In 20s, very concerned about IBC
Hi ladies,
I wanted to post to this forum because I have been concerned about inflammatory breast cancer for the past 3 and a half months. A little about me, I am young, early to mid twenties and a senior in college. I know all of you are very brave and are true fighters. I have never personally known anyone who had this kind of breast cancer and would like to hear from someone who has. I have read over and over that it can strike women of any age, is very rare, and can present in different ways, which makes it even scarier. This is most scared I have ever been in my life.
Around the second week of July, I noticed a slight itch in my left breast that would not go away after three or four days. It also felt like my left breast "grew" a little in this time frame. My left breast has always been bigger than my right breast and has had been the one to hurt more, so at first I didn't think anything about it. Once the itch would not leave my breast I immediately became concerned about breast cancer. One morning I got up and both of my breasts were warm and tender. My bra also felt tighter on me. It really seemed like the left breast had grown and that bra cup had gotten much tighter. This happened the week after my period which alarmed me even more. Over the next week, I had burning, stinging, and soreness that was very pronounced in my left breast. My left breast just began to feel "not right". For a day or so I had very intense burning. I did have some in my right breast but not as much. I frantically called the OBGYN practice my mom goes to ( I had never been to one before) and tried to get an appointment. I finally got the soonest appointment I could. I mentioned to him I was concerned about IBC but he said my breasts looked and felt normal on examination.
The symptoms did not fully go away; over the next week or so I also experienced some slight itching in my left breast. I went back to him and referred me to a breast surgeon. I had to wait a while for the appointment so in the meantime I found another breast surgeon to go to. She checked me and said my symptoms seemed like fibrocystic breasts symptoms. I have no "skin symptoms" of IBC- no redness, orange peel skin, inverted nipple, or noticeable swelling. I expressed my concern and she IBC produces certain symptoms that indicate it. She performed no diagnostic testing. Then the appointment time came for the breast surgeon that the OBGYN recommended. She was much friendlier and more compassionate. She talked with me for 30 or 40 minutes and checked me. She said she handles about 3 IBC cases per year; she said while it's uncommon, she does not consider it extremely rare. She said she could find no symptoms indicative of any kind of breast cancer on me. She performed an ultrasound because she knew I was very concerned. It showed almost solid white on both of my breasts; she said I have very dense breasts and that's how it show on the screen. I know IBC can't always be caught on an ultrasound. I asked her could I please have breast MRI but she said the insurance would not pay for it at this point because I have no symptoms indicative of breast cancer. She said this did sound like a fibrocystic issue to her. She had breast cancer patients in their 20s so she does not ignore when young women come in with a problem, she said it can and does happen. I think she is a good breast surgeon. That's the last time I've been to the doctor about this. I know that IBC spreads throughout the body really fast and that it is misdiagnosed a lot. I have even contacted an IBC specialist's facility but his team of nurses and doctors said I shouldn't come in yet because my symptoms do not necessarily point to IBC and he is out of my insurance network area. My biggest concern is that IBC can present in different and more subtle ways than a huge, red swollen breast. I have become less afraid, but in the past 3 months I have had to start taking a mild tranquilizer because I had become extremely anxious and despondent about this situation. I have lost alot of sleep, cried alot and have had to force myself to keep on going. I am certainly not trying to trivialize this as I know any kind of cancer is very serious and IBC is one of the more rare kinds. I would just like to hear from someone who has had it. How many of you went to one of the IBC specialists or got treated at a more local healthcare facility? I had to buy some less structure bras and wear sports bras some because I could not stand to keep wearing my regular old bras. My symptoms have not gotten any worse. My breasts still look normal. It is just hard to tell in a situation like this.
If you did read this far, thank you so much for taking the time. I would like to hear from someone who has actually had this.
Comments
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Hi,
I have IBC. Honestly, your symptoms don't immediately suggest IBC. IBC does look different than dense breasts and depending on how the IBC presents, a US can be a better choice than a MRI. Personally, I've never heard of anyone having bi-lateral IBC. If you saw a doc who is as familiar with IBC as she claims, I seriously doubt she'd let 3 months go by without doing anything. Time is indeed critical in treating IBC -- I had my first neoadjuvant chemo 12 days after my DX (those 12 days were spent giving me a huge work up, inserting a port, and re-examining my pathology report). Some here began treatment even sooner. If you are convinced you have IBC, I'd recommend getting a definite DX right away. You might also want to talk with a mental health worker: I've found them to be very useful at different times during my treatment.
