IBC Concern and Help

Hi vmillar96:  I'm sorry to hear that you're having some issues with your breast, it is always worrying.  Any kind of rash should get checked out, especially as you have swelling as well.  The Dr. does not know what he is talking about that you are only 30 years old and no discharge.  You should get an appointment with a breast specialist as soon as you can.  My IBC started with a rash and I was told it was 'nothing to worry about'. 

Good luck and keep in touch.  Kathy

Mine was more of a knife right through the nipple and into the chest. Sure felt like someone was stabbing me over & over again. Then it would stop for a while, then start again. Wasn't constant, but more intermitten.

I was dx with IBC in 2008.  Did your BS do a core biopsy to rule it out just in case. I believe I would ask for if he does not think it is nesscary. I  was misdiagnosis in the beginning as will. It took them 6 weeks of antibiotics which did nothing. As far as being to  young for IBC that is bullshit! IBC has been known to affect girls as young as 12 years old. It is aggressive and rare. The pain sounds  like what the other ladies have gone through. It was the same way with me. If you can fly to TX to go to M.D.  Anderson that would be great. That is there specialty, I have heard wonderful things about them. Has your skin started to dimple and look like an orange? Had your nipple started to become inverted? These are other signs to look for. Also has it started to have a fever? Please an eye on it and be instant about getting a biopsy on it. It is your body and you know what is best. I would also call your area and outside your area and ask about the Dr's who have dealt with IBC. Fight   you hired the Dr and you can also fire them anytime. I wish you the best and keep us updated.

Dear Vmillar,

I have IBC.  Some of what you have reminds me of the strangeness in my boob.  What worries me most is the rashes you have... mine looked like a streak of lipstick across my skin, it came up overnight, and all along my nipple part was peeling and itched somewhat.  The pain was shooting, the swelling got to where my boob was hard.  Still, symptoms of other problems with the breast can indeed mimic it, to be sure. 

BUT the problem is, while a good mammogram and ultrasound are good news for you, it is hard to diagnose IBC, so an expert in breast cancer, an oncologist, can tell just by looking at you if you got it, and then sometimes it also takes an MRI to make sure you have it or a skin punch biopsy.  So, good thing the Anderson Clinic is near you!!!  Plan to go there ASAP, and they will determine for certain what is going on, and then this will either be behind you or in front of you.  Being in the middle is noplace to be and I do not like how you have been treated thus far.  You are correct to be concerned and persistent.  IBC is relatively rare, plus not all docs, no matter how good they are, can recognize it.

Now, this swollen lymph gland under your arm, as you've probably already deduced, is most likely a sign of infection, plain and simple.  As I said, some things can mimic IBC symptoms, but there's a chance the lymph is swollen from trying to stop an aggressive cancer from spreading.  But your sore throat adds to the infection likelihood, as do the neck lymphs swelling up.  I did not have swollen lymphs, at least nothing I could feel, and yet I had a large area of adenopathy under there, which until they do my surgery this month, I will assume is from an old but very difficult dental infection I dealt with just a few months before I was diagnosed with both IBC and IDC cancers.  See, for all I know, my adenopathy is a cancerous group of lymphs, which lymphs do try to stop cancers and can enlarge. 

But anyway, could be your infection is not a garden variety yeast infection, rather some other wild and crazy invasion.  The medications you are taking, I think you said you were on some stuff I didn't quite understand, but it takes anti-infection drugs a few days to work... but could be you need a stronger medicine, at the very least, becauase it's just plain not good to have all these scary symptoms and someone not jumping all over it, infection or cancer or WHATever it is.

So, do phone up the M.D. Anderson Clinic tomorrow, which is Monday, get yourself on in there to get examined, and you can pretty much take what they say to the bank.  Also, if it IS infection, then complain to them bitterly about how this infection is just so problematic and troublesome for you, and no matter what they give you, it just keeps on keeping on, and the Anderson Clinic will take care of giving you much better medicine for whatever you got, and I would ask for a followup appointment in, say, 10 days, to make sure the infection subsides like it's supposed to. 

You desperately need a really great team like they got there, to take over your health for a few weeks, and get this whole thing straightened out, until you are completely well from whatever in the world is going on with your breast situation.  I have a Woman's Cancer Clinic in my town, I'm so fortunate, and I never feel safer than I do when I'm in that clinic, which when you have breast cancer or fear you do, feeling safe is in short supply.

I worry for you being in the midst of a terrible fear of cancer, it is very difficult to handle whichever way it goes, and you are going through something as tho it were cancer and THAT'S scary, and I agree you need to pursue this at the Anderson Clinic, you need experts on IBC and at least better help if it is an infection.  Your breast sounds like it is in terrible shape, whatever it is!  Let us know what happens.

