Do you feel you have to justify having a mastectomy?

Options
Marie711
Marie711 Member Posts: 87
edited January 2016 in Living Without Reconstruction After a Mastectomy

Fellow Flat sisters, do you ever feel like to need to justify your decision? My sister in law had the same type of cancer I had and her surgeon told her that having a mastectomy would be like cutting off your hand when you hurt a finger!! I weighed my options and my gut told me this was the route I had to take. I didn't want to lose my breasts! I didn't want radiation or implants or extensive surgery to form breasts out of other body parts.

Being flat has not been bad. I was a uni until the second cancer and I feel more balanced being totally flat. Why do I feel like some people think I did more surgery than nessasary?

· Share on FacebookShare on Twitter

Comments

  • hsant
    hsant Member Posts: 790
    edited January 2016

    I was initially diagnosed with DCIS, with a possible borderline micro invasion. A 1.5 cm invasive tumor was found in pathology, which may have gone undetected had I opted for a lumpectomy. So yea, I'm happy with my choice.

    My surgeon was supportive of my decision to have a BMX, because of my family history. However, he encouraged me to meet with a PS before making a definitive decision about opting out of recon. I choose to forgo that meeting. I knew I didn't want to go thru the possible complications that can occur with reconstruction.

    Anyway, I don't feel that I have to justify my decision for a BMX, but I do feel like I have to explain why I choose to go flat, especially to people I know who choose to have recon.

    · Share on FacebookShare on Twitter
  • cp418
    cp418 Member Posts: 7,079
    edited January 2016

    I don't feel anyone should have to explain or justify their PERSONAL reasons for their choices. period. Hugs to you ladies and sorry you have to deal with these comments.

    · Share on FacebookShare on Twitter
  • Golden01
    Golden01 Member Posts: 916
    edited January 2016

    I was diagnosed in 2011 and first had a lumpectomy but had bad margins so opted for a BMX. The BS was supportive but indicated there was no medical indication for a BMX but the decision was a personal one. Later, when they found "flat atypia" in the other breast, both the MO and the BS indicated I'd "made a good decision" as it was likely I would have developed cancer in that breast in the next 10 years. I rarely use bad language, even in my head, but remember when each said that, thinking to myself, "WTF, I already knew I'd made a good decision". I think the decisions and probably questions from medical providers are harder today than when I was diagnosed as there has been a lot of concern about overtreatment, particularly for DCIS and Stage I cancers. What I know is that when faced with those bad margins, the decisions about surgery were among the most difficult ones for me to make about treatment.

    · Share on FacebookShare on Twitter
  • jenjenl
    jenjenl Member Posts: 948
    edited January 2016

    Screw them, as long as you sleep good at night that's all that matters. I was uni and then removed the other one months later - i was scared and regretted not doing dmx and i didn't like being uni, the prosthetic was heavy on my radiation scar tissue. I was flat for a while but did reconstruction later. Everyone thought i was nutzo being flat but i didn't care I always told them - i sleep better at night and if i don't care you shouldn't. Shut down :)

    · Share on FacebookShare on Twitter
  • Mominator
    Mominator Member Posts: 1,575
    edited January 2016

    Marie, I don't think any of us should have to justify our decisions. If someone questions our decisions then that person needs to be educated. I would tell your sister in law's surgeon that his analogy is totally off-base. Your sister didn't "hurt a finger" rather she has BREAST CANCER, and there are no guarantees in breast cancer. Hsant, your case is scary enough: diagnosed with DCIS but actually 1.5 cm invasive tumor hiding in the breast.

    I applaud both of you for choosing the mastectomy. You chose to save your lives over your breasts. I also applaud you for going flat. My women do go flat, and enjoy it. Have you seen this website: http://breastfree.org/ ?

    I am BRCA2 positive, and my mom is fighting her second round of BC (two breasts, two different cancers). My BMx was prophylactic, and many people questioned removing healthy breasts when I don't have cancer. My cancer risk is 60 to 87%. Although all the tissue was benign, there were many areas of hyperplasia, which is another risk factor for cancer.

    I did consider the possibility of going flat. I did not want to make breasts out of other body parts. I did not want more scars and more surgery. I decided for recon with implants.

    Marie you've had cancer in both breasts and Hsant has a family history of cancer. Has any one mentioned the possibility of genetic counseling and genetic testing? I realize that you've had both Mxs now. However, some genetic breast cancer genes can also cause other cancers (ovarian, colon, pancreatic), and you might need to watch out for those cancers.

    Good luck to you both.

    · Share on FacebookShare on Twitter
  • Marie711
    Marie711 Member Posts: 87
    edited January 2016

    Mominator: I have had the genetic testing and it was negative. I was also the only person in my family to have breast cancer. And I have a huge family. I'm hoping it was just a rare coincidence and I'm not going to have the cancer show up somewhere else.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    All of the doctors I saw tried pushing lumpectomy because they figured the mass was small (1cm on ultrasound) and there was no reason to remove the whole breast. But the consult with the RO honestly scared me away from radiation. So that's why I chose mastectomy. It turned out that the mass was actually 3cm and there was adjacent DCIS. I still think about what could happen to the other breast but I will take that one step at a time. After my surgery, my genetic counselor called to say I had a 'variance of unknown significance' (BARD1). So all in all most doctors now agree with my decision. But I get questions from my relatives about why I didn't do reconstruction. I just wanted my body to heal before I focused on the appearance. It's not easy to deal with but I'm managing.

    Best wishes to all!

    · Share on FacebookShare on Twitter
  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited January 2016

    When I was DX and told my parents that I was opting for a BMX they both told me that it was mutilation. I looked at them and told them I loved them, it was my body and I needed their support. If they couldn't support me it would hurt me, but I was moving forward. It was my life. After a few seconds of silence they both said they would do whatever was needed to help me through it. They did and have never said anything negative again about my choice.

