My Cancer is "Inflammatory" is it IBC?

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rosiesgirl
rosiesgirl Member Posts: 89

I am confused. Maybe someone can help. I was worried before results about IBC due to my symptoms. When the pathology came back I was for IDC. I saw radiologist for MRI and BS today. Both told me that my cancer is inflammatory. Does that mean that I have IBC? Are IDC and IBC related? My other numbers are HER2+++, Grade 3. They are saying Stage 3 right now, but don't have lymph node biopsy back yet.

Therapy prescribed is: TCHP - 6 cycles. Mastectomy, Radiation, Hormone Therapy (in that order)

Thanks in advance.

Comments

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

    Ask your Drs for clarification.  'inflammation' in the area does not necessarily translate to Inflammatory Breast Cancer as it is a different type than IDC.  While  it is possible to be both IDC and IBC, it is rarer than just IBC which is only between 1% - 5% of all DXd BCs.

    What is the medical oncologist (chemo Dr) saying for TX?   Surgeon and rads Dr are not the ones who are responsible for chemo - chemo Dr is.

    Nodes can be involved no matter what type.  Node involvement do not automatically mean IBC.  

  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited November 2014

    Thanks for the response. I see the oncologist next week who will verify the plan. The surgeon called it inflammatory and asked if I had read about IBC. She said that I was not a candidate for lumpectomy or conserving skin because it was inflammatory and involved the skin. She also said not to freak out about the things you read about IBC because research has really improved outcomes. I will call for a follow up tomorrow. I just wasn't expecting to hear anything about inflammatory.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited November 2014

    I would think that inflammatory does mean IBC. As far as it's not operable, that means it's not operable right now. But after chemo, it could be operable. I had a mastectomy after 3 cycles of Abraxane and after the cancer was out of the skin. That was 3 years ago and no local recurrence in the skin or breast, so I know it can be done.

    @kicks--my IBC was classified as IDC, so I'm not so sure that IBC does not mean IDC, by definition.

  • Kicks
    Kicks Member Posts: 4,131
    edited November 2014
    Rosiegirl - Do NOT 'freak out'!  I'm IBC and am 5+ yrs since DX and loving LIFE and NED (No Evidence of Disease).
    Stay away from that 'Quack Dr Google".
    IBC is not like other types of BC.  It forms as 'nests' or 'bands' with no margins.  That is why neoadjuvant chemo (pre-surgery) chemo is done to get it to from a 'lump' with margins so surgeon can get it out.  Different Drs do different TX plans.  It appears that most do 2 different types of chemo neoadjuvant first but I did  neoadjuvant and adjuvant.
    Listen to YOUR Drs - not 'ones' on line.
    @WinningSoFar - MY DX is IBC - not 'something' else with another DX added.
  • Akevia
    Akevia Member Posts: 209
    edited November 2014

    Rosiegirl, IDC is the type if cancer but inflammatory just means it's in the skin. My paper says IDC with inflammation and I have IBC stage 3, so yes they are related.

    I agree with winningsofar, my paper work said the same. If your Doc ask you do you know what IBC is and not to be scared sounds like she was telling you that's your diagnosis.

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

    Everything that 'lights up' on a PET is not always a cancer/met. Any inflammation will show up. I had an area along my lower rt. jaw that lit up. It was immediately biopsies and nothing showed up. That was over 5 yes ago and still 'nothing' there.

  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited November 2014

    I am seeing the oncologist on Tuesday and will ask all of these questions. My primary care confirmed to me yesterday that the diagnostic code from breast surgeon was Inflammatory Breast Cancer. Of course everyone is out now for the holiday. I am not going to fret, I have appointments that will answer all of these questions. I am also having a consult at the University of Michigan, which is a leader in IBC research on 12/8. Thanks for all the great information. You have all helped so much. Just to clarify. I did not say anything about stage IV. Surgeon has said stage 3 and we are waiting for biopsy results from lymph nodes (done on Monday) and bone scan next week. I have a CAT scan of the chest and pelvis later today. Thanks again to everyone and I will post again once I have some answers.

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

    Rosiesgirl, you sound like you have your ducks in a row, and like you're managing to keep your head on your shoulders. Good for you!

    My diagnosis included dermal lymphatic emboli of cancer cells in the skin of my breast, and I had a small-ish (about 3 inch) circle of peau-d'orange texture and redness, but not enough to clinically classify it as inflammatory. Still, it was Stage III, node positive, and I got the kitchen sink thrown at it, for which I'm grateful. Coincidentally, my older sister was diagnosed with classic IBC nine months after my own diagnosis, so we've traveled together on the road to recovery.

    For me, it was helpful to think of the whole thing in terms of just a day at a time. If I tried to wrap my head around chemo...surgery...radiation...reconstruction...I would go into panic mode. But one day at a time, I could do it. And I did! So did my sister!