GG

I hope you will be on the phone first thing in the morning to get an appointment at MD Anderson so that you can get checked out properly.  Hopefully it is not IBC but you do need to get a better medical diagnosis.  We all have different symptoms.  I never had any pain and couldnt feel any swelling in the nodes but after I had the rash, which I was told was 'nothing',  the nipple inverted, then I knew something was wrong.

Good luck and keep in touch.  Kathy 

Victoria,

Please read through all the posts on your thread. You can go to your appointment, you can request a biopsy, but if they are not familiar with IBC and if this is what you are concerned about - in my opinion, don't waste time.



You are in or near Dallas, correct? It is a quick and cheap flight to Houston. MD Anderson has a clinic that specializes in IBC. It is difficult to diagnose, especially if the healthcare professional has not seen or dealt with it before.



You can fill out a self referral on their web site and they will call or email you. We, here on the forum can not give you a diagnosis. We can not tell you what is happening or what needs to be done. We all hope it is NOT IBC, but only a professional who is knowledgeable can give you what you need now. And you are so very close to the best in the world for IBC issues.



The time you spend surfing and asking questions would be better spent by contacting them and getting the process in place. THEY can answer the questions.



Let us know how things go.

Dear VMillar,

Just wanted you to know we'll all be here when your appointment is kept in two weeks' time at MD Anderson Clinic.  And there is the Oklahoma option, too.  You may ask MD Anderson if they allow patients to bring their children with them, they may have a play center there, I just don't know, but the other ladies here will know and can PLEASE comment on that.  Because if you get all hooked up with them, IF you have cancer, it would be a good thing to take advantage of.  But in case they do not accomodate children, my dear one, you can talk to the Catholic Church in your area and explain what is going on, and they may be able to refer you to a Day Care that helps cancer patients with their child care needs for little or not money.  I know cleaning services are offered all over the country specifically to help women who are basically disabled during some of the cancer treatment avenues, so perhaps there is something like that for child care.

Oh, and relatives and SOME friends are good with children and would probably be happy to take care of your little ones whilst you go to MD Anderson, and if things go all wrong there and you do have cancer, could be you could engage them to help you further along when you have to go there more frequently for treatments.  If I weren't so sick and if I didn't live in North Carolina, I would pick up and go to your home and help you out, just like Kathy said she'd do.  So, COULD BE you need to hire an RN nurse, which is the solution I recommend the most, and get an RN maybe who is affiliated with a company that provides nursing assistance to all sorts of people, and interview a few, and find one that is just the right fit for you and your children, because I'm telling you, if you have cancer and thus get chemo and have to put up with the side effects, you'll be SO GLAD to have an RN nurse visit your home on a regular basis.  I have wished many times I had hired one just for me, so if I had had children, I think I would have gone that route.  It will cost you some money, but there ARE programs out there associated with the American Cancer Society and other cancer groups that can hook you up with some sort of financial assistance.  I have applied to one, but as yet they have not let me know if I will get help.  But so far I have kept up with my bills, but I don't know how much longer without putting together a payment plan.  Which a payment plan is something to consider if your children wind up needing looking after in a long-term situation.

I know you must be conflicted.  On the one hand, you are fearful of cancer, and rightfully so.  But on the other hand, could be your breast has improved in the last couple days, and now you are thinking, What am i getting so tore up about?  But since several of us here are aware of and have learned to live with the fearsomeness of IBC, and since you DO display some pretty unusual symptoms to just be an infection, and DOES sound in many ways like IBC, so you must still pursue the best docs in your state (and some say in the country) and the Oklahoma route, to talk to docs who KNOW what they're talking about.  My boob didn't look like all women's do that have this, but some of the remarks from some of your docs are just plain INCORRECT!  Like I said, it's hard to find a doc who knows about this IBC type of cancer, very dangerous business, so by going ahead to Anderson, you can finally find out what in the world is going on here! 

But I am REALLY hoping your visit to Anderson is a one-time deal, and that they can share your profound relief upon telling you that you do not have cancer, and hopefully they will help along the treatment of that abnormal breast for you so you'll be all well again, and then this little episode in your life will be over.  But wow, you have sure gotten a very close-up look at what it's like to be in this predicament, I look at cancer patients (including my nephew who is a 10-year survivor, and my husband and father who are decade-survivors) entirely differently now, altho my understanding how chemo for breast cancer ain't easy is not the same as treatment compared to other cancers.  But with other cancers, it doesn't sound from my relatives like they went thru what I did, but on the other hand I'm in worse shape to begin with from being disabled. 

Well, keep us posted, and keep any questions coming and feel free to just come on here and gripe and cry to us about anything that you are concerned about and your "stuck" position in this process of hurry up and wait thing on whether you got cancer or not. 

Yours truly, Gail