delayed diagnosis, waiting for mri (19 months after lump found)

cathferra

Hello everyone,

 I've been reading the boards for a few weeks.  I pray you are all doing well. 

 I'm in a sort of odd predicament that I'm looking for info on.  In September 2010 I found a round bumpy lump just to the side of and behind my left my nipple.  I have to kind of pinch the breast to feel it in there.  I went to gyno right away.  He ordered mammo/US.  Nothing showed on either.  I also had a ductogram because I was having bilateral drainage (clear/orangish yellow).   Since they couldn't see anything at my local hospital they sent me to U of M.   I went up there in October 2010.  I was obviously concerned about the palpable lump.  Its not movable, it feels tethered to something.  It just really close to the surface which isn't what I think of with BC.  So, long story short, they did another mammo and US at U of M.  They saw two abnormalities on US.  I was scheduled for a core needle biopsy on 10/22.  Got a call the  next day and it was a fibroadenoma and a "benign breast neoplasm" whatever that is.  All this time, I was thinking they had biopsied "the lump", you know the one I felt.  NOPE!  They hadn't even looked at it.  I saw the breast surgeon (i was 32 at this time) and she was a total witch to me.  She blew it off as "something in my ducts" -- benign -- as I was so young.  WHAT!  So I left there sick.  Feeling like something was missed.  So I followed up ev 6 months with mammo and US.  They had put in tumor markers and were monitoring the growth of those other two lumps.   I confirmed my suspicion at my last follow up that they hadn't even looked at the palpable lump by asking the sonographer if it had grown.  She straight out said -- we're not following that.  It doesn't show on US.  WHAT!!!:???  So, don't ask why, but I left, thinking they know what they are doing.  I went to my gyno last month for a yearly pap and told him I'd been worrying about it.  He laughed it off and long story short I went to a new gyno and he felt the lump and ordered an MRI of my breasts.  I had it on Wednesday.  I'm waiting right now because the hospital I had the MRI at had to order the films from UM where I had the core biopsies.  My doc called to get a preliminary reading and the radiologist flat out refused.  I am sick of waiting.  I have reasoned it away by saying that if it was cancer, it would've spread and Id be dead by now.  I don't know.....It feels long like a piece of rice but there is one spot that has a round feel to it.  It does seem to have grown a little bit and when I squeeze hard on it, it hurts a bit.  What do you gals think?  I also have lupus and a few other health issues which Ive had a lot of trouble with.  If I had mets to my bones, I wouldn't even know because my bones always hurt due to lupus.  Help!  Anyone have their dx delayed like this?

cathferra

just got called back in for more imaging on my right side.  lump is on left.  radiologist said images are too dark on rt side.

teeballmom

Hi Cathferra!

I'm glad you came here because the support and knowledge you will gain is phenomenal. I'm new so I can't offer much except what I've experienced so far, but first off you've done everything right!

I had felt that everything leading up to my DX date was delayed.  I'll give you a brief scenario of what happened to me.  I found a lump in Sept 2011 (I've had clinical exams since I was 18 years old - I'm 46 - because I always find lumps and have always been told I have very cystic breasts - all normal - stop the caffeine).  An internal medicine doctor when I saw her in Oct 2011 was not concerned (caffeine, fibroedema, etc...) and sent me for a mammogram screening.  Ultimately mammogram screening came back benign and see you in a year.  I didn't like that answer because I felt something was not right this time, so I went to have 2 thermograms done during a 6 month period and the thermographer said "not cancer, you have fibroedema".  Decided in March 2012, see a family doctor.  She felt the lump, called the breast care center herself, and scheduled me for a diagnostic mammogram and ultrasound immediately.  They ordered a biopsy (which I have now been told by 3 doctors that a biopsy is the only way to determine if a lump is cancer) the next day and on 4/12/12 I was diagnosed with IDC and DCIS.  What they also told me was that my lump was 2.5 cm in Oct 2011 (so it was visible on that mammogram I had - my current radiologist has the films from then) and at DX, it was 5 cm and invasive (very fast growing).I only give the brief scenario because I truly believe a woman knows her own body, and for me the delay of 6 months amounted to my tumor doubling in size. 

The waiting is definitely the most difficult part.  I cried a lot.  But it sounds like your new doctor is proactive and doing everything to ensure he has the right health information in front of him.  You have a right to your pathology reports from the former radiologist and from everyone else.  I physically drove to the radiologist who did my Oct 2011 mammogram to pick them up and then hand delivered them to my new radiologist.  Might I suggest you contacting UM and getting them yourself?  It may speed up the process (one less delay). It cut the timeframe down from 5 days to 1 day.

Please also remember only 20% of people get their diagnosis back as BC so the odds are in your favor that you may get a DX of benign.  There is a great section on this board for women who have not been diagnosed yet.  They were an emotional lifesaver for me while I waited.

I will be praying and thinking of you.

Take care.

kleo1234

Hi everyone!

  I'm new on here and have been reading all your posts looking for some advice!  I went to my Doctors yesterday as I have been suffering from Breast pain for a couple of weeks and he say's he was a little concerned that I had unusual lumpyness in both my breasts.  I have spent the last 24 hrs in a state of panic as he has reffered me to a specialist and I have to have a mamogram... I'm 30 years old with 4 children and all I can think is that if this is Breast cancer what am i going to do?  Sounds silly because i haven't even been diagnosed with anything yet and could have myself in this state over nothing but all I can think is the worst. Has anyone had a similar experience to mine or any advice on how to cope because like you all say the waiting is the hardest and I don't have anyone to talk to about any of this.  Thanks.

cheryl1946

kleo

Maybe you should start a new thread with your concerns since you didn't get any replies. I believe there is a not diagnosed but worried topic under forums.

I will pray that your tests are benign. Just know that this is a great place for supportive and caring people.