20 and considering double mastectomy and recon-- opinions?

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Emilygt
Emilygt Member Posts: 1
edited June 2014 in High Risk for Breast Cancer

Hi everyone,



I just found this forum today, and I thought itd be a good place to get advice. I did see another thread with a similar subject and it was very useful, but my situation is a bit different so I thought I'd start a new one to ask for advice.



I'm 20 years old, and my mom died at 47 one year ago after a horrible 10 year battle with breast cancer. It was a miracle that she lived 10 years with it constantly coming back and spreading. When she was diagnosed at 37, she was told it had been growing for about 10 years.



I recently went for a clinical breast exam and found out that my breasts are extremely lumpy. There were several prominent lumps, so I went to see my moms breast surgeon. Fortunately, all my moms doctors were great and also very fond of her so they have been very helpful to me so far and I have a lot of trust in them. The breast surgeon thinks the lumps are nothing to worry about, but also calculated my lifetime risk and I am in a high risk category, meanings options are being vigilant, tamoxifen (which I do not want to take), or a double mastectomy and recon.



I was leaving for vacation right after that appt, so I have to wait until next week to meet with the plastic surgeon and the genetic counselor. But before, all I knew of my family history was my moms aggressive case and that one of her father's sisters had it. Since, I've learned that my gramps (mothers dad)'s line is riddled with cancer and BC. His grandmother died young for unknown reasons, his mother has BC, of his 8 siblings, 2 had BC (one of those now has ovarian), one sister had cancer of unknown origin, one brother had prostate cancer, one brother died at 12 of a brain tumor, and one sister may have had cancer but no one can remember. Then my mom had breast cancer, one of his sisters daughters also had premenopausal BC (and now has suspicious polyps in her cervix), and one of his siblings sons had Hodgkins lymphoma.



Quite the family history, isn't it?? That's only my mom's dad's line.



Between my high risk, my crazy family history (which my drs don't yet know about), and my extremely lumpy breasts (which will make it very difficult for me to properly monitor them), I am 99.9% sure that I want to get the double mast. with recon -- the huge reduction in risk would take so much off my mind. My mom handled her battle with grace and positivity, but it was always far from pretty. It's had a huge effect on my younger sister and I, since literally almost every memory we have is from life with mom battling BC. I can't imagine myself, my future husband and kids going through the same thing.



Right now, I am still in school. Besides a boyfriend of 4 years (who is very supportive of me getting this procedure as long as I'm comfortable with it), I have no "obligations" to anyone but myself-- no full time job, no kids, no other commitments... Besides school, which I have a long summer break from. I have a feeling that this or next summer is probably the best time for me to do this. I am young, in good health, and while this will certainly take away from summer fun, it'll be much easier for me to do this while I have a summer break rather than asking to take off time from work, worrying about being able to pick up my kids, etc.



I am not attached to having natural boobs since this surgery reduces my risk so greatly. I am a little concerned about the painfulness of the surgery, however.



I currently am size 34-36 D, and I would probably ask that when recon is done, I would be a size B or C. Does a reduction in size mean that I wouldn't need expanders? What are they for? How long does recovery usually take? I'd especially love to hear from someone young and healthy who did not have to contend with chemo/radiation while recovering from surgery, since I'm wondering if that makes recovery easier (being healthy, that is).



I know this is completely a personal decision, and that I'll probably learn more about this come the end of next week when I talk to the other drs, but it's been on my mind constantly and I'd really like to hear opinions of those who have been in similar situations or who have been through similar things.



Sorry for such a long post, and thank you so much for any help :)

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  • lele3737
    lele3737 Member Posts: 45
    edited February 2012

    I am not exactly the person you are looking for, but close....



    I had neoadjuvant chemotherapy (chemo before surgery), a double mastectomy with expanders....still in the recovery phase right now. I am 32 and I am BRCA positive.



    I suggest waiting until you get the genetic testing results back before scheduling anything. With that being said....



    I was a 40 D or DD before all of this, and while they were able to save a lot of akin, I have to have expanders. But, I would assume depending on the surgeon, you should be able to go straight to implants.



    A very close friend of mine was diagnosed with BC and was doing great a month after (well, great until chemo started).



    I know it's not exact, but I hope it helps.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    wow, you have a lot to think about.  I'm so sorry you lost your mom.

    I had chemo and radiation, but I can say, yes, your healing time and results will probably be faster and better than those undergoing treatment.  If I were you, I'd do it.  You will probably need tissue expanders, though and that is pretty painful, I'm not going to lie.  However, you might not if you do a tissue transfer - is that an option?  

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  • purelove5
    purelove5 Member Posts: 26
    edited February 2012

    Hi!

