High Risk, 3rd biopsy since 2009

lintek

Greetings everyone, 

I have concern about a biopsy report from a breast excisional I had two weeks ago.

It all started back in the Fall of 2009 when I complained to my gyno that my right breast hurt.

being I'm high risk due to both of my sisters having had breast cancer and a maternal Aunt.  one sister had both breasts removed, other sister had DCIS followed up with five years of tamoxifen treatment and still following up with her oncologist. 

I was going to a general surgeon who is well known in our small town as the expert breast surgeon and woman of all ages adore him. I also did too, until after a few years of having my mammo reports sent to him and having my yearly exams by him, I never asked for one copy of the radiologist report.. Until I went to my gyno for my yearly exam back in the Fall of 2009 and complained of pain, deep inside my right breast. I am also on HRT due to going into surgical menopause from having had a total hysterectomy back in 2005 at the age of 45. not due to cancer.

My gyno referred me to an expert team of breast cancer surgeons located in a different town who asked for my prior mammo reports. so I requested them and I finally had a chance to review it with my own eyes and I couldnt' believe that the general surgeon who is so loved by all woman never told me that the radiologist wrote in his final report that I was recommended to have an MRI... Not ONCE did he ever recommend I have any type of special tests performed along with my annual mammo's because of me being at high risk. 

You could imagine my shock... I went to the new doctor, had a mammo, ultrasound and an MRI performed which showed that I needed to have a biopsy, bilateral, ultra sound guided core needle biopsy on both breasts, Which read:   "PROBABLY BENIGN- SHORT INTERVAL FOLLOW UP SUGGESTED." turned out to be benign with follow up MRI again in 6 months.  

went for the 6 month follow up, again, showing I needed another biopsy, this time just in the right breast, with a Birads4b SUSPICOUS FOR MALIGNANCY" due to anterior aspect of this has increased plateau kinetics as compared with the prior studies and follow up MRI guided biopsy of this are is recommended to determine histology and exclude malignancy. This 2nd biopsy in 2010 was again "negative".. I could wipe my brow and let go of the breathe I held onto so deeply. 

This 2nd biopsy,MRI guided, really hurt me and took longer than I expected for recovery time. I thought that this time it was finally all taken out and that I'd have nothing to worry about. Negative for malignancy but I was told to follow up again in 6 months with another MRI, with a mammo and an ultra sound.

My mammo, which I was unaware of, had found a calcification, because I didn't ask for the written report and just thought everything was ok, when the radiologist who verbally discusses your results with you the very same day before you leave the office, told me my results were fine.   but..... she DID tell the breast surgeon, who sent me a follow up letter regarding the mammo. and this is what it said: 

"Your examination showed an area that is "probably" benign (likely not cancer). However, in two(2) months, I should have a follow up bilateral Breast MRI to confirm that this area has not changed".

the mammo result letter never stated it was a calcification that was being watched. I didn't find this out till I had my 3rd biopsy which was 2 weeks ago today, and found this out directly from the radiologist when she was putting in the guided needles to show the surgeon where the suspicious area was to be excised.  

the 3rd MRI showed that segmental enhancement is again present in the right breast and the anterior component has washout kinetics and the anterior component appears to be located in the region of a coarse calcification mammographically. In view of the washout kinetics further biopsy is recommended to determine histology and exclude malignancy. scattered stippled type enhancement is again present in the remainder of the breasts bilaterally. BIRADS 4b SUSPICIOUS FOR MALIGNANCY.  this time I was told an excisional biopsy would be performed which wound up being a lumpectomy. they took out a 5cm portion of the area which makes my right breast look out of shape at 6:00 position.

I had to go for pre-op testing this time and get a medical clearance letter from my primary dr. that my health was ok for the surgery. 

I was sent home and told to report for a follow up appointment with my surgeon in a one week for the results and she even told me that if she heard anything earlier, that she'd call me. well she never did. I was very nervous the day of my one week follow up appnt. because she promised me she'd call me either way.

when I was waiting in my gown in the exam room and she came in, looked into my eyes and told me " by the way, your test is negative". I wanted to jump for joy with happiness, but also scold her for NOT calling me to let me know this great news which she had sitting on her desk prior to my appointment.  I udnerstand she's busy, but I almost had a nervous breakdown on the way to the office. being I already was on my 3rd biopsy, I felt I was turning pro at this time and wasn't showing how nervous I really was inside. I just had a feeling deep down inside that the results were negative.

 She told me that the MRI"S really make it look worst and that the radiologist is being overly conservative and made her look like she's a worry wart.  I didn't feel that way, especially about my family history.I was GLAD the radiologist wanted another biopsy performed. so when it came time for our visit to be over the surgeon told me to have my mammo again in 8 months, I also asked her whether she wants me to have another "overly sensitive MRI" again, she stated "yes", 

I asked her for a copy of the "Final pathology report" and read it when I got home, this is what it said: " LUMPECTOMY, RIGHT BREAST:  ATYPICAL DUCT HYPERPLASIA (ADH) WITHIN A WIDER BACKGROUND OF USUAL DUCT HYPERPLASIA ( which showed up on my 2nd biopsy report) ADH FOCUS IS FOUND ALONG WALL OF PRIOR BIOPSY SITE. 

RADIAL SCLEROSING LESION (RADIAL SCAR). RADIAL SCAR CONTAINED WELL WITHIN LIMITS OF EXCISION WITH WIDE MARGINS.

USUAL DUCT HYPERPLASIA AND APOCRINE HYPERPLASIA WITHIN RADIAL SCAR.

COLUMNAR CELL CHANGE AND COLUMNAR CELL HYPERPLASIA.

