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IBC TN diagnosed 9/14/20 - misdiagnosed

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EBBA12
EBBA12 Member Posts: 36

I was misdiagnosed during covid19 for a small dog scratch infection for two months.

I am 59 years old and worried. Husband not doing well with diagnosis. His father died of cancer 56 and he survived testicular cancer at age 30.

Delays due to covid19 - I was finally seen and given amoxicillin clavid. I kept my annual mammogram and ultra sound because I have dense breasts. They kept me for a long time, The next day I saw a breast surgeon who did a biopsy confirmed cancer - when results came back diagnoses IBC TN 4.5cm tumor 3B 1 lymph nodes involvement

I met an MO and had a PET scan did not spread to other organs. Started chemo A/C 4 cycles every 2 weeks. then 4 cycles of taxol, after my 2nd treatment (6 I total of 8)of my breasts became red and swollen and I can also feel muscle twinges - is that normal. The MO said it was the chemo + the cancer. I'm not sure the taxol is working can my tumor be chemo resistant to taxol? Or is it working?Has anyone experienced this before. I see the breast surgeon on 1/4/21. I asked the MO if she wants to do an MRI - her response NO.

Breast surgeon wants to do a mastectomy on only the right breast. It was suggested to leave the left breast because IBC TN would not come back there but another cancer did they would have an area to treat vs scar tissue.

Can anyone suggest important questions to ask. I am out of my element with very limited support.

After surgery I would receive radiation for 5 to 6 weeks,

EBBA12




Comments

  • LivinLife
    LivinLife Member Posts: 301
    edited December 2020
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    Hi EBBA12! I truly cannot answer the questions you asked. I typically would not even read or respond in the Inflammatory Breast Cancer forum b/c it has nothing to do with anything I've experienced. I saw you posted about 5 hours ago though and had not received any response yet. I at least wanted to acknowledge your post, send a welcome and support. Though there is some activity on the overall site today I do not know when you may get a response given the holiday. Please hang in there and some responses will come, all right?

  • LivinLife
    LivinLife Member Posts: 301
    edited December 2020
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    I just noticed you started a thread in the Triple Negatives forum several days ago. You may want to keep all your questions/updates in the same thread so others can keep up with your history and how things unfold. That way you will get specific responses based on your history and updates. Certainly post responses in any thread.....

  • melissadallas
    melissadallas Member Posts: 929
    edited December 2020
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    LivinLife, she finally found the IBC forum where she needed to be, as it is much more rare. The TNBC forum is not specific enough to her situation. She SHOULD be posting right here

  • blue22
    blue22 Member Posts: 172
    edited December 2020
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    Hi EBBA12

    My tumor was slow to respond to Taxol. I had 12 weeks of Taxol plus some clinical trial meds during that time, followed by 4 weeks of AC. My MO was concerned about the lack of response and I did have an extra MRI (I had multiple due to the slow response, being in a clinical trial, and the other breast also had irregularities that led to an MRI guided biopsy for that breast)

    In the end, the pathology of the tumor showed that although I did not have PCR, the tumor had responded to the chemo. At the time of surgery the tumor was smaller (I had a lump although that is not common for IBC), the skin was still red, but a punch biopsy was clean.

    I'm not sure what you mean by "6 of my breasts became red and swollen". Sounds like a typo but I don't know what you were trying to say...

    I think my biggest worry prior to surgery was that the skin was clear. They should not operate if there is still cancer in your skin.

    Regarding surgery of both breasts - my SO was against a double mastectomy - despite the fact that I had abnormal cells in my right breast for which she wanted to do a lumpectomy. Turned out I actually had DCIS in my other breast. I would have preferred a double mastectomy, but they were more worried about a good outcome from the IBC surgery so that I would be able to continue treatment (radiation) etc.

    I'm sure others will post here too, but it is slow because of the holiday.

    Feel free to ask more questions. I know this is very stressful.

    Take Care,

    Blue


  • blue22
    blue22 Member Posts: 172
    edited December 2020
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    Thanks Melissa!

    LivinLife - IBC will dictate her treatment etc. much more than her tumor being triple negative. This is the right place for her to post!


  • EBBA12
    EBBA12 Member Posts: 36
    edited December 2020
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    i adjusted it was treatment #6 of taxol (second cancer drug which I am only receiving 4 rounds not 12

  • blue22
    blue22 Member Posts: 172
    edited December 2020
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    So both of your breasts are red and swollen?

    I actually have to correct myself. I was scheduled for 12 of Taxol, but ended up switching to Abraxane partway through due to reaction to Taxol (rashes)

  • EBBA12
    EBBA12 Member Posts: 36
    edited December 2020
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    No it still only the right IBC TN breast. Maybe It was more pink and fuller looking more than swollen ( so hard to tell the difference these days ) not sure if it appears larger because it is pink and hard. The pain twinges has me really worried - is it still the interaction between taxol and the cancer

    So when I see the Breast surgeon she should do a biopsy to see if the skin still has cancer. Ebba12


  • LivinLife
    LivinLife Member Posts: 301
    edited December 2020
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    Yes, I realized a bit later one of the sites was better than the other... thanks MelissaDallas!

