Recently Clinically Diagnosed with IBC

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labpsb
labpsb Member Posts: 40
edited June 2014 in IBC (Inflammatory Breast Cancer)
We have been living with cancer for 7 weeks now; my wife was diagnosed with IBC 3b triple negative in early June (she is 48). The tumor grew FAST and there are lymph nodes positive under the arm.

It seems like we have been to Kaiser every day since, on 7/27 she has her 3rd Chemo (AC). Hair went after the first treatment, they want to finish this Chemo, reassess the cancer then probably do the Chemo with the T drug. And the mastectomy and radiation at the appropriate time.

Anyone wait so long for surgery? My wife decided on a double due to the aggressiveness of the cancer.

She has had every scan possible and they look good.

She had a port installed, but her lung collapsed, and now she also has a vent box on her chest.

She still has allot of pain in that lung area, even though the follow up x-rays look good. Anyone else have follow up pain from a collapsed lung, or maybe the pain is from the vent hole and or the port??

I had a friend who is a surgeon review the treatment with the Oncologist and they all agree we are getting the best and proper care.

But how do you know? And if another relative comes to me and says you MUST take Lynne to the Mayo, or to the City of Hope, or some other popular cancer center I think I am going to punch them in the mouth. As it stands now we drive 2 hours each way three to four times a week to Kaiser in Fontana plus the 14 hours in the ER the other day.

I did contact the City of Hope about their clinical trials, but they said we have to wait till she finishes Chemo/Surgery/Radiation (could be over a year). I also met with Kaiser and they said if The City of Hope has a treatment she needs they will cooperate.

We have only just begun my wife has the cancer and I am worn out, will we get into a routine?

Thanks,

Paul and Lynne

Also: I posted this as “Clinically Diagnosed with IBC” that’s what all her doctors listed her as having, but its confusing the biopsy says “Invasive Ductile Carcinoma” I know she is also triple negative, and the breast is considerably swollen. I guess this is all IBC?
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  • lexi4
    lexi4 Member Posts: 1,074
    edited July 2007
    Hi Paul,

    I was diagnosed in August 05 w/ IBC. Originally my diagnosis was IDC stage IIIA. However I had a small pimple that has spread to a small rash, about the size of a dime. I told my onc that it was there prior to my surgery and they weren't concerned. After reading Dr Love's breast book I was concerned it WAS IBC. Sure enough after a skin punch biopsy, I was rediagnosed w/ IBC. Although my path report says IDC and no dermal invasion present. Pretty confusing!

    I am with Kaiser also. I have overall felt happy w/ the care I receive. I am in Northern CA. My husband was actually born at the Kaiser in Fontana! I was surprised that my breast surgeon is Dr. Ernie Bodai and very proactive in breast cancer research. I know that some people will really poo-poo Kaiser, but they have taken care so far.

    Please let Lynne know that this is a wonderful place to come for info and friendship. She is in my prayers. She will be okay.

    Hugs and Prayers,
    Lexi
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  • Homsey
    Homsey Member Posts: 2
    edited July 2007
    Hello Paul & Lynne.

    I too was Dx with IBC 7 weeks ago and am also triple neg. I am in the UK so don't know what Kaiser is. I am having 4 AC cycles and then 4 T cycles. If this reduces the tumour which is 9x5cms I will then have surgery and following this radiation therapy. I have been researching on the net and find that this appears to be the most up to date treatment for IBC. As you know IBC is a rare breast cancer so please feel free to stay in contact as here in the UK it's quite hard to find many other IBC people.
    We will travel this road together.

    Regards, Helen
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  • VAY
    VAY Member Posts: 29
    edited July 2007
    Homsey:

    I was diagnosed with IBC in 2001. I had six rounds of AC and Taxotere at the same time, had mastectomy, radiation and am now on Arimidex. It sounds like you are getting the most common treatment for IBC. It is very rare and very aggressive and there are not many of us out there so we do need to stick together! Keep a positive attitude and hang in there. Do you ever go to the chat room? I am usually there in the evenings...not sure what time that would make it for you. I live outside of Pensacola Florida so I am on central standard time. Hope all goes well and feel free to contact me anytime. Click on my name and my email address is on my profile. God bless you and take care!
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  • labpsb
    labpsb Member Posts: 40
    edited July 2007
    Thank you for the replies, Lynne had her 3rd chemo yesterday and she is not feeling well. I am working on transitioning the posting from me to her (which she did agree to).

    It was very strange reading Helens post from the UK. Lynne and Helen were diagnosed with IBC at the same time, they are both triple neg, they both have the same size tumor, and they are setting down the exact same path for treatment. I could substitute Lynne’s name in Helens post and it would be 100% accurate except for UK and USA.

    Thanks again

    Lynne & Paul

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  • aliciamaris
    aliciamaris Member Posts: 65
    edited July 2007
    I had IDC, not IBC, but wanted to say that I was treated at Kaiser San Francisco. Several months after my treatment was over I went to hear Hope Rugo speak after the San Antonio breast cancer conference. Hope confirmed that the treatment I got at Kaiser was still considered 'state of the art' after new research had come in, so I ended up feeling good about them. Sending your wife and family hugs and hopes for a quick recovery.

    Alicia
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  • Homsey
    Homsey Member Posts: 2
    edited July 2007
    Hello Lynne & Paul

    Just thinking of you and hoping that your feeling a bit better today Lynne. Having my 3rd Chemo on Thursday and also getting my CT results. Very worried about the results but can't change them now and what will be will be.

    Regards, Helen (UK)
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