DCIS and Heartbroken - have to stop breastfeeding my baby

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SusieInSeattle
SusieInSeattle Member Posts: 8
edited January 2019 in DCIS (Ductal Carcinoma In Situ)

Greetings everyone. I received my DCIS dx on November 10. Here I am, over a month later and still in the treatment planning phase because of a number of tests and variables to consider. I feel great about my care team at Seattle Cancer Care Alliance. I am getting my third and hopefully last biopsy this Wednesday. It is of a lymphnode this time. The node showed slight activity on a previous MRI but the radiologist said it was due to a biopsy I had before that. My care team wants to be absolutely sure. I also have to meet with specialist on January 11th to discuss the genetic mutation I have (RAD51D) to decide if I should go ahead with a BMX over a unilateral MX.

Anyway, barring any alarming surprises, I know I'll be ok. But my heart is broken. My baby, Beau (pronounced "Bo" for those of you unfamiliar with this old-timey name) is six and a half months old right now. He is my first baby. He was conceived a month after my husband and got married. Married at 31, baby at 32, and now, cancer at 33. Things were going so well! Before having Beau, I had never given breastfeeding much thought. After some challenges when he was first born, it has become so important to us. At least it feel so. He is thriving and I love being able to nourish him the most natural way. I know he would / will be fine on formula, I just don't want that. And beyond Beau, if I am fortunate enough to have more babies, I want to be able to breastfeed them. If I have to get a BMX I won't be able to and that makes me really sad. Nourishment aside, the bond developed while breastfeeding is so beautiful and I appreciate it.

The way the cancer I have was found is interesting and I'd like to share. Beau was around four and half months old and going through growth spurt of sorts and nursing like a little animal. He doesn't have teeth yet, luckily, but was biting down pretty hard and consistently on my right nipple. It caused a painful bump that wouldn't go away. I consulted a Lactation consultant and eventually a breast specialist. She wasn't worried, but I was worried that it would cause further issues like blockages and mastitis, so insisted on imaging. I had an ultrasound and my first mammogram a few days later. I am so thankful for the thorough radiologist because she determined that the nipple lump was nothing (it eventually gave, it was just clogged milk) but she very carefully zoomed in again and again on the left and found four clusters of calcium deposits. Biopsy the following week, and DCIS diagnosis two days later. I call Beau my little hero. If I had found this cancer before I conceived Beau, then we wouldn't have had him and I can't imagine life without this little man. If he hadn't led me to imaging, I would not have had a mammogram for another seven years, as all my providers had recommended, and by then it may have turned into something much uglier. I'll need to find another way to tell this story as Beau gets older though, what kid would want to hear that he bit his Mom's nipple!

I am anxious for a few reasons now. I want a treatment plan and surgery date. This in between time of no action is very upsetting. I also am nervous because lactating breast tissue is difficult to image on both MRI and mammogram, so I fear there's more there. Also, the RAD51D factor.

What a confusing time. It's funny because after getting pregnant and having my baby, I appreciate my body more than I ever have. I let go of all my hangups and insecurities and felt so positive. I strive to eat well and be active and now BAM - cancer.

Thank you for reading and for any thoughts or comments you share.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    Thanks for sharing your story! It sounds like Beau is quite the little hero. Cancer causes us to have to re-imagine so many things about our lives. Your feelings about breastfeeding and future children are so understandable. It’s just another loss of sorts. You are in a good place in this forum. We understand the feeling of loss. I’m past my years of having kids but am currently raising three teenage girls and facing issues of loss at my life stage as well, I send you hugs and wish peace for you. I was so so very anxious to get a surgery date on the calendar...I totally understand how you are feeling. I had to have an extra biopsy before my surgery as well. Waiting is the worst. You will feel a sense of peace, I think, once you have the details. Keep posting here. The people here will lift you up. Even with loss there can be peace.