    My Mom has had BC 3 times and a Diep Mastectomy and she had a cousin pass from it. I have great grandmothers that had ovarian cancer. My Aunt on my Dad's side passed from BC...& there's more. A little over a year ago I had genetic testing done a came back Brac1 positive putting me at a 90% chance of BC. I just turned 24 and very active. In November I had a double mastectomy and tomorrow I will get my implants(which I am so glad I am almost done). I was a 34 D and am going to get a C cup. You will need the Tissue expanders so they can stretch your skin back out slowly and help with blood flow going to your nipples. When they remove the breast tissue it causes internal scarring so it kinda shrinks up a bit so you don't want to stress your skin. I know how hard this decision is. It took a year for me to make the decision and I had started Breast MRI's and ovarian ultrasound check ups. I was really concerned about getting back to being as active as I was. I run, surf, bike, kickbox, yoga...everything...I feel that I will get back to that. Right now I feel great but haven't wanted to work out so I don't injury myself or over do it and feel 100% going into my surgery tomorrow. The process has gone by a lot faster than I expected. I had my mastectomy Nov. 8 and they had told me I would probably get my implants April or May but here I am finishing in Feb! The first expansion was painful since I was still quite sore from the mastectomy but all the others were painless. You just feel tightness for a few days after. I did have some bruising/scabbing on my right nipple but it healed up fine. The hardest part for me was having the drains and only being able to sleep on my back. Anyways...I could go on but just let me know if you have ANY questions! I know it is so much to take it but I do know the second I got out of my surgery I felt the biggest relief ever! I am the youngest of 6 kids and my Mom was first diagnosed when I was 9...it has been my life and I don't want that for my family.

    Please feel free to ask me anything! You can also look at my threads and just see some of the responses I got to some of my questions as they may be some things you want to know!

    Much Love*

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  • purelove5
    purelove5 Member Posts: 26
    edited February 2012

    Another thing I wanted to add was I found it very easy to have my surgery during the winter months so I could dress in layers and scarves. No one ever noticed and I felt comfortable. You will live in sports bras the whole time too! *

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  • clariceak
    clariceak Member Posts: 752
    edited February 2012

    You sound incredbly mature and thoughtful about potentially removing your breasts to save your life.  I had a strong family history and ended up with bc, as well as my younger sister.  After I was dxed my youngest sister decided to have bilateral masectomy.  She did not have bc, and although she was sore as you would expect after major surgery, she was able to resume her normal activities quite quickly.  From what I understand, having reconstruction can be long and uncomfortable with expanders.  You may want to go to the thread that deals directly with reconstruction to get a better idea of what you might face.

    Of course, I wish I had opted for a bilat much earlier as I have two young daughters and don't want to put them through the pain of seeing me die of bc.  I wish you the best.

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  • eulabt
    eulabt Member Posts: 194
    edited February 2012

    Emily, You are a very amazing young woman. I am older, but had a BMX with expanders. Depending on your PS, you may be able to go right to implants. My PS didn't realize that I wanted to stay small and he felt that there was a chance that I could have gone stright to implants. The expanders were hard for me but start to finish the process took just over 3 months. If I was in your shoes, I would do the same thing. I also have an extensive history and at the age of 40, was diagnosed. Now my daughters feel like you do. Good luck and let us help you in anyway that we can. 

    Hugs,

    Eula 

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  • beacon800
    beacon800 Member Posts: 922
    edited February 2012

    Really relate to your post, though I went thru at an an older age than you.  Pretty much my family hx was bad and my breasts fibrocystic, dense and always presenting something weird.  When I got a precancer marker (LCIS) I figured I had enuf and did the BMX.  I did not do recon, so that is a big difference, but I'll tell ya that the whole thing worked out great and I am totally active and have full movement, no pain and no problems.

    Prior to all this I met with the ladies from FORCE and I recommend you visit their website and see if they meet in your area.  They all have bad family hx, like you and most have bilateral MX.  Meeting these ladies was great for me cause I could see they were normal, functioning people post surgery and it gave confidence.

    BTW, I did the BRCA tests and it was negative but that is not end all as there is much left to be discovered.  Good on you to take control of your health and destiny! 

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  • huskylover
    huskylover Member Posts: 14
    edited February 2012

    Hi Emily!   Sorry you have to make such a big decision at  such a young age.  I will be undergoing a prophylactic nipple and skin sparing bmx with immediate reconstruction  at the end of this month.  I've never had BC but had radiation for Hodgkin's disease in the 80's.  I'm now 40 and in good health.  I decided to have the surgery after having a BC scare before the holidays and realized, like you, that I was high risk and didn't want to take any chances.  The plastic surgeon that I met with said I would not need expanders and that she would put silicone implants over my muscles.  I'm very small chested(32a) so the implants can be no bigger then 300cc's.  My "foobs"  will be larger than my god-given "girls":-)  My recovery time is estimated at 2 weeks.  You're bigger chested then me so I don't know how that impacts the surgeons decision.  Best wishes and keep us posted.

