Biopsy report seems to be incomplete.

Those things don't come from a biopsy, but from surgery--or more specifically, the pathology report that comes out after surgery. Reading this might explain: http://www.breastcancer.org/symptoms/diagnosis

EbonyEyes, I too am sorry that you have deleted all your posts. I saw that they were very important, and do hope you will feel more welcomed, than that unfortunate event. I am truly sorry, and hope you stick around.

ebonyeyes post as many questions as you want, and ignore anybody who says otherwise. Most women on here are very caring and concerned, but there are a few abrupt people. Just ignore them. That's what I do. I even had one send me a personal email to tell me what I said was wrong and then proceeded to chastise me about incorrect information. Yeah right, I blocked her.

You are not posting too many questions. You have, however. started a number of different threads and that is confusing for us to keep up with. If you would just add new questions and concerns by clicking on the, "Post a Reply" button above, it will be easier for everyone, including you, to keep up with your "progress."

BarredOwl so glad that you were able to respond here as I seemed to remember that there was someone here with experience with multifocal DCIS so could explain why a mastectomy had been suggested instead of lumpectomy.

EbonyEyes sorry for my garbled response earlier but it was 2:30 am my time so very quiet on the boards and I thought at least someone should respond so I did, even though I had an ultrasound guided core biopsy rather than stereographic <?> so didn't understand some of the terminology in the report.

There is a lengthy guide to DCIS for the Layperson posted by one of the members that is pinned to the top of the DCIS forum. I will try to get a link. It may help to answer some of your questions or just as important help to bring up more questions to ask.

Edited to add link to Beesie's Layperson's Guide to DCIS
https://community.breastcancer.org/forum/68/topic/790992?page=3#idx_61

Kathy

I am glad others have told you that you can post as much as you like and you never have to delete any old posts. In fact, your old posts can be helpful to others who are going through the same thing as you. And BrooksideVT has a good idea, try and stay with one thread at least until you are treated and it will be easier for us to help you. Cancer creates a lot of anxiety in the person who is beginning diagnosed and everyone here understands that.

Best wishes to you.

Hi again:

As far as what kinds of questions you might ask, I have the following information. It is a lot to digest. You can read it through once for information only, and then come back to it later after you have finished your general information gathering if you wish. This is just one approach---approach it whatever way works for you!

Sometimes it can be helpful to take someone with you to the appointment to have a second set of ears and another notetaker, assuming they are a calm and organized trusted person. You may also prefer not to take anyone.

The surgeon will want to give you their advice first. They may address reconstruction. Just listen and take notes on whatever they say separate from your question list (don't try to correlate them with your questions, because it will distract you). Then, when the doctor is done with his spiel, tell him you have a list of questions, and would like a moment to review the questions to confirm they have all been addressed. Silently review your question list one by one, and ask any not already addressed (one by one), then continue down your list systematically.

The American Society of Clinical Oncologists (ASCO) has sample question lists here. See the section entitled, "Questions to ask your breast surgeon, before your first surgery":

http://www.cancer.net/cancer-types/breast-cancer/q...

If you are typing your list, you can copy these over to a draft document, and edit them (reword, add, delete or reorganize) as desired. You may know the answers to some already!

From my materials, some of the questions I asked included:

What is your medical specialty? Board certification? What percent of your practice is breast surgery or breast-related?

What diagnosis and treatment guidelines do you and this hospital use? (It is likely the answer will be the National Comprehensive Cancer Network ("NCCN") guidelines)

Does the hospital have an online medical record system for patients or how can I receive copies of reports and results?

Please review the biopsy report with me. (I also listed the specific terms I still did not understand and/or if I wondered if there was some implication for treatment.) Ask about the implications of ER/PR status and HER2 (or if HER2 testing will be done on the invasive component pre- or post-surgery).

If you have a family history of cancer, disclose this completely and ask if you should consider genetic counseling. If so, request a referral, and ask what is the recommended timing of counseling and possible genetic testing with respect to surgery.

Would you recommend any further imaging studies (e.g., MRI) before surgery?

What is your recommendation for surgery and why? (in view of the area of invasion: lumpectomy with sentinel node biopsy plus a course of radiation OR mastectomy plus sentinel node biopsy ("SNB"), AND in either case, axillary lymph node dissection, if indicated by a positive SNB)

How many times per year do you perform the type of surgery recommended? How often is the procedure done at this facility?

Please explain each of the procedures you are recommending.

How long will the surgery take with no reconstruction? with reconstruction?

Who will be on the surgical team and who will perform the various aspects of the surgery. (Ask this particularly if at a teaching hospital).

If the SNB is positive, is radiation in lieu of axillary node dissection (removal of more non-sentinel nodes with increased risk of lymphedema) possible and recommended? Are there clinical studies supporting safety of this approach in the mastectomy setting?

What other tests are needed before surgery in view of my medical history? (e.g., blood work, EKG, X-rays, others?) (I had MRI, blood tests, and EKG only.) How are these scheduled?

What is the recommended timing for surgery? How is it scheduled?

If I am interested in a second opinion, how do I arrange for that?

You don't have to decide about reconstruction just yet, so you can information gather on both options.

If you chose to have a mastectomy without reconstruction, emphasize that you would like to be as flat and smooth as possible, with no extra skin. (Re-state this on the day of surgery.) Also, ask about whether a single incision or two incisions will be used for the breast and nodes. Ask whether the incision over the breast will be horizontal or angled up and outward. (My surgeon liked angled incisions, which was also my preference (looks like a gentle 25-30 degree angle.))