    Love,

    Wigging


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  • MoonGirlJess
    MoonGirlJess Member Posts: 267
    edited December 2018

    Susie—I’m so sorry to hear your story. (I’m a Seattle-born girl myself) I know that imagining has to be difficult through breasts that are producing milk. I had problems, too, with MRI imaging of my breast as I had just had surgery so the MRI had everything light up. They can’t see what they need to see. I know it takes awhile for that to resolve. I’m sorry!

    I breast fed my daughter, too. She quit herself at 9 months because she got bored with my boobs and wanted to watch my cats rather than breastfeed. It is a great bonding experience but I’m sure your sweet Beau (love that name) will love looking I’m his mamas eyes just the same.

    You will get a treatment plan and feel much better. The waiting and not knowing what’s next is hard. You’ve found a great place here.

    Big hug. You got this girl!

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2018

    Hi there, Susie! We want to welcome you to our community and thank you so much for sharing your story. We know what a shock it can be, and we're so sorry that your diagnosis has affected your nursing relationship with Beau. That's got to be such a hard loss to reconcile! Once the ball gets rolling, things will move along much more quickly, and we hope you're able to get a plan in place very soon. We are all here for you!

    The Mods

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  • SusieInSeattle
    SusieInSeattle Member Posts: 8
    edited December 2018

    Thank you for your comments already! That’s a wise way to put it, Wigging - loss. Having DCIS is a bit confusing because on one hand the prognosis is so positive, especially compared to many other types of cancer. On the other hand, it causes loss. And extreme measures for treatment, in cases.


    MoongirlJess - that’s so funny you mention your daughter being distracted by the cat. That is happening with Beau lately, he can’t keep his eyes off her. She is wary!

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  • Gramto4
    Gramto4 Member Posts: 51
    edited December 2018

    SusieinSeattle- I too was diagnosed with DCIS this year and I’m curious on how they determined you have the genetic mutation RAD51D. I don’t recall my Oncologist discussing this. I had a Unilateral MX on my right breast and they couldn’t do a nipple sparing MX as the cancer cells were very close to the nipple. I saw a team of three Oncologists and they all agreed that it wasn’t necessary to have the BMX......now im wonder

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  • MCBaker
    MCBaker Member Posts: 1,555
    edited December 2018

    Susie, breastfeeding was so important to me. I am wondering if having a mastectomy of the troublesome breast, leaving the left breast intact and still lactating for Beau, would be a viable option. The trauma of forced weaning would be difficult for you both. You could always have a prophylactic mastectomy of the left breast later.

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  • SusieInSeattle
    SusieInSeattle Member Posts: 8
    edited December 2018

    Gramto4, you have to seek genetic testing, not every oncologist will recommend it necessarily, and not all insurance plans will cover it. I sought out testing over a year before my dx because my Mom, her Mom, and her grand mother all had bc, so I feared it was a gene mutation. They found that yes, I have the RAD51d mutation, but it is not absolutely the reason I got DCIS. I am seeing a oncology gynecologist at the University of Washington who is an expert in this mutation to discuss risks. It actually shows correlation with ovarian cancer (I'm not really ready to talk about that yet, one step at a time) but recent studies show it may affect breast cancers too. Since you have now been diagnosed with bc, hopefully your insurance will cover a test. Gramto4, I'm so sorry you had to go through a mx. How are you? Don't let genetic testing make you worry because I must say, I have received many mixed messages from medical providers about genetic testing. It is in general, a newer field. Some think it is overused. Some think it should not be considered in treatment. The scores they give are just statistics, not YOU per say. For instance, mine gave me a 45% chance of getting breast cancer in my lifetime. I got this test when I was 32. It said my chance of getting bc in the next 5 years was 0.5%! Now 45% seems absolutely huge. But anyway, talking to experts is needed.

    MCBaker, I hope that I can have the affected breast removed and keep the healthy one until I'm done having babies. That is what I want and what one oncologist believes is the best option. Another one thinks it's too risky and that since my DCIS is 100% estrogen receptor positive, I might see a recurrence in the right while pregnant or breastfeeding in the future. So, I'm seeking that expert's help before I decide.

