All Topics → Forum: IBC (Inflammatory Breast Cancer) → Topic: What are the chances this isn't IBC?
Posted on: Feb 21, 2012 08:46 PM, edited Feb 21, 2012 08:46 PM by SAR843
SAR843 wrote:
Hi everyone - I posted in another area on here (before I saw there was a specific IBC thread), so I hope it's okay to post in two different places.
Anyway, here's my story: Several weeks ago I noticed my bras were getting tighter just around the left breast. Two weeks ago I finally looked in the mirror and saw that the breast was larger than normal and there was this weird dimply area (looks kind of like the hair follicles are enlarged). Last Thurs. I felt a lump. It's very tiny though.
I don't have health insurance but didn't want to mess around with this, so I found a breast care center near me and saw a dr. on Fri. She said the area with the dimpling concerned her and I needed to have a mammo and ultrasound asap. Since I have no insurance I have to go somewhere else for the tests and they can't get me in until Mon 2/27. I'm going crazy waiting. I made the mistake of looking online and had a major meltdown last night. I'm terrified that this is IBC. But I've also read that these same symptoms can be signs of an infection. I'm hoping it's just stress, but I've been having some pains in my arm and my chest. Nothing terrible, but def new. I'm trying to stay positive but I'm just so scared. FYI I'm 30 years old.
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Mar 10, 2012 01:11 PM SAR843 wrote:
My surgeon said as soon as I see the oncologist (seeing one on Tues and one on Wed) and decide where I want to go for treatment, I'll have the port put in and start chemo asap.
Trust me, that's something that is rolling around in my head 24/7. I wish I could have started chemo as soon as I got the diagnosis. It's been almost 6 weeks since I first noticed symptoms, and I just want to get moving with the treatment.
Mar 10, 2012 06:27 PM, edited Mar 10, 2012 06:30 PM by Kicks
SAR
I'm wondering if you really know what IBC is when you say your Dr told you there were 2 types of IBC. Inflammatory Breast Cancer (IBC) has one type. There are 2 types of invasive (aka infiltrating) breast cancer with are Invasive Ductal Carcinoma (IDC) or Invasive Lobular Carcinoma (ILC). Though. The letter 'I' appears in the abbreviations for all 3 but the 'I' in IBC is not the same as the 'I' in IDC or ILC. It's not unusual for newbies to see IBC and hear invasive/inflitrating and think that because breast cancer is there that IBC refers to invasive breast chance when it doesn't. ER/PR and HER2 status does modify the TX but doesn't change the type.
When you see your Dr on Tuesday ask to be sure rather or not he/she is saying Inflammatory or Invasive. Big difference in prognosis and TX.
Mar 10, 2012 08:05 PM Faith316 wrote:
Kicks, I also wondered about SAR's statement about two types of IBC. That's nothing I've ever heard of either.
Mar 11, 2012 09:52 AM SAR843 wrote:
Sorry, I guess I confused everyone. My doctor said there are two types of breast cancer (not two types of IBC). One is IBC and the other is DCIS. But, of course, the IBC is what the dr. is most concerned about.
Mar 11, 2012 12:48 PM Faith316 wrote:
There are more than just IBC and DCIS. IDC, lobular, Paget's, etc.
Mar 11, 2012 02:41 PM Kicks wrote:
With you remembering your Dr saying DCIS and another type, he/she probably said IDC as the other as they are related - both ductal. IBC is not ductal. It wouldn't be hard to be told IDC but 'hear' IBC. 'D' and 'B' can sound similar especially when upset and not understanding the terminology. It could also be easy to not understand the difference between 'Inflammatory' and 'Invasive/Infiltrating'.
As you can see with the Sections here there are more than 2 types of breast cancer. There is DCIS, IDC, LCIS, ILC and IBC. There are other types that are rarer than IBC which is only between 1% and 5% of all BC.
Your biopsy gave you your ER/PR and HER2 status so your Dr has what type breast cancer you are dealing with. I don't know if a path. Can differentiate between DCIS and IDC as they are related but it will between IDC and IBC.
Mar 11, 2012 07:41 PM SAR843 wrote:
My doctor didn't say IBC, she actually said, in words, numerous times, that it's Inflammatory Breast Cancer. Then she said there was also DCIS. I'm saying IBC, b/c it's easier to use the abbreviation. This is a hard enough diagnosis to deal with as it is, and I wish more than anything that it was less aggressive type, and I kind of feel like you're all ganging up on me and jumping down my throat, and making me feel even worse. I'm sorry I misspoke in my earlier post, but I cleared it up. I don't know you're giving me a hard time.
Mar 11, 2012 08:06 PM Faith316 wrote:
I don't think people are trying to gang up on you and give you a hard time; just trying to clarify about the different types of breast cancer.
Mar 12, 2012 03:17 AM, edited Mar 12, 2012 03:35 AM by Bon
(((Sar))).
