IBC questions and concerns....I am very frustrated
Hi all, newbie here.
I'm frustrated and scared. I'll try to keep this short.
10 months ago I noticed a dimple in the lower outer quandrant of my left breast.
Mammo and U/S turned up nothing.
About 2 months ago I noticed the dimple has become larger and slightly deeper. I'm also having lots of pain in my breast. It burns, aches, stabbing pains, prickly pains from within my breast. The whole area under my arm is very tender and feels swollen but there are no swollen nodes.
My doc sends me for a diagnostic Mammo and U/S again, and again it turned up nothing. Only they wouldn't do the U/S on my whole breast, they would only do it on the parts I said hurt. They especially didn't look at my lymph nodes.
I went back to my doc and asked to see a specialist.
In the meantime over the past 2-3 weeks I have noticed the pain has gotten worse, almost a constant ache and more stabbing, burning, prickly pains, even more tenderness under my arm, my breast has become a little larger than the other to the point that the cup of my bra is tight. I keep having a feeling of let down like I am nursing a child...my youngest is 13. I have a slight pink area where the dimple is, my nipple pulls in when I raise my arms. (I should mention the only time the dimple is there is when I raise my arms). The veins in my chest are more prominent and I have chest wall aches from time to time. My arm has also begun to ache on the under side half way down to my elbow. My breast has become more itcy but not in just one spot and not to the point of misery, just itchy more times a day.
I went to the specialist yesterday. He looked at me and said he didn't think it was anything and to take evening primrose oil for the pain. I asked about IBC and he immediately said I didn't have it because I don't have the typical swollen, red, hot breast. I insisted something is wrong and I want answers. He finally agreed to send me for an MRI.
I just have questions that I can't seem to get answers from out of the medical community.
Have any of you been diagnosed with IBC when you didn't have the "classic" signs of swollen, red, hot, super itchy breast?
Should I insist on a biopsy if the MRI turns up nothing? I have a feeling it won't turn up anything.
I don't know how far to take this until I am satisifed I don't have breast cancer. All these things are happening for a reason and it's not cyclic. I had a hysterectomy 5 years ago and on HRT. At what point would you feel comfortable that nothing is wrong?
Thank you for any input you may have.
Mel
Comments
-
Hi Mel,
First, I am sorry that you are going through this scare. I really think the best bet would be for a skin biopsy be done to rule out any cancer. It is a minor procedure and should give the results within a day or two. More than likely you are not dealing w/ IBC, but why take the chance. I have read so many different ways that IBC presents itself.
I think it's great that you are being proactive. It could literally save your life!
Please let us know how your appt goes. I am saying a prayer that there is NO cancer!
Hugs,
Lexi
-
Mel - I agree w/Lexi. Do whatever it takes to give yourself peace of mind ... the sooner the better, regardless of outcome. You're the best judge of when you reach that point. In the meantime, be gentle to yourself.
-
An MRI is a great first step. It shows remarkable detail of one's breast and may point out your problem
If it is negative, it may be advisable to find any surgeon willing to biopsy the area of dimpling and redness of the breast.
Good for you for being so pro-active here!
All the best to you,
Tender -
you better get a biopsy NOW. I was diagnosed with IBC this past July. Seriously, get the biopsy. They didnt biopsy my lump (which also was characteristic of IBC) for months...that delay couldve cost me my life...lets just hope it hasnt.
-
PLEASE, absolutely insist on a MRI or BIOPSY!!!!!
IBS doesnt reguarly show up on mamo or ultrasound.
-
Make that a core needle biopsy (punch) biopsy.
Fine needle doesn't cut it. MRI only showed some
skin thickening for me. Radiologist who knew zip
about IBC told my PC to put me on clinical observation
since I was suffering from poor circulation!!
You gotta be proactive in asking for the most thorough test available.
-
Thank you so much for your advice. I am scheduled for the MRI first thing Tuesday, 30th, morning. I will go from there based on the results.
Have any of you been diagnosed with IBC without having the swelling, hot, red classic symptoms? I've read so much information about IBC and have found several stories of women diagnosed without having the classic symptoms but I am wondering how often that happens.
