2012 sisters

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  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    Tazzy-2FriedEggs is right! I did had the NSBMX with 1-step to implants and I'm really glad I made that decision. I made my decision based on my research and what I was comfortable with. The following was considered:

    1-I'm 115lb and was barely a 34B cup, I was not good candidate for things like tram flap and all the others using fat, and I'm very active and young (34) so didn't want to use my muscles and the doctor agree with me on that. 

    2-My diagnosis of IDC 15mm and stage 1 and was at 10 o'clock at my right breast which was also far from the nipples

    3-I also wanted to stay around the same size after the implants (ended up with a 34C)

    4-No need for radiation

    5-Wanted the least amount of surgeries thus less recovery time needed (Didn't go with TEs for that reason and also I wanted to stayed the same size) 

    6-Had another non cancerous lump on the left side that is the same size as the IDC on the right side and my doctor recommended that lump to be removed at the same time

    Thus I was a very good candidate for the NSBMX with 1-step to implants, I also had the option of lumpectomies on both sides or mastectomy on cancer side and lumpectomy on non cancerous side as well. I chose the BMX because I didn't want to deal with all the MRIs and CT Scans every few months for the rest of my life. Now I have 1-2% chance of it coming back and that's the best thing ever. I know that the doctors tell you that the survival rate for both lumpectomy and mastectomy is the same but the reocurrance rate is 6-7% vs 1-2%. Which made a HUGE difference for me, you alone could make this decision, I made mine to improve my quality of life, I was never hung up on things like " Oh, I can't cut out my perfectly good breast" and stuff like that. As a matter of fact, my right breast tried to kill me for god sake and how would I know if the left one won't try to do the same in the future? 

    I really am very happy with my decision, if you are a good candidate for this and that's what you want to do, I say go for it! I never look back and its my Birthday today and I went out with all my friends last night to dinner and drinks and all of them are shock to see that I'm back to myself again. Actually when I got diagonsed on April 13th, I started planning my surgery and booked it for May 7th so I would be back to my life for my birthday. That's exactly what happened!!!!!!!! I had a fantastic time last night and at 5 weeks post op, I think I've just made a turning point where I'm back to normal again. 

    I'm also cleared for the gym, so I'm going to the gym for my birthday!!!!! You have to understand that I'm weight train and do crossfit as well. So gym and fitness is very important to me.

    Hope this helps and may you make the best decision for your life!!!!! Laughing 

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Thanks soyaandpepper.  Decisions, decisions.. arh!   I guess until I meet with the surgeon and am given different options for surgery its had to know what is best for me.   I did ask about why they hadn't suggested a BMX for me and their words.... "it will not make your chance of survival any greater" geesh! thanks.  When I aksed what they meant its just that with my cancer if recurrance happens...  it will happen anywhere on my body.  I will need radition also.   So for me surgery and radiation is going to happen.

    Oh and still trying to learn all the lingo... what does the NS stand for in NSBMX?  

    Happy to hear you are pleased with your decision.  

    Thanks so much - its such a help to hear others and how they made their decisions.

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    Tazzy-NS in NSBMX means Nipple Sparing, so I had Nipple Sparing(meaning also skin sparing) Bilateral Mastectomy.

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Thanks S&P.   Wish there was a cheat sheet for all the lingo Laughing

    Again, I appreciate you sharing with me how you came to your decision.   Am sure as soonas I have more questions I'll be on here again looking for answers.

  • sammistar509
    sammistar509 Member Posts: 23
    edited June 2012

    My story is a little bit similar.  I was diagnosed January 24th, I had a lumpectomy in March and they found a fourth tumor that hadn't shown up on any imaging they had done.  Because the four tumors were isolated there was no focal area so radiation wasn't a good choice for me.  My lympnodes (4) and margins were clean and I tested negative for BRCA gene.  I had a unilateral mastecomy, DIEP flap reconstruction and lift on the good side.  I thought I was almost done but I am now waiting on the oncotype DX test to determine if I need chemo.  If I don't need chemo there is a good chance I'll need my overies out, seems like a lose-lose situation but if it means the risk of recurrence goes down, I'm ok with either-

    I have been lucky that my surgery recovery has been pretty stress free so far, my drain came out on its own but the doctor says I don't need to go see him until Friday, that's a good sign I think :)

    Best of lucky to everyone!!!

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    sammistar50-Sorry to meet like this, and was just reading about your experience, and I had a question. Why do you need to remove your overies? I thought you stated that you're BRCA negative. Hope your oncotype test came back that you don;t need chemo.

  • 2FriedEggs
    2FriedEggs Member Posts: 640
    edited June 2012
    Soyaandpepper HAPPY BIRTHDAY and best wishes for many, many more!!!!!   Isn't it nice to have all the surgery behind you. I think I may actually get my 2nd fill tomorrow so these 2 fried eggs will be more like 2 poached eggs. lol
  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    happy birthday S&P.  And yes here's to many many more - cheers !!  Didn't mean to miss that out of my first reply....blaming chemo brain.

