Dx official yesterday, Concerned with pathology comments

KimmyD78

Hi, ladies! 

Looks like I'm now a member of this club. I received the official call yesterday morning. 3.4 cm tumor, IDC, triple negative. I went for a follow up and referral at my primary late yesterday afternoon and received a copy of my pathology report that was sent over from the radiologist who reviewed my initial mammo & ultrasound and also did my core biopsy. I have a few questions, although I'm meeting with my new oncologist first thing in the morning, I'm more than a bit freaked out at some things that were mentioned on my path report. 

A quick bit about me and my symptoms so far:

- 36 years old, no kids, no family history of BC. 

- Lump at 9:30 on right breast, 8 cm from nipple - found about 2 months ago, but passed off as a cyst initially. 

- Nipple leaking serous yellow fluid from one duct. This is what prompted the doc visit (leaking has since stopped about 3 days after biopsy)

- Slight swelling of breast for past 1-2 months. The right one has always been bigger, but it's a tad bigger than normal. Bra is tighter on that breast and leaves marks

- Enlarged axilla nodes seen on ultrasound, but were not biopsied at time of core biopsy. They are not palpable, but area is sore from time to time. 

- Bruising from biopsy/tumor area - now a patch of pinkish/red at tumor/needle site (am 8 days post biopsy)

- Slight thickening of skin on breast, and under areola

I understand everything on my path report (been lurking here and googling for the last 2 weeks!). But the one comment that is giving me a amajor scare is that under Assessment/Recommendation it says " additionally, there is diffuse parenchymal edema and skin thickening in the right breast, which raises the possibility of inflammatory carcinoma, but could be secondary to right axillary lymphatic obstruction as well"

I have no peau d'orange, but the general slight swelling of my breast, and redness at the tumor/biopsy site are giving me major pause. There is no redness or pink area anywhere else in the breast. The biopsy area is putting out a bit of warmth, but the rest of the breast is not warm to the touch. I have no dimpling or defined ridging, but I do have what look like a few small stretch marks from the swelling near the biopsy site, but they are only visible when raising my arm.  

Like I mentioned, I have an appt with my new oncologist first thing in the morning. I was just hoping to get some opinions from others that might have had the same type of slight symptoms present and were NOT told it was IBC. My mind is in overdrive right now, and I went from "I can handle IDC," to "holy s***, it could be IBC".

Please talk to me and calm me down!  

edwards750

Kimmy - sorry can't help you with an interpretation but I can talk you off the ledge. Good thing - seeing your dr tomorrow. Sooner is always better. I have IDC Stage II, Grade 1. 3 1/2 years out from DX. Had lumpectomy followed by 33 RADS treatments. Currently taking Tamoxifen. There are a number of links on this website that can address or at least comment on your specific concerns. The women on this website have all been to hell and back with BC. The website does a good job of separating and providing different links for specific concerns. I will say def go prepared with questions for your Oncologist. Good luck. Keep us posted.

Diane

Alive4Five

Kimmy, I did 'not' have IBC, nor will I even begin to try to say I know about it. This is so frightening for you right now...that I am well aquainted with! Bless your heart! ((hugs)) to you! 

I can only ditto Diane's comment, and know that once you have a treatment plan in place, you can be more focused on getting through this... I am tearing up for you...wish I could hug you in person! You can get through this!!!

Hang in there! You will be in my thoughts and prayers! Please do let us know, we care!

fifthyear

Kimmy,

If possible, take something to sleep deep tonight. You see the onco tomorrow, have a clear head to go over with her/him your thoughts/fear/concerns. Until a punch biopsy takes place, the assumption and fear of IBC only brings anxiety into a situation that is already hard, being diagnosed with Breast Cancer. There is a quote somewhere on this BCO site (I can't recall from whom) that says "Don't go there til you get there".

Sending you positive thoughts and hugs.

Kicks

'holy schist'  - I'm IBC!  Never was told (or thought), it wasn't 'handleable'.  Aug will be 5 yrs since my DX and I am definately still 'here' and NED with a fantastic QOL.

My IBC was DXd from my FNBs, not a skin punch.  Until you see your Dr do not jump to conclusions.  IBC is rare - only between 1% and 5% of all DXd BC and a lot rarer to be in conjunction with another type.  It is possible though.  IF everyone who has breast skin issues were IBC, it would be the most common form of BC but it isn't.

SheChirple

Kimmy:  Hang in there.  I also do not have IBC.  Every one of our cancers are different.  However, I think the first few contacts are the same.  Diagnosis, head spinning, determination, organization, further diagnosis and understanding, finding out who are friends really are, research, asking questions, making decisions, feeling lost, feeling strong, feeling weak.  It's a roller coaster.  Hundreds/thousands of us get through it one day at a time.  Just hang in there.

This is a great group and resource for all your questions, and need or support.

KimmyD78

Just wanted to give a quick update. My onc appointment on Thursday turned into Onc, Surgeon, and pre-op appt all in one. I had my port implanted yesterday and am a little sore today, but otherwise fine. I hope this is a good sign of how all the other treatments and surgeries are going to go. 

MO says he would classify it as IBC, due to the slight skin involvement, and even though the redness appeared after the biopsy. The surgeon said he wasn't going to call it IBC, but rather IDC with skin involvement. It's really just semantics at this point. Either way, I'm being considered as Stage IIIB, and they're doing the same round of treatment they would since I'm a big fat Triple Neg, as if the IBC was part of it or not. 

I have chemo class on Monday, a PET scan on Tuesday, another appoint with more imaging on Wed (since all my images were outside the hospital network they want to do their own) and then I start dose dense chemo on Thursday. 4 x AC, followed by 4 x Taxol. After that, both docs are recommending MX and are highly suggestive of bilateral due to my young age and aggressive cancer. 

Thanks to you wonderful group of ladies and my research from lurking here the last 2-3 weeks, my onc said that I was the first person he's seen that had so much knowledge about what was going on and what was going to happen. He was impressed and asked where in the world did I learn about all these things? I'm now wondering just how much, if anything, I'll learn at chemo class that I don't already know. LOL. 

Trying to stay positive and know that I will get through this. I did have a mini breakdown when I was told that I wasn't going to be able to go the lumpectomy route. I did have blood drawn for BRACCA, so depending on that result my ovaries are up in the air, too. I think my exact words were, "I'm going to loose my hair, my boobs, and possibly my ovaries??? I'm going to be a boy!!!" I can laugh about that today, but that's when it all kind of hit me at once. I knew things were going to start moving fast, I just didn't know how fast! 

msphil

Hi sweetie, I agree to take something to sleep cause my doc precribe something for me, I just couldn,t get to sleep thoughts in my head, plus I was planning my wedding when diagnosed, at 42yrs old, no children,no history of breast cancer in family, I had pimples, around my nipple, and I did get some leaking, I was diagnosed with idc,0/3 nodes, L mast, stage2, chemo and rads and 5 yrs on tamoxifen. For inspiration, I am now a 20yr SURVIVOR(Praise GOD), so hang in there and i,m sending hugs your way.msphil 

bettysgirl

Kimmy- good for you!! BC.ORG is knowledge and it sure does help to understand what you are going through. I am glad your port insertion went well and that you have a good working plan in place. There is no doubt in my mind that you will kick some bc butt and sail through with flying colors!! Best wishes to you!