Recuperation after Bilateral Mastectomy

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Pattszy
Pattszy Member Posts: 11
edited June 2014 in High Risk for Breast Cancer

Hi I just underwent bilateral mastectomy last Jan 14,2013 I'm just 28 years old with one kid. Would like to ask anyone here what are the challenges that you have experienced after surgery? I'm a week of finishing my 2nd trimester for my MBA program. As of now I'm currently at home and still can't go to school, and office. My surgeon is offerring me breast pads because i do not want to do a tram flap and reconstruction. My supportive husband told me not to be conscious without having breasts because its not obvious. I'm worried to how can i cope and bring back my normal life after surgery. I read forums regarding breast cancer and my mom just died because of leukemia but not breast cancer, after she fought breast ca after 25 years she was diagnosed with mds and later on progressed to aml. im so scared on the future on what hold for me. any encouraging message?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Pattzsy---I'm sorry you have had to go thru so much at such a young age.  I haven't had mastectomies, so I can't comment on that, but I did want to say I'm so sorry to hear about your mom. (did she have radiation or chemo for her bc?)  My mother-in-law had MDS which also progressed to AML and we lost her in 5 months from diagnosis. It was so very difficult to watch.  Now my father-in-law also has MDS; fortunately he is stable for now, but the fear is still there. Have you been following Robin Roberts story (on TV)? Her MDS is now in remission--her bone marrow transplant (from her sister) was successful. They think hers may have come from her chemo, but with most MDS they don't really know the source. My mil never had rads or chemo.

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited January 2013

    Pattszy,

    you are a couple of weeks out from major surgery and its very difficult. However, you are 28 with a child and a supportive husband. That is great. Also you are in an MBA program which means you are smart and in a field where there is employment- also great. If you are in part of the country that is cold you don't have to worry about appearance at this time- I am sure you will look fine.  I am sorry that your mom died so early and yet you have the courage to go on. The surgery  will probably ensure that you will live a long happy healthy live without worry. Your ca is so small with no nodes so it looks really promising.  As time goes on you will figure out whether you want additional surgery or are happy with your self as is. But for now you have  a family and you are recuperating. In a few short weeks you will be out and about going back to your pre-c life raising a child which is amazing. Back to school and work- rest while you can.  Take it one day at a time- enjoy your life. It will be great. Peace.

    CR

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  • badger
    badger Member Posts: 34,614
    edited January 2013

    hi Pattszy, sorry you find yourself here but welcome to BCO.  I'm nearly three years post-BMX and doing well.  I'll bump into active topics an informative thread called "diary of a bilateral mastectomy" so you can read some encouraging words.  ((hugs))

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  • peanutsgal
    peanutsgal Member Posts: 161
    edited January 2013

    Hi, I'm sorry you had to be here, but you will find so much support on these boards. I had PBMX almost 3 weeks ago. I would encourage you to check out the January 2013 surgery thread. There are several other young mothers who have had mastectomies this month. It is a real encouragement to share fears, experiences and hope with each other. You can ask questions and vent your feelings without judgement. It is a great group of ladies and there are several who have gone the non reconstruction route. Hope to see you over there! There is also a thread on life without reconstruction which you might find helpful. Good luck to you!

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  • Pattszy
    Pattszy Member Posts: 11
    edited January 2013

    Thank you all for replying to my post. 

    awb- yes my mom also did not experienced chemo only bmx, my surgeon said to me that based on our strong family history i should take all the precautions. as of now i'm in the process of bringing back my strength. warm hugs, so sad that you lost your mother in law with aml. i know the feeling because i saw the pain my mom went through.

    Chocolaterocks- thanks for the encouragement, that's all i'm thinking now i'm happy that i got it at an early stage, and my family is supportive enough to make me feel good. thank you for making me realize the positivity of any trials.

    badger- thanks for the recco, i'll search the topic so that i'll be aware. thanks for the message. hugs

    peanutsgal - thanks i'm alswo browsing the january 2013 thread. thanks for your warm messages, i saw your post a while ago. thanks so much.

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  • Doragirl34
    Doragirl34 Member Posts: 49
    edited January 2013

    I just wanted to say I can relate. My mother survived BC and lived 26 years cancer free. 2 years ago she died from lung cancer.



    Myself and my sister have survived bilateral mastectomies. I'm undergoing reconstruction now and she decided not to. It's difficult. All of this is difficult.



    You have to find the new you, and that is something I'm working on as well.





    Best of luck to you.

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  • Pattszy
    Pattszy Member Posts: 11
    edited January 2013

    @doragirl34 yup the situation that were going through is so painful. but being alive is the most important thing as of the moment. thank you for sharing. hugs. hope we can be a better and stronger person because of this ordeal. thank you for sharing it makes me feel that im not alone because at my age i feel that why am i the only one experiencing this in our family its hard to accept but i must control my emotions and cope up in the situation. im striving very hard to fight for my kid he is just 2 and i want to be a good mom and and a wife. we are just starting to build a family and i think positivity will keep us going. warm hugs to all of us for having the courage and strength to face each day with a smile..

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  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2013

    Hi Pattszy and welcome Smile

    Here is a link to another part of the boards that will take you to the area where many more ladies have had surgery. 

    http://community.breastcancer.org/forum/91

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  • LAstar
    LAstar Member Posts: 1,574
    edited January 2013

    Hi Pattszy -- having a bilateral MX for DCIS gives you a very low recurrence rate so your prognosis is excellent!  Please be careful with the arm where the lymph nodes were taken.  I only had 2 nodes taken but I have had some early signs of lymphedema after having a mole biopsied from my back on that same side.  Do you have a lymphedema sleeve to wear?  

