Aunt just diagnosed Stage III in small town

Dear concernedniece, We are sorry to hear about your aunt and glad that you reached out here for support and information. While you are waiting for some responses you might want to check out information on our own site about Inflammatory Breast Cancer. Keep us posted on how things go for her and for you. The Mods

You are a loving niece to learn about her cancer. My niece is precious to me so I understand. I have IBC too. I had AC and Taxol chemotherapy, double mastectomy, 35 rads. I had reconstruction at the same time as my mastectomy, but I have been told this is not the usually the case. I am now NED status, No Evidence of Disease, which is what we strive for. I have been cancer free for a year and a half. Please tell your aunt that good health is to be had at the end of her treatments. Hugs to you all!

I, too, am IBC. Was DXd Aug '09 and still NED and loving/living life everyday to the utmost.

When you say a 'small town', what do you mean size wise? Means different things in different parts of the country. I live in a 'small town' pop. probably about 1,000. The 'big town' ('biggest in over 300 miles) is probably about 65,000 pop. which would make it a small town in some areas.

IBC is rare - only between 1% - 5% of all DXd types of BC. It is aggressive and presents rapidly - often literally overnight. There has not been as much research done with it as other types as there just aren't a lot of IBCers.

Neoadjuvant (pre- surgery) Chemo is a 'given' for IBC. It forms as 'nests' or 'bands' so neoadjuvant Chemo is done to get it to form a lump with margins and shrink so surgeon has a chance of 'getting it'. Most do 2 different Chemo neoadjuvant and none adjuvant. A few of us (me included) will do both neoadjuvant Chemo and adjuvant (post surgery) Chemo. Rads also follow and HT (not to be confused with HRT) for ER+/PR+ for years or 'forever' and Herceptin for HER2+ for the rest of the year.

Meadow had recon immediately but I didn't - was told had to wait at least a year for it IF wanted. (I haven't done recon - nor do I plan to, my choice.). We all have different Drs who have different ideas on TX plan, we all enter TX differently bring different health, beliefs, many issues that all weigh on what is 'right' for us individually. There is no 'One Size Fits All'.

Depending on the areas biopsied, it may be known if a particular node is pos. In my case, the first 'sign' was a node under arm that went from not there at all one night and the next night the size of an almond. It was a week (Thurs) til I could see my PA. Saw her at 11, had new mammo at 1 that afternoon immediately followed by US and biopsies, had path. report at 8 the next morning (Fri) - IBC, saw Surgeon on Mon, saw Rads Dr on Wed, saw Chemo Dr on Thurs. There were a lot of scans/tests/port implant and 17 days after DX started 4 DD A/C neoadjuvant, 2 weeks after last A/C had UMX (unilateral mastectomy), 3 weeks later started 12 weekly Taxol adjuvant, a week after last Taxol started 25 rads and a week after starting rads started Femara/letrozole 'forever'. (I'm ER+/PR-, so estrogen blocker is needed. I'm HER2- so Herceptin not needed.)

What scans/tests have been done? Not all that are done with/for some are appropriate/needed with IBC.

Will you be going to her appts? Will she lost you with her Dr's office as one who has legal authorization for them (Dr/PA/NP/RN) can talk to you? Hubby and Son are listed with ALL my Drs so if they don't understand what I tell them of all appts or want more information/have questions, they can legally get 'whatever'.

I have a little pad that I write down all questions I come up with and make a 2nd copy to hand to the Dr - sometimes they can include more than one question into a more concise reply. Another idea is to record the appts on smart phone (or tape recorder) so it can be re-heard/reviewed later if need to.

Concernedniece: Wonderful that you are advocating for your Aunt. I was diagnosed with ibc & idc with bone mets in 6/09. IBC requires chemo first because it affects the lymph system in her breast and does not show up as a tumor. It's good that she is ER+ because she will be able to go on hormone therapy after chemo. Many IBC patients require mastectomy as well, but timing would be up to her onc. When I was diagnosed, my onc did a lot of tests just to compare & to be sure of my diagnosis. I did PET scan, bone scan, brain MRI & regular MRI. After all that, we knew exactly what I had & where the metastasis was. I get a PET scan every 6 months for status & every 3 months if I acquire anything new.

Wishing the best for your Aunt.

Terri