just diagnosed and pregnant

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star2017
star2017 Member Posts: 827
edited July 2018 in Just Diagnosed

please share your thoughts and experiences. we're trying to figure out the next steps. i know i need a mastectomy and chemo, but the order and timing are still up in the air.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2017

    Well, crap. This should be the happiest time of your life and then this nasty cancer has to visit. I felt pretty sorry for myself getting cancer but I just hate it when someone young gets it.

    The order and timing will depend on the specifics of your tumor and how far along you are in your pregnancy. Surprisingly, it's safe to take some of the chemos at certain times during pregnancy.

    I'm guessing you've had a biopsy. What did your pathology report say?

    Hang in there. We're all rooting for you

    Sending lots of hugs, Lucky

  • MTwoman
    MTwoman Member Posts: 2,704
    edited September 2017

    star, so very sorry that you're having to deal with all of the bc crap! There have been some other young and pregnant women on these boards that may be able to help you. I'll need to look around for them and come back to give you some info.

    (edited to add) try connecting to rubyroo (another member in a similar situation) and perhaps posting on the Young with Breast Cancer forum here: https://community.breastcancer.org/forum/27

  • star2017
    star2017 Member Posts: 827
    edited September 2017

    Thanks, Lucky and MTWoman. Thank you for your replies!


    I have multifocal invasive ductile carcinoma in one breast. I'd like to avoid chemo during pregnancy if possible, and since I'm in my third tri I think it's possible, but I may need to have the mastectomy during the pregnancy, if we choose to do that first. It sounds like the recommended chemo will be pretty aggressive, and there's the possibility of radiation and hormonal therapy needed after. Initially I was mostly focused on the mastectomy and related concerns, but I'll be honest, the chemo is freaking me out.

  • jrt1417
    jrt1417 Member Posts: 3
    edited September 2017

    Hi Star2017, I was just diagnosed with triple positive invasive ductile carcinoma on the 19th at 29 weeks pregnant. My first appointment with my cancer team is tomorrow. I have only talked to the nurse that has been assigned to me but she said the doctors had already been communicating with each other and were leaning towards chemo as the first treatment recommendation. Have you received any new information or come up with a plan? How many weeks pregnant are you?

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2017

    Hi jrt1417 and Star2017, and welcome to Breastcancer.org!

    We're so sorry you find yourself here, during what is supposed to be a very happy time in your life! But, we're really glad you found us.

    You may find the information on the main Breastcancer.org site's page on Treatment for Breast Cancer During Pregnancy helpful.

    As well, you may find other helpful posts in the Young With Breast Cancer forum.

    We hope this helps, and we look forward to hearing more from both of you!

    --The Mods

  • star2017
    star2017 Member Posts: 827
    edited September 2017

    jrt, I'm so sorry that you're going through this too. I was diagnosed just before I was 30 weeks. In the days since, the doctors have decided that I'm just close enough to the end of the pregnancy to warrant doing surgery first. I will be having my mastectomy in a couple weeks. then we'll await the arrival of the baby (may deliver a little early, but near term), and then I'll start chemo after I've recovered. The regimen recommended to me is the AC+T regimen. I'm 32 weeks now.


    How are you doing?

  • Brightness456
    Brightness456 Member Posts: 340
    edited September 2017

    Goodness, I'm so sorry both of you are here instead of some happy pregnancy site looking at baby furniture or something. I have no advice, but wanted to encourage you to ask as many questions as you like and vent away as much as you need. This site has so much information. I'm older and my children are grown, but I fell apart with my dx and this site really carried me through some dark days. Please look at the other threads as suggested above. Know that imsending positive thoughts your way.

  • jrt1417
    jrt1417 Member Posts: 3
    edited September 2017

    Star, are you her2+? I just looked back at my notes from my phone conversation with the nurse and she said since I am, that's why they're leaning towards chemo first. I won't make any commitments to that until after I meet with a high risk OB on Monday. I'm doing ok, just anxious to do something. It's making me feel a little claustrophobic knowing that it's in there growing. I'll be 31 weeks on Sunday, it's so nice to communicate with someone facing the same thing at the same time, even though it's under pretty crappy circumstances. I'm here if you need me. Feel free to reach out anytime.

