UGH!! surgeons appt was pathetic!

mzteeohh

Okay. I had my surgical consult today. And I am so upset! He examined my now 3 month affected breast and said. Wow. I was expecting worse from your mammo. Um, thanks? He then stated ibc was not a possibility as I am only 30. And only older people get it. (Yes I know this is not true) he then told me ibc is the most common bc. And if I had it my boob would be way bigger and bright red. So he suggests more antibiotics to clear up my infection. I explained that I have already had 3 rounds. And he said sometimes it takes that many. And he would follow up in 2 weeks. I was dumbfounded. But found my voice. I asked him if he would do the biopsy if 4 rounds didn't clear it up. And he just kind of looked at me. I said as nicely as I could. That 3 drs have seen me. I have a birad score of 5. I am not suggesting you aren't a good surgeon. But 3 drs have given their oppinion. I think 1 of those 3 would have known if this was mastitis. All 3 of them said it was not. So is the biopsy they sent me here too much to ask for? Well I got my biopsy. (Skin punch) should have results in 2 days. I am lost as to where I go from here. But thanks for listening!

thegoodfight

Um, was it a typo or did he really say IBC is the most common cancer?   WRONG, it is one of the rarest, IDC is the most common.   If that wasn't a typo, I would run as fast as I can.

Also, did he do more than one punch.  It is my understanding that they need a few samples to really be able to check for IBC.  I actually just had a surgical incisional biopsy to check for IBC after four bouts with an "infection" they are calling mastitis only because the do not know what it is.  What we do know now is that it is NOT  IBC but we still have no clue of what is causing the flare ups.  He said he choose surgery so they would be sure to have enough skin and tissue samples for pathology and he took quite a bit, I have a 3 to 4 inch incision.

I am not trying to scare you, I just want you to be thorough.  I have done a lot or research on IBC the last few months and I know that if they only take one punch they are only checking that one section of the breast and it might not be enough.  Please ask about this, just to be sure.  I am not a doctor, so this is just my opinion after lots of reading.

Please keep us posted and PM me if you have some questions. 

Caren

J9W

oh, that is awful. Try to get another doctor. The first surgeon whom I met with continued to call me the wrong name even after I corrected him! I left there a MESS and called everyone I knew to get recommendations for a good doc. I got a fab one after the first idiot.

Letlet

Wow..i have no nice things to say about that surgeon. I think he's an idiot for ruling our IBC because you are 30, it DOES happen to us! I don't know if that was a typo but IBC is rare and IDC is the common breast ca. I don't know why but a Birads 5 warrants a biopsy right off the bat, you shouldn't have to beg or plead..it simply has to be done.

mzteeohh

Well, it does make me feel better that I wasn't the only one who sees the the folly in his words. And no, it was not a typo. He literally said ibc is the most common breast cancer. He also said he sees it all the time. Lol really? He literally made me feel like a hypochondriac- which I am not. I have the right to have my concerns addressed! I have been looking for a good breast specialist in ohio. So if you know of any, please share! I am going to wait till I get the biopsy results. But I feel like what he did today was just patronizing me. If my mammo looked "so bad" shouldn't it be investigated? He acted like the mammo was wrong because my breast didn't look as bad as he thought it would? Yep. Antibiotics should fix that!





On another note. I have no feeling in the afftected area. I can literally poke the biopsy site and feel nothing. It was done six hours ago. I find the no sensation part odd. And he didn't even put a stitch in. So now I have a hole with "meat" popping out.

LisaAlissa

I'm so sorry that you got what sounds like a really sorry excuse for an IBC specialist.  You say you're at a loss for where to go from here.  I don't blame you.  Since you sound stunned (I would be too!), here are some things you could do:

Sounds like you need some wound care advice.  Start by calling the office of the surgeon who did the biopsy.  Say that you didn't get the biopsy site care instructions you know they meant to give you.  And do they usually not close the site with a stitch?  Tell them what you told us, that it looks like a "hole w/ "meat" popping out."  Ask how you should expect that to heal?  And do all of his biopsies result in bad scars?    

If that doesn't get you useful care advice, consider calling the referring doctor's office and tell them that you almost didn't get a biopsy (tell them your story, especially the part where he says that IBC is the most common and that he sees IBC all the time!) that they finally did a single punch biopsy, didn't close the wound with a stich and didn't even give you wound care instructions for the biopsy site!  And that you're hoping they can help. Can you e-mail them a picture of the biopsy wound site to them?  It seems to you there should have been a stitch...or instructions. 

With any luck, that will get you suitable care for the existing biopsy, and perhaps a referral to a better surgeon to continue your care.

Hang in there!

LisaAlissa 

Denise2730

I agree 100% with LisaAlissa.

