DCIS newly diagnosed with High Grade

LAstar -

So glad for you the right breast is clear! I am hoping I have the same results and just have to deal with a "pure" DCIS in the left.

You make a good point about taking off a cancer-free breast (even if BRCA +) at the same time as the other, especially if you are going to be debilitated and need the healthy side to recover with. I was considering the same thing that many on here spoke about, the fear and anxiety of recurrence..but your comment has made me reconsider if the right side is clear.

Thank you for your insight!

monarch17. Thank you. This is why I don't like the oncologist but I don't need to see her again for six months. By that time I will have switched to another one I have in mind. I saw this one four times and each time I felt she didn't take care of me. I sort of felt she lied. Because DCIS is now called IDC high grade and it has shrunk. And axillary matted lymph node shrank too. So it must have been IDC in the first place. Now I have surgery scheduled for Axillary dissection and lumpectomy. Thankfully I think I have a good surgeon.

Great news, Ninatchka! Whew!

monarch17, Hi, thanks for this reply. The only record of what is recommended is on the consent form that I signed first, read second. I don't know if I can get in to see another oncologist before surgery. I have a call into a nurse at the breast center that is good with answering my questions. I believe my surgeon is strictly oncologist surgeon with many years experience Award for One of Best Breast Surgeons in the country as well as Award for Compassion three or four years recently. I am to have 35 radiation days after I heal from surgery. Read through many radiation posts last night and see it is a good thing. I have had Ct scan and Pet scan to check for other areas and all is clear right now. I get reclast once a year for bone density, that is good for taking Femara. Have been eating healthy for a few years. I think this oncologist has a communication problem (nerdy nerd:) and I should just move on. I might send her a note but it won't change things. The best msg to send is to find someone else.

Please tell me. Last week I had Mammo again and US again on rt breast and arm lymph. But they didn't check the left. Last was six months ago. I would think if I'm cancer prone they would make sure nothing else popping up? Thx

monarch17 thanks, I had all tests on both sides in early April. Left side showed something but they say it's a normal lymph. I guess I will have another look, Mammo in six more months. Need to find out what the plan is. My onc has done me a great service, if it weren't for her I wouldn't be here getting more detailed "live" information 😃 so things are looking up. My surgeon is "Leading Expert" in Breast Cancer/ Neoplasm. I've been watching him give a presentation on You Tube. He does all kinds of cancer surgery. I think I'm good there. yay! Are you also a doctor or nurse? Am I allowed to ask that? I will follw your posts and keep everyone here updated. This place is the best

Hi, Monarch 17. I'm not so sure I have a team, more like a Surgeon whose nurse filters my questions and a radiologist I met once and can't remember much. Last April. Interesting you read cancer cells because that is my new question. How do I know pathologist hasn't made a mistake? If I were going to get a reconstruction I would want both sides to match! That means masectomy on both sides right

I am not having a mastectomy, Monarch is thinking about it.... But thanks

Only thinking about mastectomy if it cannot be taken out with lumpectomy (i.e too large).  Had the repeat MRI yesterday so hope it paints a clearer picture of options I have. 

As far as pathology (and any test for that matter), people can make mistakes...but in most large hospitals and laboratories I believe the level of care is quite good.  It is glaringly obvious for those medical professionals that make big mistakes, such as calling something postive for malignancy when it is negative - and it does not go unnoticed by the oncologists, but that is pretty rare.  It will be more vague diagnoses such as "suspicious" or "indeterminate" or "requires further testing" that I believe follow-up is needed before irreversible decisions are made.   A lot of second and third opinions among pathologists usually take place with a positive diagnosis, if that makes you feel more confident.

So I guess my point is to trust in the diagnosis (especially if it has been confirmed a few times with different sources), but always ask for a second opinion if something seems off.  Knowing what I know from the medical literature, the challenge seems to be excising the tumor(s) completely with clear margins if possible, and treating with radiation and/or hormone blockers and/or chemo depending on the diagnosis, grade and prognosis. 