  • blue22
    blue22 Member Posts: 172
    edited December 2020
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    Hi Ebba12,

    My breast was much worse after I started treatment than before. Definitely redder, lump was harder etc. I think they said they hoped it was the body reacting to the tumor... but my memory is not the best.

    You can ask for a punch biopsy to make sure the skin is clear. Maybe others on this group can post about how long they had chemo prior to surgery.

    Blue

  • missmom79
    missmom79 Member Posts: 90
    edited January 2021
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    I have inflammatory breast cancer and when it’s diagnosed it’s always diagnosed stage 3b. This is not a death sentence. My breast did get redder with taxol. I just means that the taxol is working against the cancer in your breast. In fact my breast was slightly pink with my very last taxol and right before my single non skin sparing mastectomy. Even those at MDAnderson hospital for inflammatory breast cancer will tell you that it’s normal. I had almost a complete response to chemotherapy. I had about 1 node involved also but only difference with me is that I am her 2 positive and not triple negative. Also there is a certain protocol that must be followed with inflammatory breast cancer as it is a different breast cancer and very aggressive. I would ask to make sure you are getting a radical non skin sparing mastectomy. And I believe you cannot have reconstruction for 2 years after. And 6 weeks of rads sounds accurate for IBC. I had 33 rads. 

  • missmom79
    missmom79 Member Posts: 90
    edited January 2021
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    And I just relived you live in New York! So do I. I live in upstate by. And also it was my right breast too. 

  • missmom79
    missmom79 Member Posts: 90
    edited January 2021
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    Oh and also I had 4 AC and then 12 taxol with herceptin and pregeta as I was her 2 positive. 

  • EBBA12
    EBBA12 Member Posts: 36
    edited January 2021
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    I saw the breast surgeon on 1/4/21. Looks like the tumor did not respond well to the chemo - the outside thick skin wall measures 13cm. Surgeon will be doing a radical non skin sparing Mastectomy - needing a plastic surgeon to do skin graft from my thigh. i also had an MRI showed the tumor has a slight attachment to my chest wall. The TUMOR BOARD meeting this Friday 1/8/21 to discuss my case. The Breast Surgeon will call me afterward with the best cause of action to treat me for the best option to get a clear PCR with a NED. (They will discuss if I should receive radiation before surgery) Fingers crossed. I will keep you posted

    I do apricate all your replies.

    Thanks EBBA12

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2021
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    EBBA12, I cannot speak to your specific situation, but I can say that with unusual and difficult cancers (mine has also grown through chemo, a few times) you should get an opinion from an NCI designated cancer center if you haven't already. These are research hospitals and they are better equipped to deal with complex cases. Best wishes to you.

    Find and NCI-Designated Cancer Center

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2021
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    Also, I had that same (or very similar) surgery. I had a chest wall resection (like a radical mastectomy) with a skin graft from my thigh to patch the very large hole. I also did radiation afterwards.

    If you ever want to send me a private message feel free. Not many of us end up in that boat. ((Hugs))

  • blue22
    blue22 Member Posts: 172
    edited January 2021
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    Hi Ebba,

    I second buttonsmachine 's suggestion that you make sure you go to an NCI Designated cancer center if you have not already. IBC is much more serious than what most people who have breast cancer deal with.

    Hopefully the tumor is responding to the treatment but just not shrinking noticeably. Although mine was still quite large at the time of surgery, the percent of viable tumor cells remaining was pretty small. (There is a term for this but it evades me thanks to chemo brain...)

    Wishing you the best!

    Blue

  • Leslie2010
    Leslie2010 Member Posts: 29
    edited January 2021
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    EBBA12, I feel for you...
    As a TN IBC 10 yr. survivor, based on what I read from your msg., I am encouraged to hear they were considering radiation before surgery. My tumor didn’t respond to AC, I was switched to weekly Taxol+Carbo, all thru my treatments my tumor stayed rock solid. I consulted with an IBC specialist, he advised me Not to have the surgery before a near total response to treatments. So, against my tumor board’s recommendation which was the SOP, mastectomy after 6 months of chemo, I followed the IBC specialist’s recommended follow on treatment which was Xeloda + radiation. Best of luck to you!!!
  • EBBA12
    EBBA12 Member Posts: 36
    edited January 2021
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    Tumor board recommendation. I would have cat scan today but RO machine broke so my appt is T 1/19.

    RADIATION 33 treatments for 6.5 weeks - in conjunction with chemo cisplatin 1x wkly and keytruda 1x every 3 wks at the same time as cisplatin. They said these chemo drugs enhances the radiation treatment to reduce the thick skin mass before surgery. They said I would not need radiation afterwards.

    Also RO like cream MIADERM - applying it 4x a da

    The RO said they treated someone my age with my same symptoms - this person has been cancer free for 2 years now. 🤗 EBBA12

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2021
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    Ebba, I'm so glad to hear of your treatment possibilities. It sounds like you're in good hands. I've heard good things about keytruda too. Best wishes as you go through the next steps.