DCIS on biopsy but not in any of the lumpectomy

lisanash

Have any of you had DCIS diagnosed in the needle biopsy but them have the lumpectomy tissue be completey non-cancerous?
I was diagnosed with DCIS low - intermediate grade on the biopsy, 1 cm of microcalcifications on the mammogram but all 5.5 cm of the lumpectomy tissue was ductal hyperplasia - not even precancerous.
I dont' understand how the biopsy took out very little of the 1cm of microcalcifications - what happened to the rest of the the 1cm of tissue - is it possible that the biopsy removed all of the cancerous area?

Has this happened to anyone else? Was the biopsy a false positive?

Beesie

Well, the pathology result from your lumpectomy is good news, but I can understand why you would be wondering what's going on. The same thing didn't happen to me, but I know that it has happened to others. The amount of cancer can be so small that the needle biopsy picks it all up.

I suspect that your lumpectomy did remove the area with all of the 1cm of calcifications, but the pathology of the calcifications is coming back as ductal hyperplasia, rather than anything more serious. Calcifications can be nothing, or they can show ductal hyperplasia, atypical ductal hyperplasia (ADH), DCIS, or IDC. With small samples, it can be difficult to tell one from the other. What I would suggest is that you ask to have both your original biopsy sample and the lumpectomy tissue re-examined, or have them sent to another facility for a 2nd opinion. It could be that your original biopsy sample was interpreted as being DCIS when in fact it might have actually been ADH or even just ductal hyperplasia. Or it could be that tiny amounts of ADH or even DCIS may be hiding in the larger lumpectomy sample, but weren't detected in the pathology.

Lots of things could be going on that explain this. I think the only way to know for sure what's going on is to have the samples retested.

Good luck!

michmom

I think it is possible for all the DCIS to be removed during the biopsy. I had two areas of microcalcifications biopsied and DCIS found. There were other areas in my breast that weren't biopsied. I had a mastectomy and by reading the path report they found DCIS but not at the biopsied site but in a different calcification, so I think the original areas were totally removed during the biopsy.

roseg

Actually it's a good thing! Your bad area was very small and now it's gone.

lvtwoqlt

I had the same results as lisa, my biopsy showed DCIS but after the mast, the final path showed an area of old fibrosis near marker, fibrocystic changes including duct cysts and apocrine metaplasia. a few areas of ductal hyperplasia and infrequent microcalcifications. I had several occurances of ADH in both breasts and was ready to get rid of the problem. Because it was caught early, no chemo or rads for me.
Sheila

lisanash

my results were almost exactly the same as yours! - ductal hyperplasia, cysts and apocrine metaplasia.

How did your doctors explain the different in results between the biopsy and final path?
I've been unable to get any kind of logical explaination so I question the accuracy of the biopsy results. Could they have gotten a false positive and I had a lumpectomy for nothing?
Thanks,
Lisa

lvtwoqlt

I actually got the final pat report from my PS and did not ask about the different results to my oncology surgeon on my follow-up reports. I had already decided when I got the abnormal mammo results to go with the mast/recon because of my family history and history of abnormal mammo/biopsy.

I have heard that two pathologist can read the same slides and one report it as ADH and the other as DCIS. there is some slight distiction between the conditions that can be interpreted either way.

Sheila

mbordo

Quote:

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I have heard that two pathologist can read the same slides and one report it as ADH and the other as DCIS. there is some slight distiction between the conditions that can be interpreted either way.

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Sheila - this is what happened to me! Two pathologists said ADH and my margins were clear after the re-excision. the third pathologist (a DCIS researcher/expert) said "No - it's *ALL* DCIS, and you *don't* have clear margins..." He told me it definitely is a judgement call, and pathologists often don't agree. This was news to me - I'd figured pathology was fairly cut-and-dried...

Mary

SharonCorrea

I am one whose biopsy removed all the DCIS--nothing was found on the mast. except old fibrosis around the biopsy site.

lisanash

So what's the explaination then? Is it a matter of opinion? Isn't a cell a cell and shouldn't it be black and white whether or not it's cancer or not?

And if no cancer was found then why will they give me tamoxifan and radiation to my whole breast?

If I radiate my whole breast and then I do get an invasive cancer in that same breast, then I won't be able to get radiation on that breast again. Should I save it for a "bad" cancer?

