New Here, Please Help - IBC

pokadot

Hello. I am 35 and an ovarian cancer survivor. Breast cancer runs rampant within my family (17 women within my mother's family has had it - my mom, all of my female cousins, yes, all of them as in 100% decendents from my aunts and uncles within my mom's family).

At least one of these cases has been IBC.

I am having the following symptoms. My left breast is painful. It feels like the "let down" reflex like when I breastfed...a burning sensation, and an all-around ache. My left breast is larger than my right - a development in the past month or so. I have had a yellow discharge from the nipple. I also have a part of my skin on my breast, only about the size of a mosquito bite, that is scaly or "rough" looking.

I have looked at sites regarding IBC that list the symptoms - and I realize that these symptoms could be those of IBC. However, I went to see my oncologist about this....she dismissed the idea of IBC. Sent me on my way for a mammo and ultrasound - of which are "clear". She said it wasn't IBC because nothing looks inflamed, no redness.

My question to those of you that have been diagnosed with IBC...what does it look like and feel like in the beginning stages...

To me, these symptoms are too weird not to be taken seriously, especially with my own cancer history and my famililial history. My oncologist said to come back in 3 months and we'll have another ultrasound. What changes should I look for to go back earlier...should I press her further? Maybe I'm making something out of nothing, but I just feel more concerned than my oncologist is...

What do you think? Any post would be very much appreciated. I can't stop thinking about this.

rosied51

I am going thru the same thing had mam & sonogram and MRI and they came back okay , mine too is red, itchy and had purplish streaks.I have been trying to find pics of early stages of IBC as well the Dr's think it has to be red & inflammed to be IBC.

Anonymous

You should press on to find out what is going on.....your family history alone is enough to make most oncologist or really any other doctor I would think, nervous enough to run every test in the book!!!!

I think if I were you I would request a referral from your current doctors office for a second opinion to an actual breast clinic where they are more familiar with breast issues.

But not matter what you decide you really should press your doctors to find out for sure what is going on...

Hugs

Jule

Anonymous

Rosie

I would recommend that you also press on to find out or get a referral to a breast clinic...

My belief is that if your not comfortable with what the doctors are telling you then find a doc that will run tests until they can tell you FOR CERTAIN what is going on...

Hugs

Jule

dorfar

Pokadot,

You should definitely seek another opinion or see an oncologist that has treated IBC. I'm 34 and was diagnosed in April. I found a lump under my arm and at that time my breast was pretty much normal maybe a little red. My gyno said to watch the lump for a month. After a month when it did not go away she referred me to a surgeon that biopsied it. During that month my breast started to change. It got bigger and it was itchy as well as more redness, almost a purple redness. The biopsy came back and the pathology said it was IBC, I had a mmamo & ultrasound immediately, they showed nothing.  It was the MRI and PET scan that showed it. My point is that I had very few symptoms and it had already spread to my lymph nodes(lump under my arm) Press on and request an MRI or a PET.

Stay strong and press on!

Dorothy

Caseysmom

Pokadot:

Mine when it first started looked like somekind of a bug bite I had no other symptomes of IBC and my mammogram came back negative.  However I did have this mass on the outside of my breast.  I agree with Dorothy about getting a second opinion. 

Good Luck

Laura 

DianeE

My IBC started with an elarged breast that eventually became red (within 1 week).  I did also have the "let down" feeling that you speak of.  Push for a appointment with a breast specialist.  I would consider a new onc as well, especially given your overwhelming family history.  Good luck to you as you go through the scary times of uncertainty,  We are all here for you day or night.

Diane

pokadot

Thanks so much for all of the replies...

Another question...should I push for an MRI? It seems that MRI is somewhat standard for high risk women - which I most definately fall into that category. I would think I could talk my onc into that...would it do any good? I don't feel any masses. Otherwise I suppose if I develop the redness I will also contact her and make another appointment...if it's the redness she's looking for. My thinking is that she's only seen "extreme" cases of IBC - in a textbook or somewhere, she's relatively young and normally very informed...my treatment of OVCA with her was handled very well...(even though it wasn't detected until stage IIIC (no D), but I didn't see her until it was finally diagnosed after a hysterectomy for what they thought was endometriosis....I was too "young" to have cancer you know...)

