Anyone recently diagnosed, Feb 2014 here

Jules_NY
Jules_NY Member Posts: 276
edited September 2014 in IBC (Inflammatory Breast Cancer)
Anyone recently diagnosed, Feb 2014 here
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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    Hi all,

    Just diagnosed and finished my first 2 chemos, out of 14. My symptoms presented over night. Woke up and felt engorged and itchy in my left breast, my skin was pink around my areola, I had pitting mostly underneath and my nipple was fixed. I called my Gyn and saw her the next day 2/12. She said it looked like mastitis but since I am not breast feeding and didn't have a fever it was unlikely. Had mammo and sono that afternoon, mammo was normal with just some skin swelling, sono showed abnormal spots. Was basically told that I had a 95% chance that it was cancer. 2/14 I had my biopsy and it was confirmed on 2/18 along with a + axillary lymph node. Started A/C treatments on 2/28. Still trying to comprehend, haven't really had time to process it all since everything had to happen so fast.

    Hoping to find some IBC newbies, or semi-newbies here!

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi Jules,i was Dx with IBC just last year and going through all the treatments now,what stage are you?? i am IIIB 

    jess

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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    hi Jess,

    I'm stage IIIC, nice to "meet you" sorry it is under these conditions. Are you still getting chemo? 

    -J

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2014

    Jules, I wasn't dx with IBC--IDC with small skin involvement--but 9 months after my dx my sister was dx with IBC.  

    Both of us are doing very well.  Working full time, exercising, all that.  She finished her Herceptin last December and in her words, "I will think of this as just a really bad cold, and the treatment took a long time, but it's behind me now."  

    Blessings and blue skies to you!

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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    sb thanks so much! I cannot wait to put this behind me!

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi Jules,i have finished chemo and about to finish herceptin soon, radiation starts next week,as i am much older than most here 83,i am coping quite well,Jules can i ask how was your pathology report!..

    Jess

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi Jules,when are you getting your pathology report? did they find any invasive cancer in breast?  been IIIc how far had it spread? i hope no nodes are positive, fingers crossed

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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    Hi Jess, sorry I thought I posted a reply to your other comment. God bless you going through all this at 83! I'm 39 and it's tough for me!!!! My path report showed poorly differentiated infiltrating carcinoma with ductal and lobular features and was also present in the lymphovascular spaces. I also had an axillary lymph node that was + and a skin biopsy that I don't know the results of. But that was done at a different breast surgeons office, one I could get an appt with quickly. My new breast surgeon didn't really care what the skin biopsy showed. My symptoms were enough for the diagnosis of IBC and referred me to onc for treatments. Glad to hear you are almost done!

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  • Btl-mermaid
    Btl-mermaid Member Posts: 1
    edited March 2014

    I haven't been diagnosed yet. Hopefull never. I went to my gyno yesterday with symptoms of a very itchy nipple, feeling like I have mastitis, heavyness, soreness, and a lumpy "ridge" but not exactly a lump. I have an appt to have a mammogram and sonogram tomorrow. I'm was doing some research and came across the post by Jules_NY. It gave me the chills seeing such similar symptoms. I guess I am bracing myself for the worst, hoping for the best. BTW I'm 49.

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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    Btl, hang in there!! Waiting is honestly the hardest part.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jess how many radiation treatments are you having? I recommend using the skin care cream recommended by your Dr. several times a day before you see redness, to stay ahead of it. You are my mom's age, and if your precious skin is like hers it can be fragile. I have seven more tx to go, of 33, and I am struggling with some areas being burned and sensitive. My thoughts are with you brave lady!

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi Meadow,i am having 25 radiotherapy treatments, i have finished my chemo but still have herceptin to finish off, my pathology report after surgery read good i think, no invasive cancer found, nodes all clear 15,and clear margins,i guess that reads well, not sure.maybe someone can tell me..

    I hope everything goes well with you and all the others lovely ladies,as you are much younger i think,,i am 83..