    Wigging2000, thank you for saying "reimagine." I've been doing that a lot the last day and it helps greatly.

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  • SusieInSeattle
    SusieInSeattle Member Posts: 8
    edited December 2018

    I have good news, I think. I spoke with an expert on the gene mutation I have (RAD51D) and she believes that a unilateral mx is the way to go. I’m meeting with a plastic surgeon on Friday to discuss options. It looks like it is very possible I may be able to continue breastfeeding my little guy! And look forward to nourishing future babies.

    Why though, are these otherwise delightful and sweet holidays so hard? I have so many supportive and loving family memebers around me, yet my mind keeps wandering to the fact that I have cancer. Even with good news, I now worry that after surgery, I’ll get cancer on the healthy side. I don’t know what to do with all this worry. I tend to fold in on myself and get quiet. That’s easy to do the last few days because I also have my baby to care for so I just disappear into the guest room and nap or be with him. It doesn’t feel good. But I also don’t want to talk about it without everyone. Feeling conflicted. Any advice?

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  • egregious
    egregious Member Posts: 240
    edited December 2018

    Hi Susie,

    You’ve had a hard time!

    Definitely don’t have to share with everyone. Maybe pick two or three people who really listen and understand.

    I did a page on caringbridge.org to keep other family and friends updated without saying the same thing 17 times.

    I like the option of keeping one breast, can always do that surgery later if you decide. But DCIS on one side doesn’t mean take both off! Too much treatment. (Not a doctor, keep asking actual doctors until you are satisfied with their advice for YOU)

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  • SusieInSeattle
    SusieInSeattle Member Posts: 8
    edited January 2019

    System overload last night. I had made my choice for treatment: unilateral mastectomy, expander placement two weeks later, swap for an implant in three months or longer. Go about my life, have another baby when my husband and I are ready. Then, have a prophylactic mastectomy on the other side (due to family history) and have either matching implants or FLaP done at that time. Dates for initial surgeries still pending.

    It took me a long time and a lot of consideration to arrive at this decision. Like most DCIS patients, it seems, no one tells us exactly what to do, we have to choose based on all the professional, familial and support network advice. And only we know what’s best for us. I was diagnosed almost two months ago. I’m so ready to get going.

    All along the way I’ve asked my caring, smart DH what he thinks about which way I should go: lumpectomy, MX, BMX, etc. again and again he said, “I think it’s your body.” I stopped asking after a while because of that response and also because I had to go to a few appointments alone while he stayed home with our baby, so he didn’t hear what the docs said except from my explanation afterward. I felt supported and like he trusted me to make the choice.

    Then last night, after days of poor communication and struggle between us, he says he thinks I should either get a Lumpectomy with radiation or a DMX. He doesn’t want me to have to have an MX twice in my life and says it will affect my ability to care for my baby (and possible future babies) too much, ie, not be able to pick them up for a few weeks after surgery.

    I feel like I just got tossed up into the air and landed upside down. I was doing well. I was making progress. I was working on being optimistic. I was happy that I don’t have to give up breastfeeding my baby and would have the option to breastfeed more in the future. Trying to focus on caring for my baby, thinking about going back to work. Now.... ladies!! I’m struggling so hard today! I feel like this is the opposite of the support I need from my DH.

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  • egregious
    egregious Member Posts: 240
    edited January 2019

    Hi SusieinSeattle,

    You've been through a lot! Just having a baby is overwhelming at times, let alone with a cancer diagnosis. When you add difficult choices on top of that, it just seems like too much.

    Sounds like a lot of people are giving conflicting advice. Is there a hurry to get to surgery as it's just DCIS and not invasive?

    What happens with future surgeries and future babies can be figured out later. There's no reason that a second MX should be at the same time as the second baby.

    Lots of moms need help with their kids for lots of reasons. If you are one of them for medical reasons there is no shame in that. Feels like there is a mighty lot of pressure on you. Hope you feel you have enough time to make your decisions.