-
Yea. I feel better and so should you because it sounds like your on the right track and thats a very good thing.
Crossing my fingers and toes.
Kim
-
I did not have all the "classic" symptoms and they never found it with the punch biopsy. Luckily I had an underlying lump so the treated me as though it was IBC. By the time I was done with 6 doses of DD the redness was totally gone and the pain disappeard after 2-3 doses.
Make sure you can sleep at night not worrying...then you know you have all the answers you need for peace of mind.
Tina
dx IBC 8-05 after going to 4 doctors.
ALso had Idc and extensive dcis.
I am just finishing up Herceptin...nov 21 is my last treatment!
-
My only symptom was a fine pink sunburn rash on my breast like my breast had been "dipped" in something... the pinkness ended at a line around my breast, about 2 inches up from the nipple.. I am a "c" cup...my nipple had thickened, but the thickening was pretty subtle... its important to get your questions answered. Unfortunately, IBC is not always obvious
-
I think you are def. on the right track. My breast had a dimple in it also and my nipple had started to invert about 3 weeks prior to me finding a lump. I did not have any pain.... I had 5cm tumor that had already spread to my nodes and had 8 liver mets. I had also had a hysto. and was on HRT. I think you owe it to yourself to have it biopsied. The year before this was found, I had a spot in my mamogram in the opposite breast and they said they thought it was just calcification and lets just watch it and redo it again in 6 months... I said absoloutely not.... I had it biopsied and it was ok... but you never know! Just because I found a lump in my breast didn't mean it was cancer... They had to biopsy it first... And you are entitled to a mamogram of the entire breast..etc... I hope all is well.
Stacey H.
-
Tina, thank you for sharing. It is very scary to think about all the IBC that goes undiagnosed. I hope you're doing well.
Patty, the only sign was a pink area! I have pink areas on both breasts that are not normal for me. Thank you so much for sharing and your support. I see you have a anniversary tomorrow. I hope all is well with you.
Stacey, good for you for standing up and not taking a "wait and see" approach with your other lump. I know the dimple I have is not normal but I don't think it has anything to do with IBC because it's been there for at least 10 months. I can't find anything on IBC that would indicate it can be on the lowest end of agressiveness that my breast wouldn't be ready to bust by now if IBC started 10 months ago. I would love to hear if anybody knows different. I appreciate your sharing with me and encouragement.
I went for the MRI this morning. I guess it will be a couple days before I know anything. I noticed last night that I have a small bug bite looking spot now. It was still there this morning. It's not raised up like a bite or itchy so I'll be keeping an eye on that closely. I also noticed the pink areas have become more blotchy looking and they felt warm to the touch this morning along with what looked like a small bruise/darkened area on my nipple. I'm a wreck right now
I'll let you know when I know more.
Mel
-
GAPeaches,
I've been following your thread and just wanted to drop by and say I'm so sorry for what you're going through. You've had great friends here address your concerns, which is the wonder of this board.
I'll keep you close in my thoughts, and wish for b9 results of your work-up.
All the best to you,
Tender -
Mel,
Thinking of you. Prayers that this ISN'T cancer.
Hugs,
Lexi
-
Well the doctors office called with the results of the MRI. Nothing! A big fat nothing. I am so damned frustrated right now. The things going on with my breast are real and there are no answers as to why. While I had a feeling it wouldn't show anything, which is a good thing, it just makes me sick. The doctor said to follow up with my yearly mammograms. That was it..........dismissed as if the bell rang and it was time to change classes.
This afternoon I just feel like leaving it alone. Wait and see what happens in a few weeks. If my symptoms stay the same and nothing new or worse then apparently it's nothing to worry about. I know, I know.....this is not a good attitude to have. I'm sure you guys know how I feel. One day you just have a gut feeling that is something is wrong and the next day you feel foolish to be persistent about it. Right now I'm at the "one minute to the next" place, one minute I know and the next minute I'm second guessing myself.
If it were you would you find a new doctor and ask for biopsies?
