Bilateral IBC
I have been going through this site for months but this is my first post.
While 5 months pregnant I discovered a swollen neck lymph node and on the opposite side my underarm was swollen. I had ultrasounds done which revealed nothing other than my breast tissue goes high into my armpit in one side.
Fast forward to a few days post partum and I find a small lump in that breast. It seemed to be fluid filled and after 2 ultrasounds 6 weeks apart the 3 radiologists and a breast surgeon were not concerned. At the follow up breast surgeon visit I mentioned noticing pores on my breasts that weren't there before. They cover both breasts. He decided to send me to an oncologist for another opinion but he also wasn't concerned but knew I was. He did notice a small patch of pinkish skin on that breast. You can only notice it in perfect lighting if you are looking for it. I went through photos on my phone and can find the same red spot in photos from a year ago so I'm hoping it isn't related.
Here I am waiting for the oncologist appointment next week. I have convinced myself I have inflammatory breast cancer and can hardly stop crying. I won't even look at my breasts while breastfeeding. I have noticed hardening of the breast tissue in large areas but no pain. I keep trying to calm myself down that it isn't IBC since I'm having the same symptoms at the same time in both breasts (like the large pores). My skin isn't thickened. I'm a mess.
Comments
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IBC is very rare. IBC in a young woman is even more rare. Bilateral IBC is so rare that the cases make it into medical journals. Bilateral IBC in a young woman? Nothing is impossible but the odds of that happening would be a fraction of a fraction of a percent.
On the other hand, you had a baby just a few months ago. You are breast feeding. Your hormones are going crazy. So your breasts are looking and feeling different? Of course they are.
After 3 radiologists and a breast surgeon all found nothing of concern, I'm not sure why the breast surgeon is sending you to an oncologist. A breast surgeon is the specialist who understands and diagnoses breast symptoms; an oncologist deals with treatment after a diagnosis has been made. So I don't know what an oncologist can tell you, although hopefully he or she does a breast exam and reassures you that you are perfectly fine.
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Beesie,
First, thanks for responding so fast. I have read so many posts on here and everyone is so kind and helpful. It is truly such a great, supportive group.
Second, I guess he wanted to send me to the medical oncologist because he wasn't sure what to do next after noticing subtle changes. He said he didn't know what type of tests would be best to do and the most accurate because I was breastfeeding. I'm used to changes while breastfeeding since this is my 3rd but things have been very different. Also, after watching my grandmother pass last year after her 4th breast cancer battle I have become very paranoid.
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Symptoms in both breasts really suggests something else... as Beesie said, IBC is rare, I don't think I've ever seen a post from someone who had it in both breasts at the same time... It is not impossible, but not likely.
I see posts quite often of people who think they have IBC, but most of the time it is just a result of googling too much.
Worrying about it won't do you any good. Considering that you have an appointment scheduled next week, the best thing for you to do is put the worries out of your mind for now and just take care of yourself!
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I was very surprised how many posts there were about people concerned about IBC on here. I think now that I have 2 solid masses in left breast (over a few inches long) and one on the right has me even more concerned. The left breast is double the size of the right (but it is my over producer LoL and always much larger than my right). The only thing keeping me somewhat same is that everything is happened in both breasts at the same time more or less. This has all been going on since January which has definitely interfered with me enjoying my newest baby the way that I should be.
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Amanda, notice that all but a few o those people posting about IBC in the “Not Diagnosed but Worried” forum have a minimal number of posts and then are gone because they didn’t have IBC.
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I did notice. I just have this feeling that it is just a matter of when and not if when it comes to breast cancer for me. I wish I could just have an elective double mastectomy now because of my family history of multiple family members with breast cancer.
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Amanda - if you are worried about familial breast cancer - have you gone to see a genetic counselor? Do you have family members who have undergone genetic testing? This is something you can be pro-active about!
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I actually didn't know much about genetic testing until recently. I know my grandmother tested negative for carrying the gene (I do not know the technical term for it) but my aunt suggested I look further into genetic testing for myself.
Today I called the office to see if I could be seen by someone sooner. The breast tissue that is on the top section of my breast has become very painful and I really do not think it is mastitis as I have had that once in the past and this seems different. I had to leave a message and didn't get a call back yet (everything is crazy in NY with the virus). I noticed a pink patch on my right breast today as well. I just wish I had answers. I have had a few other things going on like severe abdominal pain and also spitting out mucus with blood almost daily which I have seen doctors for and no one can give me answers. I had an abdominal and neck ct with contrast which didn't show anything. I have a chest ct coming up that a pulmonologist scheduled to rule out the mucus is from my lungs. There are just so many different things going on and not a lot of definitive results.
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Hi Amanda,
How long ago did your grandmother have genetic testing? Genetic testing is a field that is always evolving as researchers identify new genes that cause cancer. Also, how old was she? Did you have other family members with cancer?