Listen ya'll, we're here to support each other....Sar has done her research, her doctor has confirmed her dx to be Inflammatory Breast Cancer/IBC...reading through this entire thread she has the symptoms as well. Sar needs us to help her through this and ya'll remember when you were first dx how scary it was. Sar is our IBC sister and we should surround her with our love. -Bonnie
The following is taken directly from the website ibcresearch.org www.ibcresearch.org/typical-sy... :
Inflammatory Breast Cancer is typically abbreviated as IBC. Non-inflammatory breast cancer may include in its diagnosis the terms "in situ breast cancer," "infiltrating breast cancer," or "invasive breast cancer" all of which may be abbreviated with "ibc," but those terms alone do not specify inflammatory breast cancer. To add to the possible confusion, the diagnosis may include more that one kind of breast cancer; for example "inflammatory breast cancer, invasive ductal carcinoma, and mucinous carcinoma" all in the same breast. So if a person you know has been described as having IBC or ibc, it may be well to ask what that is abbreviating, since it may not be "inflammatory breast cancer" and therefore the symptoms and other information presented here may not apply.
Mar 12, 2012 12:58 PM CuterWCurves wrote:
Bonnie you beat me to it!
Ok... For the sake of clarification. From what I know IBC is a clinical diagnosis which includes a specific set of symptoms including skin involvement which Sar has as Bonnie pointed out. That NEVER means there can't be DCIS as well in the same breast. I think the best term I've heard to describe this is a potpourie of BC. Typically it will be treated based on the most invasive and aggressive form of cancerr.
Do I have a diagnosis of IBC? No. Do I have a dianosis of BC at this time? No. Am I in the midst of uncertainty, attempting to get answers and being so far into the not knowing that I'm embracing hope that what I'm personally going through is anything but IBC or even another type of BC. I found the site looking for answers. I found the thread and felt the anguish, fear and frustration of someone in my age range struggling to find answers in a time of confusion.
She's just been hit between the eyes with a hard thing to process. Her Doctor recognized a problem right from the start. Is moving rapidly. She has been told SHE has 2 things going on. Inflammatory Breast Cancer, and DCIS. IBC because of skin involvement and the extent of the cancer led her Doctor to say it is a MINIMUM of stage 3. So far so good and what has been scanned has shown no distant locations though she has more tests pending... I'm darn sure that in your first 2 weeks there were thing you found overwhelming, and occasionally you may have worded things incorrectly. Heck Faith did that already in this very thread. If we're forgiving Chemo Brain then we darn well better be forgiving "completely overwhemled and lambasted with craptacular news brain"...
Quite frankly if we're not then I'll bow out of the board and continue the friendships I've estalished elsewhere. Not to mention the posts I've been able to contribute that provide information or even just humour. To be honest this is why I've not hung my own arse out in the wind and posted a thread until I have more answers.
Please forgive any typos... This was typed on my blackberry...
Shell
((((((Sar)))))) & ((((((Bon))))))
*passing bags of cookies, containers of hummus, and twix bars around*
Oh and for anyone thinking dining on the fun stuff is wrong... Can I just say life is too darn short to not allow for indulgence and comfort food in times like this. PERIOD!
Mar 12, 2012 01:14 PM scuttlers wrote:
Sar,
So sorry to hear of your diagnosis. I do not believe the other posters were meaning to be argumentative. There is a HUGE difference in treatment protocols for Inflammatory Breast Cancer vs. other BC's. Many doctors are not aware of IBC and the treatment sequencing. So I really believe the other posters were wanting to make sure your doctor was experienced and knowledgable.
As you know it is aggressive, it is scary!!!! It looks like you have a good grasp of what needs to be done. Port, chemo, and onward.
As a upper in this time of struggle for you - I am entering my fourth year now. The last two years I have been NED! (no evidence of disease). PM me anytime if you like. (I did end up going to MDA in Houston to the IBC Clinic, they introduced me to NED.)
Also, IBC is on the Compassionate approval list for SSDI (Social Security Disability Insurance). If you are working and have Short Term and/or Long Term Disability think of filing early so you can focus ALL energies on getting a great quality of life. Also Accelerated Life Insurance benefits can make life much easier. PM me if you need more information.
((((SARS)))) hugs all around you.
Mar 12, 2012 01:20 PM scuttlers wrote:
Sar,
Just went back and reread your posts. Re: no insurance. Sucks! Ok, so file on line with Social Security. If you have worked in the past and have enough quarters, you should be a fast approval for SSDI and then Medicare (after waiting periods). Hopefully, they can get you on SSI and Medicaid quickly to give you some peace of mind. Social workers, finance office at the cancer centers may have some options for help. The sooner you file, the sooner you should get approval.
Hope this helps a little bit.
Mar 12, 2012 04:56 PM, edited Mar 12, 2012 05:25 PM by Faith316
I for sure was not trying to be criticial/argumentative/unforgiving/etc. I was merely trying to help clarify a few things.
Good luck to you, SAR! I hope your doctors will soon be able to get you on a path to good health.
I was only trying to help in this thread, but for some reason, my words were seen as something other than what I intended them to be. So, I feel it is best if I back out of this thread. This thread needs to be only about helping you as you face this journey so let's get it back to that and that alone.
Best wishes. You're gonna do fine!