Anyone been misdiagnosed for 5 months?

javahog

I am almost afraid to ask this, but my mom was just diagnosed with breast cancer, and based on the symptoms, I think it is IBC. (Her now-former doctor wouldn't tell her anything after the biopsy, just hung up!). She is 67 and was treated for mastitis(!) since January. She had a biopsy last week. She will be seeing her oncologist on Thursday, and I just wonder what to say to her. She is very afraid they will hand her a hospice pamphlet and send her home...

Reading your stories here has been very hopeful and helpful so far, though! I was able to type up a list of questions for the visit thanks to you. Thank you for sharing!

S575

Yes, my cousin was un-dxed for 4 months before the IBC dx was given. She got a similar treatment of 'watch and wait' from her reg. dr. I was dx'ed the year before- and my mom was dx'ed: even with this family history no action was taken. In stepped my cousin's mom who researched and got her to oncologists who did the testing and she was properly dx'ed. So....it does happen. The thing is, once dx'ed it's a journey- take it from there- look forward and not backward. There is a lot to learn and a lot to 'put up with' so to speak. Help your mom by being by her side learning and being a sounding board for all she wants to talk out loud. It's a journey and she needs the support by her side! Help her not to be afraid, but pull together with strength! Tell her you have plans made for the future and she's included! The thing is- so many survive now b/c dx comes earlier, but also b/c treatment is better than ever. There are a lot of choices!! My cousin had a mastectomy and the full treatment, and 2 years later chose to have the other br. removed when something suspicious showed up, tho she was not dx'ed the 2nd time around- she just put an end to the worry. 8 years she is a survivor- I'm so proud of her! 

cwrightrn

Javahog---YES, IBC is frequently misdiagnosed--I know of one lady that was here on the boards that was misdiagnosed for a year because she was nursing and they thought it was mastitis.

Hope Thursday comes fast for you!!  Hang in there!

Blessings and hugs

Carole 

javahog

Thank you! I'm tearing up just because you guys answered! This is so hard, because we don't know anyone who has ibc, and all the support is based on the "normal" kind...I just don't feel like explaining, well, this is a different kind, you know...It has been such a relief to be able to tell her about you ladies! I can't wait to set her up with a computer and get her on...

 They have to TRY to treat it, right? Even with the delay? (I am just trying to figure out if I may have to go to war for her after Thursday...) She wants to be treated, and aggressively. My kids are 4 and 1, and she has plans with them.

Thanks again!

Lisa 

leisaparis

Even with the delay, it is treatable. You just have to be very aggressive at it. Depending on what stage and rather it's ER- or +, etc. etc. will depend on how they start and treat the cancer. I have IBC and am doing good. Just had surgery after 8 months of chemo. For me, I needed chemo first. This is not always the case. Sometimes it's surgery first then chemo. All the tests will determine what stage and grade your mom is at. This is a very supportive place to come to. You sound like you are headed in the right direction. A biopsy is the only way to know for sure if it's IBC. You said she already had one, but the dr. wouldn't tell her the results. Maybe he/she didn't know what they were looking at. If you can find a breast center with a lot more cases of IBC would be best. They know how to treat and how fast they need to go. Good Luck to you and your mom. Sending Blessings your way. Let us know what happens. Leisa

javahog

So, the update...this was kind of reassuring, but not, you know what I mean? First, my mom was told she had invasive ductile carcinoma by the counsellor, ER+, PR+, and Her2-. But then the oncologist heard her history of being treated for mastitis and wanted to do one more biopsy to make "sure" she does not have  ibc (is it possible to have both?)...so my mom may join you here, or another board depending on her results in the next few days. Either way, the doctor said, she will treat her. 

 And Madalyn: thanks for the warning about scans! Bone, chest and abdominal. Had she not been warned in advance, panic would have happened! It is those little things that makes a been-there-done-that priceless! So thank you, Madalyn, Bonnie, Leisa, Carole, and S575! My mother is so grateful!

Hugs, and good luck with each of your situations!

