Can symptoms come and go?

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willowswhiten
willowswhiten Member Posts: 6
edited June 2014 in IBC (Inflammatory Breast Cancer)

If a woman has IBC, can symptoms come and go? I have an itchy rash that seems to come out of nowhere.  It happens every few weeks, and it gets really red and itchy, but then it goes away after a few hours.  I also experience pain extending from the rash area (which is on the top of my right breast, where the breast meets with my actual chest, if that makes sense) down to my right armpit, and the pain is there a lot, even when the rash isn't. My right nipple is also flat right now, and it usually isn't.

Both of my breasts seem strange, though.  My right breast looks more significantly bigger than the left one than it ever has in the past, but they both feel hard, and the left actually feels harder than the right in a specific spot.  I don't think I've experienced a rash on my left breast, but it hurts more often than the right one. My left nipple has always been inverted so the flatness there is normal for me.

 And I know irregular periods are not associated with IBC (at least from what I've read), but I should probably mention this in case there's something else you can suggest I look into when I go see another doctor (so far I've been through a million different kinds of specialists because of other weird symptoms I've been having). I have not had my period since March 7, and it is now June 8. There is no chance for pregnancy since I've never had sex and I haven't been artificially inseminated, unless no one told me. ;) I'll have blood work tomorrow that should let me know if PCOS is a problem. Could PCOS be causing the symptoms in my breasts, though?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2011

    Bumping for willows..

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited June 2011

    I personally have not heard that itching and rash go away with IBC, it supposed to only get worse, but you should have it checked out.  Something does appear to be wrong.

    Terri

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  • willowswhiten
    willowswhiten Member Posts: 6
    edited June 2011

    Thanks for the bump, dlb823!

     ibcmets, the rashing doesn't necessarily go away anymore. Now it just seems to fade or get redder. :/

     Also, my blood work came back, as well as my abdominal ultrasound, and I do not have PCOS. I have seen every specialist I can think of seeing and I still have no idea what is going on with me. This was a previous post of mine detailing what is going on with me. I still don't have an answer and I'm really just lost at what I should do next, and none of my doctors have any advice on different specialists to go to. They all just say, "well my specialty is ___ so that's all I can help you with." I understand they can't give me answers about something if it doesn't deal with their field, but I was really hoping they'd at least be able to tell me which field to try next.

     Normally I'm not very negative about anything but I'm feeling very overwhelmed, lost, and frustrated. It was okay before because I could at least see a possibility of a solution, but with no one else to see, I feel like I'm at a dead end when it comes to trying to get some sort of answer for everything that's wrong.

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  • leisaparis
    leisaparis Member Posts: 587
    edited June 2011

    Have you seen a breast specialist? You say you've seen several specialists, but was anyone of them a breast specialist? If not, you really need to see one. Have a biopsy done. With IBC, 99.9% of the time there is no lump. There are several symptoms and not everyone gets them all. I have heard of some of the women on here saying that their rash came & went over a small period of time. One gal had it happen for 6 months. However when they finally found out she had IBC, she was at stage 4. So, not good to wait and see. You really need to find someone who will get you to a breast specialist. When you do, tell them you are concerned @ it being IBC and get it ruled out. God Bless & good Luck.   Leisa

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  • willowswhiten
    willowswhiten Member Posts: 6
    edited June 2011

    No, I have not. This is probably a dumb question, but how do I find a specific breast specialist? Should I just ask one of my doctors?

     I'm getting more concerned now. My breast with the recurring rash is significantly bigger than my left. I can't fit it into a bra that I bought in May, but I've lost weight since then and my left breast fits into it fine, so something must be wrong.  It might not be as serious as cancer, but I definitely need to get it checked out. 

    Also, the last three times I took a hot shower, the rash reappeared and I jumped back from the water because the area itched and hurt as soon as the hot water hit it. Otherwise, the itching and pain come at random times. It can be so distracting that I have to leave the room because I can't focus on my conversations at all. It often happens at night, too. That was the first time I noticed the rash, but it was gone when I woke up in the morning. Has anyone heard of this issue before, whether involving IBC or some other breast problem?

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  • rachel5738
    rachel5738 Member Posts: 920
    edited June 2011

    Hi Willow--I have similar issue right now. Was diagnosed with IDC last year in right breast--had lumpectomy, chemo, radiation. Then about a month ago my left breast became extremely achey, itchy and seems larger than before. The ache extends into my armpit area. I am concerned and heading to my GP tomorrow. I hate that I have to get something checked again. I called my oncologist last week and gave him the symptoms (I have followup onco appt 3rd week in July) and he said that he wasn't concerned of my symptoms. I am still heading to my GP as my mind is worried about it. From what I have googled (probably big mistake...googling is worst thing), it keeps popping up with IBC--I keep telling myself what are the chances? Will wait and see what my GP tells me tomorrow. 

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  • leisaparis
    leisaparis Member Posts: 587
    edited June 2011

    Willow - do you have a cancer center nearby? You don't say where you are from. Are you from the US? If so, call the American cancer Society and they can tell you your closest center. Or just google cancer centers and it should give you locations. I do have IBC and know it's very aggressive. Hopefully that's not what you have, but it sounds very suspicious.

    Rachel -  I'm very surprised that your onc isn't concerned @ your new symptoms. There are so many women on here who have gotten IBC after having another cancer. Does your GP know the symptoms for IBC? If not, maybe print out some info and take with you.

