diagnosed with ibc, whats next

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rosewillow
rosewillow Member Posts: 10
edited June 2014 in IBC (Inflammatory Breast Cancer)

i have this week been diagnosed with ibc, with lymph node involvement, had cat scan body and brain this week awaiting results will see dr on monday and hopefully with plan of action, most of the time i feel numb, no anger, no energy for this, what am i to expect, can i prepare myself mentally for this battle, any help out there

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2012

    Rose,

    Glad you are being fully tested.  This will let you know your complete status with this and help your doctors know exactly what to treat you with.

    I hope your scans come out clean.  You will develop strength to carry you through this.

    Terri

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  • rosewillow
    rosewillow Member Posts: 10
    edited June 2012
    thanks terri for your kind words, i have been to see my consultant today, clarified on my initial diagnosis i have ibc er pr -neg,her 2 pos, gene rec neg,skin bopsy neg, cat scan showed no mets. plan to commence chemo after consult with omco;ogy team for 4mts,folowed by rt macestomy and reconstruction during same procedure then radium therapy, .he also stated i would be on long term medication, (would this be herception), as i have been scrolling through these sites i keep looking out for people with same gene factors er pr - her 2+ and i see very few . what does this mean, dr seems positive about treatment but i have not had the courage to ask about my prognosis, i am alot more positive than i was a week ago and feel that as its still localised to rt breast and lymph nodes this can be treated.as this cancer has not been activated by my hormones what could have caused it, looking back over last few years i probably have been under a lot of stress ,family breavements etc, i thought i had coped well with everything as i see myself as being quite easy going and got on with day to day living but could all this stress have triggered these cancer cells.  thanks again to all who have posted on these sites as by reading your stories etc i have found hope something that wasnt there a week ago.      
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  • HerSister
    HerSister Member Posts: 51
    edited June 2012

    Rosewillow,

    I am sorry about your diagnosis.  I hope to encourage you by telling you that I (and my sister who is the IBC patient) find our hope, strength & comfort in Jesus.

    My sister & I were just talking on Sunday about extreme stress/grief causing cancer!  Prior to her diagnosis, our family went through great stress and grief thanks to family members.  Being the main target of attacks from them, my sister took the brunt of the stress of the attacks and really took hard the ensuing grief (as we no longer are in contact w/ those family members).  She is also someone for whom things have never easily rolled off of.  We believe there is a connection.  I've read many times the connection of repressed feelings (hurt, anger, resentment) and developing cancer.

    Also, I noted you mentioned reconstruction during mastectomy (MX)... If I'm correct, I think I've heard from several different (IBC) sources that reconstruction is best done some time after MX.  I'm pointing this out in the event that perhaps your doctor is not very aware of IBC.  Another point is that I've read constantly how important it is to find someone that specializes in IBC as treatment is different than with other BC's.  Hopefully someone else much more knowledgeable will come along and correct me if I'm wrong.  I would highly suggest you do some research on that procedure & on IBC in general (google, etc.) to be sure you are receiving the best course of treatment.

    Praying for you!

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  • indiangirl
    indiangirl Member Posts: 6
    edited June 2012

    Rosewillow,

      I am sorry for your diagnosis. My mother has also been diagnosed with IBC with er pr -neg,her 2 pos, skin bopsy +ve, cat scan showed no mets. She has 4 nodes involved. She is undergoing 6 rounds of Chemo with Taxotere,Carboplatin ,herceptin. Done with 2 rounds of chemo. After chemo she will have her Rt breast removed and then radiation.

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  • Dutchie
    Dutchie Member Posts: 112
    edited June 2012

    Hi, I am ER /PR negative and HER 2 positive just like you! I was diagnosed with IBC in may 2008 and went through the treatment you will be having: chemo (epirubicin/cytoxan/avastin/ taxol/Herceptin followed by mastectomy and more avastin and Herceptin.



    I know Avastin is not being used anymore (I was part of a trial) but otherwise our paths are the same, and I am not only here but thriving!



    I know how scared you must be...I was too. But I will be happy to walk you through any of this. I've been exactly where you are and now 4 years later I am doing fantastic. I was 39 at diagnosis and I turn 44 Monday.



    There is nothing but hope for you, along with some phenomenal treatments (including Herceptin). Keep the faith and contact me anytime. Best wishes to you!

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  • Dutchie
    Dutchie Member Posts: 112
    edited June 2012

    I should add that I had a right mastectomy but was not allowed to have reconstruction at the time as per my clinical trial. I never ended up doing it.

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  • venaba
    venaba Member Posts: 22
    edited June 2012

    Hello Rose,

    I am glad you came to the right place to seek information.  I am also her2 +, er and pr -.i  I am 11 months out from my double mastectomy and anxiously awaiting my rebuild. 

    I am not sure where you are from but the standard that I've seen for IBC is chemo, surgery, radiation, and Herceptin.  It might be helpful to you to consult with a specialist in IBC.  Most of the larger teaching hospitals have such a doctor.  My oncologist told me IBC is it's own kind of cancer and should not be considered as other breast cancers.  

    Sorry for your diagnosis.  As my brother told me, "Sis, the important thing here is to not get excited." So true but yet it is hard to walk around and exist until you get some answers.  You can contact me anytime,send a personal message- I will be glad to answer questions or share imformation.

     

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  • Marianne52
    Marianne52 Member Posts: 78
    edited June 2012

    Hi, I was just diagnosed last week also. I had a Pet/ Cat Scan yesterday. I won't find out my results out till next Thursday. I have five days to think about it. I am so afraid that they are going to tell me it is in other organs. Found this site by mistake. So glad I did. May God Bless us all.

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  • rosewillow
    rosewillow Member Posts: 10
    edited June 2012

    thanks gilrls for all your encouragement, went to see oncologist and due to start tch on 3rd july,i have to get catherer port inserted, the oncologist said that i appear to have ductal cariconoma, rather than ibc as my skin biopsy was neg, and no further swelling has occured, she was able to take measurements of the mass, but wiyh my other assessments they could only find a skin thickening, wondering if trauma form blind biopsys could have effect, dont know what to think, i live in a rural area in ireland and do not have access to ibc specialist centres, everyone i have met in the professional care has been very reassuring and open. confused at present. 

    any of u lot treated with tch, did u have to take dexametasone 16mgs for three days post/prior to chemo, how did u find the therapy, side effects etc, got my hair cut short (not skinned) preparing myself mentally.......

    good thoughts to u all , keep telling myself i can fight this,come out the other end smiling and stronger, maybe its all part of lifes journey............

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  • rosewillow
    rosewillow Member Posts: 10
    edited July 2012

    just an un update, had my first round af ach chemo yesterday, feeling good, no sickness, drinking loads of fluids, just a little tired today, delighted to have it started and finding strenght ,thinking and praying for us all, but its onwards and upwards.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2012

    Rosewillow,

    The dex will give you lots of energy for a couple days, may have a hard time sleeping.  I took natural Melatonin(over the counter) for this. Ask your onc dept about this.  Glad you got through chemo. 

    I had my chemo every 3 weeks for 8 months.  I felt my best the week b/4 I had to do another chemo, but I was not nauseous and they gave me Emmend which worked well.

    Start counting down each chemo to get through it.

    Sending Hugs.

    Terri

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