CYSTIC CHANGES WTIH MULTIPLE APOCRINE CYSTS WTIH LUMINAL CALCIFICATIONS.  

NO IN SITU OR INVASIVE CARCINOMA PRESENT.

 My question is:  should a breast biopsy always get a 2nd opinion from an independent lab/ pathologist? It didn't state on the report whether it was looked at twice, like I thought most biopsies were? to make sure the 1st pathologist didn't make a mistake? 

My surgeon did not tell me about any atypical duct hyperplasia  and just said it was negative for malignancy...  I feel that my doctor is making light of my family history situation and that the radiologist is being an overly nervous Nelly.

I looked up what ADH is and I should NOT take this result lightly. I do make sure I am diligent with my follow ups which always lead me to another biopsy it seems, but do you all think I'm being overly sensitive to worry about ADH???

I am very confused about my feelings now towards my breast surgeons lightness of the matter. am I being wrong to feel this?

 I appreciate any input you all may have.. thank you....

Lintek 

mdoak

Lintek, ALWAYS get a second opinion on a pathology report that states ADH. I have read, and doctors have told me, that different labs have different standards to distinguish between DCIS and ADH. They really are the same entity, it's just the quantity that is different. Have your slides from all of your biopsies sent to a breast pathologist to get a second opinion.

 Good luck.

vmudrow

Do take it seriously.  I was diagnoised with ALH (atypical lobular hyperlasia) and was sent to an oncologist - he wanted me to take Tamoxifen.  I have a strong family history and had multiple biopsies and didn't want to take Tamoxifen or have MRIs every year - which do show more, but need to be biopsied to make sure.  I chose to have PBM - couldn't be more pleased as I felt I was just sitting around waiting to get cancer.  I chose to be proactive - good luck and keep us posted.  Hugs, Valerie

Anonymous

Lintek-----the general recomendation for ADH is yearly mammos and twice yearly breast exams; with the addition of tamoxifen, if there are any other significant risk factors, such as family history of bc. Having 2 sisters and an aunt with bc, I would think it  would be highly likely that they would recommend tamox for you. You might also want to consider genetic testing  because of the family history.

I was diagnosed with LCIS (a step further along the bc spectrum; confers even higher risk) 7 years ago and also have family history of bc (mom had ILC). I do high risk surveillance of alternating mammos and MRIs, took tamox for 5 years, and now have taken evista for almost 2 years for further preventative measures. PM me if you'd like to talk anytime.

Anne

lintek

Thank you for the replies mdoak,Ann and Valerie for your warm hug. 

How come my Breast surgeon didn't even MENTION getting a second opinion?

How does a person go about finding a pathologist who will do the 2nd opinion if my doctor didn't recommend this?

Do I contact a special hospital in New York City which is not far from where I live in the suburbs?

I was always and still am, very diligent on keeping up with my exams because of my high risk. My breast surgeon did mention to me about getting genetically tested when I first met her, way before all the problems started to arise.

 I am learning that just because a doctor talks nice and treats me the way I like to be treated and just because her office looks like it should be in a designers magazine, doesn't necessarily mean she is the best doctor out there for the job. She always seems like she's in a hurry when she sees me to go onto the next patient who's waiting in the next room. As if she just takes my life as if there's no importance to it... something is not adding up right with this doctor, which I guess a person may not find out until after having multiple visits and really get to see the doctor do her work. 

I'm afraid to go on tamoxifen due to what my sister went through and is still going through with horrible sweats as the side effect from it. she told me that all woman don't feel the same effects as she does and that I shouldn't be afraid to take it if I ever have to.  I already get bouts of horrible sweats as a side effect from a particular medication I"m currently taking. It was worst before I started taking my HRT patches right after my surgical menopause that hit after the total hysterectomy years ago and NEVER want to go through that again.

Did any of you suffer the sweating with the tamoxifen? and did it continue to happen even after stopping it for a year?  

How much ALH  and ADH was found in your biopsies? Maybe there was a lot? due to the fact your doctor sent you to an oncologist for further treatment and follow up?   I'm glad that you made the right decision for yourself and are happy with the outcome of it. My other sister had a mastectomy after her diagnosis which really flabergasted me when I found out that the hospital sent her home after only staying there one or two days and sent her home with a drain in her... one day??? is this because of insurance purposes? How devastating!!! 

 I never thought I'd wind up having all these breast problems and took lightly in the beginning that I was considered high risk because of my family history. They really mean what they say, don't they? high risk really does cause problems up the road. it's happening that way in my case.

as I see it did in all of your cases too.

Again, I thank you all for your help and for sharing your personal stories with me.

You've all been a big help and are very supportive at a time in my life where I feel absolutely confused.

Sincerely,

Linda  

Letlet

Sloan-Kettering does pathology review if that's what you want. You will have to send in your slides for them to re read it and issue their own report. This is not a doctor's consultation.

They also have a breast surveillance program that you would qualify for since you are at high risk because of your sisters. Dr. Mangino heads this program.

Hope this helps.

vmudrow

lintek - I only had a very small amount of ALH on biopsy - my surgeon still thought it important I go see the oncologist and he wanted me on Tamoxifen, even for the small amount, said it is considered precancerous.  I went to the Huntsman Cancer center and had my risk evaluated, they take family history etc. and my risk of getting breast cancer was 40% during my lifetime, so that's kind of why I chose PBM.  Plus I didn't want to take Tamoxifen and have MRIs and biopsies all the time.  I just stayed one night in the hospital - the surgery really wasn't very painful for me - drains yes, but they are just annoying.  Good luck and keep us posted.  Valerie