So I've been through all of this before - as in knowing something is definately wrong but not getting anyone to listen. It sometimes makes me wonder if it's my own mind - my psyche having a fear of battling another cancer that I'm going off on a few symptoms and immediately expecting the worst? I hate feeling like a hypochondriac. (One of my docs prior to my cancer dx said the symptoms I had were "all in my head" and that I was a new mother looking for attention...)

It's like I'm told by the clinic to be sure and report any odd symptoms to my oncologist, but then when I go there I feel like they think I'm wasting their time because they could spending their time better treating the actual cancer patients...

Thanks for letting me vent. Even my dh tires of hearing about this, even though he's very supportive.

rosied51

Pokadot,

My Dr's are in the same line I think if they had any dealings with IBC it had to be in later stages as they all seem to think your breast has to be beet red in order for it to be IBC.I had my hysterectomy when I was 23 yrs old due to an enlarged cyst they say it was the size of a basketball or 9 m pregnancy it overgrew everything. I am getting nowheres with my dr's except now my primary is starting to see the light as she is convinced it is IBC but my tests results show normal. I have dense breast tissue and that might be hiding something not sure. Seeing a breast wellness Dr Jan 3rd that is the fastest I can get in there. It is aggravating I know but don't let them think it is all in your head because you know your body the best. Insist and keep insisting on doing every test possible.

jjpope

Hi, this is my first time here. Pokadot, I have IBC and I strongly encourage you to seek out another doctor. I am shocked to learn how little the medical community knows about IBC. A lot of doctors don't know how to recognize it but it's not something to delay!!!!!!!!!! I had a hot spot on my right breast, the skin was red. I went to my primary care physician (thank God it's female) and she sent my immediatley to get a mammogram. Good news, I have finished chemo (i worked the whole time) had a masectomy and finished radaition a few weeks ago and feel good. This is your health and find the right doctors like I did.  Keep strong.

rosied51

JJpope, could you explain what you went thru as some of use seem to have Dr's that really do not know what they are looking for, Symtoms vary in each of us. I am having my biospy this coming Tues , it will be done by my primary she is the one who is convinced it si IBC even though test come back okay.In my case I have sever burning at the top of my breast as well as stabbing pains in armpit, and now I have swollen painful lymph node  in neck /jawline area on right side everything is on my right side.

Shavoners

I would get a second opinion. Mine started with a small scaly red mark on my breast, and I little bit of swelling. It never got completely red. But that red mark spread to a good portion of my breast over a couple of weeks, my breast became more and more enlarged. The last thing that did it for me was when my nipple inverted. Get a second opinion girl!

hopefulB

I was dianosed with IBC in June 2008 for my left breast.  In October 2008, I had breast MRI and PET scan to monitor the response - both tests came negative for the right breast but I knew something was going on there.  My surgeon, GOD bless her, decided to go for a biopsy anyway and it came up positive.  Trust your instincts since these tests are not very accurate for IBC.  Don't wait 3 months, that's too long a wait for IBC.  Get a second oppinion from a breast cancer specialist.

rosied51

My other 2 appt are this coming week and I had better get a conclusive answer. Now my breast is starting to look like the very last pic on IBC site very crusty at the top at first It looks like I dropped glue on it and let it dry.. My breast is also becoming larger can't say swolllen but larger in fact when my arm is at my side it hurts feels like I am resting on a hard surface. The last few days the breast has become more significant in pain. well the armpit actuallly feels like you are digging something out of it.I was really hoping for things to change but now I am becoming more realistic but now need conclusive diagnosis I will insist on a biospy, my primary did a needle aspiration.