  • jrt1417
    jrt1417 Member Posts: 3
    edited September 2017

    Thank you Brightness4! This site has already helped a lot and I'm sure I'll have a million more things to search for after my appointment tomorrow.

  • SA8PG
    SA8PG Member Posts: 371
    edited September 2017

    Hi :)

    I’m so sorry you all are dealing with this while your pregnant. Please reach out if you need anything. I was diagnosed in my third trimester in 2014. We induced at 38 weeks, we started chemo the day my baby came home from the nicu (he was in there 2 weeks). We did dose dense AC x4 and then Taxol x3. Double mastectomy after that. I’m writing to give you hope that we are both doing great 3 years later. Hugs ladies. I’m here for any questions you might have. Xox

  • dtad
    dtad Member Posts: 2,323
    edited September 2017

    So sorry you are dealing with this disease at such a young age and also pregnant, Just not fair. Hopefully you will get knowledge and comfort from others who also went through this. Good luck and please keep us posted...

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2017

    I'm so sorry for all of you. I can't imagine going through this while pregnant too. What I have found is that while there are many of us here to offer advise you have a unique bond that will can be a great support system. It is nice to have someone going through the exact same trials as you to bounce things off of. I would encourage you, in addition to posting here, to reach out and actually talk. I have made wonderful friendships with ladies at my chemo and radiation center. You need that support.

    My prayers, as always, go out to all the women here

  • star2017
    star2017 Member Posts: 827
    edited September 2017

    Brightness: Thank you for your kind words. I think that this baby has helped to keep me positive and focused on a healthy future, so I feel blessed to be pregnant, though of course I wish we didn't have to worry about this disease. I'm sorry that you also had to deal with breast cancer. I hope you have been well since.

    JRT: one tumor site was Her2 negative and the other was inconclusive. I'm not sure if they've gotten the results from further testing of that. Have you gone to see multiple doctors? I live near lots of university hospitals and went to two to address my case. Initially one of the oncologists recommended chemo first, but after he met with his breast cancer team, he changed his mind and now both sets of doctors I saw are recommending the same protocol. In some ways, I'm glad I don't have to make that difficult decision. One of the reasons they don't want to do chemo first anymore is that they prefer to do two cycles and then wait 3-4 weeks before delivery, and that is just cutting it close for me. You may be just early enough that the other recommendation makes more sense.

  • star2017
    star2017 Member Posts: 827
    edited September 2017

    SA8PG: I'm so sorry you had to go through this too. I really appreciate your reaching out. Would you mind talking about what chemo was like? I am most nervous about that, especially with older kids around.

    dtad: thank you!

    Legomaster225: That's good advice. Thank you.

  • SA8PG
    SA8PG Member Posts: 371
    edited October 2017

    Hi Star,

    When do you start your chemo? Do you know yet if surgery before or after chemo is the plan?

    Pm if you have specifics. Happy to talk to you as well.

    Hugs

  • star2017
    star2017 Member Posts: 827
    edited October 2017

    SA8PG: chemo will start a few weeks after delivery, tho i'm not sure about exact timing yet.

  • kgreene16
    kgreene16 Member Posts: 3
    edited October 2017

    I was diagnosed at 17 weeks pregnant at beginning of July. I had lumpectomy surgery right away, no general anesthesia as it might not be safe for the baby, just spinal block and fentanyl. I just finished 4 rounds of A/C chemo treatment, which is safe for pregnancy, and I tolerated it very well. I will have taxol, herceptin, and radiation starting 1 week after my delivery at 38 weeks. It awful to be diagnosed and treated while pregnant but it is doable. Let me know if you have any questions and good luck!

  • star2017
    star2017 Member Posts: 827
    edited October 2017

    Hi KGreene16. I'm sorry you've been going through this too, but am glad to hear it's going well for you. How were the chemo side effects?

