29 and Just Diagnosed

Mommy2Six
Mommy2Six Member Posts: 119
edited November 2014 in Just Diagnosed

Hello, everyone. 
I'm 29 years old and was just diagnosed with low-grade solid-pattern DCIS. I have been having bloody nipple discharge for several months, and though my mammogram and ultrasound all looked normal besides showing fibrocystic breasts, the dr wanted to do an excisional biopsy. Eight days later I got my diagnosis. Drs are recommending BRCA testing and MRI, followed by daily radiation for 6 weeks, 5 years tamoxifen, and MRI, mammogram, and ultrasound every 6 months for the next 5 years. Because of my experience watching family members fight breast cancer for years, as well as being sick of dealing with breast problems since I was 19 years old, I have requested a bilateral mastectomy. I don't know yet if my surgical oncologist will agree. She wants me to meet with other doctors in the practice first and hear more about all the options. Are there any other young women who have chosen bilateral mastectomy, particularly without reconstruction?

I would also be grateful for any information regarding DCIS statistics, or any information about whether the pattern of the DCIS makes any difference. Also interested to hear how long it took everyone to recover from simple mastectomy. 

Thanks in advance. <3

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  • LittleMelons
    LittleMelons Member Posts: 273
    edited October 2014

    Mommy2six - I'm so sorry that you are having to deal with this.  I am not in the same age bracket and do not have the same diagnosis, but just wanted you to know that someone is here and sympathizes with you.  There aren't as many people on BCO on the weekends so you may not get as many repsonses as you would on a weekday.  You might try posting on the DCIS forum as well.  I'm sure there are some knowledgeable ladies who will come on and give you some good information.  All the best to you.  (((Bug hugs)))

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited October 2014

    Mommy2six, I am not able to answer your questions either, as I was 56 for my surgery, and had DIEP and reconstruction.

    The BRCA testing is easy (a mouth swab if I remember correctly) and results came back fairly rapidly -- that will give you a lot more information to work with. 

    This posting should take your thread back up to the top where other (younger) women might see it and give you more on-target answers.

    You might also want to re-post under a new heading: "seeking Advice from young women who chose bilateral mastectomy without reconstruction"

    Best of luck,

    Linda

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  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited October 2014

    Thank you so much!

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  • lekker
    lekker Member Posts: 594
    edited October 2014

    You say your doctors are recommending BRCA testing - have you spoken with a Licensed Genetic Counselor yet?  I only ask because many MDs are woefully uninformed about genetic causes of breast cancer beyond BRCA and a LGC will look at your big picture.  You mentioned that many family members have had breast cancer - you should find out as much about their diagnoses as possible (histological  type, hormone and HER2 status, genetic test results if any, age at diagnosis, outcome, etc) and the LGC will use that information (along with any other health info you have about yourself and your family) to build your pedigree.  The reason that this is so important is that if you test negative for BRCA without looking deeper, you might still be at a higher risk for breast cancer (and potentially other cancers).  It sounds like you want a BMX regardless of your BRCA results, but there could be other prophylactic procedures or enhanced screening options for you to consider in the future based on your true risk profile.  Good luck with everything and I'm so sorry you have to deal with this at such a young age.

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  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited October 2014

    I will definitely look into that, thank you! If there are other things I should consider being tested for, I want to do that. If nothing else, my kids should know what they might be at increased risk for!

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  • lekker
    lekker Member Posts: 594
    edited October 2014

    I am not qualified to recommend other testing.  That's why I recommend speaking with an LGC. He/she will take a thorough personal and family history and will use that information to see what - if any - testing would be recommended.  Most doctors just jump straight to BRCA.  While it is the most common known genetic cause of breast cancer, it isn't the only one.  Because of my history of two separate primary cancers at young ages, I was referred to an LGC. She started the testing with the limited BRCA test because my jewish background made that the most likely.  When it was negative, I had the complete BRCA analysis with BART.  When that was negative, I had the Broca panel out of the University of Washington that tested 40 different genes.  When that came back negative, my GC suggested I come back in a few years to see if there are any new tests that might be useful for me.  All in all it cost about $8,000 - all covered by my HMO.  The Broca panel now includes complete sequencing of BRCA 1 and 2 along with all of the 40+ other genes in one test.  

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  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited November 2014

    had my appt today and underwent genetic testing for 25 genetic mutations. Now the waiting starts. In the meantime, about to have another biopsy, as my mri showed a suspicious area (birad 4).

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited November 2014

    Best of luck with the next biopsy -- when is it scheduled for?

    Some people find the waiting to be stressful -- I, personally, came to see it as a chance to relax. Everything that could be done was being done, and for the moment, there were no decisions to be made... until the information was gathered.