And, yes, IBC is very rare. The final totals of BC in 2013, in the USA have recently been released. in 2013, there were 232,400 new cases of BC reported. There were 4,008 cases of IBC reported. MD Anderson, a facility with a dedicated IBC unit, sees, on average, 100 patients a year.
bride
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Bride,Thank you for your response. I appreciate you taking the time to read my post. I hope you are doing well with all of your treatments. The breast surgeon I saw just said that she sees around three cases a year; she didn't really claim to see it all the time or be a world expert on IBC, she just said it is not unheard of. The numbers you gave would make IBC roughly 2 % of all breast cancer cases, which as you said it very rare.
I am 600-1000 miles from any of the hospitals with an IBC specific unit. As I mentioned, I contacted Dr. Cristofanilli's team in Philly. They said I took the right steps in addressing the problem; however, they said after seeing two breast surgeons who saw no signs of it and after hearing my symptoms, they said to not go to them at this point. They said the symptoms of broad and vague and could very well indicate fibrocystic issues. They also said doing the ultra sound was the correct first step. They also said that would be the first thing they would do if I went to them and they could not necessarily run any more tests at this time due to the fact I have no redness, swelling, and all of that.
If you do not mind me asking, how did your symptoms present? Did they appear suddenly or take a while to manifest? Most of what I read says that the changes are rapid and sudden, not come and go, but some people's were the exception and took months to completely show. Anyway, thank you for talking to me.
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IBC is rare - only between 1% - 5% of all DXd types of BCers. It is aggressive and rapid in progression.
In my case, I had had my annual mammo in June and it was as had been for years. July 31 or Aug 1, I found an enlarged lymph node about the size of an almond one night that had not been there the night before. My PA was on vacation so it took me a week to see her. Saw her at 11 on Thurs and she had me in for a new mammo at 1 that afternoon - turned into an US and biopsies immediately. At 8 the next morning, the Radiologist called me with the path results - as expected IBC. Mon. I saw surgeon, Wed saw Rads Dr and Thurs saw Chemo Dr. Lots of scans/tests, port implant and 17 days after DX I started neoadjuvant A/C. In those 17 days, the node,continued to enlarge, breast enlarged, nipple inverted and peau d'orange developed. I never had any pain, 'itchiness' or redness.
Remember - not everone reacts the same to anything. Also that not everything you find on line/at the Quack Dr Google is legit. There are many possibilities as to what you are experiiencing but IBC is unlikely - though of course possible.
Because IBC is rare there is not as much research that has been done compared to other types of BC. Also so much of the research on line is years old.
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Hi and thank you for responding. I hope you are doing well. It does seem that you had very rapid symptoms. My symptoms are no worse than they were 3 and a half months ago. The biggest thing that alarmed me was that my left breast felt tighter in my bra than it used to and I burning in the left breast pretty badly. These bras became so uncomfortable to the point I had to buy less structured ones and use sports bras. I have also had a strange sensation of warmth and burning in my left breast. I also had it in the right, but not as bad. One day in July my left breast got really sore, but it did not stay that sore. I don't have any of the standard skin changes that are associated with IBC, such as swelling, redness, or orange peel like skin. Sometimes my left breast just doesn't feel like it used to. Its always been larger and I have had some degree of breast pain for the last 5 years or so. All I have so far is an ultrasound. It showed very dense breast tissue that was basically solid white on the screen. I know that mammograms and ultrasounds don't always catch IBC, though. The breast surgeon said that a mammogram won't do me any good because I'm young and have very dense breasts. She said she can't get me an MRI because I have no lumps, masses, swelling, redness, or anything to really indicate IBC or any other kind of breast cancer. Both breast surgeons said it is very much like a fibrocystic issue. I have noticed that my right breast is becoming achy and sore and sometimes burns, especially two weeks before my period. Have you been to any of the IBC specific doctors or clinics?
Thank you for your time!
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Kicks, you mentioned having an ultrasound before your diagnosis. Did yours show up on that? If so, how did it look? -
I would see your doctor and talk about your anxiety. They should be able to find a way to help you accept that you do not have IBC and give you some peace. It is horrible to live with anxiety but it is easily treated. All the best to you.