What have your doctors advised you to do?

thanks so much,
Lisa

lvtwoqlt

I wish I could help you answer the question about radiation and tamoxifen. Since I had bi-lat mast with no node involvement, I am not taking radiation and the dr took me off tamoxifen. I was prescribed tamox last Oct because of strong family history (mom 6 yr survivor) and dx of ADH once in each side in 2 years. He told me after my surgery in June it was moot point to continue on the tamox.
Sheila

Beesie

"So what's the explaination then? Is it a matter of opinion? Isn't a cell a cell and shouldn't it be black and white whether or not it's cancer or not?"

Unfortunately, it's not black and white. The problem is that breast tissue abnormalities may progress from ductal hyperplasia to ADH to DCIS to IDC. So a single sample of tissue could contain cells that include any or all of these conditions. And cells from each condition share some characteristics of the other conditions. This is why I mentioned previously that with small samples, it's often difficult to tell one condition from another.

As I suggested in my earlier post, have you considered or asked about getting your slides re-read? Given the inconsistency between your biopsy and lumpectomy results, I think this is reasonable to do. This might simply confirm the previous findings. Or, perhaps your initial biopsy was midread, and you never did have DCIS. Alternately, perhaps upon re-examination, it's found that your lumpectomy tissue does contain a few cells of something more serious that ductal hyperplasia. Either of these findings could impact your treatment plan so I think having your slides re-read is important to do.

lvtwoqlt

Thank you Beesie for your explanation of the different findings. I did not have the elequoent words that you used to explain the shared characteristics.
Sheila

lisanash

I am going to see the radiologist tomorrow and will ask to get a second opinion on both the biopsy and lumpectomy tissue. The biopsy has already been looked at by 2 different hospital pathologists( I think)- they had me have the actual slides from the biopsy transferred from where the biopsy was done to the other hospital.

It definately impacts the treatment plan and the surgeon and the oncologist seem to both take the results litely and that eventhough they don't see this happen all the time they are confident that the results are correct.

It's good to hear that this has happened to others and the explaination of the different types of breast cells really explains it well.
Thanks so much for your help with this. I'll let you know what they say tomorrow.
Lisa

LoveMYcats

I have read about this happening on other breast cancer boards -- but I have never read that giving radiation for this small a DCIS as a treatment. Especially since biop removed it all - or seems to have removed it all.

What is the reason for radiation?

MNSusan

All of my DCIS was removed at biopsy. None was found in the lumpectomy tissue either. Because my area of involvement was very small, I opted out of radiation (with my docs' blessings) and began Tamoxifen. I consider myself VERY lucky.

Beesie

Lisa,

How did your appointment go with the radiologist today? At this point, is he (or she) recommending that you get or forgo radiation, or is the decision on hold pending further analysis of your samples?

lisanash

Even though she said it was my choice, she would choose to give me 6 weeks of radiation. The facts she told me to back up her choice are 1. a study of 1000 breast cancer patients with DCIS and IDC - those who took radiation had a 4-6% less recurrance rate
2. eventho there was no cancer cells found in the lumpectomy, she said that untracable cancer cells could be in my breast somewhere else - so radiation the whole thing. My question to this is couldn't there be cancer cells floating around in other places in my body too, like my liver, should I get radition everywhere to be safe? That just doesn't make any sense to me. She acted like radiation was not a big deal.

She said the she would go along with me not getting radiation but of corse that wouldn't be what she would do.

As for second opinions on the pathology, they said that they are the 2nd opinion of the biopsy and if I want one of the lumpectomy I can get it. They see this all the time. I was very surprised by that.

The told me not to get breast MRI's either. That they pick up alot of false positives. What a mixed message.

What have you all seen as the treatment plan when the biopsy is DCIS and the lump nothing?

I am choosing not to.

Beesie

Lisa, you may want to consider going for your own 2nd opinion at a different facility. One thing that makes me question the advice you've been given is the comment about the MRI. A recent study has shown that MRIs are more effective than mammograms at detecting DCIS; another recent study talked to the benefit of MRIs for women who've been diagnosed with breast cancer. In fact, because of this, I believe that the ACS now recommends MRIs for all women who've been diagnosed. Yes, MRIs can result in false positives, but they are important diagnostic tools that can provide a lot of good information about what's really going on in your breast. Here's what this website says about MRIs:

http://www.breastcancer.org/research_screening_20070328.html

I also question what seems to be a cavalier attitude about radiation. If your pathology is correct and you had only the tiniest amount of DCIS which was removed during your needle biopsy, with no DCIS or even any atypical cells in the lumpectomy tissue, then it is irresponsible to suggest radiation. On the other hand, if they think that there might be more cancer in your breast, they should be pro-active in getting a better analysis of your tissue sample to see if they find anything. To just say that more cancer cells could be floating around in there - particularly when no cancer cells were found in your lumpectomy - sounds a bit too casual to me.

lisanash

my feelings exactly! They were acting like radiation and tamoxifan are like taking a few vitamins. I'm very annoyed with it all.