-
Mel:
I would definitely get a new doc and ask for a biopsy. Also the first question that I would ask the doc is "have you ever heard of IBC" When I read about IBC I was shock to find out that many doc may go there whole career and never see a patient with IBC.
I too did not have the classical signs of IBC my started out looking like a small bug bite. Then a month later I had a lump on the outside of my breast that looked like dermatitis. The surgeon that I saw told me that cancer does not grow that fast but he also told he would not know for sure until he did a biopsy. I sure am glade that I had that biopsy done.
I will keep you in my prays and keep my fingers crossed that this is not IBC.
Big Hugs from Michigan
Laura
-
Biopsies are always good. Ask for a biopsy of the area where you have the skin dimpling and slight redness.
Dimpling of the breast skin suggests skin pulling inward from tethering by something underneath the skin. Breast cancer can do this. This is not normal and needs a full explanation regardless of the negative radiologic studies.
Skin redness may be caused by nonlactaional mastitis as seen in Inflammatory carcinoma and periductal mastitis. Periductal mastitis is often due to duct ectasia and colonization of inspissated material, and it can lead to chronic abscess formation hence redness. Inflammatory carcinoma causes redness and breast thickening by lymphatic obstruction. Diagnosis requires skin biopsy.
If your current breast specialist will not do a biopsy, why don't you seek a second opinion from a breast surgeon.
No need to stay in breast neverland. Radiologic studies are imperfect. You are being very proactive in seeking a diagnosis to your observations. You're on the right track....
All the best to you,
Tender -
Hi All, I am still not diagnosed, but wanted your input as to what the ocono. proposes sounds okay. I wrote on another thread about my sore, red, swollen breast. Took my week of antibiotics. Still red. The mammogram, ultrasound, MRI and skin biopsy showed nothing but inflamation. The Dr. thinks it is radiation recall from my previous bout with DCIS (However all web sites list radiation recall in association with some form of chemo. which I did not have). So the punch biopsy was negative, and here I sit with a somewhat swollen and still definitely pink breast with some of the orange peel skin. Nothing hurts, no nodes swollen or anything.
Currently he said he does not know the cause and to wait up to a month to see if it is some type of allergic response or radiation recall that will clear up. If it has not cleared up within a month, he wants to repeat all of the tests. Should I be more proactive, or does his proposal sound reasonable?
-
Hi All, I am still not diagnosed, but wanted your input as to what the ocono. proposes sounds okay. I wrote on another thread about my sore, red, swollen breast. Took my week of antibiotics. Still red. The mammogram, ultrasound, MRI and skin biopsy showed nothing but inflamation. The Dr. thinks it is radiation recall from my previous bout with DCIS (However all web sites list radiation recall in association with some form of chemo. which I did not have). So the punch biopsy was negative, and here I sit with a somewhat swollen and still definitely pink breast with some of the orange peel skin. Nothing hurts, no nodes swollen or anything.
Currently he said he does not know the cause and to wait up to a month to see if it is some type of allergic response or radiation recall that will clear up. If it has not cleared up within a month, he wants to repeat all of the tests. Should I be more proactive, or does his proposal sound reasonable?
-
Good Morning,
You've done the indicated tests, including one biopsy. It's the biopsy you may wish to switch gears on, so to speak. How about you get it from the hospital pathology, and take it to the Loyola University Medical Center for a second pathology opinion. You say you're told it indicates "inflammation".A second pathologists trained in IBC would be where I would go, as well as inquire if any special stains or immunoflorescent studies may help tease out what's causing the inflammation.
While you are there, at the University, you might find out who is a specialist breast surgeon in IBC, not to say you have this, but to receive a second opinion from him or her. A red breast two weeks after antibiotics with history of DCIS, imo, needs a definitive diagnosis period. No wait and see, especially since you have documented skin changes too. Radiation recall can accompany implant surgery: did you recently have that done?
You're right to push forward...you're on the right track.. A hospital with a greater number of physicians dealing with breast cancer and hard to diagnosis situations is advisable for a second opinion.
Please post during your journey, motheroffoursons. You in a anxiety-provoking situation, have done a lot already, and we understand the strain you're under.