Lisa 

leisaparis

yes, it is possible, there are some women on here who have had both

mcleveland

I am not sure this is the appropriate place to reply so I will apologize in advance for intruding.  My mother was diagnosed with IBC at the end of January.  She has a very good GP who suspected it was IBC from the initial exam.  He immediately referred her for a mammogram and ultrasound.  They told her on the spot that she had breast cancer and set her up with a cancer advocate and referred her to a surgeon.  The biopsy was within a week along with a metaport.  Pathology results were performed in the OR and the surgeon was able to tell me she tested positive for IBC.  The PET Scan showed cancer present throughout her neck and chest in the lymph nodes and in the L3 vertabrae of her spine.  She had three Chemo  treatments (three weeks apart) and was told after the third that it wasn't working.  They had to wait until her white and red blood cells were back up (two transfusions) and performed a mast a week ago today.  The surgeon did not remove any of the lymph nodes.  I tried to answer the questions for signing up for this site as best as i could remember from many tests.  I guess I just wanted to know if anyone knows anything about the supposed "cadillac" of chemo not working and the following treatment of a mast without removing lymph nodes.  She has been told she will have radiation once she is healed from the surgery.  Hopefully the tube will be removed this Friday and we can move on to the next phase.  Any information you can share is greatly appreciated. 

mcleveland

Bonnie, thank you for sharing your history.  I guess this is so frustrating to everyone because every case is different.  I don't know if the doctors are doing the right treatments.  It really concerned me that they didn't take any lymph nodes when they did the mastectomy.  The surgeon said it would be "morbid"  I asked what that meant and she basically said it would potentially cause more harm than provide benefit.  She should have the drainage tube removed Friday and hopefully we will know what is next and when.  I can't tell you how much finding this website has meant to me as I am sure it means even more to those just diagnosed and those continuing the brave fight.  May God bless you all and give you strength to continue to fight.

Michele

mcleveland

Thanks Bonnie!  I appreciate all the info you can give.  I will keep you posted when we hit the next step.  For now I plan to enjoy my mother, daughter, and new grandson, this year for Mother's Day and worry about the future later.  I hope everyone has a blessed weekend and enjoy time spent with your family and friends.

Michele

javahog

HIya, Michele! I just wanted to say, no intrusion concerns! I am so sorry you are going through this with your mom, too. Cancer sucks, and IBC triply so! I wish more women knew about it and its symptoms! We are still waiting on a punch biopsy to (hopefully) rule it out, but it certainly might still rule it in. We did get one bit of good news, though: my mom's bones were clear...

 Prayers to you and your mom!

Java 

DeeSeaview

Hi~ I know I am not doing this right but I couldn't figure out how to post. I have been reading story after story and the more I read the more i am now worried.

I am 45 years old and have had "fibrocystic " breast for over 8 years. I also have extremely dense tissue so an ultrasound is also done. I am told to have enumerable cysts in both breast. I have had many issues but always told it just cystic. A year ago one grew to the size of a lemon, it was drained and was found to be fine. Last summer I noticed blood on my left bra cup then it happened after a shower. Went to my breast "specialist" and she did test to see if it was blood and it was, although she never sent it out to be tested. There was no blood the day a galactogram was ordered so I was then scheduled for a breast MRI this past August. The breast doctor called and told me everything was fine and that I should schedule an appointment in 6 months!!! I am going to see another doctor next week, I still have bloody discharge, sometimes brown sometimes red. I have many cysts and lumps from my breast to under my arms, and yesterday I noticed a larger one that must have grown just recently.

I believed the doctor that I didn't have cancer and just chalked it up to fibrocystic changes, but my mother, sister and friends won't let it be so I am going to see another breast specialist. Has anyone ever had fibrocystic breast? Is this what happens? Thank you.

Lyly1

Hello all, my name is LyLy and just turned 37 today. I am a mother of 1 daughter who will be 10 years old in a couple of weeks.