Marie_S_

Quote:

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...As for second opinions on the pathology, they said that they are the 2nd opinion of the biopsy and if I want one of the lumpectomy I can get it. They see this all the time. I was very surprised by that.

The told me not to get breast MRI's either. That they pick up alot of false positives.

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I think it's quite possible that pathologists pick up a few false positives too. Maybe since working in the medical field for so long, I'm just a bit less trusting than many...but I have a hard time believing that a biopsy needle just happened to be so lucky as to hit and remove IN IT'S ENTIRETY the only tiny little bit of DCIS that existed in that entire 1 cm area of concern and left nothing to be found in the entire lumpectomy specimen. Looking at the whole situation realistically, what are the odds of that actually happening??? I realize there are other women here who say something similar has occured with them and I question those as well. However, my gut feeling is that there was no DCIS to begin with and that it may have been a misdiagnosis that unfortunately resulted
in you having a lumpectomy...something they might not necessarily be eager to tell you about if they could offer another explaination that would appease you.

If I were in your situation, I would DEFINATELY seek out another INDEPENDENT opinion on both the lumpectomy specimen and especially, that biopsy specimen. And I would not consent to radiation until it was all confirmed to my satifisfaction.

OldOakTree

Lisa, I think it is very possible that all your DCIS was removed in the initial biopsy - was this a stereo biopsy or a core biopsy? I have heard of this happening before to a few fortunate women. Because you had 1 cm of calcifications does not mean there was 1 cm of cancer. Calcifications are a reaction to the cancer (or other abnormalities), not the actual cancer.

Sounds like radiation would be overkill in your case. I know there are some doctors who give it to ALL their DCIS patients but in reality there are some who do not need it. If nothing further was found on your lumpectomy, not even atypical cells, it doesn't sound like it is needed. Radiation does not come without its own set of side effects. Sure there could be untractable cancer cells left in your breast but we could all have them anywhere in our body. And that is why it would be a GOOD idea to get an MRI, False positives or not, at least you can get some peace of mind if it finds nothing else.

I had a small area of DCIS and all the doctors (except the radiation oncologist) I talked to said having radiation or not was up to me, but they didn't think it was necessary, so I chose not to. When I asked my second oncologist about getting an MRI he wouldn't do it and told me insurance wouldn't even cover it. Well, I was uncomfortable with him for several reasons, and I found a new one and she wanted me alternate MRI's and mammos every 6 months. "You mean I can have an MRI, and insurance will cover it????" I asked. Of course, she said. Because the first one showed something I had another one in 6 months and then another one 6 months later and finally I worked myself up to every 12 months. So far, all is well, though I often feel like a ticking time bomb.

I would definitley get a 2nd opinion on both the biopsy and lumpectomy as well as a second medical opinion. Which doctor was it that said you should have 6 weeks of radiation, the surgeon or oncologist?

melmedic06

i had the very same experience- radiologist found a "shadow" on my mammogram- followed up with a steriotactic and removed what pathology said was DCIS-followed that up with a lumpectomy where- and forgive me - i have posted this quote many times but it's really what he said - the surgeon removed "some of the healthiest breast tissue he had ever seen"- sent that to pathology and it was benign- all of it- no DCIS no cancer- negative!
i was happy but did have 6 weeks of radiation (protocol at the hospital where i received my care {and where i work})as well as my previous history of ILC in my other breast in october of 04 (0.9cm tumor-no chemo) i am presently on arimidex and will be for two more years- have mammo and labs next month- i guess it does happen but no one ever really mananged to give me a good explanation-

lisanash

Marie,
Your posting spoke the EXACT words I used to the doctors - what were the chances that the biopsy would get the only DCIS tissue? It doesn't seem highly likely that that would happen.
Immediately after I asked that question, they defended themselves completely with the answer that this happens all the time.
I am totally suspisous and will look into getting both specimen's evaluated at a different hospital, most likely at Dana Farber.
Thank you for validating my thoughts. I think logic and fact should be the determining factors in making treatment decisions and the facts in my case are very strange in my mind.
Peace,
Lisa

corvette

I have read of this many times on various breast cancer discussion boards.

lisanash

and do any of them have a "good" explaination that makes any sense there?