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Hi Wrenn,
Thank you for responding to my post. My GP put me on a mild tranquilizer 3 months ago. He walked in the exam room and could tell I was a nervous wreck. He never understood that I was so concerned about getting breast cancer, especially IBC because it's rare. I am a college student and the tranquilizer has helped me. I usually take half of one at night, because when this first started I couldn't sleep and I cried a lot. Now I have gotten where I do not have to take them as much. The first breast surgeon was not very friendly but mentioned that I should see a psychiatrist for thinking IBC was what I had. I am a college student and needed the medicine to be able to focus and stay in school. So far, I'm doing better thankfully. After almost 4 months, my breast symptoms have not gotten any worse and are sometimes better. The second breast surgeon I went to was very good but said she could not run any more tests at this point besides the ultrasound because she could not see anything that would indicate cancer. I am doing better! I hope all is well with you.
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I am doing great! It's been 5+ yrs since DX - still NED (No Evidence of Disease). I am still as active as I was and loving life.
It takes a biopsy to DX - mammo, US or MRI do not DX. They show areas of concern to be biopsied.
IBC is very aggressive and rapid. Often presenting literally overnight.
I do not know what/how it showed on the mammo that day. Nothing had shown less than 6 weeks before in my annual mammo. My PA sent me for a new mammo that afternoon at 1 after I had seen her at 11. I had the new mammo and the Tech told me to go back to the waiting room. I was called back in for an US quickly. Told to wait in there and Radiologist came in and said need to do biopsies. Fine Needle Biopsies done then. I had gotten there at 1 and left at 3 having had mammo, US and biopsies done. I had the path. report the next morning (Fri) at 8 when Dr D. called me - IBC.
I did not go to an IBC specialist. My Surgeon is a 'Women's Surgeon' though not exclusively breast surgery. My Chemo and Rads Drs are at the local Cancer Care Center. I could not ask for better care than I got from all of them.
wrenn is right - see someone for help with your obsession with IBC. It is highly unlikely especially with all the appts you have had. There are so MANY possibilities as to what is going on that have nothing to do with any type of BC.
(I do have to say that my health care is through VA and with all the negative that has been reported about VA care, I have to say I have gotten fantastic care. My PA is with VA but I was immediately outsourced to local/private facilities for the care I needed. When I needed an Eye Specialist/Surgeon more recently, I was outsourced that day issue came up to a fantastic Dr and have an ongoing voucher with him.)
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Hi Kicks,What a blessing it is that you are doing so well after having had IBC! It's wonderful that you feel well and enjoy life. It makes me feel better to hear that you were successfully treated by doctors/at a facility that were not considered IBC specialists. It sounds like your medical team was competent and well-trained. As I have read about IBC online, there are really so few doctors in the United States that are considered IBC "specialists". The only ones I could find were in Houston, Boston, and Philadelphia. That is very few for a country of over 300 million people with some of the best medical care in the world. If you do not live within a certain radius of those three cities and do not have tons of money, seeing one of those doctors can be very challenging. As I mentioned in an earlier post, I contacted Dr. Cristofinalli's office in Philadelphia. He is supposed to be world renown in treating IBC. It would be great if I could get an appointment with him, but it's not just as simple as that. I live 1,000 miles away, would have to pay for airline tickets and motel rooms; also, he does not take the insurance plan I am on. He is located in Penn. and I live in Ala. I live out of the insurance network he works under. So the whole visit as well as any diagnostic testing he did would have to be paid out of pocket. It's just not affordable.
There is a breast cancer genetic clinic at a fairly big teaching hospital about three hours from where I live. His team recommended that I contact them to push for early screening. Two of my aunts on my mom's side had breast cancer (not IBC). One of them died from it. They were both in 40's and 50's when diagnosed. My maternal grandmother had colon cancer in her late 60's. However, they said that my family history is not exceptionally strong and they would not take me at this time. They said I should probably start getting regular screenings in my early to mid thirties, which is another 10 to 12 years.