Ideally, it is better to have someone in your family who had breast cancer get tested first. If the genetic testing company is able to find a mutation in that person, they can just focus on the same mutation when they test you.
Keep in mind that if they don't find anything, it doesn't always mean that the person tested does not have a mutation, just that there was not a mutation they could find.
You can talk to the oncologist about a referral to a genetic counselor who can guide you through testing. If you do get testing, make sure you work with a genetic counselor so that you can get testing through a reputable company.
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Oh - one more thing, there are many genes to be tested for, not just one.
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Incredible information. Thank you. She was diagnosed initially in her 50s with breast cancer. Several years later she had bone cancer (which they still called breast). In her mid 60s cancer was found in her other breast. She was in the clear for a year before she had cancer in her lungs that ended up spreading rapidly and she passed at 70. She had genetic testing done twice during that time with one being years ago and another more recently. Her sister passed away from breast cancer along with my grandmother's aunt.
I will definitely speak with the oncologist about guiding me in a direction for genetic testing. Right now I am in so much discomfort. I feel like my breast tissue turned to cement in a few areas and it is painful.
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The hospital called and I have a chest CT with contrast on Monday morning. If I don't have BC now I will after all of these scans. Goodness. I haven't heard back from the breast doctor so it seems I can't move my appointment up.
Both breasts feel like the tissue has turned to cement. It feels like if my breast were engorged but they are not as I have pumped and breastfed a ton today.
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I would really put the worry of the scans out of your mind.... much better to find something early than when it has progressed.
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Hi Amanda,
Did you have results from your CT scan?
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The pulmonologist hasn't called me. He did warn me that it may take a bit to get back to with me with the results because of how busy he is due to the virus unless there was something important shown on the CT then he would call immediately. I'm taking the silence as a good sign.
My left breast is now heavy and swollen. I'm also having pain in it that makes sleeping hard and I have been wearing ice packs in my bra all day. Tomorrow is the oncologist appointment...
Thank you so much for asking! I'm so scared for tomorrow.
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Hi Amanda:
Using ice packs continuously can result in a "rebound" response where inflammation and pain are actually increased. It is recommended that ice packs not be used for more than 20 minutes at a time. So try alternating 20 minutes on and 20 minutes off to see if your pain decreases.
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It isn't exactly an ice pack but "booby tubes" that are filled with flaxseeds I believe. I have it for about 10 minutes before it is back to body temperature and I stick it back in the freezer for awhile.
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Amanda2692
Pulmonologist? They handle respiratory diseases, not breast problems. Maybe you meant radiologist?
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No. I was referred to a pulmonologist for another reason. Since the fall I have had mucus nonstop in my throat that I bring up. The doctor blamed it on pregnancy. I'm now almost 4 months postpartum and still have it and it is mixed with blood. I saw an ent and they said it was just allergies most likely and did a neck ct. My primary care sent me to a pulmonologist to be safe and he had me get a chest ct.
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The oncologist was able to tell me that the CT scan the pulmonologist ordered was all clear. No abnormalities shown.
She said that she saw no signs of IBC. My breast is slightly swollen and she does not see any redness (that breast is always double the size of the right). She said the pores that can seen on both breasts are not IBC related. They are identical on each breast. She said I had breast cystic lesions and sent me for an ultrasound just to triple check things out (I have had 2 ultrasounds since January). I asked about a punch biopsy and she told me that there isn't an area she could do that in because I don't have any areas of concern on the skin. The ultrasound didn't show anything concerning either (but I know with IBC it doesn't really show on ultrasound either...).
I want to say I'm relieved but I'm still concerned of course. Since January I have now had 3 breast ultrasounds, an underarm ultrasound, neck ultrasound, thyroid ultrasound, CTs with contrast on my neck, chest and abdomen, a chest xray and a barium swallow. Prior to January I NEVER went to doctors. For someone who is usually the holistic hippie type I have more scans in a few months span that I should have in a lifetime. I even have homebirths because I prefer to avoid doctors and hospitals unless necessary. I just want to relax and enjoy my newest little baby without worrying.
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Hi Amanda,
It is not true that IBC won't show on an ultrasound. I went in for a mammo and ultra and they pretty much told me as I was sitting on the table that they were sure I had cancer. At one point during the ultrasound the Dr. called in a more senior Dr. and they were moving the probe around my breast and talking about the tumor. They could also detect enlarged lymph nodes in my armpit. It was the end of the day, and the biopsy clinic next door was closed, so they had me come in first thing the next morning to get an FNA biopsy to confirm and start planning treatment and additional biopsies and scans immediately.
I'm not saying that it will always be detected by ultrasound, but in cases like mine it was obvious to experienced Drs.
I know what it is like to hate all the visits and scans. I also didn't like going to the Dr. or having scans, but breast cancer makes that a life or death choice.
I hope that you can not worry and enjoy and focus on your new little one instead!
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Don't get me wrong... I completely understand that the tests and scans are necessary. I just feel like I'm getting to a point where my anxiety is the reason I'm getting all of these done.