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jess. Yes Ma'am, reads very well. I am 52, and I see we were dx 5 days apart last August,  and thank God I also had 15 clear lymph nodes so we are definitely going through this together. I am so happy for you with such great progress, very happy

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Mermaid, So sorry you are going through this, and your symptoms do sound a lot like mine did and like IBC. But other things can also have these symptoms, that is why many times IBC is not diagnosed the first time around. Like Jules said, the waiting is hard.  Just know that if it is IBC it is not a death sentence...fight hard with mind, body and soul! There have been many advances in IBC, the breast cancer fundraisers and pink ribbon events have really made a difference in this rare cancer, with more advances in treatments and longevity for those diagnosed  so that is good news for us. Please keep us posted! and hang in there.

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    HI Meadow, i am a little baffled, were you Dx stage IV at first Dx,if you had clear nodes how did it become stage IV?

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jess, I see your confusion, and maybe I do not have my profile in correct form. I was dx stage four because I had a positive node biopsy under my arm, so my oncologist said it had spread at least that far. He went on to say that IBC is always a stage 3 or 4 at diagnosis, just by the inflammatory nature of the cancer not in lump form but spreading in sheets of cancer, more free cells in other parts of your body. Because I had a positive lymph node under my arm, outside of the breast, it was a 4. Then after my aggressive and wonderful chemo I had surgery, and all tissue from the mastectomy including 15 nodes were clear, so that is why I put 0/15 in my profile. Should I edit it to say 1/15? to show the one positive before tx? I just don't know!

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Are you based in USA?  what did you Oncologist say about recurrence in our good prognosis! since we had no nodes affected..and our tissue is clear,,,,i am stage IIIB

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    I wanted to write this, as it makes me feel young, but it makes people scratch their heads at the same time, as you know i am 83, i lost my mom 2 years ago at 103,she battled BC for 18 yrs,,,she was Dx at age 80,,,no chemo no nothing,,,and she lived past 100

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jess my oncologist has been so positive, his attitude and knowledge helped me be in a positive frame of mind from the beginning. Because of the aggressive form of cancer that IBC is, he did not have my surgeon remove my port during my mastectomy that I used for chemo, this told me he left the door open that my margins might come back positive from the mastectomy tissue. When all was clean, he was thrilled, as I was, and tells me he sees every reason to NOT expect re occurrence, based on my clean pathology. I will watch for changes and I read here on breastcancer.org website that the chance of IBC reoccurance drops significantly after 3 years NED, so thats a milestone I am looking forward to achieving. Yes I am in the USA, did I read you are In Australia?

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  • Akevia
    Akevia Member Posts: 209
    edited March 2014

    Jessozzie 

      Did your mother have surgery at least? She was a fighter, hopefully she didn't stuffer any with battling the BC. I see you have a long life ahead of you! :-)

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jess, what a blessing to have your mom with you into your 80's. sounds like some good genes there!

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    My mother had surgery and thats it, she was 80 at the time,she went home after surgery and that was it, 18 yrs later she turned 98, she demanded that we take her to see Dr Richard, her oncologist from 18 yrs ago...he was still practising after all those years,,,my mother walked into his office and he fell off his chair....we laughed so much..

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    yes Meadow, i am in Australia,i have 4 children, 2 boys and 2 girls,i do have family (Brother) in Boston,,are you married? kids?  what work do you do?  I am a retired Public prosecutor or what you call a DA.

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2014

    Meadow - I do not see why you say you are Stage IV when you say you have no metastis.  Stage IV is when the cancer (whatever type) has spread to other parts of the body - bones, lungs, brain, skin, etc.  Positive nodes in the axillary (under arm) do not equate to metastic making it Stage IV.

