2nd Lumpectomy in 6 months - no DCIS in 1st lumpectomy

dazedandconfused123

Hello all,

I hope you can bear with me as I try to sort this out. I am a fairly holistic person so I am hoping to get by with as minimal treatment as is safe. Also, I am in Miami at a major hospital breast center so I am dealing with quality professionals.

At my 6 month follow up after my lumpectomy surgery, I found out that my DCIS has recurred (or not completely removed initially). Subsequently I just recently discovered that no DCIS was found in the final pathology report from that surgery; in fact all of the DCIS was actually removed during the preceding biopsy. No mention of this was made at my post op meeting with my surgeon. Just that everything looked good and she did not think I needed the partial radiation she had strongly recommended throughout. I have resigned myself to another lumpectomy, but really want to avoid the partial radiation being recommended if possible.

Is this common for all of the DCIS to be removed during a biopsy and still go through a lumpectomy? Is this something that surgeons may be a bit embarrassed by; that they operated despite it not being truly necessary? I know she received the pathology report the same day as my follow up; is it possible she had not reviewed it yet? It just seems strange that no mention was made at either the post op or during my recent appointments with the recurrence. I understand that we can't know what it is without the lumpectomy being performed, but I can't help but wonder if I am going for another surgery that may not be necessary.

Thanks everyone for their wisdom.

Below are the details:

1st Diagnosis:

1st DCIS diagnosis 1/15

1st biopsy: DCIS intermediate grade, solid and cribriform types, with foci of central necrosis and calcification ER (3+,3), PR (3+,3)

Oncotype type score low (15), genetic testing negative.

Lumpectomy: 1/15. No radiation needed, tamoxifen declined.

Post surgery meeting: Per surgeon, looks good, everything removed. Partial radiation not necessary after all; I declined tamoxifen. I did not receive or request final pathology report from initial surgery.

2nd Diagnosis:

2nd DCIS diagnosis: 10/15 (basically 6 month follow up)

2nd biopsy: Exactly the same in same location (probably missed 1st time)

No enough tissue to run Oncotype score. Surgeon will attempt by sending tissue after my upcoming lumpectomy.

MRI showed nothing suspicious other than the area biopsied.

2nd lumpectomy scheduled and partial radiation recommended.

LisaAlissa

Hi dazedandconfused!

I can see how you would be concerned.

It is not too late to get copies of your various imaging, procedure and pathology reports (related to your first diagnosis, surgery & second diagnosis). That's where I'd start. Ideally, you'll want to collect them from somewhere that has them all. if you don't already have them. For each procedure or scan there should be a report from the person who did the procedure or scan. If there is tissue removed, there should also be one or more pathology reports. There might even be more than one pathology report (for example, sometimes there's an intra-operative report, other times they do a preliminary and a final report)--you want to see them all.

Ideally, you'll want to collect them from somewhere that has them all. For example, if all of your procedures & imaging scans were done at a hospital, you should be able to get all of them from the hospital's medical records department. If there was a surgery center, you can check there, otherwise you'll need to collect them from a doc. Maybe everything was copied to your primary care provider? If your primary care provider is willing to help, you can ask the various specialists/facilies to send copies to your PCP and then get copies from the PCP.

For instance, I'd be interested to know how the surgeon localized the tissue to be removed the first time--and what are the plans for the upcoming surgery? Was there a clip or marker placed during the first biopsy? Did they use a wire localization procedure for the surgery? (I'm not suggesting anything about how they should have localized the tissue, but your concern that they simply missed it means that exploring how they did it seems reasonable at this point.)

Does your surgeon think the problem was in finding the tissue to be removed the first time? That they didn't follow-up with the benign pathology report from the first time to make sure that the correct tissue was excised?

Finally, are you at a specialist breast care center? If not, you might want a referral for a second opinion, before proceeding again with a second surgery.

Best wishes,

LisaAlissa

dazedandconfused123

Hi LisaAlissa! Thanks for your response ...I was starting to wonder if my thread had shown up!

I have the reports stated above, the results of both biopsies and the pathology report from the 1st lumpectomy. I don't believe there were any other pathology reports from the 1st lumpectomy but I can try to find out.

Surgeon says she can't be 100% sure but her hunch (and mine) is that the area was there initially but was simply too small to be seen on initial mammogram / ultrasound. Both DCIS diagnoses have been microcalcifications.

Yes, a clip was placed during both biopsies.

A wire localization was done the day before last surgery and is proposed for the upcoming lumpectomy.

Yes, I am at a huge specialist breast care center in Miami (Baptist Health).

Annette47

All of my cancer (DCIS and micro-invasion of IDC) was removed by the stereotactic biopsy. The subsequent lumpectomy found no residual cancer. My surgeon says that is becoming more and more common as they can identify the cancers earlier/smaller and biopsy techniques are getting better. The problem is, there's no way to know for sure that they got all of it without doing the lumpectomy to check, as not all of the area is always apparent on scans (so I doubt the surgeon would be embarrassed about an “unnecessary" lumpectomy in such cases). The other issue is that many cases of DCIS are multi-focal, meaning that you could have several tiny areas at once which are somewhat separate from each other. Depending on where they are located, a biopsy might hit one and miss another. Same with a lumpectomy, although it is less likely as it removes more tissue. Either way, that is part of why they recommend rads afterwards - to mop up any stray remaining cells. If anything, your doctor should be second guessing the decision to let you skip rads, although they probably had good reasons for that recommendation at the time. Even with no cancer on the lumpectomy, rads were highly recommended to me based on my age and the micro-invasion.

proudtospin

I had 2 lumpies and was cleared for rads. They pulled a pre rad mamo and the RO looked at it with a fresh set of eyes and saw more DCIS at a dif point than the other docs.t

I considered it lucky as they quickly ordered another lumpie and delayed the rads until we were positive it was clear

LisaAlissa

Glad to help (find the thread, that is. ;-) )

The reason I asked about the path reports is that you said: "I did not receive or request final pathology report from initial surgery."

Besides the pathology report, there should also be an operative report from the surgeon describing the procedure. Same goes for the biopsies. There should be a separate report from the person who did the biopsies. Sometimes that isn't helpful. But for instance, the surgeon should describe what he/she did and the tissue samples removed. That description of the samples should match what the pathology report says they got.

Often, there isn't anything in the procedure report that adds additional information, but sometimes there is.

Sorry I can't be more helpful.

LisaAlissa

dazedandconfused123

Hi ProudtoSpin!

So did you have a total of 3 lumpectomies then? How far apart? Are you saying the radiation oncologist ordered another mammogram before radiation? Is this common?

dazedandconfused123

Thanks Annette! Interesting to hear that yours was also fully removed with a biopsy. Did not realize this was becoming more common. I had wanted minimal treatment from the beginnin but surgeon insisted I would need partial rads. After lumpectomy she agreed I could skip rads

proudtospin

my 3 lumpies were within a 3 month period and my RO pulled a post surgical-pre radiation mamo to confirm positions of stuff~

when he reviewed it, he called me to say he saw more DCIS in a dif place than the other stuff

when I sort of freaked he said it was not uncommon as the other docs were all focused on a dif quadrant

dazedandconfused123

Hi LisaAllisa!

Thanks again for your help! I have everything from the biopsies but only the final pathology report from the lumpectomy. I will try to see if there are any other reports from the lumpectomy