Some doctors are real jerks. The first general surgeon I saw (who came highly recommended), walked in to the exam room where my mother and I had been waiting for about an hour and the first words out of his mouth were "which one of you is Denise"? WTH?  You don't introduce yourself or apologize for the wait PLUS he seemed annoyed that I was pacing in the exam room. He wanted to so surgery in a week but luckily I got a 2nd opinion from a wonderful surgeon.

When I called to cancel the surgery and told the recept I was using another surgeon she asked why and I told her exactly what I just posted.

You must have a doctor you are confident about and comfortable with. You are going putting your life in this doctor's hands.

Let us know what happens.

Denise

mzteeohh

I am so glad some one can keep a level head! I am going to call and talk to them asap! I was telling my mom about it. And she insisted I go somewhere else asap. Her friend had begged for a mammo when she was in her 40s and they wouldn't give her one. Said she didn't need it. she didn't find out she had cancer until it invaded her bones, lungs and liver. I'm not really close to my mom, but it feels good to know she's on my side! I have gotten so much support from so many. It makes this fight more bearable. I have already gotten 3 referrals to surgeons in my area. It is so much easer to fight when you have people fighting for you!

chester2010

I can't believe a surgeon would make that statement that only old people get IBC - and that it is the most common.  I hope you can get a referral to a Breast Cancer specialist who knows what he's talking about.  I also wonder why he didnt put a stitch in the biopsy area.  It sounds as if he needs to return to medical school.  Good luck with the results but I hope you will refer to a more competent Dr.

mzteeohh

So, I did call the office to speak with a nurse. I left a voicemail. Waiting to see when I get a call back. Yes, I would be hesitent to take my dog to this dr. Let alone put my breast in his hands so to speak. A call to a breast cancer specialist, and they can see me tomorrow. I adv them on the biopsy. And I will be making an appointment as soon as I get the results. His office was apalled at my experience today. And are going to do every test they can until I get the answers I need.

Kaara

This is why I would rather stick a pin in my eye than visit a new doctor!  I had one visit me in the hospital once..never saw him before in my life...and tried to put me on anti depressants and sleeping pills!  I said I wasn't depressed and he said "well, you don't know you're depressed".  My boyfriend told him to take a hike!

mzteeeohh:  You did the best possible thing by coming to this site...find yourself another breast specialist.  You will never trust anything this other guy does...he sounds incompetent to me. 

mzteeohh

Okay. Surgeons office just called. She asked if I had questions about care instructions. I told her th at I didn't get any, and that was why I was calling.

Her- you didn't get an after care packet?

Me- no.

Her- and they did a biposy?

Me- yes.

Her? Okay. Well what are your question?

Me- well I have this little hole in my boob now that is oozing and has meat like popping out of it.

Her- did your stitch fall out?

Me- I don't have a stitch. I was concerned it wouldn't heal very well and leave an ugly scar.

Her- you mean he didn't even stitch it? It it red? Hot? Hold on please. I gotta make a call. Hold music for 5 minutes. There are no special instructions.

Me- so everything is fine? I just get a little seeping hole?

Her- it will close up on its own.

Me- is there anything to look out for such as sign of infection?

Her- no, its normal.





Me- so glad to be going to another surgeon! Also, called the local er. Explained the whole thing to them. And the charge nurse faxed me a list of instructions I should have gotten.

LisaAlissa

Good for you!  And I'm awfully glad you're going to see a breast cancer specialist tomorrow.  

Best wishes (for fast, scar-less healing and a quick resolution to your concerns),

LisaAlissa

Laura_Jean

Yes, he sounds pathetic! So much wrong information in such a short time - amazing. 

 As I;m sure you know (and others here have said), IBC is one the rarest breast cancers and strikes MORE younger women that other types - so two strikes against him right there.

Also, from my own experience, my IBC did NOT show AT ALL on a mammogram even though there was a 2 by 3 tumor on the MRI. AND the first skin punch biposy I got came back negative, since the wrong part of the breast was punched. The second skin punch, in a different part of the breast, did come back positive.

So glad that you are finding another doctor!

Please let us know how that works out.

Laura Jean 

thegoodfight

I think it is unanimous that you need to get another dr.and it sounds like you are making that happen.  I am so angry that someone so incompetent is dispensing misinformation on such an important and serious condition.  Obviously the most important thing is to get you to a doctor who knows what he is talking about.  But I am concerned that other women will have to endure what you have already experienced.  I think you need to make a formal complaint.   I know you are consumed with getting your diagnosis and any treatment if needed.  Of course we are all praying for benign and hope the aggravation you have had is the worst of it.  But we have a responsibility to report a doctor who appears to be so misinformed.  I really don't know where you bring this info.  Maybe another poster has some info.  Please, please take care of you first, but when the dust settles make others aware of what took place.   You might want to write it all down while it is fresh in your head, and of course it is documented here on this site.   Maybe the moderaters can shed some light on what to do.   I wish you a good visit with the new surgeon and praying for a good outcome.................Caren

mzteeohh

Thegoodfight- I sent you a pm. I have every intention to follow through with contacting I assume the medical board in reguards to said surgeon. I wrote everything in my handy dandy notebook! Thank ]od I had read up on the subject. And I knew he was incorrect! I couldn't trust myself to open my mouth and argue with him. But first thing in the morning calls will be made. And literature on ibc will be dropped off at his office!

