Tumour size changed after surgery?

Cat123

Originally, I was diagnosed with idc, 3 cm.  The MRI result stated that it was 3.5.  I had a mx on my left breast and the path report came back that it was 6.5!  The surgeon, med onc and rad onc have all given me different answers.  The surgeon said that I also had dcis and paget's (the lump was very close to my nipple) so the is an average of all areas.  However, the med onc said that no, this was the actual size of the tumour.  Has anyone had this happen to them?  Could all the ultrasounds and MRI missed the size of the tumour?  This is a huge difference from 3.5 cm.  Any help would be appreciated.

TenderIsOurMight

Hi Caat123,

Yes, breast imaging studies are not 100% on picking up breast cancer size. It is a shock to go from a suspected 3.5 to 6.5 cm. DCIS is more difficult to image, which if extensive (meaning greater than 25% of the tumor) might account for the size uptick.Paget's involvement of the nipple area too may add in also. 

You might ask to speak directly with the hospital pathologist physician who read your cancer slides. They should be able to give you a break down on the size. There is some discussion as to whether breast cancer areas can be added, or if not, and the cells/tumors are spread by distance, the largest tumor size is recorded. It's a good question, and I hope you might get your answers.

Tender 

Cat123

Thanks for your response!  I think I might try to talk to the pathologist....great idea!  I'm trying to decide on chemo regimens so I really want to get a good idea of what I am dealing with.

SATEX12

Hi Cat123,

This scenario is more common that we realize. I opted for chemo before removing the cancer in my left breast so the extent was not completely known until I had a bi-lateral mastecomy after chemo. Mammograms and ultrasound originally showed the breast tumor to be approx 3.5 cm with one lymph node postive; post chemo, the tumor apparently measured approx 1.8 cm and the lymph node could no longer be seen on film so we expected to be dealing with only a small tumor, perhaps even just dead tissue and no further lymph node involvement.

Surgical pathology revealed that my breast tumor  was still very much alive (IDC) was still 6.5 cm x 2.8 cm x 3.1 cm with a very small area of DCIS and two additional ( of four) lymph nodes that were bursting with tumors, a small tumor in soft tissue adjacent to one of the affected lymph nodes and lymph vascular invasion. My cancer was restaged at this time to IIIC.

It was a total shock to me, my surgeon and my oncologist that the full extent of the cancer was not visualized on the mammograms and ultrasounds pre chemo and at landmarks during chemo. I have been told that due to my breast tissue being very dense, the mammograms and ultrasounds were pretty much ineffective in picking up the size of the tumor which has been revised to an estimated 10 cm prior to receiving any chemo. Also, even after removing all my breast tissue, we still did not get clean margins... 

I actually had a meeting with the pathologist and she explained that the new estimate and staging was based on the pathology of one solid mass, not separate or scattered areas of cancer. My tumor was one very large tumor located down the outside band of my left breast, not in the middle or an area that was buried deep in the tissue so I am still confused about how the full extent was not detected in the beginning, dense breast tissue not withstanding. It just seems to me that the surface area was so large that even if the entire tumor could not be visualized on mammogram or ultrasound, surely "glimses" of the tumor  or at least "suspicious areas" could have been seen throughout that area and not just the uppermost tip of the tumor...Very disconcerting given how sophisticated the technology is today as far as digital mammograms and such. I am also not a candidate for MRI, so we were relying on the mammograms and ultrasounds for reliable information to make initial decisions on my treatment plan. I've been told by my Oncologist and surgeon that had we known the extent of the cancer from the beginning, we would not have waited seven months to go to surgery, we would have gotten the cancer out after my first four treatments of chemo.

I feel cheated that we didn't have an opportunity to minimize the chance of the disease spreading further to my lymph nodes, rather than allowing them to potentially send cancer cells around my body. I just completed 12 treatments of adjuvant chemo, carbo and 5FU and will begin radiation in January 2011. There will be a PET Scan at the end of Dec 2010 so I am praying that I will not be looking at any spread of the disease.

Good luck and I strongly encourage you to ask the tough questions of your doctors on why the pathology was so vastly different from the initial estimate.