    Blessings to you as you travel along your own road to recovery.

  • kjsimpson
    kjsimpson Member Posts: 445
    edited November 2014

    Hi Rosie,

    I was diagnosed with IBC in August of 2013.  Yes, the vocabulary is confusing (especially at first).  I was equally confused in the beginning.  The good news is that while IBC is very aggressive, there have been some great advances in treatment in recent years. 

    To offer some hope, I was diagnosed as Stage IIIb.  That means that the cancer reached the lymph nodes under my arm but did not infiltrate to lymph nodes above the collar bone or elsewhere in my body.   Treatment was chemo (carboplatin and taxotere) and Herceptin for 6 rounds (every 3 weeks), then bilateral mastectomy, then radiation for 30 rounds, and Herceptin continued after chemo for a full year..  Sounds daunting... but if I can do it then anyone can.  And, I am "NED" (no evidence of disease) now. 

    There is a great facebook page for IBC patients.  If you are interested, just PM me and I'll send you the link.  You have to be diagnosed with IBC to be in the group.

    Best wishes on a successful detour. 

  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited December 2014

    Hi kjsimpson,

    I now have an official diagnosis from breast surgeon and oncologist of IBC. I am getting my mediport on Thursday, but I am delaying start of treatment until after my second opinion at U of Michigan on Monday. Thanks for the kind words. I would like to join the Facebook group if you could PM me the link. Thanks in advance!

    Joy

  • ibcmets
    ibcmets Member Posts: 4,286
    edited December 2014

    Joy,

    Sounds like your Dr. is on top of this. Protocal for IBC is chemo first, radiation & hormonal therapy. I had BMX a year after chemo. I also had IBC & IDC with bone mets from the start in 6/09.

    Terri

  • Jujube43
    Jujube43 Member Posts: 178
    edited December 2014
    https://www.facebook.com/groups/inflammatorybreastcancer/

    Hi Rosies. I belong to the IBC group. I'm sending you the link. You will be contacted by Terry Arnold by private message. Be sure to check your "other " Facebook email folder.

  • wrenn
    wrenn Member Posts: 2,707
    edited December 2014

    I watched a video last night of a doctor at University of Michigan. Dr. Max Wicha. He really does seem to be on top of things. The video is about stem cell research but it would give you an idea of how committed they are there to breast cancer. You can find information about him on google or youtube. All the best to you.

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

    There is more than one TX protocohol for IBC. Yes, neoadjuvant is the first TX used, however, neoadjuvant AND adjuvant chemo is also a TX plan for some. I did 4 DD A/C neoadjuvant, 2 weeks later surgery, 3 weeks later started 12 weekly Taxol, a week later started 25 rads and a week into rads started Femara. Many will do 2 different chemo neoadjuvant but not all - some do neoadjuvant and adjuvant. As my Drs explained it - get it to shrink and form a lump with margins, get it out and then go back with adjuvant chemo to attack any cancerous cell that might still be lurking as not every breast cell can be removed in surgery. Makes sense to me and worked - 5 yes and still NED.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2014

    My IDC quickly turned to IBC after the FNA biopsy. I started chemo immediately and the tumor started shrinking straight away. The mastectomy followed and while the tumor had shrunk to its original size, it was removed with clear margins along with all the nodes under my left arm (2/23). Radiation for five weeks at a high dose finished the treatment, and now I've been on Tamoxifen for a month. I have to say that none of the treatments have really produced side effects of any consequence to date. Looking forward, at a minimum, to the success enjoyed by Kicks!

  • bride
    bride Member Posts: 382
    edited December 2014

    Joy,

    I'm sorry you are joining us IBCers. I was DXed a year ago but now have NED. The posters here gave me more good and useful information than I got anywhere. I had great docs, and didn't need a lot of specific treatment info but I sure needed help in dealing with handling IBC. And I got that help here. Ask anything and someone will find some way to help.

    I just found out that the American Cancer Society gives away free plastic folders with sections for various tests, etc. You might want to pick one up... the folder will hold your first few weeks of info. By then, hopefully, you'll have figured out how you want to arrange your info -- and, by then, you'll probably need a bigger folder. Your docs should provide you with the results of every test, lab, procedure, etc. Hang on to it all, I've re-read some of my stuff and came up with questions I didn't know to ask at the earlier time.

    I know this is a very scary time. Anything I can do to help, let me know.

    bride

  • Jmo06
    Jmo06 Member Posts: 159
    edited December 2014

    Hello wishing you well. My mom had the same diagnosis and same treatment plan. At first it was very scary!!! We were offered hope by saying Stage 3 was curable but was later diagnosed with Stage 4 another shocker, but thanks to support here this is something that can be lived with the right treatment. With her2++ there is so many new drugs to combat this type of cancer. Wish you the best.

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