Young, Strong Family History, Looking at double mastectomy
I am writing on behalf of my step sister in order to find out more from women who have had a double mastectomy, for both treatment and prevention.
She is 20 yrs old but her mother was diagnosed with breast cancer in her early 30s and died 6 years later. Her grandmother was also diagnosed in her early thirties and died 2 years later. Her mother was an only child and my step sister has no other biological sisters.
We have been to see a genetic specialist today who has advised us that she would not be appropriate for genetic testing, but would be for breast MRI from age 25. Her concern is, with the strong family history and heartache from losing her own mother at such a young age, she wants to do her very best to avoid going down that road. She is waiting to be seen by a breast surgeon but is seriously considering a double mastectomy as prevention alongside a breast reconstruction. Both her and our family do understand the severity of this kind of operation however we would like to know what other people think of this possible decision from a personal and observable prospective. She is still very young but want to gain as gooda understanding about this as we can. We have been told that having the double mastectomy would give her a 90-95% chance of preventing breast cancer. And furthermore reassurance throughout life that breast cancer wont necessarily be waiting around the corner.
Furthermore in regards to a reconstruction. Is there a possibility to have the reconstruction at the same time of the mastectomy? How long is the recovery? Would she be able to keep her skin and nipples?
We know so little about this right now, given we haven't spoken to a specialist but we would like to hear from anyone who has even the slightest advice to give about this topic as its quite daunting for such a young woman.
Thankyou for listening.
Comments
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Just curious... Do you know the reason why genetic testing wasn't offered to her in view of what sounds like a pretty strong family history? Deanna
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I am in the same boat as your sister and have been seeing specialist, here's what I have learned. My aunt, mom and two sisters all had breast cancer and all tested negative for BRCA 1/2 therefore the genetic specialist said even though there is some gene running through my family it can't be tested at this time. She put me at a 40% risk (I also have dense breast which added to it). After consulting with a breast surgeon, plastic surgeon and oncologyst I have decided to do a skin sparing prophylactic double mastectomy with immediate reconstruction using expanders. The mastectomy and reconstruction is done together. I will keep my breast skin however I choose to not keep my nipples because I understand the risk they could hold in the future. I can get those reconstructed later if I want to There is a nipple sparing process that allows you to keep your nipple. I was told approx 3 weeks recovery from mastectomy - basically until drain tubes are out. Then they expand the temporary implant over 8 weeks. The final stage is 8 weeks later when expanders gets changed to implant. We can work during the expanders and after the exchange it is about a week recovery. Total time of dealing with it is approx 5 months. Long process but in my opinion not as long as it takes for my family to fight their battle !
Hope this helps.
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My mother had Stage 3 breast cancer at 40 and my sister had Stage 2 with lymph involvement at 44. At 35, I was on a mission to be on the breast cancer lookout. Annual mammograms and annual MRIs since I was 35. A handful of years later, ADH was found and removed in 2008 and then again in 2009. This September I was diagnosed early with DCIS in the left breast. The area was large so I opted for a BMX with reconstruction. By the way, in all these cases, the MRI found the breast problems and not the mammogram.
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I think that you should take your step-sister to a geneticist at a well-known cancer center and keep seeking until you find someone willing to evaluate her family history sufficiently to accurately rule out the need for genetic testing. The age of her maternal relatives at the time of diagnosis and the fact that they did not survive, would seem to me to be worthy of further investigation. Also, if your SS can obtain a copy of her mother's death certificate, it might not be too late to obtain copies of her mother's medical records. Knowing what type of cancer her mother had, might be extremely beneficial to her case for genetic testing.
I think that the fact that her mother and grandmother were diagnosed at such a young age and both succumbed to the disease, would appear to have additional merit in her consideration for a prophy BMX. But I would want to really flog the heck out of this issue and consult with some of the best and brightest out there regarding this decision. I know that my niece - in her mid-20's - is considering a prophy BMX due to our three[perhaps four] generational family history of bc. But she is thinking somewhere in her forties, if "the cure which is out there", still isn't. However, we have only lost one [out of six of us] diagnosed to breast cancer, and only one of us was under the age of 38 when diagnosed. So my heart goes out to you as you work with your SS. You are such a sweetie to be doing this on her behalf.
Hugs....
Deborah[
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Oh 20 is sooo young. I would talk to a couple of surgeons and get their opinion. It would be nice if she could wait until after she had children and maybe do it around 30 - with careful monitoring until then. I think they would test for the gene - then she would know for sure and have all the information.
