Aunt just diagnosed Stage III in small town

concernedniece

Good Morning All,

My beloved and awesome Aunt was just diagnosed with Stage 3 Inflammatory Breast Cancer 10 days ago and I want to ensure she is getting the proper treatment since she lives in a small town and doesn't have access to a comprehensive cancer center! Might anyone be able to help me compile a list of questions/tests/treatments she should be getting? I would be eternally grateful as we are all very scared.

A little background:

57 years old

Treated for mastitis about a month and a half ago, after a couple of antibiotic treatments with no improvement, was sent to specialist. Already had peu d'orange and inverted nipple. Confirmed IBC.

Didn't find metastis to organs or bone. She IS receptor status positive, meaning she can potentially benefit from horomone therapy. (Sorry, new to the lingo and not sure what to call this status)

She isn't aware of any other test besides that but I see many women on here that have more information on their bodies.

Is starting chemo today in a slightly larger town but then is supposed to do the rest in her small hometown. This chemo is just for a couple of hours a day.

This is really all she could tell me at this point.

Is there anyone that might be able to help me compile a list of questions/tests/treatments she should be getting? Are IBC treatments standardized across the country now or is she not getting the best care where she is at?

Will she not find out about lymph nodes until after surgery later this fall?

The more questions/details/etc. the better. Again, I would be eternally grateful if someone could help educate me so I can assist her as she is overwhelmed but staying strong!!!

I've already ordered IBC awareness buttons and will wear mine everywhere! Thank you, thank you!

Moderators

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

concernedniece

Thank you so much, Moderators! I will make sure she sees this. You are all so wonderfully supportive. I wish the best for everyone.

Again, any and all details anyone could share would be most welcome...on your courses of chemo/plan/etc., if she should have breast reconstruction after the mastectomy. Also, she isn't sure about and hasn't been counseled on doing the double vs. the single. It seems many do not do reconstruction because it can mask some symptoms if it was to recur?

Just as a side note, she was treated for "mastitis" about a year ago that seemed to get better after antibiotics. I know there is not much research on this which is upsetting, but just in case that is interesting to anyone.

Meadow

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!

concernedniece

Thank you so much for the post, Meadow. It is wonderful to hear about your NED status for a year and a half! Hugs right back at you

Kicks

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

Kicks, you are awesome. I'm so happy about your NED status!

I appreciate your detailed information; all of this will help us immensely. THANK YOU for sharing!

My Aunt actually lives near a town of about 4,000 where they have as nice a hospital as you'll see for a town that size. She did her first chemo yesterday (doing okay so far!) in a town of about 50,000 (La Crosse, WI), which is an hour drive away, but will do the rest in the town nearest her. I actually live a couple of hours away and can't always be there for her, but her husband will be taking her to appointments.

I feel the NEED to find out as much information as possible to ensure she is getting the proper care. She is normally a very thorough person herself but I do not think she is researching much and is going by what her doctors say. Obviously she has a lot to think about right now and normally a person should do just what the doctor says, but it seems to me that isn't always the case with IBC for a variety of reasons.

I'm going to meet up with her on Saturday to first, of course HUG! but then talk about details of treatment. Hopefully I (or she) can come back here with follow up questions.

ibcmets

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

ShetlandPony

Concerned niece, you can look at the standard of care guidelines at NCCN.org. They outline evidence-based care, and are updated yearly. There are publications for patients and for physicians. The latter are heavy reading but very complete. I believe that avoiding "small town" disparities is one of the purposes of the guidelines.

concernedniece

All of this information is very helpful and I've reviewed it carefully. Thank you, thank you! My Aunt had a very hard time the first four days after her first chemo treatment and she had very dark thoughts but then, felt a big turnaround on the fifth day and is back at it. She went back to work. I got to have a fun time with her watching her two sons perform in their bluegrass band last weekend.

She has 14 days between treatments so her next chemo is tomorrow and I'm hoping for the best. She got a wig and some scarves yesterday so is preparing for those changes.

If anyone happens to see this post again-any tips for feeling better after chemo? She has heard that walking is a good therapy. She normally does not exercise but has been trying to walk a little every day.

Kicks

'Look Good Feel Better' is a free class put on by the ACS that teaches how to handle the different challenges of doing make up during chemo. Everyone is given a bag full of cosmetics that have have been donated by big name manufacturersrs.

When I did the class, I did it at the Cancer Center I went to but there are ones done in other places besides just Centers so a call to her local ACS will have the info and can sign up. Or check with the. Breast Cancer Navigator at her Center.