Need REAL Opinions

boop826

I am 27 F with maternal grandmother having breast cancer around 40 years old.  My father has liver cancer diagnosed at 49years of age. I recently moved and not seeing my normal docs and these are all new docs for me.   I saw the doc yesterday.  Don't know how comfortable I am with what went on.  I arrived in the office and had to see the doctor's associate(also a surgeon) because he had a death in the family.  Also, up here is very popular for doctor's in trainging or interning up here...needless to say I had 3 different doctor's all looking/staring/feeling for my lump 1 out of 3 was a female.  So, I was very uncomfortable.  I am not comfortable relating to a male for female issues but noone is female that does this here. I have a new lump in my R breast had one when I was 16 that was removed and benign was tumor.  I felt this lump 2 years ago it has grownsince it was first felt.  I went to my OB?GYN and she felt it sent me to have a mammogram and showed NO LUMP and never did anything to follow up.  At this appointment NONE of them felt my left breast at all.  I showed them my concern with my left breast as it has dimpling on it and gets worse when I flex my muscle and the doc's comment was "it is probably due to the left side just being weaker because you are right handed".  I told him I carry my 35 pound baby on my left side, and my purse...so how could that be that much weaker when I do more on that side in one day than with my right?  And I asked why do I have pain in the left breast?  He had no comment.  So, as he examines me he says he thinks it is probably yet another tumor like my first one and there is no need to remove it. If it there actually is a lump which he and all the other docs just felt.  Now when I had one before they removed it right away if it is left there long enough it can become cancerous!  So, he said I want you to have a mammogram and ultrasound ASAP...(yet no need to be worried).  He said go out front to my secretary and they will get you scheduled.  I got out front and the female doc in training takes me to the right desk being that there is about 10 different ones...tells the secretary who is already helping someone that I need an ultrasound and mammogram STAT today.  The secretary rolls her eyes and mummbles that she doesn't want to call down there because they were rude to her earlier.  So, it's now my turn and she calls down and tells me to wait in the waiting room and that she won't forget about me.  She brings my old films out after 10 minutes and says to go down stairs and they are waiting for me.  So, I head down stairs...they check me in, give me a bracelet and tell me to wait it will be a while because I am having 2 procedures done.  So, I tell my husband who has my toddler while the other 2 of my children are at school to go get lunch and they leave.  I was reading a magazine and just happened to decide to check the bracelet that has my name, age etc on it and realize that they have my birthday as 8/26/72!  that I was 37 years of age!  It shouId say 27!  I tell the secretary and she says Wow...that makes a big difference.  She changes it and says well...they may not do a mammogram because of your age.  I said I have had them in the past.  She says well..tell the tech she may do the ultrasound first.  Whatever...She takes me back..I get changed and they call me right away for the mammogram.  The tech asks me a series of questions and is typing them in the computer and says well due to your age the radiologist may do ultrasound first.  Fine.  I say.  They make me wait inside the room 10-15 min. while she discusses this with him, she comes in and has another woman with her who I am told is the ultrasound tech that I have to do that first.  So, we go to ultrasound have the test done...she also finds the mass and now wants the radiologist to come look at it not to get dressed.  I say fine....40 minutes later ...they both return.  Apologizing that he was busy!  At first he can't find it and the tech is telling him wher it is etc.  He starts to find it and he is saying he's concerned that it looks bigger than he feels which is not a good sign.  That when it is cancerous a small lump will have basically a boundary around the lump of tissue because your body is fighting the lump.  Then, he examines he all this time is having a concerned look on his face and continues to take the ultrasound handle off and feel it then replace it again back and forth and more and more and feels it and says well I believe it is a tumor and we will monitor you in 3 - 6 - and 12 months to see if it gets bigger.  If it gets bigger or changes we will remove it and test it.  He also stated that he was concerned because it felt smooth yet looks lumpier on the screen again, another sign of being cancerous.  SO, then they ask if I need to go back upstairs to see the doc again...I said no one told me.  So, I am left there again another 10 min. as the tech finds out what I am to do.  She comes in and says get dressed.  I said well aren't I getting the mammogram now?  She says no get dressed and we are getting you scheduled for 3 months.  Again, no one checked the left breast at all.  So, I get scheduled for 3 months May 6th is the next ultrasound and I am their first appointment and I immediately go upstairs to see the doc afterwards and I am his first appointment that day.  What do you guys think?  I again am being told well your young bullshit.  I would have had a mammogram if I was 37.  Meanwhile the one doctor in traing said it may be mandatory that I have yearly mammograms because I am under 40 and have continuous problems.  And that I may have these tumors all my life.  But yet I did not get one done and the secretary at the ultrasound place said that the doctor will probably want a mammogram anyway because he ordered it but the radiologist is the one that said no I don't need it.  Now, I feel like the doc is going to be mad.  And I asked for copies of the films and the appointment scheduler said I can get a copy of the report but no films!  I may raise hell about that because I need them if I decide to go back to my original doctor.  Meanwhile too,  the first mammogram showed no lumps and they never scheduled a follow up ultrasound.  My first doctor told me to get both that mammograms don't always show up which I know from experience it didn't show 1-2 years ago when I first felt it.  My doctor said because of my history I should ALWAYS have both!  I am just confused and there is only 1 hospital here so I would have to go to the same place that didn't want to do the mammogram in the first place.  Also, this lump is only half the size of my first one.  My first one was bigger than a quarter almost a half dollar size.  This one is long like it follows my milk duct as the radiologist says and 40% of the time cancer grows there.   Tell me your thoughts.  I don't see the OB/GYN until Feb. 23rd but I am voicing my opinion to have the mammogram done anyway and all that has happened.   *UPDATE*.......