    Hopefully you will turn the corner soon and start feeling better every day.  Losing your mother, being in grad school, and having a breast cancer diagnosis and mastectomy all while having to be a mom -- what a trying time!  I hope you can give yourself some time to rest and not overdo it while you are recovering so that you can get well soon.  My daughter was a huge comfort to me during my recovery.  No medicine is better than a gentle snuggle in bed with a sweet baby and a good book.  Best wishes!  

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  • Pattszy
    Pattszy Member Posts: 11
    edited January 2013

    thank you all for the encouraging messages. i went to an oncologist today and she said my left breast is invasive dcis and needs agressive treatment why now? my surgeon said its not needed anymore coz i already underwent MRM do i need radiation or chemo? anyone here experienced this. my world is in recuperating phase and this possibility of having chemo breaks my heart into pieces i thought the deciding factor is gone but now this. i just want to be positive on things but now i dont know what to think anymore :(

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  • LAstar
    LAstar Member Posts: 1,574
    edited January 2013

    I'm so sorry that you are facing chemo now as well. Did you look back through your pathology report and see the word "invasive" anywhere?  Did the oncologist have your slides reviewed a second time and find something invasive that was not seen before?  Can you get the two of them to have a conversation and clear things up?  

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited January 2013

    Your surgeon and your oncologist have two different fields of specialties. The oncologist should be treating you cancer, and the surgeon is the one that performs the surgery. Although your surgeon may know about treatments, their main focus is NOT oncology (unless of course the surgeon is an oncologist as well).

    I learned this for myself. My surgeon after performing a BMX for DCIS, wanted me to take Tamoxifen. The medical oncologist that I saw said it isn't needed for my situation. This same oncologist, prior to my BMX, suggested I get a hysterectomy, and salping-oophorectomy at the same time as my BMX. When I asked my surgeon, she said that is too much all at one surgery. Each stepped outside their circumference of knowledege.

    I would as your oncologist to give you copies of your pathology and sit down and go through it all with you. The oncologist should explain cancer itself, your particular cancer, your margins, your stage, grade,size of tumor. etc. Then have your treatment choices explained.

    Write down all your questions and concerns. It sounds like you are one of the people that found IDC that must have been hiding. And I expect it is another whack of overwhelming feelings. You thougt you were dealing with DCIS, but now have to go through the process all over again.

    Find out what Stage cancer they have you at and start posting in that particular forum, I think it would help you.

    Your cancer journey has taken you out of the high risk women category. Find your stage cancer and start posting there. I am sure you will get more support and information once you start posting there.

    In my opinion, I would want my oncologist's opinion regarding rads, chemo, tamoxifen, etc.

    I hope you are reading about breast cancer in general on breastcancer.org, cancer.org, and http://www.cancer.gov/cancertopics/types/breast. I think it would help you out.

    You now have DCIS AND IDC (invasive ductal carcinoma).

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  • beacon800
    beacon800 Member Posts: 922
    edited January 2013

    Sorry you are facing all this.

    A bit confused about  your diagnosis.  There is no such thing as invasive DCIS.  The name for dcis is "Ductal Carcinoma In Situ."  The "in situ" means it has not invaded the nearby breast tissue, but is staying inside the lining of the duct.

    If they find cancer outside of the duct, that would be considered invasive.  Maybe list the details of your path report and people can help you on that.  Your signature says 0/36 nodes removed.  Did you have nodes removed from your arm?  That would be more than expected for a dcis situation.  Is that just on one side or both?

    As for your recovery, I am 3 years out from bilateral MX.  I am perfectly fine and no problems and it's great!  i do use breast forms, all different types, depending on what I want them for.  Day to day I use the microbead forms from TLC and they are super lightweight (like nothing) and comfortable.  For sports I use foam ones and when I feel like looking quite chesty I use traditional silicone ones.  Overall, my figure is better than before i enjoy being able to switch up the look.

    It may take 6-8 weeks before you feel even slightly comfortable wearing breast forms and bras.  This is normal.  Just follow how you are feeling and listen to your body.  As times goes by you will be good as new.  Don't try and wear any tight bras and also, when you meet with the fitters for mx bras and forms, be firm about what you  want.  They tried to give me such tight things and I hated them.  I acutally use regular off the shelf bras and add my own sewing to hold a breast form.  I wear a victoria's secret bikini for swimming - those VS people know what they are doing :)

    Take it slow and easy and you'll be fine.

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  • Pattszy
    Pattszy Member Posts: 11
    edited January 2013

    hi all i just updated my diagnosis, i read the path report clearly..  any advise on what treatments to take? currently i'm taking tamoxifen.. i'm a bit confused with the extensive ductal carcinoma in situ that's why i put dcis. im diagnosed stage 0 for my right breast along with it left side seems to be invasive after mastectomy. dcis intermediate grade was first found out after core biopsy that's why im a bit confused. thank you all for your warm messages. it surely is informative based on your experiences. i'm new in this journey that's why im a bit scared.

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  • iatigger
    iatigger Member Posts: 447
    edited January 2013

    Hi Pattszy, Our diagnosis are similar. My oncologist sent my tumor in for Oncotype testing to make sure there was no indication to do chemo. It came back an 8 so she said there was no way I would be doing chemo as the risks outweigh any possible benefit. So if you haven't heard of it ask your oncologist. I have been on Tamox since 10/31 and have done well, just a few warm flashes. Good luck.

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  • Pattszy
    Pattszy Member Posts: 11
    edited January 2013

    iatigger thank you! i will return on monday to talk to my oncologist regarding this. thanks so much

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