Why do people doubt my choice of treatment?

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June2268
June2268 Member Posts: 1,202

Why is it because a mammogram showed another spot that people are doubting me and wondering why I am choosing another lumpectomy over mastectomy.......I feel the more people are finding out that I am having a 2nd surgery as of Friday that the questions are flyin as to "why don't you just have a mastectomy and get it over with"....I find this all too frustrating and annoying that I am not able to choose and because my choice is not what most would choose please don't treat me different.....

Can anyone tell me how am I to suppose to deal with everyones reaction when it is so blatantly negative.....PLEASE HELP ME!!!!!

Comments

  • friscosmom
    friscosmom Member Posts: 146
    edited February 2010

    That's a tough one, I got a lot of "feedback" from people when I decided to just have a lumpectomy rather than mastectomy; they felt I should have had the mast (or even a double mast!). It's tough because I would find myself then starting to second guess my decision which was frustrating.

    When I made the decision I was comfortable with it (and I did consider single and double mast) and that's what matters, you have to be comfortable with your decision. I have learned I have to just ignore that feedback because it's all coming from people who have NEVER gone through this and until they face this monstor in the face they really have no idea what they are talking about. :) Even from someone who HAS been through it doesn't mean that what was right for them is right for you. Be comfortable with the fact that your decision was the right one for you. I have said that I would get a double mast if I ever had a reoccurance but honestly, that's all talk, I won't know what my decision will be until I am faced with it! When people question me now about the lumpectomy vs mast I simple tell them I felt that the lumpectomy was the right decision for me and that I'm comfortable with that decision. It sometimes leaves a little "uncomfortable silence" but I quickly change topics and move on.

  • Booblet
    Booblet Member Posts: 13
    edited February 2010

    I'm assuming these are people who care for you and love you.  I would suggest that they still only have as much influence on your decision as to the degree your decision would affect their life.  For example your husband would be greatly affected, so his opinion should be considered more than a best friend or sister.  Their intentions are likely good because they want you to survive at all cost and aren't considering necessarily how your life would be affected.  If they haven't gone through something like this they don't have the capacity to fully understand no matter how well meaning they are.  Even the wonderful doctors and nurses that are now in my life, I realize do not and cannot understand.  If advise is given with honorable intentions accept it at that, but in the end it is and should be your decision.  Ask them to respect your decision, if they love you, they will.  I read a book early on in my diagnosis and it suggested that we need to teach people how to treat us.  Seems unfair yes, but still true. 

    Best wishes and God Bless you on this crazy journey.

    Linda

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited February 2010

    It is what is comfortable for you.  I had the choice - I elected a modified mastectomy.  There is no prediction that can acurately state, without any reservation, that you will not have a recurrence just because it was all 'cut out' - lump or entire breast - you do what you feel is right for you - that is what you go with. 

    People that love and care about you are acting out of concern for you.  They want to have you around for a long time and right or wrong, their views are based on their knowledge.  They don' t think they are being negative - they truly believe that they are expressing what they think is best for you.  Perhaps a bit of educating may be in order - why did I choose a chemo that lessened the cure expectation by 5% but gave me a 30% chance I wouldn't lose all my hair?  It thinned but I didn't lose it and I was 10 years NED.  After 10 years - those statistics are no longer valid - they were based on a 5 year survival.  I rolled the dice and won.  I never questioned my decision - the fact that I now have it in my bones had nothing to do with my choices 10 years ago.

    Stick with what is right for you.  Be kind but let them know it hurts you and move on.

    Hugs

    Sharon

  • KorynH
    KorynH Member Posts: 301
    edited February 2010

    Everyone has an opinion. Believe me if I hadn't had 5 tumors in my breast I would have saved it at all costs. I miss it very much and I am very glad I kept one. If your doctor says this is the right decision for you then work with him, don't look back, and say the words to people who question you....

    "Thank you for your concern."

     That should shut them up real quick!

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited February 2010

    I think there is a fear factor that far exceeds rationality.  I would just tell them that you have spoken to your surgeon, that your odds of survival are equally good and you have chosen the less invasive route, and who wants to go through reconstruction if they don't need to.

    In the end, the danger is spreading to distant sites, not local recurrence.  I was Stage 2 and chose lumpectomy.  I certainly didn't want to lose my breast if no medical reason for it to go.

    In your situation, I would have radiation to make sure I didn't get another local recurrence.

  • RunswithScissors
    RunswithScissors Member Posts: 323
    edited February 2010

    Oh this is such a sore subject with me, too...

    In my case, I knew I couldn't live with myself for taking such a drastic step before trying other options first. 

    And since I'm the one who had to live with the decision....I learned to tune those doubters right out. 

    In my case, the chance of recurrence was nearly the same, either way. I guess most people who asked me this obnoxious question didn't understand that. They seemed to think that  mast came with some kind of  guarantee. 

    I was very fortunate because my dh supported my decision, even though the rest of family did not.  He understood completely when I said, "I don't want to  burn down the whole house because I found a rat in it."  

    If there had been problems with the margins, then I'd have revisited what to do. But as it was, I had to take the methodical approach.  

    It also did not bother me that the cosmetic result might be bad. For some reason, I thought it would be easier to adjust to an ugly "me" than a beautiful foob. Thats a very personal and individual response and nobody else can say which is better for you. 

    I understand why others would choose differently, and would never want to question their reasons.  

    I wish I could tell you that I've come up with  some  witty response to this by now -  but no luck. 

    Sending many positive, healing thoughts  your way. 

  • AnnJ
    AnnJ Member Posts: 10
    edited February 2010

    I received the same question from my family, especially my grown daughter.  I had 2 surgeries.  I do not regret this decision, even if my cancer comes back.  I think that my daughter was scared for me and thought that a mastectomy would be a "better guarantee" - and of course there are no guarantees.  I had my moments with second guessing myself, but, I feel I made the right choice for me.  Only you can make that decision.  People who love you and are scared will maybe have a difference of opinion.  Reassure them that you feel you have made the best decision for you.

