To Support or Not to Support...I need to vent!

babycakes82

 I was diagnosed with LCIS in March after a breast reduction.  After much prayer, research and investigation, I have decided that PBM is the right way for me to go.  Now on to finding the best place for NSM, SSM in the South.  What is the deal with family?? They tell you all the doom and gloom of surgery and recovery! They wouldn't do the surgery, it is too big a risk!  What about my risk of BC??? What about how hard it would be for my auto-immune disease to fight it off and go through chemo or radiation, or drugs...I can't even talk with my brother any more because he keeps bringing it up and trying to talk me out of the surgery. I tried to talk with my mom about it today and she went on to another subject!!  I could tell I had been the topic of discussion at a birthday dinner over the weekend.  (I live out of state) Clearly she did not want to discuss it!  What about all the women who have PBM and how their path reports show something that did not show up on MRI and mammo?  How do they know what is best for me and my body? Don't they know how alone I feel,how hard this decision is, being out of state? My parents and 3 siblings all live in the same town with all their kids.  I am the only one that has moved away. 

 I feel like I have been blessed to have a chance to do something proactive and all because I had breast reduction.  What a blessing!  Not only that, my 15 year old son came to me yesterday and said "mama you should do the surgery'!  We spent time discussing it;  all the pros and cons.  After he saw his papaw fight cancer and pass away, he says he doesn't want that to happen to me.  That is what he remembers.  That made my heart melt!  My 2 daughters are wonderful support,(they don't live near me).  Both have said they will help in any way. I am blessed by the best kids in the world.  I am going to be a first time grandma in December and I choose to be here for years to come!It is my choice!!

Sorry for all the venting, but some times a girl has got to do, what a girl has got to do!

If anyone has any ideas on a surgeon in the south for NSM, SSM.  I have seen a surgeon at UAB who is top there.  I also have a PS consult in a few weeks there as well.  I live in North Alabama and don't mind traveling to get the best.  Thank you all for listening! 

Anonymous

Unfortunately, you will get all kinds of opinions from friends and family. Once you've made a decision, you just have to stand your ground. (I may be facing this same scenario some day-----I was diagnosed with LCIS almost 8 years ago; I do high risk surveillance and preventative meds; but I have not gotten any flack for this decision). I'm glad you have the support of your son and daughters; don't worry about the others, you have to do what is right for you. 

Anne 

JanetM

I believe that this is a decision that is very personal and that only those of us in this situation can make.  Our families and friends can choose to be supportive or not but we are the ones that need to feel comfortable with our decision.  I am just starting on this journey and I know that at some point I will need to make a choice and while I know that their are family and friends that will support me no matter what I do there will be others who think they know better.  Do what is right for you!!!

 Janet

covertanjou

This is a very personal decision.  I had a partial mastectomy, but I have decided that if I need another excisional biopsy, I will have the PBM.  What your family may not understand is the stress involved in the "watchful waiting".  It has been two years since my dx, and everytime I need to go for a mammo, my stress level rises.  You need to do what is good for you.

Good luck. 

KellyMaryland

When I first joined this site there was a thread called something like 'A place for those with LCIS choosing a PBM'.  Even on that thread there were women with and without BC chiming in that PBM was too drastic, was 'unneccessary amputation', etc.  All necessary for good debate, but also only the opinion of that individual.  Within the same month of my PLCIS diagnosis, my younger sister in law (who was in her late 20s) was diagnosed with IDC.  She chose a single mastectomy, along with chemo and rads, for her own reasons (she was hoping to have more children and had hoped to nurse again) while I ended up choosing a PBM for my own reasons (was in my early 40s with four young kids to tend to and couldn't handle the stress of monitoring).  Both choices were right.  Or both choices were wrong.  We can debate ad nauseum and still it only comes down to one individual's decision about her own body. 

I'm thinking of you and backing you on whatever you choose as the right course of action.

Kelly

babycakes82

Kelly, Mary, Janet and Ann,

Thanks so much for listening and letting me vent! I think as each of us has to decide what is right for us, we have our good moments and bad moments.  I definatley will do what is right for me!  I just love all the support, hugs and tears we all share.  I am so glad I don't "need their permission" to do this!  I have more important things to worry about and I certainly don't need to let this take up a big part of my time.  Thank you ladies from the bottom of my heart!

leaf

When I was first diagnosed with LCIS, I told my cousin.  She said she knew a friend who had PBMs and regretted it, so she admonished me not to do it.

I found her approach presumptuous.   Also, the night before my excision,in the middle of work, I had, essentially a male stranger, via another person, tell me that he knew another woman with LCIS and she had PBMs, so he advised that I have PBMs too. (I work in a hospital; it was a breach of confidentiality.)  I found it highly offensive that a male stranger, who was NOT my doctor, and was not a doctor at all, tell me what treatment decisions I should make, particularly what I should do with my private parts.

 I would have liked to come to a decision about PBMs ***on my own***.  I sort of feel 'robbed' of the independence of choice.  I have a lot of other emotional issues.  (Probably everyone's issues are as complicated as mine, and I'm just being very self-centered here.)

You sure don't need ANYONE's permission to do this, but your own.

kimber1

Leaf...I was diagnosed with LCIS in June...saw oncologist last week and was SHOCKED. I guess I had 'googled' too much and thought I knew what I was walking into...figured they would put me on Tamoxifen or something like it and tell me they would watch me closely.....there was A LOT more to it than that! I won't go into all the details, but preventative mastectomies are sounding more and more appealing to me than the alternatives...and all the worry. (he DID say that this was a possible option that we could discuss)

I am with you. I feel very alone in this. I have very supportive friends and family, but no one can grasp all of this or how I feel. Ultimately it is a very independent, personal, humongous decision that we have to feel comfortable with ourselves. My mind is spinning all the time with these decisions.