I was able to have nipple sparing - no cancer here - ALH - that might be an option for her. Not all surgeons do it however. The surgery was not bad for me at all - but have to be really careful not to lift arms or anything heavy for quite awhile. Do alot of research and talk to others and to doctors and get their opinions. Good luck - Valerie
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Hi Daisydoo123,
I agree with the others who are surprised your sister was told she doesn't need genetic testing. Having a mother and grandmother who were diagnosed and died at young ages is one of the specific genetic risk factors for breast control. Did the counselor give reasons for not recommending it for your sister? If not, maybe you could get a second opinion from a board-certified genetic counselor to help her assess her risk.
You can check here: National Society of Genetic Counselors to find a certified genetic counselor.
Here's another source for information on preventive mastectomy:
http://www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy
Best of luck to you and your sister, and thanks for being so supportive and helpful for her!
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Daisydoo123,
My mother died from breast cancer when I was 4 years old. Devastated our family of 3 kids and father. Older sister and I spent our entire lives convinced that we would also die from it. In a weird way, it was a relief when I finally was diagnosed with BC in 2007 because I could finally deal with it rather than just fear it. So I completely understand where your sister is coming from.
I never had the genetic test. My sister did, once I was diagnosed... she was negative (yea!). I have no children, no other sisters, no nieces/nephews on my mothers' side of the family. Since I already had cancer and (as you'll read) had all the recommended surgeries to try and prevent further cancers, there seemed no point to my doing the test so I never have.
Once I was diagnosed, I had a bilateral mastectomy. Lumpectomy wasn't even discussed, as I had no intention of taking any chances of this coming back. My cancer was only on one side, but I didn't want to deal with cancer in the future, so easily decided on bilateral. I also, later, had my tubes and ovaries removed since there is a slight increase of ovarian cancer in those who had ER+ breast cancer (such as I)... another no-brainer for me. Some people have been critical of my decisions to remove perfectly good body parts before there is any sign of cancer; I can't explain it to people who haven't lived with the threat of cancer over them their whole lives... I've seen first-hand what cancer can do, and I have no intention of letting it do that to me.
I also had immediate breast reconstruction during my BC surgery... had both surgeries done at the same time. I'm quite small (B cup) so it [reconstruction] was fairly easy for me... I didn't have to have my expanders "expanded". They swapped in the permanent implants about a year later. You would have to ask your doctor about the nipples... I'm not sure if they normally keep them or not... I can't remember if mine were removed because they were connected to the cancerous tissue, or it they are always removed in the case of a mastectomy due to BC. As for me, I had my last procedure in my breast reconstruction: had nipple tattoos done this year. They look very realistic (but they have no sensation, so it's not the same... if she can keep them without decreasing her chance of cancer, tell her to keep them).
When I say the reconstruction was fairly easy for me, I don't mean to imply that it or the mastectomies are a piece of cake. Easily the hardest thing I've ever had to deal with. But I'm a pretty big whimp when it comes to pain, so you can take heart from that-- if I was able to make it through it all, anyone can:-) The hardest part was dealing with lack of sleep the first few weeks. Once I figured out how to sleep "comfortably" life was MUCH better. I even eventually started to sleep on my stomach again, something I always used to do. Here I am, 4 years later (woo hoo!!), and you would never guess I had had cancer. Or that my "girls" are fake!
Good luck, whatever your step-sister decides. My thoughts are with her as she makes these hard decisions.
-Sally
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daisydoo, I am trying to imagine a genetic specialist NOT recommending BRCA testing for your step sister and it leaves me with one huge conclusion, FIND a certified genetic counselor and forget about specialist seen today. Start over and gather opinions since she needs the proper guidance.
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Hi the preventative mastectomy with reconstruction at the same time is what I chose to do because so many deaths in my family from BC. I had my surgery on may 26 th 2011 I'm about five months post surgery and I'm relieved. After you have implants with no breast tissue, your breasts feel smooth and not full of uneven or lumpy tissue--- it feels like an implant looks, but with your skin over it. And they are soft. I had a mastectomy by a general surgeon then the plastic surgeon did my implants in one surgery the plastic surgeon used alloderm to help support the new implants. They are high profile sillicone implants smooh 500 cc's. My sister and I both tested BRACA negative but the doctor told me the BRACA gene is ONE BC gene identified, there are many other BC genes that are not identiied in a blood test. I guess with her strong family history it's irrelevant but it would be good to know for her future children and other family members....
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I read your post again daisydoo, her doctor sounds wimpy, my first doctor I saw was a wimp, go to a doctor with some conviction and balls! You want a doctor with courage and knowledge to do the right thing. He sounds like a wait, watch and see doctor. F#!# that find a smart doctor. Your sister already had to watch her beloved mom die of BC, you want a doctor who is strong and will work with your sister for the best solution that makes your sister in charge of her health.
