33 years old and diagnosed with IBC today 😢

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annie2424
annie2424 Member Posts: 4
edited January 2019 in Just Diagnosed

hi all, so this was a group i was hopinh not to join. Im 33 years old i have two beautiful children aged 10 and 11. I have been diagnosed with IBC they think stage 2-3? But will know more hopefully next week. I have a appointment tomorrow with the oncologist and i think im still in shock!!!! I am just so scared 😞. I havnt really cried but feel sick to my stomach and so dizzy and tired.

Please tell me im not going to die, all sorts are fludding round my head.


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  • SavedbyGrace1972
    SavedbyGrace1972 Member Posts: 105
    edited February 2018

    Annie2424

    So sorry you are here, glad you found us. Cry a river because everything is new and unknown. Then do your homework, buckle up and get ready to ride. It is emotional but you can get through it! write down questions for your medical team, there are lots of great articles here, just don't overwhelm yourself which is easy to do. American cancer society has great resources on how to talk to your kids and family. Pray about it, ask for peace and we will be here to support you.

    Hugs

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2018

    Annie--I know, you feel like you've just been hit by a train. I'm sorry. I was diagnosed with Stage III with IBC features in 2011, and my sister was diagnosed with full-on IBC in 2012. We are both doing great.

    There's an IBC thread here on BCO and there are lots of ladies AND men who can offer support. Don't lose hope.

    Gentle hugs--SB

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

    Annie, Welcome to Breastcancer.org,

    We're so sorry for the reasons that bring you here, but really glad you found us. As you can already see, this community is full of amazing members always willing to support you, lend an ear, and share advice and experiences.

    As mentioned above, we all know how hard it is at the beginning, but just know that knowledge is power and the more you learn about your diagnosis and plan your treatment, the better you will start to feel. For some good information, visit the main Breastcancer.org site's pages on Inflammatory Breast Cancer and the Your Breast Cancer Diagnosis section.

    Also, as sbelizabeth mentioned, there's a wonderful IBC forum here with lots and lots of inspirational members who are sure to help answer questions, support you, and share their journeys. Also, meet others who have been diagnosed at a young age in the Young With Breast Cancer forum. We're all here for you.

    We look forward to seeing you around the boards, and helping you as you navigate your diagnosis and treatment. Let us know if you need anything at all!

    --The Mods

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018


    Annie, IBC treatment is doable and I advise you to ask as many questions of your medical team as you want so that you are right up on all aspects of your treatment. Knowledge is indeed power. Likely you'll start with chemo and I found this easy peasy and not as traumatic as the surgery which followed. When you know more details of your tumor post them on the IBC forums here and seek help from the many other people here who've been through treatment.


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  • gingin1234
    gingin1234 Member Posts: 1
    edited February 2018

    Don't lose hope Annie

    Hugs

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  • Dustien
    Dustien Member Posts: 56
    edited February 2018

    Annie,

    I was diagnosed Tuesday so I understand the shock feeling.  I'm 63 though so I'm not quite so scared as you must be.  I think if I were 33 I've no idea how I'd feel.  But from all I've read, life is on your side.  Much has come about in the last few years in the field of breast cancer treatment, patients are living longer more productive lives then ever before after treatment.  You've a lot to live for and attitude is half the battle so hug those young ones tight and determine to go forward with a fighting spirit, allowing them to help and, in turn, I'll bet you find your strength in them!

    I'm in the early stages of Infiltrating Ductal Carcinoma and will be having a full MRI early next week.   My cancer was found during a routine Mammo and, after a biopsy showed cancer I was immediately set up with an MRI and a meeting with a general surgeon before I knew what hit me.  That night I spent a lot of time researching on the net and soul searching and came to the conclusion that I wanted more then just a general surgeon.  I wanted a dedicated Oncology Breast Surgeon.   I spent hours on the net looking at all my options and found one that I thought might fit the bill..called the next morning, set up a meeting with him for the next day (today) and discovered I'D DEFINTELY MADE THE RIGHT DECISION.  He was wonderful explaining everything with me and he's so approachable.  I'm feeling so much more in control of my situation now...and this in three days!    

    My advice to you...take control.  Research the surgeon you're being set up with...demand the best.  We can't control this Cancer...but we can control how we approach trying to kick it's butt!!!

    Dustie


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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited February 2018

    Hi Annie, I was diagnosed at 32 - I had no genetics or family history so it totally blindsided me. There are many of us here in our 30's, so you are not alone. When I was first diagnosed I could turn the tears on like a faucet, and that alternated with just feeling numb. It's normal to have all those emotions - be patient with yourself and kind to yourself. After you gather more information and a treatment plan underway things will settle down.