Considering getting a second opinion (which I know is a good idea anyway)...but expect it will be less aggressive.....and is THAT okay with me???? i don't know. 

LCIS is so unbelievably frustrating for me. I beat myself up for feeling bad about it since it could be soooo much worse, but on the other hand....it is so controversial and it is still not known WHO will become invasive and who won't.  I can't even bring myself to wear a pink breast cancer support bracelet.....so weird since i've worn them in the past in support of friends, but feel like so many don't consider LCIS 'true cancer' that I can't wear it for my SELF!!!!  (note: my oncologist still considers it breast cancer stage 0 )  

anyway...I say do what feels right to you. I have a distant cousin that has fought breast cancer and she keeps saying...'listen to your gut'.  

Good luck regardless what you choose!  

babycakes82

Leaf-That seems so strange someone would give advice and not really understand. My son-in-law is a doctor and he has been supportive, not telling me what to do and forgot I am thankful!

 Kimber, I totally agree with you about LCIS.  I had never even heard of it until my pathology report came back.  I feel like my mind has been whirling with decisions. The decision is made to do PBM. I need  to make the decisions one step at a time; but I am a get it done kind of girl, like all my ducks in a row and want everything in order. My intuition is telling me what to do. There is so much time we spend with research. And how do we fit in; it is not really BC.  I feel guilty about whining and complaining when my diagnosis is not what they are facing.  Like you, what do we say to people.  So I do get how you feel. It can make a girl feel crazy. I am already a crazy girl, so I didn't need any help with that! LOL. I am so proud of all my sisters her on this site.  I wish I could give all of you a great big hug!  The support here is overwhelming!

kimber1

I second that on the hug thing! It's hard to find support like this! Thanks to everyone!

ScaredInSnoqualmie

I am in the same situation here.  Was diagnosed with LCIS right BEFORE my breast reduction surgery.  MRI is clear.  Waiting on my exhisional biopsy results.  If I have cancer now, will most likely go for a prohipactic.  If I don't, I am thinking about having my breast reduction this year, and then in about a year, go for my nipple sparing skin sparing mastectomy - as I see it, this is the only way to have a mastectomy on my own terms, as they can't move the nipple during the procedure and if they don't I will have  very strange-looking 36C boobs:)  (my current size is 36DDD, so those nipples will be far South:)  Yes, same family and friends reactions.  Getting really tired having to defend my decision... Just remember, you are strong.  VERY strong.  And very capable of deciding what is right for you.  It is not them who is going to agonize after every mammo and still end up with a mastectomy and who knows what else...

The best of luck to you on your journey.  I will post after my result are in as well:)

Tatiana

tigerw0man

Baby cakes, I realize that it has been a few weeks since your post, but I wanted to tell you that I was diagnosed with LCIS after an excisional biopsy in May. I since found out that I have a strong family history of breast cancer on my dad's side, though my BRCAnalysis came back normal. The oncologist really only focused on the option of taking Tamoxifen and having surveillance every 6 months. When I told her that I was considering PBM, she seemed shocked. She didn't try to talk me out of it but said that it is important that u are prepared psychologically for the change. With some women this can take years, but I think because I had talked to two of my cousins who had bilateral mastectomies and the both said that they did not regret it and are both happy h they have peace of mind, this really helped me to prepare myself. It is a very personal decision, and once I made my mind up, nobody was going to change it. I don't know of doctors in your area, but I interviewed several surgeons in my area before selecting them. I spoke with the oncologistst's nurse to ask her who she knew was good, and I spoke to friends who had friends thT had been through this to get their opinions on surgeons. I had bilateral nipple sparing mastectomies a week and a half ago, and I am very pleased with the results so far. I am still very happy with my decision.

babycakes82

Tigerwoman:  I am totally at peace with my decision to do PBM.  Although others may think they know what is best, I know my body better than anyone. (after all I have been living in it for over 49 years) LOL.  I am scheduled to have sugery September 7th!  Starting to get nervous.  I am usually not too nervous befoe a surgery, but this time I am.  I am hoping they can do NSM, but because I was cut on in March for the breast reduction, they are not sure if I would have a good outcome.  So I won't know til I wake up.  I am hopeful I won't need to drains too long and I can get back into a routine quickly. Thank you for sharing your story.  It really helps those of us who go through the same thing!

KellyMaryland

thinking of you babycakes. best of luck tomorrow.

 Kelly

Denise2730

Babycakes - will be thinking of you tomorrow.

I was diagnosed with LCIS in April in my left breast in 2 places and the ultrasound showed there was a possibility of something suspicious on my right breast also. I was scheduled for another biopsy of that breast.  I decided to have them both removed because I don't want to have the constant worry and monitoring of the remaining breast.

As it turned out the right breast had no cancer but I have no regrets to having the DMX. I had TE's put in and although I went from a D cup to a small B, large A (so far). Since I am 5'1", I actually look thinner and better with the smaller faux breasts.

I am having an Oncotype DX test performed to determine my rate of cancer recurrence. I am doing this to help me make my decision on whether to have chemo or not. I only had 1 positive node but my oncologist naturally wants to do chemo. I'm not comfortable with that. I don't want to be treated like a "one size fits all" patient treatment plan.

Oh well, now I'm venting. Educating myself on here and through the internet has been very beneficial to me (I'm sure our doctors aren't too thrilled with us arming ourselves with knowledge however!).