    Others made comments, and I basically said why would removing my breasts bother them. They don't touch or play with them. That is reserved for my sexy husband who fully supported my decision.

    Struggled with the idea of reconstruction, did it, downsized. Now I think I might deconstruct when the time comes to replace the saline implants just so I can sleep on my stomach again through the night and just have overall comfort and not deal with the way certain clothing looks since I don't wear a bra, no need for it.

    What matters is that each of us are healthy and happy. Not what others think of our choices to achieve that goal when our choices have no impact on them in any way.


    · Share on FacebookShare on Twitter
  • Mominator
    Mominator Member Posts: 1,575
    edited January 2016

    Marie711 and LovingisLiving: I just realized that I first met you both over at the November 2015 surgeries thread. It's good to see you again.

    ProudMom_Wife: I'm sorry about your parents' initial response, but glad that they are now supportive.

    · Share on FacebookShare on Twitter
  • hsant
    hsant Member Posts: 790
    edited January 2016

    I was tested before my diagnosis, and tested negative. If I would've tested positive, I would've had a prophylactic BMX.

    Whether someone chooses lumpectomy, mastectomy, recon or no recon is sooo personal. There is no right or wrong.

    Mominator, I'm so sorry about your mom. I know how difficult it is to watch someone you love go thru this

    · Share on FacebookShare on Twitter
  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2016

    Everyone has to make the decision that allows them to sleep at night. For me, having Paget's, a "lumpectomy" meant cutting off my nipple and a surround area for a clean margin,, well,,, what's left then? A weird flat shape,, I just couldn't picture, but I would have had to had rads,, and I thought I may as well have a MX cuz no rads, and most of my breast is going anyway. Turned out to have DCIS that no one saw on imaging, so I am more than happy with my decision. It is a pain being a uni,, especially with truncal LE,,, but I never thought of removing the other at the time of my DX. (I had not found this board then) I wouldn't hesitate to do another MX if it were needed,, and definitely NO recon. The surgeons thought I was nuts, but I don't want to move body parts around, or have implants ( I can barely stand my implanted tooth) and did not want to deal with all the possible risks of more surgery.

    Again,, my decision,, really no one else's business. If they ask, I'll tell them. Otherwise, they can just shut up.

    · Share on FacebookShare on Twitter
  • ksusan
    ksusan Member Posts: 4,505
    edited January 2016

    Although I really had no choice about BMX given my circumstances, I still got questioning/indignation expressed on my behalf by a couple of acquaintances. Most of this was about "You don't need a mastectomy for DCIS" by people who knew a little something in general but not about my specifics. Saying, "Even if it could be done, I'd look like Mt Saint Helen" took care of any protests.

    · Share on FacebookShare on Twitter
  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2016

    ksusan,, what an apt description,, looking like Mt St Helens.. That's exactly how I would have looked with a LX. I must remember that,, Thank you!

    · Share on FacebookShare on Twitter
  • ksusan
    ksusan Member Posts: 4,505
    edited January 2016

    Always happy to help with vivid imagery!

    · Share on FacebookShare on Twitter
  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2016

    I justify nothing - my body, my decision

    Nel

    · Share on FacebookShare on Twitter
  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited January 2016

    Yep (Nel). The only person you need to have a justification for is yourself...and you only need it for yourself before surgery!

    I haven't had a mastectomy (lumpectomy here!), but I did have a medical condition that had me in a very visible back brace (that ran from just below my chin to the bottom of my pelvis) for four-and-a-half years. Both my sister and I wore them, and we got lots and lots of comments. They tended to come from three different groups of people. Family/close friends, casual acquaintances and absolute strangers. I (we) reacted very differently to the various groups, depending on the context.

    Absolute strangers who tended to say things like "what's wrong with you?" "What happened to you?" If we were together, my sister didn't hesitate to say things like "we were Siamese Twins joined at the spine" or "born without a spine and they had to install one" figuring they deserved whatever they got for being rude enough to approach a stranger and ask such a question.

    I had a high school teacher who wanted me to sit in the back of the room so he wouldn't have to look at me in my brace. So I spent time talking with him because I needed him to respond to me (intellectually) as a person...instead of as a hard-to-look at person.

    Small children got kind responses, appropriate to their age, intended to distract them and/or not worry about it.

    For the vast majority who should know better, a double-take (of astonishment) combined with something like "I can't believe you would offer an unsolicited opinion on a personal medical matter." Then just look at them without saying a thing. Most people will appologize. If they try to justifying themselves, either repeat yourself, or vary it slightly. Something like "I can't believe you're still talking about that." Then either walk away or ask them a question about something completely unrelated.

    Just some ideas...

    LisaAlissa

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited January 2016

    I do not have to "justify" to anyone -especially my medical decisions - it is MY life - MY DECISIONS! That is not to say that I didn't talk/discuss with Hubby and adult Son, but I will not " justify" to anyone else as anyone else is just a 'peeble in a stream' so of no consequence.

    Children are great and honestly seeking information. I have sat down in an aisle in WalMart/etc. and talked with children (with the parent's approval) when I was 'sans hair' and now with sleeve/glove when I hear them comment and they are told "Be quiet" by 'embarrassed' parent I ask if I can talk to them to explain (age appropriate). Usually wind up with a lot of adults 'gathering around'. HEY - education is always good.

    LiasAllisa - it is always amazing how totally ignorant and intolerant some are! My brother is deaf (not 'hard of hearing' - has never hear a sound). When out with him and his friends, I always interpret and chat with them in ASL. It is amazing how many totally stupid things are said by those who do not understand I'm not deaf.

    · Share on FacebookShare on Twitter

Categories