Possible Skin biopsy for IBC

runalot08

Alright ladies I am back.  I have done a few posts before.  My first one was about swelling and pain in my left breast with a pea size lump under the areola at about the 8 O'Clock spot.  They biopsied that last month and it came back benign.  Since then I have had increased pain and the swelling has gotten worse in that breast.  I knew that I had two enlarged nodes one under each arm. 

Yesterday, I had another appt. and finally a wonderful doc. (We are military overseas and I have seen four Doc's about this since July...  The doc's keep moving!!)  My breast was more swollen than the last time I was in to the doc. and she found that more nodes were popping up under my left arm. (small)  While she was doing the exam the way I had my arm laying it started to hurt then she pushed on some spots that sent nerve pain shooting through my arm pit.  She agreed that the breast is indeed swollen but the redness was not there.  It tends to come and go.

Her plan is to rule out infection and put me on z-pak antibiotics.  If this does not work then she is going to schedule the OR and do skin a biopsy  for IBC.  She said she would take part of the areola, the edge of the areola, and part of the boob all in one slice.  My question is... Is there a best place for these kind of biopsies?  I know that if they do not get the right part it can come back negative even though it is there.  I told her that at this point I really do not care what my boob looks like and can she take multiple slices?  She kind of giggled so I am not sure if she will.

Since I started the antibiotics yesterday my breast has gotten worse.  Larger more pain it is actually in my shoulder and arm at times.  I am starting to get scared of what I have been thinking since August before the first biopsy.

Any suggestions or knowledge of the best area to be biopsied?  I have posted this in the high risk forum and the IBC section also in case they have ideas since they have already gone through the diagnosis and biopsy stage too.

Thank you everyone!

shrink

As far as I know, any area of thickness or hardness should be biopsied and a skin biopsy should be taken from areas where there is redness.  Is the doctor a breast surgeon?  My skin biopsy came gack negative but I was still diagnosed with IBC from clinical symptoms.  The core biopsy revealed that I had IDC and ILC as well.  Lots of luck.

runalot08

Shrink,

No the doc is not a breast surgeon.  They have no specialty areas where we are located.  The lady is a general surgery doc that does breast issues also.  (she seems to know more about what she is doing than the other three I have seen in the past couple of months)  They do not refer here either so I would have to leave the island if I needed more advanced care.  Wish I were back in the states for this!!  Did you have the core biopsy because you had a lump also or did they do that in the areas of thickness? 

younggrandmaof2

runalot08,

I too have had a skin biopsy about 2 weeks ago with negative results, but she only took one sample.  I have since gone to my gyn because the cream the other doctor gave me did nothing and I was still concerned after speaking with several people on this web site.  The information you get from this site is awesome and the people are wonderful.  I have had no orange texture skin, just inflammation, a rash, itching and pain.  My gyn has sent me to see a radiologist that specializes in breast issues for further tests.  I go today at 1:30 and yes, I am scared as well.  By all means you should pursue any means you can to confirm benign results.

 I wish you the best results possible...you will be in my prayers.

runalot08

Younggrandmaof2,

Sounds almost identical to my symptoms.  No orange peel either.  Does your redness come and go or is it always there?  My swelling stays all the time but the pain is probably about 70 percent of the day.  The rash is occasional with the itching.  Today was the last day of the antibiotics and no change:(  I was hoping.  I am going to insist on multiple biopsy spots.  I also want some of my nodes (they have not gone down in size at all maybe a bit bigger) asperated that would tell more too?  (I hope?)  They have no MRI or CT or anything here.  So if it comes back negative and the symptoms still persist there is not much left here for diagnosing.  I have no idea how far this gets before they send me off island to get help.  I am guessing not untill there are much worse signs...unfortunatly that means if it is IBC it will be further along before treatment.   Oh well lets hope it is something else. 

I hope your radiologist appt went well.  Tell me what they did or how it came out.  We have radiologists here just not the equipment for high tech stuff. 