 It is the re-excision if they didn't get it all the first time that scares me.  Must scare a lot of other women that are opting for more mastectomies (even with a healthy breast), then the medical community has ever seen.  Plus if the lumpectomy/radiation treatment does not work, and if a tumor reoccurs then you cannot have radiation again, and also reconstruction will not be as successful - what I have been told from my doctors.

I am also not leaning toward taking off a healthy breast just to match, because that is still a major surgery where complications can occur. I also believe to recover more quickly you can do so if both sides and arms are not compromised.  Just my thoughts now, although my BRCA results are not back yet...

April485 - I see you had two lumpectomies less than a month apart.  Can I ask what happened there?  And how did you tolerate the radiation?  Did you have the treatment over 6-7 weeks?  Any additional insight would be helpful.  Have Grade 3 DCIS with necrosis (meaning aggressive growth), , large tumor, ER Negative, and under 50.  Statistics say this combination has the most likelihood of progressing to invasive cancer, and recurring.

I am hoping I can beat those odds...fingers crossed! Regards

Hi Monarch,

I had partial breast rads in a clinical trial that was 10 treatments over 1 week, 2x a day, 6 hours apart. I was grade 2-3 (was quoted both in my path report from different sections of my lesion. One of my margins was under 1mm (very very close to the ink) so in order to qualify for the trial, I had to have a re-excision even though my margin was technically negative. I had gold seeds implanted in my breast prior to rads and had to have a CT scan daily to make sure it would be given with pin point accuracy. Basically it was like having 10 boosts as the amount of gays (the way rads are measured) in each dose was much higher than it would have been over 6-7 week protocol. I handled it well..got a little pink and 2.5 years later, my breast has shrunk a bit in comparison to my other one (am 60 so no biggie as am not in the bikini years...lol) and had a heavy dose of exhaustion when I was done with the rads. Worked the entire time 5 hour days (had my first dose at 7:30 and second at 1:30pm and then went home) and am happy I did the trial. Am clean so far in terms of mammos and no call backs or scares except this year they added an ultrasound to make sure scar tissue was just that...scar tissue which it was. To qualify for the trial had to be either DCIS or stage 1, lumpectomy within 2 months of rads, over 50 and clean wide margins. My treatment was at Yale in CT. HTH!

yes that's right, the Onc and pathology report called it DCIS. After six months of Femara the only thing that changed was the size of the DCIS and the lymph node. Now it's been renamed IDC. This is where I came in. Upset with the Onc for the confusion I had. Yes it's a teaching hospital. The thing is my surgeon is a leading expert in Breast Cancer/Neoplasms. He called it DCIS last week and I questioned him. They say there is a microscopic primary near my DCIS spot which is 4mm. And will be found when tissue goes to pathology after surgery. It's still a problem in my mind but treatment is the same. Surgery and Radiation soon.

I would like to question the Onc but not sure how to word it. There may be something I missed...

Dtad if you can figure it out it would be a great help, thx

Hello Ladies,

I think this is all very valuable info, especially if it gives additional questions to ask our doctors.

Marijen - as far as BRCA testing, they recommended it to me and I don't have the Ashkanazi (sp?) Jewish background at all.  I think the more important factor is if you have had blood relatives with either Breast or Ovarian cancer, then they try to map out your family tree during a genetic counseling session, before they send you to the lab to draw two small vials of blood. The BRCA panel is now a panel of about 20 different genetic mutations, and the menu is expanding as they find more.  It may be more of a "pro-active" reminder IF you have the gene mutation (not that you are guarenteed to get cancer of the breast and ovaries), you are at a higher risk of getting it so may encourage a patient not to blow off surveillance appointments.  Not sure how much it costs...my medical bills for the procedures are just starting to roll in.  I  am thankful I have a good plan in my state.

As far as necrosis, you can see it under the microscope.  Usually a bad sign that if found around cancerous cells, the cells are growing fast enough that it is causing cell death and "crud" in the center of the tumor. The grade of 3 (also known as severe or high-grade) is the highest that can be found in DCIS, worst looking cells - hence the most aggressive in nature, most likely to invade if left untreated. I think it is not so uncommon to be diagnosed with Grade 3 high-grade, or severe DCIS on one part that has been sampled from a tumor - then find out later there is invasion in another area not seen at the time. Obviously your "DCIS" was not a "pure" DCIS when it was diagnosed, and had already spread to a lymph node.  It is a known dilemma with the diagnosis of DCIS, not a routine diagnosis that doctors commonly treated 15 years ago before advanced mammography.