At this point, I feel like I am at a standstill with this. The breast surgeon I went to sees 3 cases a year and knows how it should be treated, so I hope she is competent. She said if anything else happens to come back immediately. Hopefully nothing else will. I watch myself constantly for any changes. Right now both of my breasts are somewhat sore, tender, and feel a bit full. Maybe it's just fibrocystic changes.
Thank you for talking with me about this. This situation has made the past 3 or 4 months very challenging for me. My family has been there for me but got exasperated because of how I reacted to the situation. They had never really heard of IBC as most people have not. If nothing else, my whole family has become a lot more educated about it. I just wanted to hear firsthand from people who have experienced this.
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Just one thing. If you keep prodding your breasts to see if they are tender and lumpy, they will be. Take it from one who knows!
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A surgeon is not the one who 'treats' - they cut. The Medical Oncologist is the one who does chemo and the Radiation Oncologist is the one who does the rads. They can also be on the Tumor Boards at other Facilities. My Chemo Dr is on ones otther than just here.
There are different protocols that can/are used. Basically, the first TX is neoadjuvant (before surgery) chemo with IBC to get it to form a lump, shrink and get margins. Most will do 2 different neoadjuvant chemos but I did neoadjuvant, then surgery, then adjuvant followed by rads.
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I know that the surgeon does not work with the chemo and radiation. I just meant that she was aware of the correct way that IBC should be treated. I'm not even sure if a surgeon is even the right doctor that I should have been going to. My OBGYN referred me to the breast surgeon. Maybe I should have gone to an oncologist? -
Dear Sgirl,
I also had IBC. Two things that don't seem to point to IBC is having it in both breasts and the fact that the symptoms are no worse after 3 months. If nothing shows up on your tests and your symptoms don't worsen, it would be very reasonable to assume you do not have IBC. My own situation was that once a red spot showed up, each day another spot showed up. It was pretty obvious.
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I did not 'HAVE' IBC - I am IBC and will be forever. Thankfully - I am NED (as far a I know today).
After I got my IBC DX from Radiologist on Fri, I saw my Surgeon on Mon and was immediately referred to Cancer Center. There was a minor 'goof' in scheduling there and I saw my Rads Dr on Wed and Chemo Dr on Thurs - should have been the other way around for day of appt.
Why would you think that you need to see an Oncologist? They deal with cancers - you have no DX for any type of BC after seeing several Drs,.
Why are you obsesed with wanting to be IBC? Seek counselling.
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Sgirl,
You asked how my IBC presented. Over the course of three days my breast changed from looking and feeling normal to becoming somewhat warm, then overnight, my nipple became inverted, an area under a decades-old scar felt odd, and I had a quarter-sized area of peau d'orange. I saw my GP the next am and before noon a radiologist had done a mammo and an US. I was told I probably had IBC but he couldn't do a biopsy until that afternoon. Prior to that day, I had never heard of IBC. As soon as I was DXed, I chose to seek treatment at NCI-designated center located some distance from my very small town. I met first with my MO, had a slew of tests done, a port placed, and met with my surgeon and my RO. My TX was 16 sessions of chemo, surgery, 30 rads (which I finish tomorrow). After my chemo, I have continued to receive Herceptin infusions every 21 days which will continue until next July. I am about to start oral Herceptin as well. I'm also in PT because IBC kicked my ass.
I agree with Kicks: I don't have IBC, I am IBC. Although I was fortunate to have a 100% response to chemo -- my post-surgery pathology report indicated NED -- IBC is now a part of who I am.
Finally, I agree with others who have suggested you seek some help to understand why IBC looms so large in your mind.
bride
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Kicks,
I realize that IBC will always be a part of who you are; however, you sound like you are doing very well and are enjoying life, which is great! I know that I probably overreacted to the symptoms that I had, and I'm working on improving that. At this point I can't go to any more doctors about my breasts because nothing else has changed. I have looked into seeing a psychiatrist who specializes in health anxiety, but that is very expensive and time consuming, and I'm trying to work this out without having to get to that point. I have had another issue like this before about five years ago about another kind of cancer. I was able to "get over it" a little faster than this, but it was still a struggle. Worrying about my health is something I have to focus keeping in check and not going overboard with.
Thank you for talking with me about this. I will pray for your continued health and well being.
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Bride,
Thank you for sharing your experience with me. Talking with someone who has had this has helped me. Your symptoms as well as the others I have heard from with IBC, seemed to appear rapidly. I will pray that you will stay strong throughout the rest of your treatments and that God will bless you with strnenth and peace.