  • kgreene16
    kgreene16 Member Posts: 3
    edited October 2017

    A/C was not as bad as expected. They call it the 'red devil' so I feared the worst, but it was totally doable for me. You take steroids and zofran the day of treatment and for 4 days afterwards which kept the nausea away and gave me a lot of energy. Day 5 I felt a little nauseous and kind of like I was hungover, but you can take more zofran if its bad enough. I usually got an infusion of fluids around day 7 as I was having trouble staying hydrated and got some headaches (chemo can dry out your body and the baby sucked up any hydration I had left) so the fluids really helped me feel better and flush my system. Each round the side effects got a little worse but usually by day 10 I was back to normal. I worked from home a few days but other than that I kept working the whole time. Everyone has a different experience, but hopefully yours goes as well as mine. And, of course my hair fell out about 2 weeks after the first treatment. After a few days of pulling out clumps all day long my hair stylist came over and shaved it. Also, not as traumatic as expected, I was read for the shedding to stop and I had prepared with wigs and hats. Remember it's just hair, it will grow back!

    It sounds like you will be having A/C after delivery, right? You may want to see if family and friends can help with the baby if possible on the days you don't feel so great so you can rest. I will be having weekly taxol with a newborn which I am very nervous about so I am right there with you!

    Also, you should check out Hope for Two's website. It's a support group for pregnant women with cancer. They can hook you up with someone who had the same or similar diagnosis as you and can share their experience. I spoke with someone who had the same diagnosis and treatment as me and now is doing well with a healthy 3 year old! They also have a lot of survivor stories on their website which is encouraging.

    Let me know if I can answer anymore questions!

  • star2017
    star2017 Member Posts: 827
    edited October 2017

    Thanks for explaining all that, Kgreene. I'm hoping my side effects aren't too bad either. I've been worried about the older kids getting scared at the sight of me being sick. Luckily I've got lots of friends/family around, so I think we'll have help with the baby, especially on bad days. I haven't connected with Hope for Two yet, but thank you for the recommendation. The local hospitals did help me connect with other mothers going through this.

  • Anna-33
    Anna-33 Member Posts: 192
    edited October 2017

    Just wanted to tell you that you are not alone! I got diagnosed while I was pregnant earlier this year... For me they decided to do mastectomy first, then two weeks later i gave birth (premature) and two weeks later I started chemo...

  • star2017
    star2017 Member Posts: 827
    edited October 2017

    Hi Anna,

    I'm sorry that you have had to go thorugh this too. How are you doing these days? Are you all done with chemo?

    Did you opt for reconstruction, and if so, did you do the tissue expander when you got your mastectomy?


    Star

  • kgreene16
    kgreene16 Member Posts: 3
    edited October 2017

    How did things go getting chemo while taking care of a newborn? I am so nervous about juggling everything. Any tips for managing? I hard a hard enough time when my 3 year old was a newborn and I wasn't going through any of this....

  • star2017
    star2017 Member Posts: 827
    edited October 2017

    I'll be having surgery next week, will deliver a couple weeks later, and will start chemo a month after that. I'm nervous but glad to have a plan and move forward.


    I'm not sure yet if we'll do the tissue expander during this surgery.

  • Rubyroo
    Rubyroo Member Posts: 38
    edited December 2017

    Hi ladies,

    Just wanted to pipe in here - I was diagnosed at 15 weeks pregnant earlier this year and did surgery and chemo (AC) while pregnant. I tolerated it all very well with hardly any side effects. My mental health fared worse than my actual body.

    They wanted to induce me but I delivered naturally on my own at 38 weeks exactly! My baby is healthy and strong. I just finished 21 rounds of rads and am now on Tamoxifen.

    It’s been a hellish ride and my heart goes out to all other women who have to experience cancer while pregnant. It’s hard but you can get through it - just keep your eye on the prize (your amazing baby)!

    Happy to chat through PM if anyone has any questions. There is also a Facebook group for mamas with cancer/diagnosed in pregnancy. Let me know if you’re interested

  • Anna-33
    Anna-33 Member Posts: 192
    edited July 2018

    Star .... sorry for my late answear... I finished all chemo and rads last autumn. Now I am on aromasin and zoladex... Trying to live «normal», but I am afraid of getting mets... SO...if there are any long time survivors after breast cancer during pregnancy please say «hey»...

    How are you doing Star

  • star2017
    star2017 Member Posts: 827
    edited July 2018

    I'm doing ok. Just finished radiation last week, so still feeling the fatigue and discomfort from that. I need to complete the fills and exchange on my prophylactic side. Plan to do the fills now, but will wait till the kids' school reopens before doing the exchange.

    Baby is a sweetheart and doing well.

    I'm scared of mets too.


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