31 yrs old, mother of 3, with triple negative IBC

Respiratorysarah
Respiratorysarah Member Posts: 2
edited April 2016 in IBC (Inflammatory Breast Cancer)

So this is my first post to any message board, and want to connect with people who are on the same journey as myself. I just married my high school sweetheart in December on 12/13/14. We have 3 boys ages 6months, a 2 yr old we adopted in July, and a 6 yr old. I am a respiratory care practitioner at the University of San Francisco, and was taken off work October 12th, the day my life changed forever.

This all started about 3 months after our last son was born. I had some edema around the nipple/areola area. I was get worse and worse, and now had chest pain a monto later. I went to the doctor, and she thought it could be mastitis, and placed on antibiotics. This didn't work and now I had a breast that was now pink, and almost double the size with peau de orange. OBGYN referred me to have a mammogram, and this came back with skin thickening. I was referred to ucsf where I work for a consult. The NP quickly called in the chief of the breast cancer center, and my husband and I looked at eachother, and knew this wasn't good. She said right away this does look like IBC, and she began to feel around for lymph nodes which I didn't know we're even swollen. She walked me down for a fine needle aspiration biopsy and placed a chemical on the samples, and it turned blue. I got to look at my cancer face to face. Since then, now 2 to 3 weeks ago, my life has been turned upside down. Scans/test show that u am a triple negative, I have had a port placed, started 20 weeks of chemo on 10/28. 12 weeks of taxol and carboplatin,then 8 weeks of AC. I am a very positive person, and feel the universe only dishes out what you can handle. I just want to connect with people going through the same thing as me, and compare stories, laugh, cry, and whatever else I feel like doing.

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Hi Sarah, I am also triple negative IBC in active treatment (started carbo/taxol on July 22, now doing FEC (which is similar to AC))

    I don't have little tiny children but I do still have one child at home, a 15 year old girl.

    This whole experience has really changed our lives as I was previously the caretaker of all and everyone and super active and right now I am the one who needs care taken of, very weird and uncomfortable for me. The week I started chemotherapy I was supposed to have been biking across Iowa. Instead I started a different journey (and I think I kind of hate that word "journey" as used with cancer, it isn't really a journey, it's a totally shitty thing that happens and you have to deal with it!)

    I will be in active treatment on about the same timeline you will because during my carbo/taxol days I ended up having to delay by one week each cycle due to low blood counts (I would get carbo+taxol one week, taxol the next, then have to skip, then taxol and do it all over again). Also my second set of drugs is FECx6 every 21 days rather than ACx4 every 14 days so you should catch up to me pretty quickly. So, as far as someone who is going through a very similar treatment plan for a very similar diagnosis at the same time, I am here for you. There are a good number of other TN IBC survivors here who will likely chime in and give (us both) lots of hope and encouragement.

    -Julie

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  • Respiratorysarah
    Respiratorysarah Member Posts: 2
    edited November 2015

    hi, ty for you response.I am stage 3 to 4. They say a grey area into 4 because of several lymph nodes which are cancerous, from my neck and collarbone to my side. I have a large area in my chest wall that needs to be removed as well. I meet with the breast surgeon this Tuesday, and find out if I'm brach1positive. If I am I'll do a hysterectomy also. I'm happy to find this site because my husband and I were terrified after looking at the prognosis online.

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    OMG do not google. I know what you mean. YOU are not a statistic!!!!

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  • ubellen
    ubellen Member Posts: 11
    edited December 2015

    yes my life is turned upside-down. This disease is horrible and i feel like theres no one who understands. I go to doctors who have only seen one or 2 cases. Nurses and staff are not familiar with ibc. Should i move to texas and go to md Anderson cancer center? Im overwhelmed with emotions.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited December 2015

    Sarah,

    I'm sorry you are going through this so young with young children. I hope you have lots of family support. Strides have been made with ibc. Sometimes denial helps, at least it helped me get through the first 6 months. I felt much better knowing I had a great medical team looking after me. You will be watched closely. You are in a great area for this type of care at UCSF. I'm at UCDAVIS now in Sacramento.

    You can look up threads here for whatever treatment you will be going through and gets lots of support. Best wishes to you and your family and please do check back with us.