I called the doctor the Monday following my exam asking for the results...the secretary said hold on the nurse can give the results 2 u.  The nurse comes on and says she can't give the results to me but the doctor has to and he has to call me back.  (heard this same crap on friday when I called in and he was in surgery)  A few minutes after I call, the phone rings and it's a different nurse.  She asks me why the radiologist did not perform the mammo.  I said he said he talked to the doc and it was not needed.  She states that NO ONE called there to ask permission to NOT perform the mammo and the doc WON'T give me any results until I have that mammo performed.  And that I need it ASAP. And I needed to have an ultrasound of the left breast where I had prior complaints about tenderness and dimpling.  So, I couldn't go the same day they called but I could go the following day.  So, again I am back at the hospital but with all new radiologists and techs back there.  There are 3 women with me waiting.  The 1st woman is called...she gets sent back in to wait to make sure films are good enough for the radiologist to read.  She is told she may leave now.  2nd woman gets called back...she waits...she can leave.  Now it's my turn.  I have the images done.  I go back and wait.  The 3rd woman gets called back.  She returns.  Waiting.  I am called back for more films to be done.  This time magnified images are performed.  I go back and wait.  The 3rd woman is also called back again for more images.  She is sent back to wait.  I said to her is this good or bad that we are the only 2 left?  She said I was wondering the same thing.  She said because I am heavy I had a hard time getting my breasts into the machine.  I said oh ok.  I am not a large woman and had no issues back there. Now I am called back for the left side ultrasound.  They find an inlarged duct the tech says.  I am now accompanied by the radiologist and says left side looks like a cyst no biggie my doc may do nothing but make sure u return in 3 months for the right breast.  She said she can't find any dimpling but 3 other people did and exactly where the "cyst" is is where the marker is from the mammo tech that saw the same thing my doc, my husband, and I have seen.  Meanwhile, we are in a dark ultrasound room with hardly any light.  And she says she doesn't think s "cyst" will cause dimpling anyway.  I said ok.  I ask all the techs today if I can have copies of the films.  They all say yes come back in 24 hours after the doc has read them.  So, why last week was I told no?  I go home.  I call the next day for my results.  Once again doc is in surgery can't return my call until at least Monday 2/15.  Fine.  I call for copies of my films AND reports.  The records dept. says I can pick them up 2day just be here b4 5.  I show up at 4:30 my husband works and we only have 1 car and with all 3 kids too a 9.6, and 2 year old.  Get my reports head to imaging center for films.  Looks like all the lights are out except the one over the desk.  I ask the secretary if my films r there.  She looks confused.  No films r here she calls back to film records dept.  Asks if there are any films for me.  NO she replies and I am told to call Monday to see if they are done.  So, I go home and open the envelope that has all 3 reports from this week and last week.  Mind you my previous mammo results from 2 years ago are not here since I moved but I have requested them and these docs have no other films to compare to other than my old ultrasound ones from when I was 16 and had the fibroadanemoa that has already been removed and the ultrasound that was performed last week but only on my R breast.  