My hands are on my boobs nonstop daily with breastfeeding so I'm constantly thinking about cancer with all of the hard lumps and fluid one in my breasts on top of the pain and seeing those pores. Of course I want definite answers but no doctor, surgeon or radiologist has seen a reason to do a biopsy. I guess with all of the scans done something would have shown up somewhere along the way (at least that's what I tell myself to calm down).
Monday I have decided to pack up my 3 kids and take a 2600 mile drive to Las Vegas to stay at my mother's house. Don't worry I have a plan in place so we won't be stopping and getting in contact with anyone along the journey. We live in a city in upstate NY so my kids don't even have a yard to play in during these stay at home orders. It is making my health anxiety get out of control so at least when I get to Nevada we can enjoy the outdoors again. My husband has to stay behind and work but I'm sure he will enjoy the month of peace and quiet.
You all are so helpful and amazing and I can't thank you enough for responding to my posts.
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Hi Amanda,
Good luck an your trip and stay careful! That is a pretty long drive to undertake in the current crisis.
Hopefully your breast issues are related to breastfeeding and age related changes and nothing to worry about. I think everyone can understand why you want the scans.
You should explore meditation / visualization etc. It helps with the stress. I don't know what the park situation is in the Las Vegas greater area, maybe you will be able to get outdoors some and still practice social distancing. Red Rock Canyon and Valley of Fire are both beautiful.
Best of luck!
blue
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2600 miles with no stopping? What will you use for bathrooms? Getting gas? Water and food? It doesn't sound at all doable, especially with young children.
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Blue,
I definitely need to try out meditation or some kind of self help exercises for my mental well-being. I'm going to stop obsessively checking my breasts daily and just keep up with normal, routine checks and come up with some sort of plan with my doctor to keep an eye on things when I get back. We used to live in Las Vegas when my son was a baby so I'm very excited to take all of the kids to Red Rock and Valley of Fire. They are such amazing places. Thank you for all of your advice as well.
Alice,
This will actually be my 8th cross country drive in the last 10 years. I absolutely love long distance travel and have every day planned out so the kids don't get too crazy driving for 3 days. I have an air mattress set up in the back of my suv for sleeping. I also have a camping toilet to avoid rest stops LoL. We have plenty of food and water and are planning on picnics at a few nature spots to stretch our legs.
Of course I will need gas but I'll bring gloves for that ; ) My kids are used to long drives since all of out family lives out of state. -
I was curious if anyone had any ideas what would cause the open "pores" on my breasts? The oncologist just said it isn't IBC. They are like someone poked my breasts all over with a needle. It is uniform and covers both breaded until almost my armpit. They have been th er e since February.
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Amanda, if you look at post-pregnancy and breast feeding sites (rather than breast cancer sites), you will find that it's a pretty common occurrance.
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I guess 3rd pregnancies are unpredictable LoL. Just between the lump, underarm swelling and paranoia I always think of worst case.
Thanks for everyone's patience with me.
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I'm still here and still worried LoL.
My trip to Nevada was great and the 5500 miles we drove was actually very easy considering I had my 3 kids with me (4 months, 4 years and 8 years).
Unfortunately, my worrying never stopped and I made an appointment with the breast surgeon to "follow up" after seeing the oncologist. He did note the slight areas of redness (well, pink) and that I did have areas where my breast tissue is very firm which I explained had not changed at all during my hours of pumping while driving. He said he spoke to his colleague (another breast surgeon) about what step to take next prior to my visit and she thought a mammogram would be best. They were able to do it right then so I didn't have to go back. After the mammogram the radiologist came in to speak with me and explain that imaging is tricky since I'm breastfeeding but she did not see any areas of concern or calcifications. The surgeon also called me afterwards to reiterate what the radiologist told me and say that he felt I just have "normal breastfeeding breasts."
I want to contact another breast center for a second opinion. First, I want a biopsy on the original lump that started this all. Second, I would like an explanation as to why the breast tissue feels solid as a rock going towards my underarm area. Am I being unreasonable with this? I actually scheduled a dermatologist appointment for June 1st to check out the splotchy pinkess and I hope they do a punch biopsy.
All in all, the left beast still feels slightly swollen, has enlarged pores covering the whole breast (probably breastfeeding related) , the small fluid filled lump below the nipple, areas of splotchy pinkness and what feels like a solid disk of tissue going towards my underarm. The right breast has the enlarged pores covering the whole breast (again hoping breastfeeding related) and one small pink spot on the skin. Both breasts always feel warm/hot but I do think my breasts always are when I breastfeed.
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Tomorrow morning I have the punch biopsy. Do you think it is possible to do it without lidocaine? It can't be more painful than my two homebirths LoL. Naturally, I'm very scared of the results despite the dermatologist being very confident it isn't IBC (and the oncologist and breast surgeon saying the same thing as well).
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