Standard Treament?

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mstgkillr
mstgkillr Member Posts: 2
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am looking for a little direction!

My mother was recently diagnosed with what appears to be IBC. She has a tumor in her right breast and under her right arm with lymph node involvement. The cancer does not seem to have spread anywhere else. Both tumors tested positive for estrogen and progesterone but negative for HER2. The skin punch biopsy came back negative even though her breast is showing very mild signs of IBC. She is diabetic, overweight, on high blood pressure meds, slightly high cholesterol, and almost 61 years old. Her mugga scan came back at 70%.

I have been reading on the standard treatment options for IBC. Everything that I have found so far points to chemo first, followed by a mastectomy, then radiation, and finally hormone therapies.

We have been going to a major university for diagnoses and treatment but seem to be getting conflicting information. At first, her doctor said that she did not have IBC, but after my mom insisted that she did and asked him to take a closer look; he changed his mind and said she does have IBC. He litterly changed his mind in one minute and this was after seeing her for the second time. How can he change his diagnosis so quickly? The confusing part is the treatment method DID NOT change with the different diagnosis and seems to be out of the norm. The final diagnosis was stage 3 IBC.

He wants her to start with Femara first to try to shrink the tumor for surgery. This seems to be backwards of everything that I have read which has chemo as a first treatment. 

We assumed going to a major university would provide the best doctors but I am not so sure anymore.

Any help would be great.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2010

    Get a second opinion from a different medical facility.  She needs to go where she is comfortable.  You can find more info strictly about ibc from www.eraseibc.com and www.ibcsupport.org.  I did 8 months of  TAC chemo first and then Femara.  Onc is considering surgery now that I'm very stable. IBC is very aggressive and that's why they usually do chemo first.

    Terri

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  • leisaparis
    leisaparis Member Posts: 587
    edited October 2010

    Where are you from? Sometimes that determines how they treat. I had chemo, chemo, surgery, radiation. I'm from northwest Missouri. If you're not satisfied with the treatment get a second opinion. If he can change his mind in a minute, maybe you need to look for someone else. Sorry your family is having to deal with the dreaded diagnosis. CANCER SUCKS, but is survivable. Good luck, (((hugs))). Leisa

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  • mstgkillr
    mstgkillr Member Posts: 2
    edited October 2010

    Thanks for the replies!

    We have an appointment at the Moffit Center in Tampa, Florida, for a second opinion. My mother has already started the Femara so I don't know if it's already too late to change the treatment strategy or not. Hopefully the doctors at the Moffitt Center will agree with the treatment choice. I did speak to her current doctor for a better explanation on the current strategy. His reasoning for starting Femara first, is the cancer tested positive for estrogen and progestrogen, negative for HER2 (FISH 1.7), and she is diabetic, overweight with elevated cholesterol. He said that Femara is a good fit for the first therapy. He also stated that most IBC is estrogen and progestrogen negative which is why chemotherapy is usually the first therapy.

     Any other input would be great!

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  • PinkSunrise
    PinkSunrise Member Posts: 3
    edited October 2010

    Femara can be stopped quickly, if needed.  My first advice would be pray for guidance.  In my journey, since 2007, I have found each doctor has different point of view, and method of treatment.  Sometimes, I think, the scan results, can even be read differently be different doctors.  It is hard to just let your guard down and trust the doctors.  IBC is such a difficult cancer.  Go to the best specialists you can afford.  Take the best of the treatment options they offer.  If your insurance doesn't cover that, then use the advice they offer, with your regular oncologist.  See if they would be willing to follow that advice.  There is no crystal ball in the future.  However it sounds like, your mothers was found early.  This is great news!

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