  • Nipi
    Nipi Member Posts: 38
    edited February 2010

    June,

    I know EXACTLY how you feel!! I was just talking with my friend about this. I think people question your decision based on their fear. I would say before being DX " If I ever get cancer I would get rid of them with no question asked!!" Now having had this, it's a different story. You realize that you don't have to have a mastectomy just because you have cancer. Also, I don't think people realize that a mastectomy is not a cure all for Brest cancer. It's offensive for people to think that you have not researched your decision, and that is is not one made easily. You have enough stress dealing with cancer, you don't need that kind of energy..

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2010

    I can identify too!  I had a masectomy but only after getting the opinions of two surgeons and only after seeing MRI results that indictated that my breast was full of DCIS.  I would certainly have had a lumpectomy if that had been an option - even with DCIS in two areas.  Having had a mastectomy, I know that it's not the easy and simply solution that everyone seems to think it is.  Once you've had a mastectomy, you have to live without your natural breast (and natural sensation) for the rest of your life, and you may have to deal with side effects - pain, muscle tightness, phantom itching, etc. that can go on for years.  And as we all know, having a mastectomy does not eliminate all your risk.

    The people who are questioning your choice are not in your shoes, they probably don't have a good understanding of the pros and cons of both lumpectomy and mastectomy, and frankly they have no right to comment.  Rarely does that stop people from commenting, however.  You probably don't want to say this, but I think one answer is to say, "I appreciate your concern but this is my body and my decision.  I've done my homework and I am comfortable with my decision."   You could even add "If you ever need to make this choice, I will support you whatever you decide, because I realize how personal a decision this is."

    Good luck Friday!  Hoping for nice clear margins!

    Edited for typos only. 

  • dsj
    dsj Member Posts: 277
    edited February 2010

    I don't have anything to add; I just wanted to thank everyone who contributed to this post--it really helped me a lot to read it.  And good luck on Friday from me too. 

  • BFidelis
    BFidelis Member Posts: 156
    edited February 2010

    I didn't get any doubting feedback on my "choice" of treatment and that's really wierd because I had a friend who I had to "drop" because she didn't know when to keep her opinions to herself.  What ever made her think that she had any oracle-like talent to allow her to know and understand my relationship with my husband?  Not to mention the wisdom of Solomon to guide my actions.  She came thisclose to calling me an unfit mother.  (21 & 23 yo DDs are bright, beautiful young women in whom I DELIGHT.)  Oh, and did I mention she is unmarried and childless?  She is the only one who would have had the nerve (my family would tell you "insanity") to question my decisions made with my doctors.  Anyway, the point is, some people just feel they have some right to impose their "thinking" (that's not the word, but I can't find it) on very personal aspects of your life -- like your health.  Try this one:  You have a very thought-out opinion on what you would do in my position.  I hope you never have to make it your plan.

    Peace,

    Beth

  • neversurrender
    neversurrender Member Posts: 508
    edited February 2010

    I had mx and some people question..well why no rads or chemo.  If they have never had to face BC, they just don't understand.  I never understood all of the differences in types of BC and the stages and how that would effect rads, chemo, lump, mast and such prior to diagnosis. I would hear of someone with BC and she was having such and such done, but someone else with BC was having something else done.  I never understood and always questioned it in my head(fortunately I kept my mouth shut).  People just don't understand. 

  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2010

    I suspect that most people question your decision because they don't know enough. There are a lot of people who think lumpectomy is not as safe.

    So if people question - just tell them the stats for lump + rads are the same as for mast.

    I had a friend who ws very concerned about her SIL, who had chosen lump. She didn't speak to her about it because she felt it would be intrusive (SOME people have sense!) but expressed her fears to me (I had a mast). When I told her about the stats it made a big difference to her.

    Leah

  • roseg
    roseg Member Posts: 3,133
    edited February 2010

    I never had the lumpectomy choice and got questions about why I wasn't having one.

    Unsolicited opinions are one reason to not tell too many people about your bc situation, particuarly if you aren't losing your hair and don't have to change your work schedule too much.

    Other than that I think the "thanks for your concern" is about the nicest way to deal with it. You could also say "IT'S NONE OF YOUR F&ICK((( BUSINESS" but a lot of people will think you have some problem if you're that honest with them. 

    It's your choice, !

  • GryffinSong
    GryffinSong Member Posts: 439
    edited February 2010

    No matter what we choose, there will always be people who disagree and think they're helping by giving us their opinion. I've had people insist I'd be better off just praying, or just changing my diet and doing natural things, that chemo was an evil conspiracy. I've had plenty of people challenge my decision to have a bilateral mastectomy with no recon. I think they mean well, but yes, it's VERY frustrating. It's our lives, our bodies, and only we can decide what's right for us.

    Hugs, hang in there, and stick to your guns. :)

  • MaryDee
    MaryDee Member Posts: 53
    edited February 2010

    I think a lot of people say things like that with no real notion of what is involved.

    A lot of people have been exposed to tv documentaries where women opt to have preventative Bmx with immediate recon and they wake up with 'normal' looking breasts and they think that's what a BC mx and recon is like...and it's NOT.  They also usually don't understand the loss of sensation that is involved not to mention the legacy of pain and lymphedema that many women face. 

    I haven't had any insensitive comments, but if i could've had a 2nd lumpectomy after the first I absolutley would have. If anyone had questioned me about it, I would've said, quite bluntly, "Once they chop your breast off it's gone.  You can't change your mind."  Putting it like that should give them pause for thought.

    ((hugs))

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