Hope this helps you,
Tender -
Hello,
I just found your post after searching on "breast cancer" and "let down" and nursing. I am experiencing the "let down" feeling suddenly. I have a 1 year old, but could only nurse her for 1 month and just with my right breast. Had DCIS and Invasive Ductal in my left, so I had a modified radical mastectomy at 6 months pregnant, then further excision on Feb 1 '07, since the doc only got a 2mm margin the first time. I was diagnosed Stage I, thankfully. Got to go full term with my baby and then allowed one month to nurse with the remaining breast. (Can you say, "OW!") In mid December '06, I was checked and considered clear after drying-up for a month. Just in case, I did four rounds of Abraxane - I'm Triple-Negative - which was done April 28.
Since then, a 2.7cm lump was found in the right. A biopsy showed it to be benign. Now there is a definite thickening right below my nipple and I'm having the let-down feeling. I'm right in the middle of planning my reconstruction, in which I'm having the right removed, too. However, I'm getting worried about it. One, good grief, I just don't want to have more cancer. Two, this could interfere with my reconstruction, which may not happen until next April, darn it!
I really don't want to go back to the doc yet on this. Every since this whole "cancer thing," I feel like a major hypochondriac. If I stub my toe, I feel that the pain must be so bad because there's cancer in it! Ok. I'm not quite that bad. But I feel silly bothering the doc for every little thing. Which I know I need to get over.Anyway...keep us posted. I'm praying for good results for you - in a selfish manner, too! If it's good for you, hopefully it's ok with me, too!
And DO be sure to bother your doctor for every "silly" thing. It's a great way to stay alive! (Hey, I just thought of something! If I annoy my doc enough, if might be a nice "revenge" for having to wait in the reception area so long for my appointments...he he he. Just kidding.) BTW, I found another post on another site about the let-down and pain (I'm not having any pain, though): http://www.medhelp.org/posts/show/1533.
Again, good luck.
Jen Q.
-
GAPeaches - Biopsy!!!
Hey if it isnt cancer that WHAT IS IT??? Docs drive me insane!! You obviously have something going on and all they can say is follow up with reg mammo's? PLEASE
-
GAPeaches:
I agree with Kim please get a biopsy.
Laura
-
Good afternoon, I'm sorry I've been MIA for a few days but I had to separate myself from the internet for a while.
I know everyone says to get a biopsy but I just don't know. I can't find any information of the odds of a MRI being wrong to diagnose IBC. If anyone knows different or had personal experience with a false MRI please tell me. So far none of my symptoms have gotten worse and no new one's either.....praise God. I think I'm going to keep watch very closely and if anything changes I'll be parked in a specialists office toot sweet. (that's southern slang for fast). I am fortunate to have great insurance in that I won't need a referral to a specialist. (a different one).
You guys, I can't thank you enough for your support and lending an ear. I have cyber stalked just about everybody here to get to know you better and how you came about being on this board. I have followed and will continue to follow each of you to see how you're doing. I might even chime in every now and then if you don't mind. You ladies (men too if you're lurking) have got to be the strongest people I've ever met in my life. I feel blessed to have found this board.
Take care,
Mel
-
GAPeaches
Although Ive never personally experienced a clear Mri and had cancer Be aware Ive talked to women who have. So , YES you can have a neg MRI and have cancer. Ive also spoke with women whos symptoms came and went. Its great that there are no new symptoms but are the symptoms getting better? I have my fingers crossed for you that its not cancer, but what if it is? If you dont need a referral than why not see it thru and find out what IS going on.
Im sorry if it seems I dont respect your opinion I do. Its just a really strong subject for me and I dont want people to suffer needlessly.And Ive read my fill of stories of women who are dieing because the docs didnt take it seriously or they were misdiagnosed or put off until the cancer had spread.
Fill us in one way or the other.
Hugs in Va
KIM
-
Mel
To respond to your initial question, I had IBC without one of the major classic symptoms- the breast was not red and while it was swollen, it was not painful. Mammograms turned up negative and my diagnosis was confirmed only after about 4 biopsy attempts. It has been almost 2 years since my diagnosis and treatment and I feel wonderful and live a very normal life. Please insist on a biopsy ( skin biopsy of the breast too) as soon as possible.