Yesterday I was trying on a new bra I purchased and noticed a red/pink blotch or spot on my left breast right above the areola. I would say that it's about the size of half dollar, maybe bigger. The area feels hot, sore and a bit stiff/hard. I googled my symptoms and the farthest thing from my mind was that the word "cancer" would appear. I am a huge researcher and read anything and everything on IBC and it made me worry big time. I told my sister about it and she got me an appointment today to see a breast surgeon. The results of that appointment was exactly what I read on the Internet about misdiagnosis, the doctor said its an infection and gave me rx for antibiotic. My mind does not feel better about that, he said that he felt what could be a nodule on the "infected" breast and my right breast hurt when he examined it. He also said "that does not look like ibc", which did not sit well with me since it can not be detected just by looking at it, mammogram or ultrasound. I've compared pictures and symptoms online and I must say, I have quite a few ibc symptoms. Any thoughts from ladies who have been misdiagnosed or know of anyone?

menan

Hi Lyly 

I was one of those misdiagnosed by 2 Drsl  The PA who first saw me thought it was IBC but not the Dr as the red spot had disappeared but they did note the orange like skin and other things so Social Security backed up my disability to these visits.  If your antibiotic takes care of it feel blessed, but be watchful and if your skin thickens and gets translucent, insist on a biopsy!!   Good luck and God Bless!

BTW I was misdiagnosed for 1 1/2 years and that was 4 1/2 years ago plus I am triple negative.  I DO BELIEVE IN MIRACLES!!

Marianne52

Hi, I was just diagnosed last week. From what I understand I will be out of work for a year. Can I apply for SS? The part that bothers me most is paying my bills. Marianne

Anonymous

Marianne,

 IBC is on the compassionate social security allowance list.  This means that with a physician's diagnosis of IBC, you are  automatically approved for social security benefits and do not have to go through the review process

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022000!opendocument

Here is some more information:

https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022000!opendocument

Anonymous

trying to make the links work:

http://community.breastcancer.org/forum/113/topic/770569?page=16#post_3081505

http://www.socialsecurity.gov/compassionateallowances/

Chickadee

Just a correction, no one is automatically approved regardless of diagnosis. You are entitled to an "expedited" review under the compassionate allowance. You are more likely to be approved and sooner than the average, but you still must provide the supporting medical evidence that your disability prevents you from working This misunderstanding keeps making the rounds.

nancyjac

Hi Chickadee,

I noticed your post because I am right down the road from you in Pflugerville.  

Also wanted to add that continuing to work while in treatment for IBC is a viable option for many people.  I took a few days off during chemo and of course when I was in the hospital for surgery, but other than that I continued working.  

mjmontana

Last week I was told I have invasive lobular, grade 1, so not a huge deal, but when I met with the surgeon today she decided it's IBC. She said looking at my test results, she was thinking I was a candidate for a lumpectomy, but after examining my films (skin thickening) and actually seeing my breast being reddish and swollen, plus some swelling in my armpit, she felt it's IBC. So regarding your situation, I'd say get another opinion. My question, for anyone out there,is: how often does it happen that they think it's IBC but it's really not:? Is there a specific test for it?

Traveltext

Very moving and thoughtful post Bon. Thanks for coming back and continuing to help the IBC newbies.

bride

Bon,

I love you. You do embody grace, hope, humor, and a profound caring. You walked and still walk with me through my journey.

bride

bride

Mj,

I live in rural Georgia, far away from Atlanta. Although my local radiologist told me I had IBC, my initial pathology report said IDC. Eventually, I learned why. From 2002 – 2012, there were only 22 cases of IBC DXed outside of the metro Atlanta area. In fact, I have done all of my treatment in Atlanta because no one in my town had treated a case of IBC in the previous 20 years.

My Atlanta cancer center redid the path report and coupled with how I presented, DXed me as IBC. The point here is that IBC can look like IDC on a cellular level but presentation and familiarity with IBC will get you where you need to be.

Personally, I'd recommend a NCI designated cancer center. As always, Bon is right, if you suspect IBC, get it ruled out.

And we'll be here for the ride.

bride

bride

Bonnie,

Right back at ya!

Johannah

tinaQualls

chickadee and nancyjac, When I got diagnosed back in 2005 with IBC I lived in Leander (what are they putting in the water!!!!) interesting thought anyway. That's not a very large area. I have since moved back to Oregon and I am happy to report I am 10 years out and cancer free!!!!