"Mastitis" for 10 wks. - u/s scheduled for tomorrow

thegoodfight

abatellik,

You certainly gave me a lot to think about even though my "story" is much different.  I was diagnosed and treated for IDC three years ago.  One year ago, July 2010 out of nowhere I got a case of mastitis.   Oh did I mention I am 66 years old and haven't breast fed in over 30 years.   Back to the story, I was treated with two weeks of antibiotics and responded very well.  Six months later in January 2011 I again woke up with an identical sympton case of mastitis.  Got antibiotics again, cleared again.   Well here we are six months later once again, and I have mastitis and am on antibiotics.   Drs. say not cancer since I responded to the meds.  I believed that until reading your post.  They think my lymphatic system and breast tissue were compromised from the radiation.

Logic tells me that if it were IBC and it symptoms first appeared a year ago, I would have gotten worse by now.   But it has once again stirred up some fear and reminded me that life will never be the same as pre BC.

I see my onc in a couple of weeks, so I will see what he has to add.....................Caren

HollyinMich

Farmgirl, so happy to hear that you are trying for a second opinion.  Yes, the odds are in your favor and hopefully it will be nothing but I would certainly want to figure out what's going on with my body also!  Either way it's best to get down to the bottom of things.  Good luck!

Leah_S

Thegoodfight, if it happens again you might ask to see if the infection can be sampled and checked. After lymph node surgery we're all vulnerable to LE and cellulitis and this might be what's happening to you.

All the best.

Leah

thegoodfight

Thanks Leah, I will mention that to the doctors at my followup visit.

chester2010

What is Inflammatory Breast Cancer?hcp.obgyn.net

The Independent (blog)

Here's a good explanation of IBC on this web site.

chester2010

Whoops. Looks like that didnt work.  The web site is hcp.obgyn.net

ashley279

Yes you should get a second opinion. My friend was diagnosed

With inflammatory breast cAncer April 2011. I knew the symptoms because

My mom had it 14 years ago. My friends breast was pinkish very

Tender and was about a size bigger. She well had burning sensation

But not really any orange peel look to the skin except a little

Pitted my the nipple. Do what ever you can to do biopsy. My Friends

Diagonised mammogram it showed nothing and an ultrasound which

Showed a little thickening. My friends surgeon did a biopsy right in office

Hopefully it won't be ibc .where do you live? You can send me a private

Post to answer that.

Claudia413

Farmgirl24,

By now I hope you've gotten an appointment with a breast surgeon who knows about IBC. I really think you should print out information about IBC that is on the Inflammatory Breast Cancer Foundation website (www.eraseibc.com).

Back in 2007 before I got my IBC diagnosis, my daughter-in-law and I both researched my symptom (yes, symptom singular). I had a slight discoloration of my skin on my right breast...kind of blotchiness is how I explained it. We both came up with the same diagnosis: either mastitis or IBC. Since I was 65 at the time and had never nursed either of my children, we decided I had IBC. After taking three 10-day rounds of antibiotics, insisted upon by my primary care doctor, she finally gave in to my pleading and ordered a "diagnostic" mammo and ultrasound. The technicians who did the testing were aware that they were to look for the sheeting or nesting of tumors in IBC, not a solid lump. (You might want to mention that to them) These reports are what finally got me the biopsies I needed. My surgeon did 3 different types of biopsies, in different parts of my breast. A week later I had my official diagnosis of IBC. I knew something was wrong and would not quit until they all believed me. It's really hard when you only have one of the symptoms, like I did. I was even told at one point that I didn't have enough of the symptoms to have IBC. Oh, and I can't be pregnant because I'm not nauseous??? You don't have to have all the symptoms. There are a few of us who have only had 1 or 2. Of course, it took us a little longer to get our diagnosis, but we finally got it. Hang in there and keep in touch.

thegoodfight

Okay, here's my update.   As I wrote before I have had three bouts of "mastitis" or "lymphangitis" in the last year, every 6 mos.  Now I have gotten another bout just a month out and only two weeks after taking two weeks of antibiotics.  Each of the three previous bouts did clear with an antibiotic and then nothing again for 6 months.  This time the symptoms were not exactly the same and it did not completely clear with an antibiotic, although they did improve.

So tomorrow I am having an incisional biopsy.  We are skipping mammos, mris, needle biopsy, etc. and going in there to see what is going on.  Surgeon still says he doesn't think cancer, but can't be sure.  What he is really planning on doing is getting enough tissue and skin for pathology and to grow cultures to hopefully find out what kind of bacteria is causing the infection, hoping it is an infection.   I did have a mrsa test a month ago and that was neg.   Every doctor involved, 2 med oncs, my rad onc, surgeon and pc all have said it wouldn't get better with antibiotics if it was cancer.   But they are all stumped what is causing it.

Now I am a little scared, no a lot scared that it is IBC, which I have been asking about since the beginning.  I have read too many posts that say IBC is often times misdiagnosed as mastitis.  Hopefully tomorrow it will be definitive, and if it is IBC I just hope we have not wasted too much time.  Ugh, this cancer thing really sucks.  Just when you are really getting on with your life, it says, hi.............remember me?

I will let you know what we find............................Caren

Claudia413

Caren,

You're in my thoughts and prayers. 

farmgirl24

Just wanted to come back and update you all here. I have not been back to see any more doctors, no further tests, etc. The redness is mostly gone, though the one side is still a bit larger than the other and with a small skin ridge just under the areola. I still don't have the money to try and pursue this any further unless it becomes more aggressive. I hate saying that, but that's where it is right now. I just got the last bills paid off!! Thanks again for your support, I have been so blessed by hearing your thoughts, knowing you were holding me up in prayer, and being able to hold you all up in my prayers as well.

HerSister

farmgirl - PLEASE look into the Breast and Cervical Cancer Treatment Program (BCCTP) in your state.  It's not only state funded, it's federally funded.  And, I know I've seen it listed in other states when I google the keywords 'BCCTP'.  There is another program that works WITH BCCTP that is used to diagnose, so don't let the treatment part of the name throw you off.  My state's website says you can still qualify if you have insurance.  It might be the same in your state.

This is how my sister was diagnosed (she couldn't afford medical insurance, so she had none).  The diagnosis was covered under a program in CA called "Every Woman Counts", then after diagnosis, treatment was covered under the BCCTP program.

Hope you get some answeres soon.  Please keep us posted.

Edited - I think I saw a link in a sticky on the forum somewhere with info on this program.  I can't find it right now, sorry!

TooManyCocktails

Financial assistance for cancer patients:

https://cissecure.nci.nih.gov/factsheet/FactSheetSearch8_3.aspx

They're are several places listed.  I haven't tried any of them *yet*; but it's nice to know that they are places out there.  Although, I don't know what all you have to go through to get approved.

(((hugs)))

I hope this helps.

thegoodfight

Claudia and all the others who have been so supportive.   I went for a second opinion today at Moffitt CC and it is definitely NOT  ibc.  woo hoo!!   I am going back soon to see infectious disease so they can try to find out the bacteria causing my woes.   I will post when I know more.

Caren