    Terri

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  • pjvalenti02
    pjvalenti02 Member Posts: 7
    edited December 2015

    Hi Sarah..... I was diagnosed on 5/28/10. A day I will never forget. Mine was found very early but even so it was still stage 3. After my double mastectomy they found partial one lymph node involved. From everything I have been told and read that was a very good outcome. I went through 6 rounds of chemo-probably the worst part. Then double mastectomy then 32 days radiation. I am a single mom. My son was 11 when I was diagnosed. Horrible time for him too. I've had a lot of scares over the last 5 years including right now. Still panicking over my Mri tomorrow.😞 The best advice I can give you is to stay positive (really hard to do sometimes) remember having your family and friends close to lean on is Just as important as the treatment. Trust that your doctors know what they are doing and trust in the way you feel. Don't ever feel bad for bothering them because it is your life. You know your body. Until you get use to the NEW normal it's better to be safe than sorry!!!! 😊 stay strong. Patty


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  • Scwilly
    Scwilly Member Posts: 489
    edited January 2016

    Hi Sarah (from another Sarah)

    I was dx with TN IBC on Nov 6th 2014, and I know how much of a shock this is. You have come to the right place as there are lots of very supportive women and great information here. The treatment feels so long but it does pass. I'm now 2 and bit years out from dx and back to my normal self, hair grown, reconstruction done and feeling very positive. Of course I am not out of the woods yet - but I try not to worry about what might come. I think this bout of illness has taught me I can cope and get through things.

    My advice would be to try to circle yourself with support, especially as you have little ones. Mine were 15 & 17 when I was dx. On his now at college (just found out he made the Track and Field Team :D ) and the other a junior at HS. If you deligate then you will get the help you feel most comfortable with. My best support was from fiends who came for a week (I'm from the UK and now live in Southern California) The company and the practical help was what got me though treatment.

    Its like having kids, theres lots advice out there - but use it to educate yourself and to come to your own decisions. I found that the side-effect drugs were great for me - holding off the symptoms unless I didn't take them!

    Hugs and best wishes

    Sarah

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  • Scwilly
    Scwilly Member Posts: 489
    edited January 2016

    Thanks Bonnie its such fantastic news for him. He worked so hard leading up to his first race in front of the coach! ☺️

    Just reread my post - and I didn't get support from fiends - that would have been quite an experience. 😂

    I suppose everyone must know it was meant to be friends!

    Hope you are well 'other Sarah


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  • Scwilly
    Scwilly Member Posts: 489
    edited January 2016

    Jon is a 400m runner, but thinks he will move towards the 800m. He has currently ran a 600m and 400m indoors. Managed to watch his race online today even though we are 1200 miles south of Seattle! :D



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  • LMN
    LMN Member Posts: 35
    edited January 2016

    Hi Sarah I want to wish you well and also caution the googling about IBC. I have done it myself and understand how scary it can seem. I am pretty new to this site and also the group on Facebook and am now about seven months into my IBC experience. I had never even paid much attention at all to breast cancer and now feel over informed, although I am really just learning. Look for the silver linings as you go along.

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  • Milwmama
    Milwmama Member Posts: 115
    edited April 2016

    I am in the same club, and newer here. TN IBC, I am also BRCA2 positive. 51 years old, married 30 years in August, 2 daughters. One 21 graduating next month from college then coming back home, and one 25 living in another city with her boyfriend. My husband is a retired cop, who is extremely busy with part time jobs, but takes good care of me. I'm a Secretary at a high school, who was put on long term disability due to the nature of kids and a compromised immune system.

    I was diagnosed January 11 and have been doing chemo since Jan 21. Started with AC and have moved on to Taxol, with Carboplatin intermingled every third week. AC sucked, I lovingly called it the Tasmanian Devil. Taxol is betterish, I usually have at least two or three good days. Carbo...we will see. I get my second dose tomorrow. I have had one delay for low counts, that also sucked. I want to get this over and move on.

    When done with chemo I am having a double mastectomy, ovaries removed and after recovery from that radiation for 6 weeks. After one year from radiation and now return of cancer, I will get a reconstruction using my belly fat, or where ever else they need to get it from, but they will use whatever I already have, no implants.

    SE have been mostly fatigue, really bad. Also had a rash on my forearms but cortizone worked on that. Some constipation, which presented hemorrhoids, fun :/ Hair is gone, eyebrows are slowly going. Eyes are watery. Get some minor headaches but they usually go away. Mostly little annoying things.

    What I really will be glad about is when winters hold on WI finally ends and the sun and warmth show up again :) 👍


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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited April 2016

    Milwmama, this is a pretty old thread and the OP never came back so I am going to guess that it won't get a lot of attention. I am also TN, BTW. Let's get the lounge going, that thread has some promise ;) And, thank goodness for some good weather this week, eh?

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