    One piece of advice - don't get too overwhelmed or scared by other people's experiences. Everyone responds to treatment differently. Early on I was scared of things that actually turned out to be very doable, and the complications I did end up having weren't even on my radar. Just take it one step at a time and listen to your body. Hugs and best wishes to you.

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  • Sharonk0711
    Sharonk0711 Member Posts: 8
    edited February 2018

    Hi Annie,

    Like buttonsmachine said there are a lot of us in our 30's that have been diagnosed. I'm grade 3 triple negative pet scan confirmed lymph node involvement and attached to chest wall. Your in the right place, there is so much information and all the women & men here are so supportive no matter where you are in your journey. Just got diagnosed last month.

    Good Luck to you

    Sharon

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  • IntegraGirl
    IntegraGirl Member Posts: 147
    edited February 2018

    I'm so very sorry you're here. You must feel like you got hit by a truck. Best piece of advice I received was not to drive myself nuts on the internet and ignore anything older than 2 years because the effectiveness of treatment is improving all the time.

    Not going to whitewash it: this year is going to suck. But it's doable and you will have a medical team focused on getting you through it. Just focus on the next step.



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  • amarantha
    amarantha Member Posts: 457
    edited February 2018

    Annie, I am so sorry for your diagnosis, but it is wonderful that they caught it before it got to stage four. They will certainly throw the kitchen sink at you in terms of treatment, but it should all be perfectly doable. I hope that once you recover from the shock you will sail through the treatment and be okay. It will be important for them to really get this right the first time. We'll be here with you.

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  • annie2424
    annie2424 Member Posts: 4
    edited February 2018

    thank you all so much for all your positive responses! Im only 4 days post dx and ive been on one hell of a rollercoster already!! Yesterday was the worse for me. Reality hit with the number of appointments next week during half term so i was having a complete breakdown in my car 😢. Hopefully i will start chemo (fec-t) next friday, oncologist will confirm this as i have to have a tooth out on tuesday 😰. They want to start treatment before i even have a ct or mri due to the rate the odema has spread, onc states regardless of the results this wouldnt change my treatment plan so all guns blazing for friday hopefully. In the space of 3 days i have changed to over analysing every ache and pain. Ive had episodes of forgetting words getting sentences muddled up etc and i was convinced it had spread to my brain. My onc has reassured me there is nothing in my scans to suggest this and its my body reacting to the stress. Ive hardly eaten or slept the past 3 days, and felt very dizzy and light headed also down to stress. Dr has prescribed me zopiclone to help me sleep and rest my brain haha. And i feel like a new woman today as i have had a full 8 hours sleep haha. I am on a high this am and have eaten two full meals so i slowly seem to be getting my appetite back. We plan to tell our kids this weekend, so im sure ill be back down low again. Thank you for your replies xxxx

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  • CarlaPizao
    CarlaPizao Member Posts: 1
    edited October 2018

    Hello Annie! I’ve just come acrossyour post. I’m so absolutely sorry about your diagnosis. How are you doing now?? My heart goes out to you and your family!!! Praying for you all!!!!!

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  • annie2424
    annie2424 Member Posts: 4
    edited October 2018

    hi, thank you for your replies. Ive not been on here for ages! Just to let you all know, i conpleted 6 rounds of chemo, i had a left sided masectomy in July and finished 15 rounds of radio last month. Im on hormone tablets for the next 10 years and i see the oncologist about shutting my ovaries down on Thursday as my cancer was er+. I was declared NED in august (no evidence of disease) and i go back to work next week. Its been an horrendous time but i am SO lucky to have beaten this thing and to carry on with the rest of my life. I have set up an Instagram page for those wanting support and to follow my journey. I hope that i can make just one women or man feel better after being diagnosed with IBC. ww w.instagram.com/anny2424 much love to you all xxx

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited November 2018

    Annie,

    Thank you for posting. I was just diagnosed today and your story gives me hope. I’m so happy that you are doing well! I hope someday that I can post a story like you are now.


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  • annie2424
    annie2424 Member Posts: 4
    edited November 2018

    ahh im sorry to hear about your diagnosis my love! You can and will beat this. Im available on Instagram if you need to talk. Ww w.instagram.com/anny2424 stay strong xxx

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  • Warrier
    Warrier Member Posts: 13
    edited January 2019

    annie son sorry to hear about your diagnosis. I was wondering if you could share how you were diagnosed if you said you were getting treatment before mri which great they are being so proactive.

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