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  • SusieInSeattle
    SusieInSeattle Member Posts: 8
    edited January 2019

    Thank you egregious. It is not urgent, all things considered. But it is imminent. I thought I had made my choice so now I feel set back.


    You’re right / what happens in the future is the future, I can’t know how it will unfold and don’t need to overreact now.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    I wonder if you could get just a lumpectomy now, and do a future MX when you are done w having babies?

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    hi again SusieInSeattle!

    The first thing I'll say is, it's your body and your choice. I'm sorry that your husband isn't giving you the support that you need. He's maybe feeling scared about you being down and unable to care for your kids. Honestly though recovery from MX is fairly short term in the grand scheme of things. Another thing to keep in mind is that lumpectomies sometimes have to be repeated, and sometimes mastectomies have to be done after lumpectomy. Radiation is also a big commitment and will make it harder for you to do child care. Does he understand all these things? Since he didn't go to the doctor with you he may not fully get it.

    You need to make the choice that's best for you in the long term. Husbands get scared, too, and it sounds like that might be where he's coming from right now.

    Hugs! It will all work out in the way that it's supposed to. Trust yourself.


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  • TrmTab
    TrmTab Member Posts: 832
    edited January 2019

    Susie

    Sorry you are facing this, but I wanted to cast a vote in favor of a single MX. That way you avoid radiation (which has its own risks) and keep a good side during recovery.

    I went this route and at MX and both exchange surgeries (first implant was wayyyy toooo big) I have been back up on my feet the next day. You will have restrictions on carrying weight (babies) for the first month, but otherwise the recovery period was/has been smooth -- and I am living through this right now as I had my second exchange less than three weeks ago, 12/17 and then hosted and cooked Christmas dinner for my family, husband did have to pick up the ham, but otherwise no other accommodation needed.

    On a personal note, sorry if this is TMI, besides the potential ability to breastfeed, maintaining a native breast is also part of you intimate life with your husband. While I look normal in clothes, the breast mound is not a breast when you are naked! TT

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  • CindyL33
    CindyL33 Member Posts: 25
    edited January 2019

    I am so sorry you have DCIS. Your little guy is certainly a blessing from God, He works in mysterious ways you know... I've been diagnosed DCIS also. I've been reading tons of stuff (from reliable sources). I don't have close family history of bc but there was some. I suggest researching pros and cons btwn mx and lumpectomy, you might be surprised.

    I am actually shocked and surprised that so many have had the mx on one or both breasts just having DCIS. I know we are all different and each has their own history. I truly knew nothing about bc until I was diagnosed. Luckily, I am a reader, love to read and research. Even more so since becoming a Christian. I read and research all things bible and Gods Word too. This above all has been the biggest help for me.

    I pray for you to make the best choice. God has sent you a message through your Beau and now you have to make the next decision. Peace to you Susie, have patience, think it through. It will all work out for what's best for you.

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  • TrmTab
    TrmTab Member Posts: 832
    edited January 2019

    Yes, Cindy...I too was quite disheartened to lose my L Breast due to a "non-cancer"...but after two LX without clear margins I was given no other choice. However, since I did have two LX with clear margins, I did not have a SNB. I was marked, but it wasn't taken and the pathology was clear, so I do not have any LE issues. TT

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  • sierramtngirl
    sierramtngirl Member Posts: 30
    edited January 2019

    I felt compelled to respond to your post, because just one year and 2 months ago, I was in your shoes. Dx with R DCIS while nursing my 8 month old baby. In so many ways, I wish I'd done your exact treatment plan....weaning my baby was the absolute worst thing. Heartbreak upon heartbreak. But, with 3 small children, and making it to the one year mark by the time my treatment plan was in place, I ended up just having DMX and being done with it since our youngest was our last. It felt like the right thing to do at the end of the day so that I didn't have to have multiple surgical procedures with limited family support. Big Hugs to you. And best of luck with all of this. I'm so sorry you have to be here.

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