I pray to hear good news from you.   Runalot

prestressed

Hi there      is there anyone   after  the duct removal  that  sores have produced ?    the  ducts were removed  and  there was no where  for the discharge to go ?   it has  happened to me   i need to   find someone with the same     because i am getting no where  with  treatment.   I have  pics    any help is  very appreciated .

shrink

I didn't really have a lump that I could feel.  It was an area of thickness.   Since IBC is relatively rare, and since many doctors don't know much about it, I'd go off that island and get some expert advice.  Left untreated, the disease can progress rapidly.  I wish you the best.  Try ibcsupport.org.  The women on that site are very knowledgeable.

Jessica29

I agree with shrink.

I didn't have a lump, signs were redness, pain and swelling. Orange peel effect came much later for me. They took 6 biopsy samples from my breast as of course nothing showed on mammo or ultrasound scan.

I would not waste anytime in getting myself to a hospital where you can have all the necessary tests to rule out IBC, especially if the antibiotics are not having any effect.

I wish you all the best, please let us know how you get on,

Jessica x

rosied51

I also have redness in my right breast,  the center of my nipples are paler in color almost white, the skin around the nipples gathers up like a dried up fruit and the burning is unreal, and now I have increased pain in my right armpit, waiting for tests results to come back, sitting on needles & pins.

runalot08

Well be sure to let us know rosied51. 

I see the doc tomorrow to discuss the biopsy.  Unfortunately the antibiotics did nothing:( I was really hoping.  Thank you all for your posts I will let you know what comes of tomorrows appointment.

Jessica29

Thinking of you rosied51.

Will be looking out for your post.

Jessica x

runalot08

Well saw the doc and I will tell you it is a great feeling to like your doctor and feel that they are really interested in your situation.  I also feel like she knows what she is talking about.  Sorry just had to get that out there I see so many bad ones it is good to get a good one.

My nodes are bigger and more abundant since last week even after the antibiotics.  Breast is the same the redness is still sporadic.  Basically no change except in the nodes.

The Doc's plan is on Wed I get a diagnostic mammo.  She wants both sides and the nodes to compare.  If she does not get what she wants out of that we are heading to the CT.  Then biopsy.  Maybe biopsy after mammo if no CT is needed. 

Does that sound right?  Will the CT be good for this kind of cancer detection?  The DR. is knowledgeable about IBC and the fact that many times it is visually diagnosed.  She is being very proactive since we know that it is not an infection.  She was honest and said that she was more worried that it could be cancer than a chronic breast infection.

I love honesty!  Of course I am worried.  However, I just want to find what it is and get on with the fight if it is IBC or take care of what it is if it is not.  I think I am plain ready to fight.  Is a mad a normal feeling?  I think I am mad.

I will post after Wednesday!  Wish us luck either way. (Me and my Boob)

younggrandmaof2

Runalot,

I think your doc sounds like she is pretty on top of things.  I'm glad you have confidence in her.  My appointment was good I guess...kind of frustrating...he seemed thorough but all they did was a bilateral mammogram and said he could not see any symptoms of IBC (which is good I suppose), except for the fact that from what I have read...you can't find IBC from a mammogram.  I cannot make anyone do another test so my situation continues status quo unless it gets worse then maybe someone will check it out.  I go back to the gyn in December so until then I will just sit back and wait to see what he says.

I'm glad they are pursuing a CT scan and biopsy.  I pray you get good results as well.  You will be in my prayers.

runalot08

Youngran

 I think that if the radiologists know what they are looking for then they can find these subtle changes in the skin/boob.  However, I keep hearing about it being missed as well.  Probably because they aren't specifically looking for the changes associated with IBC.  I am hoping that your radiologist knew he/she was supposed to be looking for signs of IBC.  I really have no idea as to the effectiveness of US and Mammo's I only know what I read and we probably have read the same things:)

That is good that they found nothing but I find it frustrating for you because they need to do something to figure out what is wrong not just sit on it.  Even if it is not IBC then there is something going on and something should be done for you to find out what it is.  I don't think I would wait till December.  I understand that some people have to wait because of insurance.  I actually have made myself kind of a nuisance.  Not horribly but enough for the doc's to see I was not going away.  My situation may be different though being associated with the military and out of the country.