Also remember that a surgical oncologist will rely on what the pathology report says, and treat accordingly.  They will admit they don't look at cells, at any of the radiology films, etc..but will talk to those experts.  Unless you can see all of the edges of the tumor sliced in different planes or sections, there always could be areas of microinvasion.  I think that is why the treatment suggests radiation with lumpectomy, even with a clear margin for Grade 3 DCIS.  Have you only had one core biopsy of the breast lump to diagnose the condition? What about a fine needle biopsy of the affected lymph node to confirm that the cancerous breast cells were found in the node?

A second pathology opinion is never a bad idea if the results are not clear cut.  They are samples from you, belong to you, and you can take it wherever you want if you are willing to pay a consulting fee.  I am getting ready to pull my own slides and review them before deciding on what kind of surgery I choose, although it's giving me a bit of anxiety to think about looking at my own "bad" cells under the microscope.  Weird and surreal.

 I am not sure how doctors can "assure" you that no lymphedema will occur.  I know it is a lesser incidence with sentinel lymph node biopsy, but with dissection/removal of any nodes, I don't think one can assume that the body will react exactly the same and not have lymph fluid build-up in tissues. My doctor also told me that radiation may also worsen it. Not to try to worry you more but just want you to be on the look-out for it early after surgery and let your doctors know...let the lymphedema go too long and think it will just go away, it may cause permanent issues.

Not sure about accelerated radiation and what is the outcome of reconstruction with that as well.  Just regular dosage of radiation seems to mess the skin up enough that cosmetic surgery does not have optimal results, so I am thinking that would be worse..?  My thoughts are with you for your surgery and the best possible outcome and recovery.  Please let us know how you are doing!

April485 - thanks for the info.  Makes sense now that it was part of a clinical trial.  Glad your tests are clear! If I have to have radiation I hope I can get through it like you!

Regards everyone.

Marijen - not making sense that report was revised by the oncologist, should be more to that.  Check to see all sections of the pathology reports, where the site is (breast, lymph node..) each will have a separate diagnosis.  They will put different passes with the needle in the same jar, from the same lump - but they won't mix a breast lump and lymph node. Wouldn't be a bad idea to get all your test results together, put them in order of date for reference.  You will want to do the same thing with the upcoming lumpectomy and lymph node results.  Makes it much easier to reference when speaking to your doctors and asking additional questions, and you can catch contradictions.

Just a suggestion - but I understand if not everyone really wants to hold on to all that paperwork.  I have a extra stupid bag I carry around to keep it with me and take to doctor's appointments.

Today I should be getting the results of my repeat MRI, and possibly BRCA results.  Anxiety and stress is building. I cringe when the phone rings and think it is my doctor with more bad news. I think I can feel a palpable small lump in the other breast not diagnosed with DCIS, so I am sure it will probably be biopsied tomorrow.  Then the wait for that...again...

Didn't Tom Petty say "the waiting is the hardest part..." ?  He was right.

marijen - your pathology report description is using the T/N/M system -

Tis - T= tumor, is= in situ

N2 = N is nodes, 2 means there are 2 involved

M0 = M is metastasis, the zero means at this juncture there is no distant metastasis.

The ER/PR/Her2 is hormonal receptor and Her2 status of the biopsy sample.

It appears there is an additional report, with N1 instead of 2 - meaning 1 lymph node instead of two.

marijen - I am curious though - did you have a lymph node biopsy or is this a "clinical staging" based on a combination of imaging and biopsy? The pathological description is somewhat confusing - since you can't have DCIS in a lymph node, is there a pathological description of an invasive component?

barredowl - your query is just why I asked - seems to be missing some info and the staging "clinical" in nature - all can change after the surgery scheduled for next week.

marijen - I am hoping things become much more clear for you after your lumpectomy and SNB next week - it seems there is either some miscommunication/missing communication amongst your docs, and/or with you. Wishing you the best.