Here is what the report says (all in technical terms)  BI-RADS  Category 3- Probable Benign/Probable Malignancy, short follow up suggested.  This was a correlation with patient's recent unilateral Right breast mammo on 2/4/10.  (WAS  NO MAMMO DONE ON 2/4/10 ONLY AN ULTRASOUND WAS PERFORMED ....MORONS!)  Technique & Findings:  The mammo tech felt she appreciated the area of patient's concern a lateral Left breast, which the tech described as an area of elongated, finger-length smooth inward contouring.  Mediolateral oblique, craniocaudal and spot magnification views in projections in the areas of concern were performed.  The nodular density identified by sonography at 9:00 position in the R breast is identified and is most apparent on the craniocaudal projections.  No definitive masses, architectural distortion or suspicious calcifications are seen adjacent to the metallic BB-marker on the L breast.  (ok.  what about the right?)  No nipple retraction or skin dimpling/retraction is apparent mammographically.  (ok.  again  what about the right breast)  Unilateral Left Breast Ultrasound:  Real-time sonography of the L breast was performed.  On visual exam of the breast with patient in various positions ( 2 positions.. bent over and with hands on hips which I, my doctor, husband, mammo tech all saw)  I was unable to observe an area of skin dimpling or retraction.  (I guess all of us are crazy and maybe it would help if we weren't in a dark ultrasound room with hardly any lights)  Muscle contraction was noted and smooth contour of the L breast.  (that's when it gets worse)  No shadowing mases or suspicious foci were identified to suggest malignancy.  ( this is the funny part where she contradicts what she just wrote) 2:00, 10cm from nipple: A 0.29 x 0.5 x 0.19 cm anechoic parallel oriented circumscribed simple cyst is identified.  (note: this is exactly where the marker was put there by the mammo tech ...coincidence?).  Now here's the US from 2/4/10 (NOT MAMMO) (note: this was read by a completely different radiologist although done at same hospital)  US (ultrasound)  of R breast demonstrates that there is a superficial, oval shaped (not oval looks like a worm or pear shaped long line) hypoechoic, well marginated (when radiologist looked at it said it doesn't look normal it didn't look like it had an end like it went from my nipple straight towards my back etc) homogeneous nodular with through-transmission which has some blood flow with in it.  This nodullar density measures 1.3 x 0.65 x 0.45 cm.  There is no ultrasonic criteria for any other cystic or solid masses ( I guess they have x-ray eyes because all the tech and the radiologist did was look exactly where I told them the lump was)  The remainder of the stromal and fatty tissues of the R breast are within normal limits.  Physical exam of the R breast demonstrates that the papable density is NOT mobile but does measure the same on the ultrasound (radiologist told me his concern that it felt smaller than it look on screen even that it felt smoth but looked bumpy)  There is no evidence of skin thickening, nipple inversion or erythema.  Impression:  probable fibroadenoma at 9:00 radiant in the retroareolar region of R breast which measures 1.3 x 0.65 x 0.45 cm.  No other definite cystic or solid mases are noted.  Follow up ultrasound R breast in 3 months is recommended for better characterization and to ensure stability of the above findings.  BI-RADS Category 3- probable benign. 