Cat123

I know....I had an MRI and I can't believe it didn't pick anything up just my original 3.5cm tumour.  I have been calling to get answers about this and no one is getting back to me which is making me upset.  I really want to know how 3.5 became 6.5 and I think now this puts me into stage lll.

lago

With dense tissue imaging can be really difficult. I was told I had a 7cm tumor going into surgery. Ended up with 5.5cm.  Still didn't change my staging though.

Sorry you your's was larger than they thought but:

…remember that staging is mostly important when it comes to treatment. Best they now know the true size of your tumor and give you the amount of treatment you need. You wouln't want to error on the side of not enough.  Stage IIB/Stage IIIA not really that big a difference IMO. If I had one infected lymph node I would be a Stage IIIA.

Cancer doesn't know what stage it is.

Cat123

I know....I am probably now pushed into stage lll....I don't even want to know what stage I am...makes me depressed...would rather just kick this thing!

lago

Stage IIIA is considered early stage.

"early-stage breast cancer (ER-lee stayj brest KAN-ser)

Breast cancer that has not spread beyond the breast or the axillary lymph nodes. This includes ductal carcinoma in situ and stage I, stage IIA, stage IIB, and stage IIIA breast cancers."
Source: http://www.cancer.gov/dictionary/?CdrID=446564

"… Stages I, IIA, IIB, and IIIA are considered "early-stage" breast cancer and refer to invasive tumors that may have spread to nearby lymph nodes but not to distant parts of the body."
source: http://www.womenshealth.gov/faq/early-stage-breast-cancer.cfm

Stageing info:  http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page2

Cat123

Thank you so much Lago!  This makes me feel better.  I have 4 pos nodes but since my tumour is now 6.5, it has me really worried so thank you for this info.

hrf

From my experience I believe that our imaging technologies are not nearly as sophisticated as people  think. My onc told me from the get go that until surgery, all information was tentative including size. Even while I was being carefully monitored - mammo, u/s - nothing showed up ....even mri only 10 months earlier was totally clear .... then bingo....2.2 cm with 4 lymph nodes. This disease follows no rules and detection is still hit and miss.

BarbaraA

For what it is worth, the MRI stated that the mass was 3+ cm. When it came out it was 1.9 cm.

lago

Once a tumor is over 5cm they tend to stop measuring. Over 5cm… we all have big tumors. BTW the MRI indicated my tumor was 6.5cm.

Hang in there Cat123. This is so scary at the beginning. I'm 2/3 of the way through chemo ( 4/6tx). I'm doing great. I even work out.

fanny4

Yes this had happened to me.  tests showed that it was approx. 2cm.  After surgery it was diagnosed as 4 cm.  I'm not sure why this happens either.  I guess scans and ultrasounds can only guestimate actual size.

3jaysmom

yup, happened to me, also. they said 3cm on one tumor, less on the 2nd. when they did surgery, there was 3 lumps! so the big one, was 2 tumors, close together.. i don't think it changed much, but it def. is accurate with surgery. scans couldnt tell from 2 close, or 2 smaller ones next to each other...im just glad they're all gone now!!!        3jays

Cat123

I know...it's funny right....everyone assumes that medical equipment such as MRIs are accurate (or at least I did) and they are not.  Early detection is so important but damn...they don't tell you that mammos, MRIs etc might not pick it up.  Plus with me.....I found the lump in August of 2009 and my GP at the time said it was probably another cyst ( I have always had alot of cysts) scheduled my mammo but never read or followed up on the report that said I needed an ultrasound asap....so here I am a year later with a large tumour and 4 positive nodes.  The advertising campaigns should include the slogans to follow up with your doc on your test results!  My doc really screwed up.

cookiegal

I was really glad by BS warned me the size would most likely be different and larger after surgery.

Cat123

Yes cookiegal....it's better that you were warned.....it really took me by surprise and I was very upset that day in my surgeon's office.

nikola

Cat123,

I am sorry Your GP did not send You for u/s sooner.

I found my lump as well. Went to GP and was lucky he had that day resident with him. Resident said most likely was nothing but sent me for u/s. If it was my GP I would not get u/s and I would go home happy thinking it was nothing. U/ S showed two suspicious lumps, both were cancers. Pathology after mastectomy showed third one as well. I also had mammo that did not show any of them.

Scary.