    I was never told I was Stage IV even though it was known with my first biopsies that an axillary node was positive.  19 of my 19 nodes were positive.  Made me Stage IIIc.  I'm still Stage IIIc and NED as there are no mets.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Kicks I understand your point, believe me I would not say I was stage 4 if this was not what my oncologist told me. Maybe I am not communicating his explanation very well,   I meet with the oncologist in a few weeks and I will bring up your point so he can explain to me again. Sorry if this has bothered you

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Kicks, your question of why I say I am stage 4 prompted a little more research on my part, so thanks for that. According to the breast cancer. org web page on IBC staging, stage four is determined by the cancer moving to other organs, lungs, liver, brain, and also lymph nodes in the neck. I remember my oncologist charting he had found swollen lymph nodes in my collar bone area, plus from my affected breast to my hip there was a line of inflammation he could palpitate on exam.These were never biopsied, but he must have used this in my staging. I am thankful to my God it had not traveled to my organs, I understand the definition of metastasized  and your reminder was a good prompt for me to research my own dx so again, thanks. Also I am so very happy for you to be NED, that is the best news ever!.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jess how exciting to be a retired DA, I can tell from your sharp mind you must have been a tiger in the court room! What stories you can tell i am sure.  I am a social worker by degree, haven't worked in that field for a long time. I sub teach in our school system, love doing that. I have two boys, grown, 25 and soon to be 21, and two amazing granddaughters, age 8 and 4. The spouse is a CRNA, or anesthetist, provides anesthesia in surgery.  Do you have the show LAW and ORDER SVU "down under'? I love that show, they always have great courtroom dramas. Doyou travel often to see the brother in Boston? Their base ball team beat our St Louis Cardinals for the World Championship last season, that was big stuff here.

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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    Btl- how did your scans go?

    Jess-my pathology report was from biopsies. I haven't had surgery yet. 

    Jess and Meadow you guys are giving me inspiration!  My onc and surgeon are both very positive about my outcome also. The first time I sat down with him I was emotionally fine, to me it was all business, I was there to learn what it is I needed to do,  after he explained everything he said ok, let's get you cured. I lost it, hysterically crying. To hear those words truly makes me know that there is no other option but to beat this! 

    The affect it is having on my family is a little tough, my kids are young 4 and 6. My husband is a stay at home dad but I can see the stress it is putting on him on my post chemo days. Plus it is hard for them to understand why I can't play sometimes, etc. we explained it to them as best we could in a way they understand but I can still see the struggle.

    Meadow, what grade do you teach?

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2014

    Jules I substitute teach, I do preschool thru high school, but I love the little ones. I am fortunate to be called often in the primary grades, pre k thru 2.. every day is a good day.  It made my heart leap to hear that you are encouraged, I know this has been a crisis for your family and your little ones. My 8 year old granddaughter was stressed about my hair loss and would be really quiet at first around me, The 4 year old said *Nonny, why did you do that to your hair! That's silly." I told them I had to take medicine and it made my hair fall out, but it would grow back. I will say a prayer for your little family.  My spouse really struggled at first, he was tearful a lot which is out of character, and depressed. I finally had to tell I need him to snap out of it. I told him " You are worried about me and I am worried about you and that's the way it's supposed to be. But your negative spirit is distracting me and right now I need to focus on recovery and healing." He changed right then and has been such a great support. I hope your husband's spirit rises soon. Hang in there!

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  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    meadow- we were very honest with my kids from the start, at a level that they can understand. We had to remember that at their age they don't equate cancer with death when they first hear about it. We explained what the medicine will do to me including loosing my hair but that's how we know it is working to kill the bad booboo cancer cells. Loosing my hair is my 6 yearold sons favorite part. He tninks its great, which makes me smile. My daughter has been fine with my baldness too. I usually go commando at home unless my head gets cold. Then I usually put on a bandana. I let them pick out what color bandanas they liked and they also helped me make a blanket that I take with me to my treatments to keep me warm. The social worker where I get my treatments gave us a great book called In Mommy's Garden. It equates cancer cells to weeds in a garden and how sometimes the only way to kill them is with chemicals and those chemicals sometimes makes the petals fall out of the pretty flowers. My husband is hanging in. He knows he has to be strong for me. It just breaks my heart when he gets frustrated with the kids if he thinks they are bothering me. But one more AC to go. Hopefully I'll do better on taxol. This round was a little harder than last time. But my tumor is shrinking. It feels much smaller to me and the onc. And they can no longer feel my axillary node. So I just have to keep hanging onto that news!

    How are the rads going? How many do you have in total?

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