New here, hoping it's a short stay...

BeverlyMom

Hello all,

I'm a 34-year old wife and working mother of 2 girls (4 and 16 mo). I have what seem to be some pretty classic IBC symptoms (red, warm, breast, inverted nipple, dimpling, etc) and finally went to my PCP yesterday. I'm kicking myself because I waited so long since the redness appeared (6 wk? more?). I had justified the redness and hardness as hormonal thing post-pregnancy or maybe some unresolved mastitis, though I stopped bf a year ago. Anyhow, finally let myself google the redness and immediately freaked myself out...only to have my PCP pretty much agree with me the next day.

Now, all of a sudden, I have a biopsy, mammogram & u/s tomorrow (and maybe more). I am freaking out. I CAN'T have cancer. Seriously? I've been through a lot in my 34 years (a rare e-coli blood disorder w/ kidney failure, bleeding pituitary tumor removed but with brain surgery complications, fungal sphenoid sinusitis...to name a few). I have terrible medical luck (seem to only get RARE things) and am just praying it's not IBC. But really, what else could it be?!? My PCP in Boston didn't really offer up any ideas. Anyone know of other diagnoses? I guess mastitis is a possibility, just seems unlikely. The look on my PCP's face said a lot. I am so worried--for me and my young family.

Any advice/good vibes/prayers are more than welcome. Thanks for listening.

Marie

catbill

I can't be of any help medically.  I'm sure someone will be along shortly who can.  But prayers and good vibes...now those I can do.  Best of luck!!

BeverlyMom

Thanks so much, I really appreciate it. I haven't told a lot of people yet as I don't want to unnecessarily worry them...but it's also hard to go alone. Thanks again!

ibcmets

Marie,

Stay as calm as you can until you find out the results.  It's very good that your doctors are taking you seriously and doing all these tests.  They are needed to find out exactly what your diagnosis is.  Saying a prayer for you.

Terri

abatellik

Marie, I will definitely pray for you. The not knowing is so hard! But just remember, IBC is very RARE. So hold on to that hope...

abatellik

Marie, I will definitely pray for you and your family. Not knownig is so hard! An infection is always an option.

mrsnjband

So are you seeing a breast specialist or just your PCP? You really need to go to a breast specialist who is familiar with IBC as it can be tricky to diagnos. 

If they do all the "standard" tests & they don't show anything you need to have a breast MRI.  My IBC didn't show on the regular test & wasn't found until the breast MRI. Sometimes it just a clincial diagnosis based on symptoms.  

Try not to painic, I know that is hard. Keep us updated on how things go.

Sending love & prayers. NJ 

BeverlyMom

Thanks, everyone. I'm seeing a breast specialist in Boston, so feel as though I'll receive great care. Always happy to be in a place with great hospitals when needed! The surgeon is definitely knowledgeable on IBC as I've been able to find articles on IBC online from her, which is reassuring!

Definitely trying not to panic as I know that isn't going to help. Caring for my kiddos is definitely helping, they keep me busy! Mammogram is in just over an hour, so time to get offline and get myself into the city. Thanks again for all the thoughts and prayers!!!

BeverlyMom

Well, had my mammogram, u/s and biopsy (breast and lymph node) today...and after the specialist saw the results, I was given "Breast Cancer - Treatment Handbook". So that sort of sealed the deal. While we won't be 100% sure until we get pathology, my doctor is quite confident it's cancer (when I asked if it could be anything else, she just sort of looked at my with a sympathetic "no").

The "good" news is that she thinks there's a chance that it could be "regular" cancer and not IBC since I have more of a lump...never thought I'd be praying FOR breast cancer! But I am. She also said that it's possible that I'll only need a lumpectomy...but obviously too early for that. Meeting with an onologist on Tuesday. And so it begins for me. Thanks again for listening.

Bren-2007

Beverly .. just want you to know you're in my thoughts.  It's never a great sign when they give you the little breast cancer booklet.

Hoping you get your results soon, the waiting is so difficult.

Stay close and post often.

hugs,

Bren

lexi4

Dear Marie,

Prayers for comfort as you wait for results. I am happy the kiddos are keeping you busy. Caring for my kids really helped me get through my txs a bit easier.

Hugs and Prayers,

Lexi

bcisnofun

beverlymom - I'm thinking about you and praying with you.  I know how hard it is to think of much else right now but glad the kids are keeping you busy.  Please keep us posted on your Tuesday appointment. 

abatellik

Marie,

I am so sorry to hear they think it is cancer. They were convinced mine wasn't and it was, so I suppose it could still go the other way for you, right? But if there is one thing I have learned through this is if the first doc tells you what you want to hear (and you REALLY want to go with that answer), it is still safest (although emotionally exhausting!) to have a second opinion.   

I don't want to scare you more, just give you an example of why a 2nd opinion is important:

when I finished breastfeeding my little girl, the right side went back to normal in a couple of months, but the left side never did. It still felt like it had milk in it. It wasn't red or hot or anything, just bigger than the other one. My u/s showed  an "area of concern", which looked like a lump although it was quite a bit inside the breast and could not be felt. But my nurse practicioner still thought it was a deep set infection. It turns out that I had IBC (most likely), which is treated more agressively than IDC or ILC. If it turns out that I just had IDC, it does not matter that they treated it like IBC but if it was IBC and they treated it like IDC, it could have caused it to spread.  Again, I do not tell you this to scare you but to give you the info to work with. 

