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I slipped through the cracks for almost 5 months and by then I was diagnosed Stage 4 and I am ****** off about it because not only had I just had two mammograms, all people asked is "Is there cancer in your family." No there is no cancer in my family and the mammograph is clear --- meaning, I will keep seeing the doctor every week and we will take the slow road to China to see what is up with this horribly misshappen breast.
I am glad for you, but I want it to be me too.
I just discovered a lump in my left breast - the same one that in October was red, itchy, painful and swollen. My medico passed it off like so many other stories I have read. Over a week ago I had a fine needle aspiration of the lump and the pathology report is still not back. I found IBC by accident but I will certainly bring it to the attention of my PCP and ask for a little speed.
Your story, and the fact that you have had time to write it (and not succumbed to the dire survival preditions gives me hope that maybe mine will be treated in time.
I have 4 beautiful grandchildren that I would like to see succeed in life. They kind of like us being around, too.
Oh, and talk about short odds, my husband has mesothelioma, another very rare cancer!!
I hope you get a good report. When most of us hear about a rare disease, we assume "It can't happen to me." But I'm sure with your husband's diagnosis with a rare cancer, you have a different perspective. IBC is scary, but treatments are getting better, and there is every reason to think that whatever this biopsy shows that you will have plenty of time to play with your grandchildren.
I have been having complications with my breast. Much what you describe is the same kind of problems that I am having. When I am in the shower my breast begin to itch really bad and hurt. I have red purple area underneath both of my breast. I saw my gyno and she has prescribed antibiotics for 8 weeks and a mamo.I am really concerned that I may have this type of breast cancer.I have heard that an MRI is better than a mamo for this type of cancer. My doc said that she could feel a mass in my left breast. I also have a hard lump on my neck.
October 2003 I had a breast reduction and caught MRSA. My MRSA would not even be diagnosed as such until 2005 because so few Doctors even knew what MRSA was. I lived with pain and infection in my left breast 24/7 for all those years. I did apply antibiotic ointment to the area daily and knew this made it feel better. I continued to get sick, have itching and pain. Finally in 2005 I saw a show on Discovery Channel about bad plastic surgery in Brazil. The image they showed of the Tummy-Tuck and the open wound was just like mine! I went to a Dr. and got treated. I never did heal correctly and have pain and open wounds ever since 2003 (This is 2010). I then went and had mamos annually, and even had a couple of ultra-sounds over the years to see why I am getting this pain; but to no avail. Now I had a Mamo, Ultra-sound, and MRI done in 2009 and they found nothing. My breast is often bright purple and swollen and so painful. No one ever approached me about IBC. I have lived with this pain for so long at this point if the disease kills me; I would rather be dead than to live with it any longer. My Drs tell me that these infections, swelling and purple skin are all psycho somatic. I have seen Drs. in Beverly Hills, Miami, New York and Boston to find a cure. It does sound very much like I have IBC as the itch that is there at times is so intense I can't sleep and I refuse to take pain pills for this. I have surrendered to my illness and can't afford a Dr. any longer since I'm over 40 making me virtually unemployable in this economy and Medicaid doesn't cover surgery for this problem.
Dear Medical Reader, I am so sorry that you are having so much trouble. I don't understand how a doctor could call a bright purple breast a psychosomatic problem! Some women do have long-term infections that do not respond to antibiotics, and it seems that you are in that group. There are doctors who specialize in infections and wound care, so maybe that is the kind of doctor who could help you. Because women with untreated inflammatory breast cancer (IBC) usually die within 18 months, I doubt that IBC is what you have. It sounds like you have not had much success finding the right doctor to treat you so far, but I hope that you will continue to look for a specialist who can help you.
Hi, I'm sorry to hear about everything you have gone through. But also very happy to hear that your cancer has not reappeared!! Congratulations!
I have a question for you...
About 12 days ago I noticed a red/pinkish patch on my breast that looked like a bug bite. It is swollen like a bite. At 1st that's what I thought it was, since it itched, but then it didn't change and then I googled it. The more I read, the more I got nervous about IBC. Both my mother & grandmother (who passed away) had breast cancer. But both were post menopause and my mother was stage 1.
