Am I over reacting?

Fortysomething

I I just left my surgeon's office after having 2 lumpectomies, now have clear margins. He said everything looks good will keep doing your yearly mammograms. I have high grade dcis. so is this the end of the road for me? At the first appointment he said oncologist is part of the treatment. I don't know what to think anymore my head is absolutely spinning I don't know am I making too much of this. I've never been crazy about this doctor but now I'm starting to wonder if I'm the issue. Do I just go on and wait?

candles1

So you only had surgery, but no radiation or hormonal therapy (if er/pr positive)?

I believe those additional therapies are the standard of care for high grade DCIS treated by lumpectomy. I'd seek a referral to a medical oncologist and a radiation oncologist.

MTwoman

Fortysomething, you don't have your receptor status listed, so I'll just go through what is "typical" (although there really isn't such a thing). So for pure DCIS (meaning they didn't find any micro-invasions or areas of IDC in the DCIS), the typical response can be: lx + rads (although now there is an oncotype test to see if the risk of radiation treatment outweighs the benefits) vs mx (although there are times that rads are used in conjunction with mx) followed by hormonal treatment (tamoxifen or an AI) if you are ER/PR+. Now, some women do not elect to do anything beyond surgery, and some women (like me) initially elect lx+rads, but end up with mx (multi-focal disease at young age = mx). As my dcis was receptor -, I was done after reconstruction.

But surgeons cut, they do not make the decisions about radiation or hormonal treatment. If you haven't yet, I'd schedule an appointment with both a Radiation Oncologist (RO) AND a Medical Oncologist (MO) to discuss your specific recurrence risk and what radiation and/or hormonal treatment could do to reduce that risk.

Please ask if you have any more questions. ((hugs))

ksusan

I agree with MTwoman's advice.

I'll add that for my DCIS side, I had surgery only. That was the only recommendation until the IDC was found in the other breast.

I take Tamoxifen, which was added because of my ER+ IDC side, on which I also had radiation because of a positive node, and for which I received chemo.

Fortysomething

I have no receptor status to give, I asked surgeon about it and he just brushed it off as not needing it. I just assumed my age and the grade and his first response that there is further treatment in my future. Thank you for responding, sometimes I feel like no one else gets it.

Artista928

Just for comparison, my mom had DCIS 2.5 cm tumor ER/PR+ (have no idea on her2) and she had lumpectomy, rads and is choosing to do an AI. Rads is to kill off what may have been left behind by the lumpectomy. She too had to go twice for lumpectomy for clean margins. She was 72.

pupmom

Fortysomething, that is NOT acceptable. Your surgeon should provide any information you request, available from the pathology report. Plus, you can absolutely demand a copy of the report. Sometimes I just SMH.

Beatmon

Get the copy of your pathology and surgical reports. You can go to the center and sign a release and they hand over a copy in about 5 minutes usually. If it is just a few pages my hospital doesn't charge. Otherwise sometimes it is 50 cents a page. Do you have any friends that have BC? They could give you the names of an oncologist they liked. Or call the hospital and ask for the Breast Navigator

Fortysomething

Sorry if this isn't allowed, but this is the 2nd path report, I don't think it says anything about the receptors

MTwoman

This report doesn't mention your receptor status. Sometimes, that will come later and be an addendum. Why don't you call the Path lab and ask them when they expect your receptor results will be ready and make sure they send you a copy.

pupmom

I guess every lab is different, but when I got my biopsy report, the receptor status was there. I believe it is completely standard. This is information every bc patient needs, and has a right, to know.

BarredOwl

The above report appears to be a supplementary or "amended" pathology report regarding the tissue removed by re-excision, per line 2 of the text.

There is a prior pathology report from the lumpectomy, which should be obtained. The prior pathology report on lumpectomy tissue may contain the receptor status information (estrogen receptor ("ER") and progesterone receptor ("PR")). Per line 4 in the above report, the prior pathology report was assigned a case reference number: "associated case SFXX-XXX" (see report for numerals), which could be used to request a copy of the report and all related test results.

I recently noticed that google captured images of pathology reports that others had posted here in the past, which I found disturbing and may raise privacy concerns. Therefore, I would recommend deleting the above report from this website today because it includes such specific information, like the actual case reference number and doctor's name, which could be used to obtain personal information via phishing.

BarredOwl

Fortysomething

So I did some digging and found my "revised pathology", what the hell? Do I have DCIS or not? I had my boobs cut on twice and then it's changed or is this just another opinion?

This is my revised 1st path report (I just found it yesterday)

After tumor board presentation and due to the complexity of the case, age of the patient and potential subsequent treatments, I felt it prudent to gain expert consultation from breast pathologist at the Mayo clinic. They agree that the lesion is severely atypical but stated in their opinion fell just short of calling this full DCIS. They recommended wide local excision with complete negative margins. The patient had a negative re-excision performed and finalized in case SSXxxxxx.

My final path report from last lumpectomy states clinical history as DCIS.

Is this just one opinion or did it change? I'm so pissed over all of this.

MTwoman

Fortysomething, it looks as if your local tumor board wanted an expert opinion on your case, and therefore the Mayo clinic consultation should take precedence, however you should ask for a consultation with someone on your team to confirm this. It does look like their recommendation was the same, wide local excision with negative margins. What is confusing is that your final path report does not reflect the Mayo opinion. That would be confusing and frustrating. I'd schedule an appointment to discuss.