    Good luck 2FriedEggs with the 2nd fill... guess you will need to change your screen name now Laughing

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    Thank you 2FriedEggs and Tazzy for the birthday wishes! 

    2FriedEggs-I'm really glad that all the surgery is behind me now and good luck for your 2nd fill. That's so funny "2 poached eggs". Let us know how it goes!

    Tazzy-I noticed that you're triple negative, I have a friend whose triple negative too and was stage 3, she did the BMX and immediate reconstruction with TEs. She also had chemo first and then surgery and radiation, please do your research before you make this decision. 

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Thanks soyaandpepper.... I will definitely do my research, once I have some options too.   Thanks again.  I know each decision is very very personal - how is your friend doing.?

  • angiephnx
    angiephnx Member Posts: 36
    edited June 2012

    I decided I'm going to start posting instead of lurking and reading everyone else's stories (although they have been very informative!). I was diagnosed on Feb 29th of this year with IDC, stage 2a, grade 2, ER/PR+, HER-. Tomorrow is my 4th chemo treatment and I am dreading it already. I try not to think too much about it as nausea starts kicking in!

    I do have a question though...I had an ultrasound last week to see how the tumor is responding to the chemo and the radiologist said it has shrunk down to 1/3 of its original size... Has anyone had this happen and then the MO decided to go on to surgery instead of finishing the remaining chemo treatments? I'll see my doc tomorrow but I've been thinking about this the last couple of days (hoping I wouldn't have to finish my remaining chemo treatments).

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    Tazzy-She's great, she's been cancer free for 4 years now and still monitoring herself closely of course since Triple Negative is a very aggressive type of cancer.

  • 2FriedEggs
    2FriedEggs Member Posts: 640
    edited June 2012

    Thanks Tazzy and Soyaandpepper. I don't think I'll change my name because I have too many stages to go through yet- 2fried eggs to 2poached eggs, to 2 hardboiled eggs, etc etc. I think I'll just wait until I get to 2melons or something like that. LOL 

    Tazzy there is kind of a cheat sheet with the lingo under the new to the forum section that has tons of abbreviations. Good luck on your decision. I know I changed my mind several times before making my final decision. I just went to every one of the different doctors and got their takes on everything before making it. I had the same options as Soyaandpepper (except I couldn't go with the direct to implant and had to do the TE's) and made the same choice as her. Unlike her, I have a gym membership but I don't use it. lol

  • bevg49
    bevg49 Member Posts: 739
    edited June 2012

    Hi there ladies, I am so sorry that I'm still so exhausted and can't individualize my response except to say happy birtday to soy!!!!! I want to say one thing again to the many who have yet to have surgery and are anxiety ridden. I was as bad as they get. I'm a pessimist by nature, all gloom and doom and always expecting the worst. I was scared shxxxess...(that can mean shitless, shoeless, whatever you choose lolol).... Anyway, I won't say it was a day at the beach but from the beginning it was easier than you will believe. Take the pain meds they offer - VERY IMPORTANT... The drains are a major pain in the butt and one of mine is filling like crazy so won't be leaving me too soon (your output has to be under 30 cc per 24 hours... One of mine is around 30 cc, the other is around 200!!!!) That one is the lymph node which seems to output a lot more. Oh, by the way. the surgeon only had to remove ONE sentinel node and preliminary report says CLEAN YAYAYAY.

    For you girls going, do your reseach, decide what you wanna do (BC is one decision after another).... then try to rest easy. It's not too bad... For those who are recovering, I am sending healing vibes and wishes for a quick and easy recovery.... 

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Welcome angiephnx - I also lurked before posting - think most of us do.  Sorry you are part of this club, but happy you found us.  Great bunch of women with all different experiences and all willing to share.  
    First of all that is great news that the chemo is shrinking the tumour.   means its doing its job, regardless of how crap it does make us feel in the process.   I do not know the answer to your question.... for me I have to finish all my treatments first.    If there is someone out there who knows, they'll be on soon to share. 

    S&P - that's the kind of story I like to hear... great news about your friend.  I am part of the clinical trial for D-care so because of that will monitored every six months with a mammo and yearly for a bone/ct scan and mri.  The more monitoring the better I say.

    2Fried... thanks for directing me to the cheat sheet - sure would've saved a lot of head scratching wondering... Smile  I suspended my gym membership too.

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    bevg49-So glad to hear from you and hope you have a speedy recovery and thanks for the birthday wish! I also got cleared from by SNB as well! Yayyyyyyyy!!!!!!!! Sending healing vibes to you!!!!!

  • angiephnx
    angiephnx Member Posts: 36
    edited June 2012

    Thank you Tazzy for the warm welcome!