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WOW, FIrst of all can I just say how greatful I am at all the replys. This is such a huge big scary topic in our family and its so comforting to hear opinions and advice from other women who have similar cirmcumstances. Thankyou from my entire family.
OK, so from what we were told from the genetic specialist, because my SS does not have a living family member who has had breast cancer, she is not eligable for the testing. The way he put it to us was, there needs to be a family memeber with the gene change for there then to be a test for her to find the same change. Without a surviving member of breatcancer to test against, there is a less than one percent chance in finding anything relevant in testing her genes. Furhtermore the results would not change the fact that she would still reccommend to be screened through breast MRI from age 25. The test is available to us, not obviously through medicare rebate and would cost $2000. WHich in this case ofcourse money is not an issue. However after hearing from the opinions hear I think it would be an idea to have a second opinion perhaps just to get a better understanding with the relevance of genetic testing. Is this the understanding of others? Before going to see the genetic specialist I had that understanding that if the testing is available why wouldnt you get it? But this Doctor has made me think otherwise.
The idea of a double mastectomy is nothing we would ever want to force upon my SS at such a young age as I am sure its not something you take lightly. However words straight from her mouth "I dont want to live my life waiting for the cancer to come, If i have children one day and then get cancer and have to leave them I will always think there was more I could have done if I had of had the preventative surgery. The genetic counsellor has our families consent to access her mothers records and therefore alot of investigation is in place at the moment in regards to her and her mothers cancers. But from my understanding it was very aggressive and the onset was from a relatively young age and it was after having children. With those things in mind, the surgery is looking like a very possible option. We intend on talking to a number of surgeons and gathering as much information as possible to make an educated decision. But alreadt I feel better after hearing your thoughts here. I cant imagine what its like to have BD or lose someone to BC and it would be unimaginable to lose her that is why I am doing all I can to help her. Because she is so young and obviously body image is a big thing when you are 20 the information on skin and nipple sparing procedures is really helpful. My SS still has alot to consider but at an age now where she is still studying and not yet working full time we are looking into as much as possible while she has time on her side.
Thankyou again
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daisydoo, again I would strongly recommend genetic counseling for her! I have a significant family history of BC & OVCA on both sides of my family. Five years ago i tested negative for any mutations. I was also the first "previvor" family member to test with no questions asked and despite no other affected members testing prior. My testing was approved based on family history alone and fully authorized. She has many options available to her, but counseling would be best, i feel. Any decisions to test or not to test would be totally her call. I applaud you for being so proactive on her behalf since knowledge is power. Nipple sparing surgery is an excellent option for risk reduction. My breasts look far better than my originals and the relief is priceless. Undoubtedly, surgery is not for everyone and comes with risks. You are doing everything possible by seeking opinions and gathering all the facts to allow an infomed decision. Your sister is lucky to have u by her side!!
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Daisydoo - you are right to find another genetic counselor - I have NO FAMILY HISTORY of any cancer at all, but was dx'd at 32 with invasive breast cancer (found by accident, nothing palpable) and the first thing my oncologist suggested was BRCA testing - I have never heard the excuse this guy gave your SS about having a living relative - in fact, having relatives that have died w/o you knowing what they died from is one of the things that suggests a BRCA mutation might be lurking!?
I had a second primary cancer dx'd in my other breast this past June and had a bilateral skin/nipple-sparing mastectomy with immediate reconstruction (saline implants placed at surgery, plus Alloderm, which creates sort of a hammock for the implants at the inside bottom of each breast). It's not been easy, and your SS is so young, but I'll tell you that I've been happy, so far, with my results and recovery (I'm only 1 month out from surgery).
You are awesome for helping her through this - this is the worst time - the data-collection, decision-making, etc. Do you guys know about the Young Survival Coalition? (www.youngsurvival.org) - dedicated to the specific issues of young women w/BC. They were a lifeline for me when I was first dx'd in my early 30's and there are, unfortunately, a significant number of women in their 20's who're on their message boards.
Keeping you guys in my thoughts.
Sarah
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Hi again Daisydoo,
Re: "From what we were told from the genetic specialist, because my SS does not have a living family member who has had breast cancer, she is not eligable for the testing. The way he put it to us was, there needs to be a family memeber with the gene change for there then to be a test for her to find the same change. Without a surviving member of breatcancer to test against, there is a less than one percent chance in finding anything relevant in testing her genes. Furhtermore the results would not change the fact that she would still reccommend to be screened through breast MRI from age 25."