I went to my OB 4 days ago and he put me on a strong antibotic 4x's a day for a week and said to come back in a week. I've been on the medicine for 4 days now and I really don't see much change. Today I do think the spot looks a little lighter, but maybe more bruised like. But I also don't see any other symptoms of IBC.
What do you think?
And if I don't see anything by the end of the week, what should the next step be.
Any suggestions would be greatly appreciated!!
Thank you!
Let's hope the antibiotic works; however, if it does not, then you should discuss further diagnostic tests with your doctor. Although IBC usually does not have a lump that shows up on a mammogram, often mammograms show changes in symmetry, skin thickness and/or breast density from previous images. So a mammogram might help figure out what is going on. When an antibiotic does not clear up IBC symptoms, then the best practice is to do a biopsy to rule out IBC rather than try another antibiotic. Although you do not have the swelling and dimpled skin that is often characteristic of IBC, it is important to be assertive about finding out what is causing your symptoms just in case. I'd suggest asking for a referral to a breast specialist if the antibiotic doesn't work. I hope you soon see a definite improvement.
I am a 33 y/o female who has had bouts with shingles since I was very young.
About 6 months ago, I had a breakout on my neck. It finally cleared, and then not even 2 weeks later, my right breast began to hurt. It hurt for about a wk, then broke out in a rash.
I assumed it was my shingles again, but was worried.
I went to my Family doctor then my Gynocologist who ordered a Mammo. It was negative so he sent me to a Dermatologist who did a skin biopsy. It came back as nothing.
This is going on 6 months now and it seems to be getting worse. The rash is not under my breast, but over and to the sides of my areola. It itches extremely bad, and so does my nipple. Honestly it sort of burns.
I honestly can't take it anymore, and made an appt. for a breast specialist to take a look at it on Monday.
Thank you for your story. I was about to give up, but I'm not, bc I know something is not right.
Dear Worried, I'm sorry that you are having such a terrible time getting this diagnosed. Burning is a word that I associate with shingles pain. Is your doctor positive that this is not a recurrence of shingles? Do you know if the biopsy the dermatologist took went deep enough to detect cancer cells in the lymph vessels of the skin? A biopsy that included all the layers of skin should have found inflammatory breast cancer (IBC) if it were there. It sounds like whatever is going on is complicated to diagnose. I wouldn't assume that IBC is the cause of your problems, but see what the specialist says. You may need another biopsy to rule out IBC for sure. Don't give up. I'm sure the answer is out there.
Thanks for the information Phyllis.
I was diagnosed with Non Lactating Mastitis of my left breast in September 2010. A course of antibiotics, ultrasound and mammogram and a visit to a specialist convinced me the problem was under control. The swelling reduced and the lump and tenderness of my left breast. Life returned to normal. Unfortunately a week ago (3 months later) the problem has returned. The swelling was worse, the pain was worse and yet again, nothing sinister has turned up in my recent ultrasound. I have commenced another 2 weeks of antibiotics and the swelling appears to have reduced, but the lump and the tenderness still remains at this stage. I am scheduled for a biopsy to identify whether IBC is present, however I dont feel like my symptoms match what you and others describe...eg. antibiotics being effective etc. My Dr. wants me to wait 3 weeks for the swelling to subside before the biopsy is performed, however I am feeling somewhat anxious about what might be? Do you have any thoughts on a diagnosis?
Thanks for your information and I am so happy you are well! Sue
Sue, it is true that your initial response to antibiotics should rule out IBC. However, I have heard of some people who had an initial partial response to antibiotics who were eventually diagnosed with IBC. Maybe when cancer blocks the lymphatic vessels, secondary infections develop that respond to the antibiotics while the cancer remains. Your doctor is correct to order a biopsy. I would want it as soon as possible, but your doctor may have some good reasons for wanting to delay.
I recently had a talk with my own primary care doctor about non-lactational mastitis. She said that it is rare, and, of course, so is IBC. In her own 15 year practice, she has had one case of each. When you are dealing with rare occurrences, a consult with specialists is often a good idea. I wish you the best as you proceed through the diagnostic process.