I am working to not obsess over this disease as it is very unlikely it is what I have. The doctors I saw said I may need counselling or psychitric help with this. That is very costly and time consuming, so I am trying to work through this without having to go that route.
Thank you for talking with me.
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Winning So Far,
Thank you for responding to my post. My symptoms started off mainly in my left breast but have now started happening in my right breast as well. Nothing has really changed in a while, and I have none of the signs that are definiteily indicative of IBC. Mine is mainly a discomfort in both breasts that worsens and gets better at different times. One of the breast surgeons did an ultrasound, which did not really show anything other than dense breast tissue. I know that those don't always catch IBC, but the breast surgeon said that she can't get me anymore diagnostic testing at this point.
Did you have any other symptoms besides the red spots appearing rapidly?
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Dear Sgirl,
My dear, if you've had cancer concerns before that interfere with you living your life, you really do need to find the time and money to deal with anxiety now. You deserve to live a happy life as a young woman and not spend your time and money pursuing cancer. Believe me, if you ever contract breast cancer, you'll be sorry you spent so much time worrying about it when you didn't have it.
Therapy could really help and maybe you'd be offered meds too. I hope you do pursue this avenue instead of worrying yourself about IBC.
You asked if I had other symptoms. I did have orange peal skin and red streaks that connected the red spots, sort of like a spiderweb. I suppose that was the cancer spreading through the lymph system. It didn't come and go. Every day it got worse. I'd say that within a week I was at the GP's office with my own suspicions it was IBC and my GP thought so too. What you describe doesn't sound to me like IBC nor does it to your doctor.
Please stay connected to us though as a source of comfort, even if you don't have breast cancer. We love young women.
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Hi WinningSoFar,
Thank you for your kind reply. Most people do not understand what I have been going though with this. It's really hard to if you haven't dealt with it. There was a point where not drive a car because it just was not safe; I would be too nervous. My GP put me on a mild tranquilizer about 3 months ago so I could sleep better and concentrate on school and every day life better. It has been of help. I took a half of one per day and now have been able to reduce them to every other day or sometimes even longer than that. I used about a bottle of them per month and now am on my third bottle which is lasting longer because I'm not taking them as often.
In July, I did notice a change in my breasts but no doctor can identify that it is any kind of breast cancer. I also noticed that I immediately got more fatigued and "run down" feeling when this all started. That could be caused by anxiety, though too , I guess. Constantly worrying causes you to get tired more easily. This has also caused me to have feelings of depression and loss of interest in things I used to enjoy doing. It can be debilitating. However, with God's help I have made progress getting out of this. I no longer have the intense fear of getting IBC that I once did. I hope, pray, and trust I don't have it; so far nothing else has showed up.
Thank you for talking to me.
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I wonder if there is a forum that addresses these kinds of issues that might be of more help to you. The women on this forum are used to dealing with emotional issues related to cancer. We all have breast cancer and one your fears is around cancer so I wonder if you should be seeking out help from a place that deals with psychological issues? Wishing you the best.
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There are all kinds of anxiety forums on the internet. I have visited some of the sites and many people other people have constant health concerns; it's not just me. I am doing better but sometimes it still gets to me. I so wished I could have had some more diagnostic testing besides the ultrasound such as an MRI, but the breast surgeon said she could not get it to where insurance would pay for it at this time. Did any of you have MRIs to aid in your diagnosis? -
But you are on a breast cancer forum. You don't have breast cancer. Scans had by the women here who have breast cancer is not relevant to your condition.
I am starting to wonder whether you are pulling our leg here because you can't be that obtuse. I hope that is not the case because it would be cruel.
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No, I am not pulling anyone's leg or being cruel. This has been an issue for me, but I am working it out. I will not be posting any more on this thread. Thank you all for your responses. I appreciate all of them. -
Sgirl,
You wrote that you're a senior in college. I was a college professor for 30 odd years. I've never known a college that didn't offer some level of mental health services that cost nothing. And I know from my own experience as well as the experiences of several students that therapy is available at very little or no cost even outside of college. Many therapists use a sliding fee scale. Money should not stop you from learning to live without fear. Please don't choose to live in fear.
bride
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