Sorry, but your genetic specialist is just plain wrong on several counts. Please read the links I posted above, and see a different genetic counselor. You're right to question his advice. Your stepsister needs to have an accurate understanding of her risks so she can make informed decisions. She's definitely lucky to have you helping her question things and navigate all this. It can be so overwhelming. Anyway, please help her get an appointment with a certified genetic counselor. They'll go over her personal and family history and help her decide whether or not testing is appropriate for her. Try not to get too far ahead of yourselves for now - take it one step at a time. Keep in touch and let your sister know she's welcome here too. Take care!
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Agree w/ above. I'm a medical student, and I can assure you she CAN be tested. However, the full breast cancer panel is much more than BRCA, and the cost can be several thousand dollars. If you go to a large academic center, ideally a cancer center, they will likely be able to offset some of the costs. They will also be comfortable handling the insurance company to ensure that the company pays, if that's possible in her situation. I think the back story with your step's counselor is that they don't have the ability to manage the billing in her situation.
Genetic counselors are not a good place to receive advice on screening MRI/mammo. She needs to see a gynecologist, ideally someone she likes personally. Failing that, someone in internal medicine or family medicine who is well connected with the local breast cancer treatment team. That physician, whether gyn or otherwise, is the best person to advise her on when/if mastectomy is the way to go, and then point her to someone who can provide a second opinion. One of the hazards of being young and high risk is after a couple of normal screens, it can be easy to skip a few years. She's young, maybe moving around, maybe with young kids, maybe uninsured. She needs to start finding physicians who will nudge her into following through, and that she likes enough to go back (rather than wanting to avoid seeing them).
How do you figure out the "local breast cancer treatment team?" Ask your family to ask their doctors. As posted elsewhere, when you are looking for a surgeon/oncologist/etc, you'll start hearing the same names over and over again. Those are the doctors you want. Failing that, go to the nearest cancer center.
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your sister is lucky to have you daisy, this is hard to go through alone. i also have a very strong family history grandma died @ 49, aunt died @ 34. i had a b9 tumor removed @ 29. annual mammos since. this year, i learned that my great grandfather had bc, & another aunt just tested BRCA2+. the specialist ordered MRI just based on that. nothing showed on my mammo. i ended up having 5 core needle biopsies. (all B9 so far) but i couldnt get a clear diagnosis as to what the lumps were or how to treat them. the 1st surgeon i saw pretty muched laughed @ me & called PBMX a 'trend'. up to this point noone even suggested a BRCA test for me. sooo. i 'fired' those fools, went & got tested on my own, & took myself to a well known cancer center. i knew i wanted PBMX reguardless of my results. there was no way i was comfortable with 'watching & waiting'. this surgeon agreed & approved me for the surgery before my results came back (which did turn out to be +) i will be having my surgery in december. long story short, get a 2nd opinion. get 43 opinions if you have to until you find one on your side. it is a very personal decision. good luck to you & your sister. hugs & prayers.
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i'd do a prophylactic mastectomy tomorrow if it werent for my fear of general anesthesia. i'm far too anxious for surgery but i'd love nothing more than to put 95% of this breast cancer fear behind me. i would never recommend the mastectomy without doing genetic testing though. she could end up doing something drastic for no urgent reason. plus there are many women that opt for heavy monitoring. christina applegate was brca+ and didn't do the surgery until her diagnosis. conservative treatment can work if you stick to it and don't mind going back to the drawing board every year. but if she desperately wants this behind her, surgery is a good option if she's brca+
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Hiya I have brca2 gene and had a preventitive masectomy in 2010 I was tested for the gene as all female members of my family had developed breast cancer my aunty survived breast cancer and was given the choice to be tested for the gene then all other family members were given the option. I had expanders put in when i had my bi-lateral masectomy as i wanted to be a cup size bigger but you can have permanent implants put in at the same time as the masectomy as well. You can keep nipples and skin if you choose. One thing I will say is I am 25 now and although my cousins operations all went fine I have had complications my expanders broke through the skin so had to be removed and I was left with scarring and mishaped also I had no breasts at all for 6month then when I had the expanders put in again to stretch my skin as I had lost a lot of skin due to necrosis I had a haematoma. I am still waiting for the shape of my breasts to be improved as they look a mess and I also am still waiting for my expanders to be replaced for permanent implants. I tell you this as when I made my choice to have the masectomy I was told the risks were low and if I had heard about what has happened to me to someone else I would have thought about it alot more as my breasts will never look normal again and I have lots of scars x
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I also had a strong history of cancer in my family and developed DCIS nine years ago. I chose to have a lumpectomy and I've been fine ever since. My aunt also developed DCIS and chose a double mastectomy. Each of us has to make her own decision as to which treatment we prefer.
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