs to him. He said "I do not have the right to make a decision regarding your health based on aesthetics." I thought that was good point but he struggled to say his opinion did not matter at all, just that it's completely my decision. We had different points of view. 

Even if I thought my husband's opinion mattered, if his opinion was that his enjoyment of my body was more important than my actual life, I'd be needing a divorce lawyer in addition to a cancer specialist. 

If ANYONE is married to a man that would expect her to sacrifice her very life so he can have nice boobies to look at and play with, they should seek counseling immediately. 

[Halftime Hope]

10 hours ago, Slache said:

You sparked a conversation between my husband and I, who generally believe a wife should submit to her husband, and that generally her body belongs to him. He said "I do not have the right to make a decision regarding your health based on aesthetics." I thought that was good point but he struggled to say his opinion did not matter at all, just that it's completely my decision. We had different points of view. 

Please don't quote. 

My husband and I would have said that it was a decision we made together, but then he would have immediately asked what I wanted and supported me. As it was, he took care of some of my gruesome post-surgery physical needs, and I for him when he had an equally incapacitating cardiac surgery two years later. (My m and recon were nearly as taxing a recovery as his 4bp surgery.) 

Please don't quote. 

[SKL]

7 hours ago, ktgrok said:

Even if I thought my husband's opinion mattered, if his opinion was that his enjoyment of my body was more important than my actual life, I'd be needing a divorce lawyer in addition to a cancer specialist. 

If ANYONE is married to a man that would expect her to sacrifice her very life so he can have nice boobies to look at and play with, they should seek counseling immediately. 

I agree that if he cares more about his personal enjoyment than your life, he needs to go.

However, it is not clear in the OP that this is a choice between life and husband privileges.  I mean we all have a risk of breast cancer, but most of us will not die of that.  Depending on the specific risk, mastectomy isn't usually the only way to manage it.

I also think that any decent husband would work with the wife on doing the research and weighing the pros and cons.

I dunno, if I were the woman in this situation, I'd want to know what my dh thought of it, even if it didn't change my decision.

[Selkie]

46 minutes ago, SKL said:

I agree that if he cares more about his personal enjoyment than your life, he needs to go.

However, it is not clear in the OP that this is a choice between life and husband privileges.  I mean we all have a risk of breast cancer, but most of us will not die of that.  Depending on the specific risk, mastectomy isn't usually the only way to manage it.

I also think that any decent husband would work with the wife on doing the research and weighing the pros and cons.

I dunno, if I were the woman in this situation, I'd want to know what my dh thought of it, even if it didn't change my decision.

The OP describes her friend as being extremely high risk. That makes her different than "most of us". Apparently her doctor(s) think her life is at significant risk, or I doubt they would be recommending such major surgeries.

[ktgrok]

1 hour ago, SKL said:

 

I also think that any decent husband would work with the wife on doing the research and weighing the pros and cons.

I dunno, if I were the woman in this situation, I'd want to know what my dh thought of it, even if it didn't change my decision.

In the sense I would discuss all major decisions with him, yes. But I was responding to the idea that her husband's opinion matters "as far as the breasts". As if he got a special say in the decision because guys like to touch breasts. 

[Lecka]

SKL — aren’t you a single woman who adopted your kids as a single woman?

So what you think about a marital relationship is pretty theoretical?

 

[SKL]

7 hours ago, Lecka said:

SKL — aren’t you a single woman who adopted your kids as a single woman?

So what you think about a marital relationship is pretty theoretical?

 

I said based on what I've heard from husbands.

Y'all are free to have your own opinions.  Just ignore me.

[kiwik]

On 8/14/2021 at 2:03 AM, J-rap said:

No doubt this is true for some, but is complete selfishness as far as I'm concerned.  What kind of husband would not support his life partner in having this surgery if it gave her a much higher chance of a longer, healthier, worry-free life?  

Some of the strongest breast cancer genes also include ovarian cancer.  The BRCA genes involve both.  Ovarian cancer is harder to detect and often by the time there are symptoms, it's too late.  

This.  Ovarian cancer risk is huge and the oestrogen produced by the ovaries is involved in the breast cancer.  There is no reliable screen for ovarian cancer and the early symptoms are usually missed and it is detected too late to treat.  By removing my ovaries I greatly reduced (but did not eliminate) the risk of ovarian cancer and reduced the risk of breast cancer a significant amount.  The early menopause was not a major problem though it must be for some.

[kiwik]

On 8/14/2021 at 3:58 PM, zimom said:

Yes, I'm past 50.  Reconstructions and ALL revisions I need are covered even now that I have switched insurance from the one that originally covered my mastectomies.   Was planning on a revision a year or so ago but as we all know, Covid...  and now I need to lose that quarantine weight first for the best results  🙂   

You live in different country.  We have free public health care here but within parameters.  With my genetic variation the cost/benefit ratio doesn't justify funding.  If I had private insurance it may be different. There is from time to time funding for reconstruction after a prophylactic mastectomy but it is not enough to meet the demand. I don't really mind.  I got free MRIs every year until I was 50 plus annual mammograms and now still get mammograms.  Before I had my ovaries removed I got ultrasounds and boosters every 6 months too.  The operation was covered and if I get cancer that will be covered too.

[kiwik]

On 8/15/2021 at 8:36 AM, SKL said:

I agree that if he cares more about his personal enjoyment than your life, he needs to go.

However, it is not clear in the OP that this is a choice between life and husband privileges.  I mean we all have a risk of breast cancer, but most of us will not die of that.  Depending on the specific risk, mastectomy isn't usually the only way to manage it.

I also think that any decent husband would work with the wife on doing the research and weighing the pros and cons.

I dunno, if I were the woman in this situation, I'd want to know what my dh thought of it, even if it didn't change my decision.

Assuming doctors in your part of the world have the same general ethics: no doctor is going to do a long, potentially dangerous operation unless it is medically inficated.  And no medical system or insurance company would fund it.  It seems reasonable to assume then that the person the question is about has one of the known mutations that greatly increase risk.  I think at one point I had a 75% chance of developing breast or ovarian cancer.

[kiwik]

On 8/14/2021 at 1:57 PM, zimom said:

Just curious, are you in the US?   I need to go back and re-read the laws but I'm pretty sure this is not allowed in the US.   My reconstruction is fully covered even though I have not had an actual cancer diagnosis.  Is it because the mastectomy is not covered?   My mastectomies would not have been covered when I was younger with only the family history but were once the genetic mutation was found.  

The Women's Health and Cancer Rights Act of 1998 (WHCRA) is a federal law that provides protections to patients who choose to have breast reconstruction in connection with a mastectomy.

 

In New Zealand.  We are a small country with a public health system.  The money can only go so far.  The mastectomy would have been covered prior to 50. There is sometimes funding for reconstruction but it seems to run out quickly.  My mother chose not to bother after her second lot of cancer and to be honest not having to wear an under wire bra quite appeals.  If I get cancer I probably won't bother.  It may not be impossible to get a mastectomy now but the specialists wouldn't recommend it so I didn't ask.

Edited August 27, 2021 by kiwik