I too was diagnosed 5-2010 w aggressive carcinoma and ibc of l breast. I just stopped 6 months of oral xeloda after chemo surgery and radiation. The surgeon had to take all of my skin 11 nodes 6 were positive. My radiation oncologist just said to me she considers me cured. I still feel terrified as few drs know of this rare cancer. So like you i am waiting, waiting, waiting. I was told I could not have reconstrution for up to 2 yrs, again they are waiting to see if it comes back. I feel hopeful after reading your story. I had an mri and pet scan in may because I am having alot of rib and chest underarm pain. I am happy to say all clear. I will be 55 in october an will be celebrating, celebrating life. All the drs I went to said it was nothing and that breast cancer is not painful. I also had the redness itching swelling etc. They all said it was nothing. So yes we must get the word out and educate women. If something does not feel right about your body keep going until you find the answer.
Deb
Deb, thank you for sharing your story. It's wonderful that your radiation oncologist is so optimistic about your prognosis. Most doctors don't use the word "cured" for IBC or other aggressive Stage III cancers. The official term is No Evidence of Disease or NED. My own doctors never used any sort of official language about my status. After an exam or a test, my radiation oncologist always said, "It looks A-OK." I came to love that phrase! As long as you have follow-up visits scheduled, the terminology doesn't matter.
Of course, you are going to have moments of worry about whether your IBC will show up again. That is a realistic fear. How try to live as many moments as possible in the hope that your radiation oncologist has offered.
Hope some one can help me.I have had a growing lump on my left breast nipple for over a year.Just a few days ago it started to hurt it never hurt before.Now red and very painful.The lump that has been slowly growing has now took over about my whole nipple.What is this likely to be.Cant see doc till end of month.Sooo much pain all while raising my grandchild.
I'd say this is something you need to see a doctor about now; it's obviously getting worse. Emergency rooms have to treat people, whether you're insured or not; if that's your only option, take it. You might also be able to find a low-cost clinic to help you. But please don't let money stand in the way of getting this treated; I fear if you wait until the end of the month, and it continues to worsen, the treatment will be a lot more complicated and expensive than it would be if you got it taken care of ASAP. I'm sorry you're having to go through this... best of luck to you. PJH
Carol, it's very possible that the lump on your nipple is not breast cancer because most breast cancers begin in the breast ducts within the breast. However, the new symptoms of redness and pain signal a change that needs attending to now. An urgent care clinic could help you if you don't have your own doctor. This is a problem that is worth putting on a credit card or borrowing money from a friend of relative to get treated. As PJ says, waiting may just make the situation more expensive and complicated to treat. If you live in an isolated area or if it is really impossible to get to medical care, you could try hot compresses and antibiotic ointment until you can see a doctor. I hope it turns out to be a minor infection.
So my question is why don"t doctors have any information for women about this inflammantory breast cancer when you go and get your screening done or see your doctor for other things,makes since to me for woman to have this information and what to look for before its to late.
Thanks
If you read the information that comes with breast self exam literature, you will notice that it mentions discoloration, change in shape, and skin dimpling. Unfortunately, so much of the information emphasizes looking for lumps that most of us don't pay much attention to the other breast cancer symptoms.
I firmly believe that more should be taught about inflammatory breast cancer because even though it is a tiny minority of new breast cancer cases, it causes a disproportionate number of breast cancer deaths. Because IBC symptoms overlap with so many minor problems, other people think that women would be unnecessarily panicked if they know more about its symptoms. That's a rather patronizing view of women and their ability to process health information. Women need to know what to look for for all types of cancer.
Dear Phyliss,
Thank you for sharing your story. I am a mother of 3 and I am 40 years old. I have a simple question. I have had this itchy patch started above my left breast. It would itch like nothing I have ever experienced before. This started about 1 year ago. Then over the last several months it stopped itching there and started itching on my left breast terribly. Now it has progressed to the middle area between my breasts and over to the right. When it itches I can't think of anything else. The itching is so bad. I have had several mammograms in the last several years with my last one in May 2011. It was clear. In your professional opinion would you be checked out for IBC for this? My breasts are not enlarged or achy (only when I am pre-period) but the itching and the texture of my skin in the areas of the itching is changed. Thank you for your corageous story! God bless!