Now with the mammo now stating the same thing shouldn't the order a biopsy?  Also, knowing my ultrasound from 2 years ago said negative findings would that make this finding worse to a category 4 being suspicious as it is stated on their chart?  I also know NO ONE can say definate benign WITHOUT having a biopsy!  I am having a 2nd opinion done in about a month but should there be other actions being taken right now?  The area my lump is in is not in my nipple but the areola region and it feels like a milk duct the way it is shaped...if you look up breast anatmony u will see what I mean and most cancers are in the duct areas.  I feel like I am doing one right thing by of course following with a 2nd opinion but I feel like these docs are trying to be too cautious and no let on too much about my R breast.  They would talk all day long about my L breast but not really any words at all about my R just to make sure I come back in 3 months.  I glanced at the films as the pics were being taken and I could see calcifications on my R breast.  As you see again they don't even talk about it on my R breast really at all on the findings.  It just seems weird and the doc won't tell me anything until he has the mammo as back up.  Again....thoughts, thoughts, thoughts please.   THANKS

mlrbelle

First, calm down and breathe (and don't kill anyone yet - I know that's where my thoughts would be after being treated like that!).  Then, get yourself in for a 2nd opinion STAT!  With your history, you should not have a problem getting mammos - although I would suggest fighting for an MRI at this point, on BOTH sides.  When you call the new doc for the 2nd opinion, tell them your issues and where you had your scans; they should be able to get your films and reports sent directly to them. 

LISAMG

I agree....first and foremost, DEEP BREATHS now & repeat.  Seek another opinion, preferably with a breast surgical oncologist. I do agree women your age should not be having mammos in general, either sonogram and/or MRI are recommended. This should not be "watching & waiting" either. You need reassurance and answers, none of which have been provided. Did you have your breast imaging performed at a [high volume] breast center only? Continue being pro-active until your needs are satisfied. An ob/gyn doc is not the one you need now either. Best wishes & keep us posted.

mawhinney

All radiologists are not equal.  Make certain the radiologist reviewing your films etc. has a special interest in the breast and reviews breast issue & tests frequently.  I would find a surgical breast oncologist and ask for his/her recommendations on where to get your testing done.  Ask the breast oncologist what tests would be most beneficial to you.

AnacortesGirl

Bump.  Original post updated.

dlb823

boop ~ I can see why you're frustrated!  Some of the doctors & staff you've dealt with sound less than competent, and they certainly haven't listened to you.  I would urge you to find a breast surgeon at a full-fledged cancer center, even if that means driving a couple of hours.  Your lumps and dimpling may have nothing to do with bc, but the explanations they gave you and their contradictions don't give me the least bit of confidence in them, and they certainly haven't give your concerns the attention that's required to make an accurate diagnosis.  Please get copies of all your tests (they should put the films on CD for you), and locate a breast surgeon/specialist (not an OB/GYN) who will properly diagnosis your issues.  He/she will also review your family history, and if they determine you are at any higher risk for developing breast cancer than most women are, they will counsel you about things you can do to minimize your risk, as well as monitor you more often.

I also want to mention that I think the length of your post is probably the reason you haven't had many responses -- it's just very hard to follow, although I do understand why you laid it all out, to paint the picture and share your level of frustration, which is certainly valid. 

I hope you can find a breast surgeon who can untangle this info' and get you on the right track.  I'm also hoping that everything will turn out to be benign.  However, as you instinct is telling you, leaving that to chance and waiting 3 or 6 months for a lump to grow isn't wise.     Deanna

mzazueta

I agree with Mawhinney.  You know your body best and I have found that it is so important to have ultrasounds and mamos done by in a facility that specializes in women's health.  I was on a schedule of mamograms every 6 months, and the last one told me all was clear.  I have dense breasts and so it is hard to see lumps on the mamo. Still I felt a lump and went to my primary doc who sent me for an ultrasound where they told me don't worry about it, it looks to be a benign fibroedoma.  From there I went to the surgeon who ordered a ultrasound guided biopsy at a womens facility.  Immediately the radiologist pointed out to me that the previous ultrasound I had at the other facility was pointing to fatty tissue and that lump I was feeling was what was going to be biopsied as it was clearly an area of concern. Results one week later confirmed it was bc.  I was aghast at how wrong the other place was not only diagnosing the wrong area of my breast but completely overlooking the area I pointed out several times.  The radiologist told me that it is common to have misreadings from facilities that do not specialize in women's issues.  I'll never return to the other facility and I'll drive across town if I have to for specialized care.  After that I called my primary car doc and told her I no longer wanted the surgeon she sent me to who was specializing in colon/rectal issues - I wanted someone who specialized in breasts and I'm glad I did.  We sometimes learn the hard way, but the good thing is that we learn.  It sounds like a frustrating process for you and, I hope that you've made an appointment to get a second opinion.