All the best.
Empowerme.
-
HEY
GAPEACHES and MOTHEROFFOURSONS
Where are you, How are you????????
Worried,
KIm
-
Hi Kimmie,
Thanks for asking about me. I see by your posts that you are scheduled for surgery on 11/28 and that you are going through a rough spot waiting for test results and fighting the beast. Keep on fighting and being diligent. I hope your surgery goes well. I am at the point that the surgery would be a relief. Take heart. I think of an illustration either from the Bible or other literature that says, "Gird up your loins". In the Middle East where I have lived the men wear those long robes. When they go to work in the fields or some other job, they pull the robes above their knees and tie it to the side. It kind of means, get ready to work or fight. So Kimmie, gird up your loins!
I still am not officially diagnosed. Since the one biopsy was neg., my Onc. said wait a month to see if the redness goes away. It is still a little pink, there are still some orange peel areas (when I pinch the skin), I think the areola is distorted, and there is a little pad ( 2cm by 2 cm) of soft extra fat/skin/soft nodules that have developed on the right side. Anyway, I decided to not go back to the onc. who apparently is waiting for me to get to stage IV because it is easier to find!
I made an appointment at Northwestern in Chicago for Dec. 4th. This is a big University COmprehensive Cancer Center.Now I have to run around and collect all my medical records. Since I am still out of the country, I had to rebook my ticket. British Airways was nice enough to redo it for me at no charge. (A first, I played the cancer card). Anyway, I am comfortable with changing my plans and flying back from Israel earlier to get a definitive diagnosis.
I have been monitoring the boards the last month, but have not been posting much. I just haven't had much to say. But I read them regularly (to my husband's distress).
So, gird up your loins Kimmie, and fly through the surgery.
Mother of Four Sons, alias Sharon
-
thanks Sharon
Im taking it one day at a time.
'Ativan is helping.lol
Ill be glad to just get it overwith.
hugs from va
kim
-
Hi Kim, you are so sweet to be concerned for others when you're going thru so much yourself.
I'm doing okay. I did go see another "specialist" last week. I actually made the appointment for a biopsy and specifically asked when I phoned if this doctor knew anything about IBC. Of course I was told he did.
Prior to my appointment I had made a list of everything going on with both breasts. He skimmed thru the list so fast I don't think he read half of them. He then took one look at me and said "I don't appreciate anything going on here". He laid me back and checked for lumps even though he had the results of my mammo, us, mri right there. Lumps are not in question here. Kept saying he "didn't appreciate anything going on". I pointed out the red/pink areas and he couldn't see them. I pointed out how one side of my right nipple is bubbling outwards which of course he just didn't appreciate. I specifically asked about IBC. Immediately he said I didn't have it because I didn't have the classic signs. I asked about the biopsy which he replied that he wouldn't know what to biopsy.
I was in complete tears then. He brought back a book with pictures of IBC, of course, being the worst obvious signs. He actually said to me that if I had IBC I would have a large lump in my breast and that it is so rare that only 1.2% of breast cancer cases are IBC. It was at that time he told me he could count on one hand the number of times he has seen IBC. Being so upset I didn't think to ask had he diagnosed those cases. At that point all I was thinking was that I knew more about IBC than he did.
So he told me if I wasn't satisfied with his answer and the answer of the test results then I should see a dermatologist and oh by the way you're due for another colonoscopy. (colon cancer rans in my family)
So I left there feeling even more frustrated, upset and angry. I've had more things happening since the MRI and I know there is something wrong. My nipples burn off and on, the pink area on my right breast has gotten larger, the outer area itches more and more, my left breast has an area in the upper outer quandrant that is very painful to press on which is an area that is red and also itches more in the outer area. One of my nipples is darker than the other.
I'm at my wits end at the moment. I've even thought paget's since my nipples are burning now but it doesn't sound like anything I've read on paget's.
What's next?
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team