Youngran how long have you had your symptoms? Do you have swollen nodes?  I think that just the swollen and  painful boob with some occasional redness was not enough for my four different docs to really pursue.(should have been)  But when I met the last( and the one I will keep) the 2 nodes (one on each side) became 5 or 6 on the swollen side she became more receptive.  That is when she gave me the antibiotics for a rule out of infection.  Then going back yesterday 2 days after antibiotics and the nodes not only were still there but more and bigger she is more concerned.  

Since I have heard the same thing as you with the mammo's, I asked my doctor and said point blank to her, "do the radiologists downstairs know what they are looking for with IBC because I have read that it really is nothing to see just diffusion and increased density" she said that they did.  I don't feel comfortable that they would see it on a normal day.  However since she is having them look for specific things and we are going against a mammo I had taken in June right before things started happening I hope we will get a correct finding either way. 

younggrandmaof2

I hope you get good results.  I have had the rash for about 8 months...tenderness just started about 6 weeks ago, I am watching myself closely and waiting to see if there are any changes.  If I see anything different at all I will become more of a nuisance than I have been.  Please keep me posted and take care of yourself.  Let me know if you get any more information from your doctor that might spread some light on the subject for the rest of us.  Stay in touch

Jessica29

Hello runalot,

 I'm so pleased you have confidence in your doc. I think this is SO important.

I want to wish you all the best for your upcoming tests. Mammos cannot detect IBC, but obviously they  usually can spot any other abnormalities. However, the biopsy will confirm a dx of IBC (or not, as the case may be!) The CT scan will look at the rest of your body and what is happening with your lymph nodes so your doc has indeed ordered the best of tests.

I do not think you are mad at all.

I know I felt much better when I knew what my treatment plan was, up to then I'd felt only fear. Once treatment began I felt I was fighting back and there could only be one winner!

Take Care,

Jessica x 

runalot08

Hello Friends,

Yesterday I got the fullest treatment I have ever had at a military hosp.  Started the morning with a mammo.  Of course as we were hoping it came back as not really changed since the last one.  At least that relieves the stress of something else going on that we are not looking for.  I know that it does not do well with IBC but at least it, as Jessica mentioned, did not show up any other abnormalities.

They did a CT to see/rule out if there was anything wrong with my implants or any kind of infection at all.  Nothing!  So we know that I do not have an infection from my head to my waist. I do have swollen nodes though about 2 on one side and then about 6 on the side that is in question.  They are all hovering at around 1.4 cm and under but not going down.  They are going to watch them because they are not like rocks and not over 1.5cm.  That is thier cut off for worrying about them. 

The Doc will do a skin biopsy this Monday.  After that I do not think there are any other problems to rule out.  Have any of you ever had all the tests come back clean just to find out later you had IBC and they could not diagnose till there were more signs?

If the skin comes back clean what else is there to look for to get rid of this painful uninvited friend of mine.

As we all know, I will have to wait awhile for biopsy results after Monday's surgery.  So I guess I wont have any new info till at least Monday.  I will keep up here because I love reading everyones support and stories it really shows how strong people. 

Thanks all I will keep you posted:)  Runalot

runalot08

Alright, tomorrow is the big day.  0600 general surgery unit here I come!!!

The doc said she is going to take out a moon shape from around my areola.  It will have the white skin of the breast and move all the way into the areola and get dark skin.  I think she said she was going to go from about 7o'clock position to the 11o'clock position.  That is a big area and should hopefully be the right area.  I am going to ask her to take out a node too.  She said why she did not want to but I do not remember why it was.  I think that eventually they will have to take one out any way even if it is not IBC to find out what is going on.  So why not do it while I am there and on the drugs instead of bringing me in again.  We'll see.  She is a good lady and being proactive with in reason. 

My boob is actually a little worse what better time for her to do her work.  I will post again and tell how it went.  Wish me luck!

Runalot

Jessica29

Lots of luck to you Runalot, come back soon and let us know how you're getting on.