Would you mind pointing me to some of these?

thanks so much,
Lisa

Alberta2007

I too was diagnosed with DCIS - Comedo Grade 3 back in February. It showed up on a routine mammogram as 7mm of microcalcifications. It was close to the axilla in the upper quadrant of the left breast. A segmental mastectomy followed in March. (My surgeon said he didn't like the term "lumpectomy" because he was actually removing a wedge of tissue). There was no DCIS in the surgical tissue, just some fibrous tissue near the biopsy site along with something known as sclerosing adenosis. The surgeon was so shocked he actually called the pathologist to double check that the report was accurate. Apparently it is not totally abnormal to get all of the DCIS in the biospy. The radiation oncologist said he had never seen DCIS caught so early and they weren't sure how to treat me. They had the pathology from both the biopsy and the surgery reviewed again. I kept thinking they would tell me it was all a mistake. But, the original pathology was correct. The treatment team at our cancer centre discussed my case and finally recommended 20 tx of whole breast radiation since I had Comedo Grade 3 (the most agressive form of DCIS). I had my 12th treatment today and will finish up on August 28th. I feel so fortunate that this was caught early. I decided to go ahead with the radiation treatment because I really don't want to deal with a recurrence of DCIS or God forbid, invasive cancer in a couple of years if I can at all help it.

Lynne

MNSusan

It never occurred to me to question whether what I was told regarding my lumpectomy tissue was correct. I received the pathology report from my biopsy which showed the DCIS, nuclear grade of 2, invasive carcinoma not identified, fibrocystic changes without atypia, hormone receptor status ER+/PR+, etc. If it was a misdiagnosis, would they just make up those stats?

I also received a copy of the pathology report from my lumpectomy. It lists the size and staining, etc. of the sample and states, "the previous diagnosis of DCIS is noted. Although the tissue was extensively sampled, no evidence of residual involvement by tumor is identified in the current specimen."

My docs never said this happens all the time, but rather that it was small and I caught it early. I'm about 19 months out from my diagnosis now, have mammos alternating with MRIs every six months, did not do radiation but I am taking Tamoxifen with few side effects.

I think this does happen occasionally and I still consider myself very lucky.

soonergirl

I had a very similar situation. I had a stereotactic core needle biopsy that showed high grade DCIS, WHO grade 3 of 3 with central necrosis (pTis or pT1mic), single focus of possible microinvasion. I decide to have a bilateral mastectomy. The path results from that showed "No evidence of DCIS or malignancy identified. Focal atypical duct hyperplasia and fibrocystic change with stroma fibrosis, apocrine metaplasia, focal sclerosing adenosis and microcalcification." They did a sentinal node biopsy which was clear. My surgeon says that they bioposy removed the DCIS and there is no invasion so I am cured. I am feeling confused. Any suggestions?

ddouma

I can sympathize somewhat.  I was told my disease was minimal.  MRI showed a suspicious mass in addition to area that was biopsied.  After lumpectomy I was told I needed a second surgery because I didn't have clear margins.  A week later was told the tumor board decided I had clear margins.  I clearly heard the area to be removed was 2.6 x 1.5.  I finally got a copy of the surgical path report which said "large area of DCIS" in diagnosis section, double what I was told was taken out and no malignancy was found.  That's when I had a mini melt down.

However, I was assured the original biopsy was correct.  Lumpectomy was needed because a biopsy sample can not assure clear margins.  I'm going for rads because there could be other areas that can not be seen plus there really was cancer at the surgical site. 

I am so sorry that your results are so confusing.  You did the right thing based on the information you had.  Trust that your decision has removed all doubt that it will come back.  Give yourself time to process all you have gone through.  I'll pray for you.

Donna

lvtwoqlt

Sooner girl, your report sounds like mine and my surgeon declared me cancer free after my bilat mast last June.

It is common as Beesie said in this post that it is possible to get the entire area with the biopsy but in order to get clear margins they do additional surgery.

Sheila