runalot08

Pokadot,

Have you seen anyone else yet?  I think the MRI is a good run for you to try.  Your are young and most likely have dense breasts.  I have heard the MRI is best for that.  I am young also 33 and have been having my share of problems too.  I have gone through 4 docs to find one who does not make me feel like it is all in my head and that I am not too young.  She acknowledges my family and personal history.  You need to find someone you feel is doing the best they can for you.  I have not ever been diagnosed but have had 3 biopsies one with a Birads of 4.  All came back normal.  My family history is bad...I do not think as bad as yours...I have never seen that before!  Please do not take that as rude I thought I had a lot.  I think you should as others said push for more and get a doc you are comfortable with (from all the posts on this site I think that is the most important thing everyone mentions how they feel so much better knowing that someone is in their corner).  Let us know how you are doing.

Rosie sounds like you need to get biopsies of more than one place.  Maybe they can do your actual breast where you feel it is the worst.  Then maybe they can also do a node or two.  Sounds like that is what is swollen under your arm.  So sorry this is getting worse for you.  I do like your new picture up...must be your Hubby with you?

My MRI results were not in yesterday...hopefully Monday

Vickie

rosied51

It better be my hubby or I am in deep trouble LOL yes we were in Hilton Head last yr.I checked tonite and my whole upper shelf is red all the way to my neck area not deep red but when I press my fingers on it the under layer shows white so it is red like as if I had been in the sun only I am Native american so i don't burn LOL

pokadot

Hi Runalot and Rosie,

Just saying hi - I haven't had anything looked into any further, yet. My symptoms have actually gotten better ( I have been taking an antibiotic for a sinus infection and wonder if perhaps I've had some sort of infection all along...). But I am going to press for an MRI when I see my oncologist for my ovarian cancer checkup in February. I still have a scaly little spot, but it's still the same size, still not red, and the discharge has stopped. I still have one breast larger than the other though. I would think that alone sould be justification for an MRI to make sure I'm not dealing with something more serious.  I did have what I thought was a swollen node, but my onc said it was just how my arm is, near the tendon. Maybe I've been freaking out over nothing afterall....here's hoping!!

Oh, and I looked into some more of my geneology...it isn't 100% of bc diagnosis for my cousins. There is one (female) cousin that has not had it. And my 2 sisters have not had it either...but yes, I agree, it's a history that nobody would want.... 

Runalot - I believe that's Rosie and her husband....I haven't figured out how to get a pic up yet...one of these days I"ll take the time to load one up maybe.

rosied51

Yes, that is my husband, he is my rock.

rosied51

Pokadot, do you have nay pics on your computer of yourself , then just go to your profile and there is a area there.

runalot08

Pokadot,

Sounds like a good idea to still have the MRI you are high risk.  Do not worry but sometimes the prob/symptoms come back in about 3-4 weeks after antibiotics.  For some they seem to help initially but really masked the problems.  Don't get scared just keep watch.  I think as long as you stick with it and keep watch you are doing the right thing.  You could take notes as to when it started.  When any symptom went away or came back that way you have a running history.

Have most of the BC cancers in your family been aggressive or mild?  For me my mom had DCIS and just radiation at 41.  My paternal Aunt had ILC chemo, mast, chemo, radiation.  Hers was very aggressive and she had her first mammo that found it for her 40th birthday.  Then of course the great aunts times 3 all three have died (two were aggressive. One was my great Aunt Nina she had a Mast in the 40's? and died later at 80 something.)  Then two Great Grandmas one with BC one with BC and Ovarian.  It is interesting that both of my grandmothers sisters all of them had cancer but my grandmas themselves have not...they are both still alive.  Then their daughters have had it my mom and aunt.  I hope it does not skip me and go to my daughter...I worry about that.  I would rather have it and deal with it then her get it.

Let us know how it all goes we will think about you.  I think since my MRI came back good I will head back to the high risk/ not diagnosed or worried posts.  I will keep up here as I am not giving up just taking a breather.

Vickie