dlb823

mz, I don't normally post on IBC threads, but I just have to tell you how impressed and proud I am with the way you're handling this challenge!   As everyone agrees, the surgeon you saw today sounds incredibly bad and scarily misinformed about IBC, and the fact that he sent you off without wound care instructions is incredulous.  (By the way, ice is normally recommended after a biopsy to prevent swelling, so if you haven't done that yet, you might want to try it for short periods -- like 20 mins. at a time -- to see if it helps.)

I will pray that you don't have IBC or any other kind of bc.  But kudos to you for taking responsibility for your health, and for not letting the disappointing experience you had today sidetrack you from your quest for answers!    (((Hugz)))   Deanna 

mzteeohh

Ok. I posted on waiting for results. But wanted to update here as well. I was supposed to call in for biopsy results today. But the nurse called me this morning. All of the results are not in yet. But she said I need to find an onc. She couldn't or wouldn't give me any more info. But I am supposed to call back and talk to the dr after lunch. I honnestly kinda feel relieved. I don't have to justify myself, or defend my symptoms. I can stop fighting to be heard and start fighting this thing in my body.

Claudia413

No one should have to go through what you went through trying to get a proper diagnosis. That is why I got so involved in volunteering with the Inflammatory Breast Cancer Foundation. I heard so many stories like yours, with some variations at times, that it just made me ill. If you need more brochures to pass out to the doctors in your area (and to other women and men), please call the toll-free number at www.eraseibc.com and ask for brochures. In the meantime, you can print out brochures at home also.

That surgeon could sure use a good education about IBC and you just might be the one to do it. Good luck with the rest of your treatment. 

mzteeohh

Well, I found out that my sample was sent to cleveland clinic for verification this weekend. I have made calls this morning and the dr confirmed the path. Says ibc. However it has to be verified by someone else. Which is why they sent it the cleveland clinic. He also apologized to me, as he was unfamiliar with the symptoms. He said he researched it all weekend, and has cosulted with a specialist. I asked about seeing an onc, and he said that they will have to have the path report.

dlb823

I wonder if your surgeon came across BCO and this thread while researching IBC?

On a more serious note, I'm so sorry that IBC seems to be at least the initial finding.  Hopefully, if it's correct, your pushing for an answer has found it extremely early.   But certainly not what any of were hoping for, and while you may feel somewhat vindicated for being right (if IBC is confirmed), I wish there could be another explanation.   Deanna

Laura_Jean

I;m sorry to hear about your diagnosis.

www.ibcsupport.org is a great site for more IBC information and a lot of great women who have been through IBC treatment. Many of them are doing well years after diagnosis and treatment and their stories are very encouraging.

Wishing you the best, 

Laura Jean 

amandabrown30

I had a similar experience today with my surgeon. He says because I am young (30 years old) and my great grandmother died of breast cancer ( not close enough linked family member to count as he put it) the chances of it being ibc are pretty much impossible. I just dont understand how I have seen 4 doctors and no one seems to know what this is, but it cant possibly be cancer?? How does he know?? I refuse to accept it until the biopsy is done because I have heard wayyy too many times that a doctor told them there way no way it could be and sure enough it ended up being that they had it.

pegaroo

Have you heard from the Cleveland Clinic? Just so you know there are IBC specific clinics around the states that wonderful. Go to eraseibc.com and click on the tab on the left Research & Clinics, hopefully there is one close to you. PM me if you need more information. I travel from MI to PA, used to go to TX so travel isn't an issue...I get a free flight so don't let money stop you if you want to go. When I was diagnosed and I eventually made my way to an IBC clinic those around me were questioning why...here is why: If I have a problems with brakes on my car I don't go to a transmission shop....

Let me know if I can help in anyway... 

Peggy 

anonymice

mzteeoh, when you get another surgeon, PLEASE PLEASE PM me your moron surgeon's name and address.  Good gravy.  He needs educated immediately.

I won't be insulting, I'm a clinical consultant and know all the right words to use.  

Claudia413

Definitely give that doctor's info to Pamonymous...I would NOT use the right words. I'm so upset I could cry.  This just isn't right, and this is why I volunteer with the Inflammatory Breast Cancer Foundation (www.eraseibc.com). I educate anyone and everyone, every chance I get. You should hear me telling a telemarketer that I'll listen to them if they listen to me first. I've really found something to keep me busy in my retirement.