Surprises at Surgery??

Anonymous

To anyone out there whose doctors were taken by surprise at time of surgery by tumor size -- I underwent bilateral mastectomies, one side prophylactic and other side for the cancer. I had both the PET and MRI scans prior to surgery, and these tests failed to show anything larger than a 1.2 cm and 1.6 cm tumor.  During surgery, they removed a tumor which was 6 x 6.5 x 5.5 cm. They have tried to explain that this may have showed up on the scans as looking more like a "scar" of some kind, encompassing smaller tumors.  Wow, is that all the farther we have come?  let me hear your stories ladies PLEASE...  Had they known what the actual size my tumor was prior to surgery, they probably would have done chemo first to shrink it. 

flopsy

shelley 56,

My surgeon wanted to do only a lumpectomy and axillary dissection on ca side, but I said "no".  I have always been very lumpy and had 3 prev bx that were negative.  I opted to have a radical modified on ca side and simple mast on non ca side.  My tumor was 3.5 cms(imaging said 2 cms and 1-3 nodes) and 5 axilla nodes.  The opposite breast had two pre-cancers of different types.  I am very glad that I opted to remove both breasts.  Was fitted with bra prosthesis yesterday and doing well.  Chemo starts next week.  It is frustrating to know that as good as technology is today we still don't have a definite way to know what is going on before surgery.  If we did all of us would make better decisions.  I hope you are doing well.  Let me know if I can help in any way.   gin2ca

KerryMac

I think the MRI said mine was 5cm, path was 7cm. But I did have some DCIS in mine, 15% I think, so I have wondered if maybe that didn't show up on the MRI?? I don't know how they can get it so wrong, although I'm not sure it really matters as long as you get clean margins.

It is common - I have heard of people doing neo-adjuntive Chemo, thinking they had a complete response (from MRI) and still having whopping big tumors there after Surgery. 

Bugs

Mine started as a dx of DCIS..mamagram showed no tumor even though I felt a lump.  Pathology after my mastectomy showed 8.5 cm tumor.  They told me in inches thinking I wouldn't freak out then, lol.

squidwitch42

Wow, Bugs and Shelly...I just have to say I'm very surprised, and glad you are sharing your stories.  I't will be interesting to see what others have to say.

Mine was the reverse, looking like 5 by 5 by 5 with MRI, 2.5 ish with Ultrasound, and ending up being 4 by 1.5 by 1.0 after surgery.

I think this points to how important self exam is..I found mine by accident, and wished I had performed monthly exams, but glad my hand ultimately brushed against it.

Anonymous

KerryMac & Bugs, Squidwitch: Thanks so much for your replies.  I just am always amazed and don't like the surprises that have come along the way with diagnosis.  I'm trying to think if we can survive this crap, we can do anything ! 

Gin2ca:  thanks for the reply and you were so right when you said we don't have any definite way of knowing what is going on before surgery.  If we did know, the docs and patients would have quite an advantage. 

Hang in there everyone !

in_cognito

My ultrasound and mammo both picked up the tumor to be 1.2 cm.  The MRI said 3.0 cm.  When they went in they did find a 1.5 tumor but another multifocal tumor of 0.7 cm.  They did a re-excision last week and that showed another 0.1 cm.  They are recommending a mastectomy now to see what other surprises lurk. 

SpunkyGirl

Shelly,

I'm sure you will get a lot of responses on this one!  I didn't know until surgery that I had lymph node involvement, though I did expect it with the location of the lump being so close to my armpit.  BLECH!

Hugs
Bobbie

jenn3

They estimated the correct or close to the correct size of the tumor in my breast which was 1.9cm.  I was and I think they were surprised in the size of the tumors in my lymph nodes - 4 were affected, two with micro metastisis, then in the other two were a 3cm and 4cm tumor and it was leaving the lymph node (can't think of the correct wording at the moment).  If I remember correctly they expected to find something in the lymph nodes, but not as big as they were.  I guess it's hard to see everything on the ultrasounds and MRI's. 

precioustime

I had Neo Adjudvant Chemo with PET scan to follow prior to surgery.  PET showed the tumors were gone -- Pathology report showed (2) tumors less than 1cm as well as 12 out of 18 positive axilla lymph nodes!  This surprised everyone!!

This Tuesday I go in for a follow up post all treatments and will be having a PET and CT scan.  I am thinking maybe the PET and CT scan together may be a little more accurate-- at least I'm in hopes. 

jdootoo

I had a fine needle biopsy done for my lymph nodes, which came back negative. They called me at 5:05 of Friday to tell me this and I was walking toward my train in Manhatten and just broke down crying with relief. I called my sister right away to share the good news with her.

When I woke up after surgery, I was told that I had 6 positive lymph nodes that were clumped together. I went from a stage I to stage III in an instant. Thank God my sister was there after surgery.

The worse day of my life, so far, was going to get my PET scan. Thankfully, it was clear.

Shrek4

Mine was backwards too. Mammogram showed wide-spread DCIS. Ultrasounds showed zilch. MRI showed 10 cms. on right breast, suspicious area of 6 cms on left breast, no lymph nodes involved. Actually there was a 4 cm multifocal area with the largest invasive tumor of 4 mm and positive (3 mm tumor) sentinel lymph node on the right, with nothing on the left (well "nothing" as in no carcinomas, there was some sclerosing adenosis).

Diane509

My doctors were surprised that I didn't have anything invasive. 

After 3 separate biopsies on the same side at 3:00, 10:00 and 9:00 each showing DCIS, (I had textbook extremely dense brst tissue) they went ahead with the surgery bi-lat + ld dorsi + te's ... and 4 days later in the hospital my PS came in wagging his finger at me after looking up my pathology results in his blackberry......he says "you are a lucky lucky girl, they all thought it was invasive"  I'm so grateful, but recovery is still a hard road, even without adjuvent therapy.   

Anonymous

Diane509: 

You are a very lucky girl. Most of us on this Stage 3 forum are not that fortunate, but we are survivors any way you look at it ! 

Precioustime:  Isn't it weird how tumors can represent themselves as scars or something other than tumors?  And yours probably didn't show due to their small size of less than 1 cm.  But that is not acceptable. 

Please everybody tell your doctors we NEED BETTER TESTING so we all know how to better treat this disease. 

ugadawg_lover

My original diagnosis was 2.5 cm. The actual size after pathology was 9 cm....ouch!

Claire_in_Seattle

I learned I was Stage II and not Stage III.  With a grossly positive Sentinal Lymph Node going in, it was reasonable to assume that I had a lot of others positive.

Only the sentinal.

My surgeon was stunned when she gave me the news.

The other great news was that I had full range of motion the day after surgery.  Things tightened up a bit, but I never lost it.  I was beyond thrilled when I realized this.  I made sure I did the exercises to maintain it.

Diane509

OMG everyone.. I am so sorry I posted above .. I sometimes do a search for a topic and see people talking about something and I didn't look at the header.... Please accept my apologies for posting on Stage III .....   Hugs to all

Anonymous

Diane509:  My message to all was just that we cannot rely on the current methods of testing, no matter what kind of great technology the doctors promote.  My onc said she has seen many Stage 1 cases go straight to Stage 3's, because of surprises at surgery.  Years ago they also didn't stage BC, so if you look at it that way, that may be more assuring.  Hugs

Shelly

my2kids

i have lobular carcinoma and week before my hysterectomy it showed clear in my PET SCAN.  after they went in for surgery the cancer was there. doctors say this type of cancer doesnt show up in pet scans sometimes.