Brenda
Brenda, I'm not a medical professional, just a well-read breast cancer survivor. What you are describing sounds more like a skin issue the way it's moving around. Breast cancer doesn't usually get better like your skin has. I assume you have already tried some over-the-counter anti-itch products, so it's time to see a doctor--maybe a dermatologist. If the dermatologist's remedy doesn't work in a reasonable amount of time, it would be appropriate to ask about a biopsy to rule out IBC. Definitely pursue that possibility with a breast specialist if you do develop swelling or skin dimpling. Try really hard not to scratch. That just makes the skin more irritated. Press really hard with the palm of your hand instead of scratching. I hope you soon find some relief.
Thanks for your advice Phyllis! I appreciate it. My dr. had given me this prescription cream one year ago for this itchy patch (the first one that I had that now seems to not itch as much). It doesn't seem to do anything for it. I guess I will start by calling my dr. and going from there. I just don't want it to be anything bad and not knowing. God keep you in good health!
Thanks for your advice Phyllis! I appreciate it. My dr. had given me this prescription cream one year ago for this itchy patch (the first one that I had that now seems to not itch as much). It doesn't seem to do anything for it. I guess I will start by calling my dr. and going from there. I just don't want it to be anything bad and not knowing. God keep you in good health!
Hi, it was good to read your story so thank you for sharing it. I would like to ask you if my symptoms sound familiar to yours.
I have just finished all my treatment for breast cancer, invasive grade 3. Lump and lymph nodes removed April 2011, chemo for 3 month and 20 sessions of radiotherapy which finished in Oct 2011. The trouble i now have is for about 7 weeks i have an extremely itchy breast, the same breast i had the cancer in. I am ripping at the skin, ive never know an itch like this, its severe. I scratch and scratch but sometimes it feels like i cannot actaully find the spot that is itching, so i have to just keep itching the whole breast. The nipple is very itchy, there is no crusting/sores around the nipple. The breast gets very red/hot/swollen, but surely this is because im itching? I do not have the orange peel look, no inturned nipple.. The other strange thing is, this itching has come up on my stomach, leg and arm, did you itch anywhere else on your body. My drs say they don't know what it is, maybe hives?? But it is over 7 weeks im ripping at myself, im bruised where i scratch so harshly as the itch never goes away. Ive had loads of pills and creams and nothing at all works. Does this sound like ibc.
Thank you, Carolyn.
Hi, it was good to read your story so thank you for sharing it. I would like to ask you if my symptoms sound familiar to yours.
I have just finished all my treatment for breast cancer, invasive grade 3. Lump and lymph nodes removed April 2011, chemo for 3 month and 20 sessions of radiotherapy which finished in Oct 2011. The trouble i now have is for about 7 weeks i have an extremely itchy breast, the same breast i had the cancer in. I am ripping at the skin, ive never know an itch like this, its severe. I scratch and scratch but sometimes it feels like i cannot actaully find the spot that is itching, so i have to just keep itching the whole breast. The nipple is very itchy, there is no crusting/sores around the nipple. The breast gets very red/hot/swollen, but surely this is because im itching? I do not have the orange peel look, no inturned nipple.. The other strange thing is, this itching has come up on my stomach, leg and arm, did you itch anywhere else on your body. My drs say they don't know what it is, maybe hives?? But it is over 7 weeks im ripping at myself, im bruised where i scratch so harshly as the itch never goes away. Ive had loads of pills and creams and nothing at all works. Does this sound like ibc.
Thank you,
Carolyn,
I'm sorry that you are having such terrible itching. The main thing that you say that makes me think your itching is not IBC is that it is on other parts of your body, not just your breast. Before I read that part of your post, two possible causes had occurred to me: radiation and scar tissue. Both of these can cause problems long after the treatment is over. In fact, breast surgery can cause IBC-like symptoms when scar tissue blocks the flow of lymphatic fluid. However, I am mystified as to how these could cause the itching in other areas.
It is possible to get IBC after treatment for other forms of breast cancer, so you do need to continue to talk with your doctors as you search for a solution.