  • Belinda977
    Belinda977 Member Posts: 381
    edited June 2012

    jpmomof3, I get my Oncotype (sp) results tomorrow.  Defnintely radiation and tamoxifen of course  Treatment is somewhat on hold.  I had a hematoma complication and I am back to square one with my incision being open.  I am being positive and will get to where I need to be soon enough.  Probably reading too much on the internet!

  • vickilind61
    vickilind61 Member Posts: 338
    edited June 2012

    Welcome angiephnx.  Unfortunately I cannot answer your query since I had surgery first and will be starting my chemo tx on Friday.  Keep posting and someone will answer.  You might another thread or two also. 

    Soya, HAPPY BIRTHDAY!!!

    Tazzy, love your profile pic BTW.

    Bev, congrats on the clean nodes.  Sealed

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Thanks Vicki - that photo was taken when I had gone to visit my work mates.  If I can get to download/upload a picture from photobucket I will tell you a funny story that goes with it... but need the picture and for some reason it wont transfer over.  I'll keep trying!?

     Good luck for Friday.  Everytime I felt crap with chemo I remember what my navigation nurse said to me... "Remember we are doing this FOR you, not to you".   Those words really helped me.  

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    vickilind61-Thanks for the birthday wish! 

  • lostinmo
    lostinmo Member Posts: 922
    edited June 2012

    angie- welcome and congtrats on the shrinking! Mine shrunk from 6x7 to 4x5 after the first tx but still doing the whole 8 tx's. Hoping to shrink it gone, but we will see. Can't answer on if your MO will let you stop though.

    soyandpepper- HAPPY BIRTHDAY!

    bevg- glad things are going good for you!  Someday I will have someone explain the drains to me, I'm clueless when it comes to the surgery part of things.

    To any I've missed I'm sorry my chemo brain is in full control at the moment. Or it could be the pain meds.. 

  • sammistar509
    sammistar509 Member Posts: 23
    edited June 2012

    I am not really sure why my ovaries would need to come out, maybe because of the tumors being er+ I guess- have a lot of questions for my next visit!!!!!

  • lostinmo
    lostinmo Member Posts: 922
    edited June 2012

    sammistar- my tumors are er+ also and when I asked about having my ovaries removed my MO said that they do other things that do benefit us and that even if I removed them I would still have to take meds for the next 5 years because estrogen can come from other places to. Don't know if this helps any, but thought I'd share.

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    lostinmo-Thanks for the birthday wish!

  • VickieDallas
    VickieDallas Member Posts: 6
    edited June 2012
    I am 38 years old. I found my lump completely by chance while working at my desk, with my puppy on my lap. Felt the urge to touch and there it was. I had my biopsy done on May 29 and got a positive result on June 4th; met with the breast surgeon on the 7th and had an MRI, CT, and Bone Scan on the 8th, all came back negative. :) I have IDC, 1.9, ER+, still not sure about the Her2 status. It has a high replication rate - hi KI67. Today I had the genetic test done. Therefore I have a little over two weeks to research and consider treatment options. If the gene comes back positive I will have the bilateral mastectomy, no questions asked. But I am still considering it as a possibility even if it comes back negative. Next, I will meet with the plastic surgeon to discuss reconstruction options, and after that the oncologist and follow up with surgeon. I was told today that because of the aggressiveness of the tumor I will probably need chemo regardless of the type of surgery I get. I do feel comfortable with my doctors. And I am confident that I will make a well informed decision.

    Fortunate that I am being trated at the Margot Perot Center for Women in Dallas.

    The hardest part has been telling my loved ones, but I am extremely blessed to have a lot of support - even at a distance, no family or good friends close by - so important!

    Good luck everyone!!! :)

  • Soyaandpepper
    Soyaandpepper Member Posts: 368
    edited June 2012

    VickieDalla-Sorry to have to meet like this but you came to the right place for support! Just do your research and do what you feel like in your gut! Great news on your negative on MRI and CT Scans. Its good that you have support even at a distance as you pointed out and we ladies will help you along as much as possible. For me its really good to have the family and friends' support but still they still don't know what I'm really going through cause they're not in my shoes. 

    The ladies in BCO are a great supoort since we're all going through the same time at different stages, we get ot share our experiences and compare notes!

  • VickieDallas
    VickieDallas Member Posts: 6
    edited June 2012
    Thanks, Soyaandpepper!!! Smile
  • Belinda977
    Belinda977 Member Posts: 381
    edited June 2012

    VickiDallas, hang in there!  The first month is a rollercoaster.  I felt better after surgery when I hade the pathology because I had a better idea of what I was dealing with.  I asked my surgeon if I was her sister would she be comfortable with my surgical choice.  However, if there is any recurrence I will be having a BMX. 

  • lostinmo
    lostinmo Member Posts: 922
    edited June 2012

    VickiDallas- I'm glad that we are able to be here for you. Not that any of us want you or us to be here. But you know what I mean. I would be crazy if I didn't have all these great ladies to talk to about this. Ask anything you need to, someome will come along with an answer or know how to find one.

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