Take Care,

Jessica x

runalot08

Surgery went well!!  I am wrapped like a mummy on my chest for swelling.  I have my follow up and results in a on the 18th.  I did not get her to take nodes out but we will see what becomes of the sample they did get.  I think it will come back negative then we will have to rack our brains to figure out other causes for my mess.  Keep your fingers crossed.  It's wierd but I have a good feeling and am not really as nervous as I thought I would be.  Maybe it is the pain medication

Runalot

Jessica29

Take Care Runalot,

 Thinking of you and hoping for good results on the 18th. Stay with the 'good' feeling, our instincts are very powerful.

 Jessica x

runalot08

Jessica, thank you for your thoughts. 

 I appreciate the support and information I get from this board immensely.  My gut told me from day one (August) when my breast started to swell and hurt that it was IBC.  Right now I think the results will come back negative can you have two core feelings?  A gut and a deep feeling that conflict.  Oh well.  If my pathology comes back positive can I PM you and will you tell me how all your treatment got started.  I am scared that I will have to stay with military docs instead of finding some great breast center and that I mightnot get the most aggressive plan.  I, like many stories I read, am not so worried about me but I have an 8yr old girl, a 11 yr old boy, as well as a hubby that I worry about.  I wan't the best so that I can give them my best.  Do not want to get off subject but would that be o.k.? 

Jessica29

Of course, No problem at all hun.

Jessica xx

younggrandmaof2

Runalot,

I'm glad your surgery went well and you are just a few days from the 18th.  You have been in my thoughts and prayers and I think you should go with that second feeling of yours for benign results.  At any rate...keep us posted!

runalot08

YoungGran,

Thanks for your thoughts I am still optimistic that I will get good reports.  However, I will be in a boat like you.  Get a good result but still need to find out what is causing the problems if it is not IBC (I have read some of your other posts:)  I admittedly am getting more anxious.  I seem to have to wait so much longer than some of the other posts.  Enjoy your vacation.  We love Disney...can't wait to go to Tokyo Disney myself.

Runalot

younggrandmaof2

Runalot,

Stay positive...I think right now that is the key.  Keep us posted on your results.  We will pray for the best.

runalot08

Results of the skin biopsy are in and they are negative for cancer or IBC.  The doctor said that with all the tests and the biopsy that she is confident in saying that she does not think that I have IBC.  Of course that does not solve the problem but is very good to hear. 

The doctor wants to do the wait and see thing.  I have another follow up next week.  (I should be able to run again that is my stress relief and I have not been able to do it) 

While still watching the nodes and any other signs of IBC She is moving in 2 directions one of the implant being a problem.  Not that I am allergic or a capsular constriction but that my body just does not want it.  The other is a possible histamine reaction?  Seems kind of weird for it to suddenly appear.  With just a rash I could see it but the swelling?

Any suggestions from those out there as to what we can look into would be awesome!

I am very glad that I am not on the back burner as some of the other women out there that have negative biopsies.  Just because a biopsy comes back clean does not mean that a woman should no longer have a problem and the painful symptoms.  I will find out what is wrong eventually.

Thank you to everyone out there who thought of me and my family.  I will keep posting as we go if I find out anything that could be of use to others and as always I will keep reading and thinking of everyone on this wonderful site. 

Runalot

younggrandmaof2

Great news...enjoy your run...now that you have them hunting for the issue I'm sure they will find out what is wrong.  Take care

Jessica29

 Terrific news  re no cancer runalot.

Now lets hope they can get to the root of the problem quickly for you.

Take Care,

Jessica x

runalot08

Thanks ladies for all the support and best wishes.  It is really nice to have people to talk to or ask questions. (or vent)  My friends are all back in the states as well as family so this web site is it till I find out what is wrong.  My Hubby is great but does not feel the same as me....I guess because he is a deal with it when you get it person.  Not as pro active to find out what is going on.  Or do the what if thing.  I think he thought I was paddling a boat up the wrong river when I started talking about IBC till he went to the doc with me and she was a bit worried too.  That woke him up.  He is really my best friend we just have differing views on medical stuff.

Really, thank you for the time you take to share with others your experience and knowledge.  With out people like you...people like me would be alone.

Runalot

rosied51

That is great news but now let us get to the root of your problem.