Scratching is currently setting up a vicious cycle of increased skin irritation leading to more scratching leading to more irritation. Can you try cold compresses or anti-itch medications like Benadryl to give some temporary relief while you look for the underlying cause? Try really hard not to scratch. Press hard with the palm of your hand on the itchy place.
If your surgeon and radiation oncologist don't think scar tissue and/or radiation are related to the symptoms, it might be time to see a dermatologist if you haven't already. I hope you soon get some relief.
Hi, i know this post started years ago, so i hope someone will read this. I am on week 9 of a REALLY itchy breast and nipple, nipple is all healthy looking. Had a normal mammogram and had an ultrasound that shows swelling of the breast and fluid in the breast. This itch is just awful, i rip at my skin and am bruised, and its too uncomfortable to itch my nipple, so am now doing it with kitchen roll. The itch is deep inside and comes to the surface so to speak, and i cant always relieve the itch as often i cannot find the 'right spot'? Now my Dr's are not taking this too serious because when this first started i was itching on a couple of other parts of my body as well, so they said it cant be cancer. Before christmas (2011) my boob was really hot, swollen and red, and the dr said it was thrush, but the test came back negative, so then he said i had an infection in the breast and i took a load of antibiotics. But this itching is still there, day in day out every day. I can't take much more of it. I have also got what i can only describe as hot needles poking in the outer side of this breast. There is nothing to see on the breast, no orange peel look, no lump. The other thing is, last October 2011 i just finished all my treatment for aggressive breast cancer, grade 3, i have had the tumour taken out and clear lymph nodes, 3 months of chemo, and 20 sessions of radio therapy. Now this normal mammogram, so i dont know what to think. My nan died young of breast cancer, my mu and all her sisters died of bone and lung cancer, which the drs are now questioning if they all could have been secondaries from breast cancer? What do you think ladies. x
Carolyn, if this is the same breast that was recently treated for breast cancer, the problem could be related to scar tissue and/or reactions to radiation. If the antibiotics reduced the redness and swelling, then it is not likely to be breast cancer. It would be more likely to be an infection--again not all that unusual after cancer treatments when your immune system is low.
If this is your non-cancerous breast and if the antibiotics haven't helped, then I would strongly urge you to ask for a referral to a breast specialist who can evaluate you to rule out inflammatory breast cancer. Have you checked with all of your cancer doctors? The surgeon, oncologist, and radiation oncologist may each have a different take on what it could be. Although this could well be post-cancer treatment problems, you need to be sure that it is not a recurrence of your original cancer or a new cancer. I hope you get good news and some relief from the itching.
Hi, i know this post started years ago, so i hope someone will read this. I am on week 9 of a REALLY itchy breast and nipple, nipple is all healthy looking. Had a normal mammogram and had an ultrasound that shows swelling of the breast and fluid in the breast. This itch is just awful, i rip at my skin and am bruised, and its too uncomfortable to itch my nipple, so am now doing it with kitchen roll. The itch is deep inside and comes to the surface so to speak, and i cant always relieve the itch as often i cannot find the 'right spot'? Now my Dr's are not taking this too serious because when this first started i was itching on a couple of other parts of my body as well, so they said it cant be cancer. Before christmas (2011) my boob was really hot, swollen and red, and the dr said it was thrush, but the test came back negative, so then he said i had an infection in the breast and i took a load of antibiotics. But this itching is still there, day in day out every day. I can't take much more of it. I have also got what i can only describe as hot needles poking in the outer side of this breast. There is nothing to see on the breast, no orange peel look, no lump. The other thing is, last October 2011 i just finished all my treatment for aggressive breast cancer, grade 3, i have had the tumour taken out and clear lymph nodes, 3 months of chemo, and 20 sessions of radio therapy. Now this normal mammogram, so i dont know what to think. My nan died young of breast cancer, my mu and all her sisters died of bone and lung cancer, which the drs are now questioning if they all could have been secondaries from breast cancer? What do you think ladies. x
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Dearest Phyllis,
Your story showed courage and determination of your upbeat personality, intelligence and knowledge of this insidious disease. You give so many people hope as evidenced by your story. Wishing you good health always, Mare