    Good Luck gals. Best of Luck to you both.   Leisa

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  • chalex
    chalex Member Posts: 131
    edited June 2011

    Hi Ladies,

    When you talk about a rash. I have an itchy rash under my left underarm. I thought it was maybe razor burn b/c it comes and goes. I also have soreness around my left breast like in the rib area and the sternum. Pain similar to a trigger point.

    I think I am making more of this but just wondering if anyone knows if is possible to have a itchy like rash under your arm and not on the breast for IBC.

    Take Care,

    Chalex

    Diagnosis: Aug, 2009, IDC, (right side), 7cm, Grade 3, 0/15 nodes, ER+/PR+, HER+

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  • willowswhiten
    willowswhiten Member Posts: 6
    edited June 2011

    So here's an update for me: Now the rash is more persistent, so it's there everyday. The pain I'm experiencing starts where the itch is and extends over to my underarm. Today, I even felt shooting pain going up to my neck, and my neck feels puffy on the sides even now

    You can't see it very well with the picture I took on my Dell, but this is how my breasts look in my bra: http://pics.livejournal.com/willowswhiten11/pic/000013bz Now, just to make sure I'm not just imagining it, can everyone see the significant size difference between breasts A and B? They are in the bra the same way, but breast B is definitely bigger. The rash started at the area that the arrow close to breast A is pointing to. Now it's going around the top of my breast.

    I'm seeing a breast specialist next week, but I thought I'd post just to get some insight from people who have experienced IBC. I could just have a weird rash or an infection or something.

    This might be a stupid question, and please don't think I'm diagnosing myself with cancer already, but I want to know anyway: if a person had metastatic IBC, could it metastasize and show symptoms elsewhere before the person actually had the rash/itchiness associated with IBC?

    Thank you all for being so understanding and helpful!

    rachel5738- How did everything turn out for you? Did you get any answers?

     leisaparis- I am from the US, in PA. Thanks for your advice. I will go do that now!

     chalex- I hope someone can answer your question! I'm sorry that I don't have an answer for you.

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  • rachel5738
    rachel5738 Member Posts: 920
    edited June 2011

    Hi Willow---Your breast does look bigger on one side but I am guessing that could be many things including hormones or infection etc. Like everyone does say, get it checked out and then you will have some peace of mind.

    I went to the Doc this week and they took a look and say it doesn't look like anything concerning. I have all my followup in July (scans etc). The Doc did give me an anti-inflammatory for the pain etc and it seems to be helping in just the couple of days that I have taken it. It is so hard because I worry about it being worse than it is....but I have seen my Doc and Onco. I know that my mind races down the tracks toward something wrong pretty regularly. Keep us posted.

    Chalex--I have had soreness on my ribs for a long time---had scans and bone scans so they could check and nothing was there....Not sure if you are on Tamox but maybe that? My Doc said it could be inflammation? 

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Error

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Willow

     What you describe is remarkably similar to how my rash started, initially it  would flare up red then die down it was not itchy to start, then noticed some times the nipple falls flat other times its more normal. I had to have a biopsy to know it was recurrent cancer, but am still told its IDC but I am fighting to find out more as I am convinced its IBC not least as the skin has thickened the rash came on suddenly and has spread fast. They have said its in the dermal lymphatics which could mean same as IBC but need to do more research to know that.

    Really good luck and pray yours is not IBC.

    Diagnosis: 5/11/2009, IDC, 3cm, Stage IIIb, Grade 3, 19/19 nodes, ER-/PR-, HER2-
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  • ma111
    ma111 Member Posts: 1,376
    edited June 2011

    Willow,

    I didn't look at your pictures, but what you describe sounds very simialar to mine. Even the way the itch comes and goes. Sometimes mine is also raised. It can be a mix of IBC with lymphadema and skin mets. Radiation dermitis is also a consideration if you had rads. Now that I am on vaccine and low dose Taxotere, I have cleared up and my breast is lighter. Very little evidence of rash, no more itching. I did not have the bumps you read about, just raised flat rash and flat nipple that did not retract.

    The come and go can be due to lymphadema.

    A good note- they have had such good succes with vaccine trails that they are studing them in the neoadjuntive setting. Your average doctor doesn't know this. I had a disease reduction with just the vaccine when i progressed, so this would provide you with an extra boost to teach your immune system to fight the cancer. It's a lot of work to get on a trail, but worth it. You have to sign a bunch of papers and extra blood work etc. I forget who is running the one that would work for you but found it at clinicaltrails.gov. Type in breast cancer vaccine. The one I am in helps pay for travel and lodging, not all do.

    Please feel free to send me a personal message with any questions.

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Ma111

    I see you mention the trial you get some costs paid for, does the insurance company still have to pay for the treatment or is that free on a trial? Apologies for my ignorance. But am in the UK and options here seem limited to say the least.

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  • ma111
    ma111 Member Posts: 1,376
    edited June 2011

    Tex2009, I am glad you asked because not all trails are covered. The ones at the National institute of Health, (NIH), are free and they help pay for travel. They also accept people from whatever country you are from. clinicaltrails.gov, click the nih and you can e-mail them directly from the site. i noticed you are in the United Kingdom, they will take you if you qualify for the study. On week days they get back to an e-mail the same day.

    I think places like john hopkins charges your insurance, the NIH doesn't and covers all cost of the trail. On the site there were trails in Irseal also. I find it a good thaing that all the countries are working toghether.

    If you get on a trail here, let me know. I would be cool to catch up with you.

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  • TEK2009
    TEK2009 Member Posts: 62
    edited June 2011

    Ma111

     Thats great thanks a million will look into it.

    T

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  • ma111
    ma111 Member Posts: 1,376
    edited June 2011

    T,

    Your welcome and good luck, hope to see you there.

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