    Try to step outside of your head and your worries... a walk outside where you consciously feel the sun on your face and the wind in your hair can be quite soothing... and connect your soul to the "one-ness" of everything... somehow that always made my worries fade, and gave me a instant shot of "appreciation" for everything I still had around me to enjoy...

    Besides, the soothing chemicals our body sends out when it is happy/peaceful are (I believe) more conducive to healing than the chemicals our brain streams into our bodies during worry. Whatever makes YOU most happy -- try to spend some time doing that today... and tomorrow... and every day. Pamper yourself with a bubble bath or candles with dinner, or a great movie and popcorn... or snuggle down for a long nap with a good book... or have an ice-cream cone if you want one!

    Life is giving you the perfect reason to be a little self-indulgent -- try to be as loving to yourself as you can imagine!

    Nourishing your soul and pampering your body are great gifts we can ALWAYS give to ourselves... developing this skill (maybe even writing a list of "special things I can do today" to post on the fridge and then draw upon whenever you feel stressed) can be a Life-saver (or at least a marvelous "Life-Enhancer") ... Even simply beginning the list is calming and feels "positive" like gaining some control over the worry... and the disease.

    Sending you best wishes...

    Linda

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  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited November 2014

    That's such great advice...you sound exactly like my husband. He keeps saying, "PLEASE try to be a little selfish for a while. If you can't be selfish when you have cancer, when can you be selfish?!"

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2014

    Mommy2six,  Just wanted to reach out and give you a big hug. I think we need to copy Linda-Ranching's post for everyone, new and old to these forums.  Such sage advice/food for thought.    And oh, by the way, give your husband a big hug, too!  He sounds so very supportive.

    Love, MsP 

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  • MarcelaBR
    MarcelaBR Member Posts: 34
    edited November 2014

    Hey mommy2six..

    I'm not EXACTLY what you are looking for, but close..

    I am 25 yo and just had a double mastectomy one and a half months ago, but I am doing the reconstruction. I found that the most painful thing about the surgery was the pressure that the expander implants caused in the muscle (don't really know how else to describe it, it is a very weird sensation). I was able to do whatever I wanted about 3 weeks after surgery and was completely pain free, but i did have 3 sessions of PT prior to that. I still have one surgery more to go to do the nipples and to put fat around the breasts...anyway t finish the reconstruction, but that wouldn't be the case to you.

    It was not easy to look at myself in the mirror right after surgery. I had large breasts (36DD) and couldn't recognize myself, but I think that by this point in my life I can get used to almost anything...

    Good luck!!!!! :)

    (sorry for spelling mistakes, I'm from Brazil and English is not my first language...)

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  • Cammychris
    Cammychris Member Posts: 99
    edited November 2014

    hello I am sorry you are here. I was 34 at my time of dx. I tested positive after my Cancer was found for brca 2 gene. Before I even had that info I requested a box and my surgeon agreed to it. At first I was all about reconstruction but decided against it. It's a definite personal choice. I did a lot of research on both. I hope that you are in better spirits and if you need to talk I am here. Air hug to you


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  • VioletKali
    VioletKali Member Posts: 243
    edited November 2014

    Hi Mommy2six!!

    My name is Cari, I was DX with breast cancer June 19th 2014, just a few weeks shy of my 32nd birthday! I was diagnosed with invasive breast cancer, but a small portion, 10% of my entire tumor was DCIS. I found my tumor early, when it was 1.7 cm, which is great, but I have chosen an aggressive treatment plan for my cancer-ALL with my Oncologists blessing.I chose a bilateral mastectomy because I 100% did not want radiation, and explained that I would not have RADS even if it was recommended. I am fair skinned. I have an Aunt who had breast cancer at 58, fair skinned as well, and she is now dealing with negative effects from RADS. I also have breast implants. As a Nurse and someone that consulted several plastic surgeons, RADS would have made *my* skin a poor candidate for reconstruction. They believed that my skin quality would be such post RADS that reconstruction would be both difficult, and not give me a result I wanted.

    I could have had a simple lumpectomy, but I decided not to. A bilateral mastectomy offered me a chance for the best reconstruction outcome, and of course YOUR case may vary. I know it seems vain, but I wanted a good cosmetic outcome. I am only 32, I want to feel "whole", and this allows me to feel whole. I also wanted to further reduce my risk of a recurrence.

    I am currently halfway through chemo, and I am cruising right along. I have good days and bad days, but I am making it =)

    I am BRCA1 and 2 negative, and all of my tests came back 100% okay. It is a "fluke" so to speak.

    I was walking 1 mile a day, albeit SLOWLY, 7 days post Mastectomy. The worst part for myself was the drain care, I hated the drains. I had my drains for 3 weeks. Pain was well controlled by meds, and I had LOTS of help from Husband, family, and friends.

    I have no regrets.



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