Still praying that it isn't cancer though- until they give you the diagnosis, there is always that chance, no matter what the doc said, right?!! Hugs to you.

BeverlyMom

Thanks everyone. Just got a call that my pathology confirmed IBC. I'm absolutely reeling at this point, trying to process this all. SO unfair...my kids are so little & I'm so young...so much to take in.

But, for now, I'm going to learn as much as I can and be thankful I'm in a major medical community that has access to wonderful physicians. Was just really hoping this was just "regular" cancer.

Claudia413

As a 4-yr survivor of IBC, I want you to know there are plenty of us out here. We have an IBC support group online (www.ibcsupport.org) and even on Facebook (at least 3 different groups, maybe more). You do not have to go through this alone. By any chance, are you seeing Dr. Beth Overmoyer at Dana Farber? If not, you should get a second opinion from her. She's great. Several of my fellow IBC sisters go to her.  Claudia in FL

BeverlyMom

Thanks for the info, Claudia. I'm actually going through a practice that works w/ Dana Farber. My surgeon is Dr. Dixie Mills, who recently was the Medical director at the Dr. Susan Love Research Foundation, so feel that I'm in good hands. That said, I'm not opposed to a 2nd opinion. Meeting w/ the oncologist Tuesday and will go from there. I did get my pathology report, so now know I have IBC, IDC and DCIS. Tough road ahead of me...nervous about the staging next week and learning the results of the lymph node biopsy.

I broke the news to my four-year old daughter today...hardest thing I've ever done, but glad to be open and honest with her. She looked a bit concerned, asked a few questions and to see my "boo boo" (which with IBC is actually easy!) and then was asking to watch My Little Pony about 5 minutes later. She and her baby sister are my two biggest reasons to fight and kick this cancer's ass!!!

Claire_in_Seattle

Hi Beverly Mom,

I am so sorry that you got the Big C, but I know you are in excellent hands.  Make sure you think about yourself as well as your daughters. 

I have followed Dr Mills' career for about the past ten years, as she was the founder of the Women to Women program in Maine.  She did a series on Oprah on total women's health, which was fascinating.  So interesting that she is back to her roots as a surgeon.

I don't think you will get much better than Dana Farber as a place to be treated,  Their oncologists are world-renowned.  Which is why I said you are in "good hands".

The other thing I want to point out is that you are where I was exactly two years ago.  I came through this whole experience just fine, and am now fitter than ever.  It wasn't fun, but it wasn't the end of the world either.

Good luck.  I found I felt a lot better once I had a general treatment plan in place.  I was thrilled that I could do a lumpectomy.  Hopefully, your lymph nodes are just fine, but mine weren't , and I am just fine anyway.

As for Dixie Mills, I think she has made some very important contributions to overall women's healthcare.  Really addressing issues of peri-menopausal and menopausal women.  Major thrust is that your life as a woman isn't over just because your periods end.  (Trust me, it isn't.)  I would be interested to see how she applies this learning to breast cancer patients who have some of these same issues, and not the bio-identical hormone options.   A lot of work to be done is this area.

But that isn't your immediate concern, which is to come up with a game plan.  You will be there soon.  Good luck with everything, and thrilled you are moving forward.

One thing I would mention.  The more exercise you can do through this period, the easier things will be.  I was about two years ahead of the curve on that one.  But just so important.

Good luck.  Hoping a less invasive/less chemo path than the one I needed.  But as I said, I am fitter and faster cycling than ever. - Claire

mom2one

Just wanted to send you a prayer and a hug.

ibcmets

Marie,

Sorry to hear the news.  Like Claire--I'm also 2 years out.  You can check any of the threads that offer a lot of info on surgery, chemo & hormonal treatments here as well as the ibc thread.  ibcsupport.org also offers info on ibc alone.

I also did very well in treatment.  I had 8 months of chemo, Femara as an AI & zometa for bone mets.  I was unlucky to be diagnosed stage IV from the get go, but 2 years later no cancer is showing up on my scans and my bone mets show healed with no new lesions so far.  I also had a 3.5cm idc tumor as well as ibc.  You will get through this.  We are happy to help direct you to proper information and answer questions.

Hugs,

Terri

abatellik

Marie,

I experienced the same thing as Claire- having a treatment plan in place made me feel so much better- I know longer felt controlled by the not knowing. I felt in control because I knew what we were going to do and when.

Also, my lymph nodes were positive (but negative after chemo- YAH!) and I knew so little about cancer that I asked my mom if they could do anything with positive lymph nodes and she didn't know either (the nurse had given me the results over the phone but no details). I was so scared! But as soon as we met with the doc and she told us we would do chemo and it would be fine, I felt so much better. I'm telling you this because I know it scary to think about it being spread to the nodes and waiting to find out, but with IBC they will do chemo first either way followed by surgery, so it won't change much in terms of your treatment plan. Maybe this will help you be a little less scared to hear the results...

 I also know how sad and scary it is to tell your kids, but mine have actually dealt pretty well (they are 4 and a half and 2) and it sounds like yours are too! Jake has made a couple of heartbreaking comments wondering if mommy will be all better before school starts, but mostly this experience has taught him to be more compassionate and caring (which he was already pretty good at :-)), so I am thankful for that. We never used the "C" word with our kids, only telling them that the doctors decided Mommy needed medicine that might make me not feel so good. But everyone has to handle it their own way I know.

I'll keep praying for you, and please know that we've all been there and are here to help!