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2012

    Emily, do you know if any of the family members on your mother's side have ever had genetic testing?  This could be very important.  If in fact the BRCA genetic mutation is in your family, through your grandfather's line, then that would explain all the cases of breast cancer and ovarian cancer and prostate cancer.  However if the BRCA genetic mutation is in your family, it doesn't mean that you have it.  You may have inherited this gene from your Dad's side of the family, not your Mom's.  The odds are 50/50.  So in fact if it is the BRCA gene that's causing all this cancer, that might actually be good news for you because then it can be determined if you inherited the mutation or not.  If you did, you may want to proceed with your plan to have the bilateral mastectomy.  But if you didn't, then you likely have the same level of risk as the average woman.

    Assessing your risk level is more difficult if the gene is not in your family.  In that case, no one knows what's been causing all these cases of breast cancer so there's no way to know if you are at high risk or not - but the assumption will be made that you are. So my advice is that before you do anything else, you determine if anyone in your family who has already had breast cancer, ovarian cancer or prostate cancer has been tested for the BRCA mutation, and if so, what the result was.  And if no one has been tested, see if you can encourage one of your family members - someone who has one of those 3 types of cancer - to get tested.  

    The surgery you are considering is huge, and will impact the rest of your life.  If you truly are high risk, then it might be a very wise thing to do.  But if you aren't high risk at all, then you might be putting yourself through this for no reason.  

    Good luck! 

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  • beacon800
    beacon800 Member Posts: 922
    edited February 2012

    Beesie is making a good point. If you can test someone with bc in your family for brca and they are positive then you have an answer. If you subsequently test negative you are not in the same risk group as those family members. My genetic counselor, Allison Kurian at Stanford, just did a great study showing the BRCA negative members of BRCA positive families are not at increased risk. Is really great news. In my case the people were all dead already, (my mom, her aunts, my grandfather) so it was not possible to do this work.

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  • purelove5
    purelove5 Member Posts: 26
    edited February 2012

    Hello again! Had my exchange surgery this morning and I am feeling good. The implants feel a lot better & softer than the expanders. My Mom was brac2 positive and my sister was negative. The genetic testing is a good thing to do! I do recommend reading up on all the different types of surgeries you are a candidate for. I did the expanders to implant. My surgeon doesn't even do the immediate to implants(even with me going smaller)since it is a little risky just with how your skin can react and how your implants will place. The other surgery I was a candidate for was the Lattisimus one where they use a musle along shoulder blade in your back. Since I am active they said it wasn't a good idea cause those muscles could weaken or react when I swim or work out. Do lots of reasearch. I waited a year and fortunately used my Mom's same surgeons who are amazing. See a few surgeons or as many it takes till you feel comfortable with them.

    *

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  • LISAMG
    LISAMG Member Posts: 639
    edited February 2012

    Go to www.bebrightpink.com  for the BEST up to date information, resources and support for young women like you.

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited February 2012

    I'm not as young as you. You certainly have much to think about. I definitely agree that genetic testing is a great first step as it could guide some of your decisions.

    I had a unilateral mastectomy about 2 months ago. I'm lucky and even though I did have some invasive cancer, I did not end up needing radiation or chemo. The recovery for me was doable, I was off work for 6 weeks or so. I'm a teacher, so very active at work.

    It might be worth looking at DIEP or some other autologous surgery where they take your own tissue from elsewhere (for me from my belly) and use it to reconstruct the breast. Not everyone is aware of all of the reconstruction options that are available, so I figured I should throw that out there. Going smaller in the bust would definitely make autologous more likely as it depends on where they can harvest tissue (mostly fat) from and if you're going smaller then you need less fat.

    Best of luck with your decision!! Feel free to PM or ask here if you have questions.

    -Judy

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  • chatsworthgirl
    chatsworthgirl Member Posts: 288
    edited February 2012

    Emily,

    If you have to have a mast - and I sincerely hope you don't have to do a single thing - there is an option for reconstruction that you might want to check out.  It's micro fat grafting using your own fat to create a whole breast.

    The easiest way to get to the discussion on this is to type in the search bar - Micro fat grafting Brava Doctor recommendations.

    My best wishes that you will be free of any problems.

    Kathy  I'm going to also send you a private message.

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