If I am interested in reconstruction, is nipple or skin-sparing mastectomy possible or contraindicated? (This is a question for the breast surgeon. Mine told me that nipple sparing was not feasible due to disease under the nipple, but skin sparing was available; however, they would not do skin sparing mastectomy, unless I elected immediate reconstruction. With a delayed reconstruction, skin sparing would not be done (The surgeon who needed to go to finishing school colorfully said this was because I would end up "looking like a shar pei".))

If you would like to learn more about reconstruction options (immediate or delayed), you may wish to ask for a referral to a plastic surgeon).

How long will I stay in hospital, what kind of after care will I need at home, and what activity limits will there be? What is the estimated recovery time?

Be sure to address any possible special circumstances due to your health history (e.g., diabetes, blood pressure, pain medication limitations, etc.).

Is there any educational information (pamphlets or training) available?

If I have any follow-up questions, is there a way for me to contact you or do you prefer I start with the nurse navigator?

I tried to channel my inner Mr. Spock (all logic and facts) during the appointment, and to defer any reaction until later. Let us know if you have any questions as you study and prepare for your appointment.

BarredOwl

I guess the title of this post, "Biopsy report . . .," makes it pretty evidently a typo.

EbonyEyes indicated the type of breast cancer she has: "I have two areas of cancer: one is DCIS the other IDC/DCIS," and in my post, I stated my assumptions regarding the size of the invasive component (gleaned from another thread): "However, if your invasion is very small (3 millimeters), and the rest is DCIS (which does not respond to chemo). . . ." I trust that EbonyEyes and other readers will understand that my comments address this particular fact pattern only, and that I am not trying to address every possible kind of breast cancer or treatment. Personally, I still think it quite unlikely that neoadjuvant chemotherapy (pre-surgery) would be offered in this case for any purpose.

BarredOwl

Hi EbonyEyes:

When I got my biopsy results back, I felt the same way as you. My biopsy found DCIS, but it took me a while to understand exactly what that is, and that it has a very favorable prognosis. However, at this point in the process, one knows that the surgical pathology and lymph node assessment are needed to fully understand prognosis. So while you have some info, you are back in the unknown like you said: "Hearing that diagnosis was not as bad as all that waiting but I guess the waiting game starts again."

Sometimes, other things are found in surgery, and sometimes not. My surgery found a lot more DCIS, micro-invasion (<1 mm), plus some isolated tumor cells in a node on the DCIS only side (these are considered node negative), and these findings would not have materially affected my prognosis. But it also found a small amount of IDC (1.5 mm), so I was actually Stage IA, also a favorable prognosis. Chemo was not recommended. I was offered tamoxifen, but the medical oncologist told me it would be reasonable not to take it in my case, and I did not (risk/benefit not worth it to me).

I did a little googling and could not find anything about Lucentis causing cancer. The mechanism of action of Lucentis is actually similar to that of a class of drugs called "angiogenesis inhibitors" that are used to treat some solid tumors. So, it seems counterintuitive that Lucentis would cause cancer.

Specifically, Lucentis binds to and inhibits VEGF-A. VEGF-A is believed to play a role in the abnormal growth of new blood vessels (a process called "angiogenesis") in the eye, and to cause leakiness of the vessels. Lucentis inhibits these activities in pre-clinical studies, and is considered to be an "angiogenesis inhibitor".

http://www.lucentis.com/information

http://www.gene.com/media/product-information/luce...

Tumors enjoy having new blood vessels grow near them, and may spew forth substances to encourage it:

http://www.cancer.gov/about-cancer/treatment/types...

So, a number of angiogenesis inhibitors have been developed to treat various solid tumors (e.g., Avastin). Lucentis has a similar mechanism of action to Avastin, which also inhibits VEGF-A:

http://www.avastin-hcp.com/about-avastin/proposed-...

At least from this information, I would not worry too much about taking Lucentis. However, it is always a good idea to review all of your medications with an oncology expert, so you can note this down as a question to ask the medical oncologist when you meet with them after surgery.

Keeping you in my thoughts.

BarredOwl

that's good news. That is a very small tumour so it looks like it could be removed by excisional biopsy. Avoiding chemo and radiation is great news. You should be done with this soon. Hope you have a good sleep

Hi EbonyEyes:

You asked about:

"IDC/DCIS, intermediate grade, tumor size 0.3 cm, central focal necrosis solid and papillary types

excisional biopsy recommended, further treatment may be unnecessary"

This is the pathologist's comment, which is encouraging for what it is worth. An excisional biopsy is essentially a "lumpectomy" alone (not followed by a course of radiation). However, as you have appreciated, the breast surgeon is the real expert regarding treatment, and he may or may not agree.

In addition, the surgically removed material will undergo a pathology analysis, and if there are any additional findings, that might change the recommended treatment options.

To me, it is a little vague as to whether the descriptor "central focal necrosis solid and papillary types" is referring to the DCIS or to the IDC or to both. This is something to ask the surgeon.

It appears that it would be a favorable observation if the IDC component was "papillary".

(In contrast, "micropapillary" seems to be less desirable.)

Here is what I found about "papillary":

Low and moderate grade DCIS can appear a "papillary" (finger-like) or "solid" (filling the duct).

DCIS can also display some central necrosis (cell death) in the center of the duct. If they are referring to the DCIS as "intermediate grade" with some "focal necrosis", I am no expert, but from the language quoted, it seems like there is only some necrosis, because heavy necrosis is often referred to as "comedo necrosis" and seems to be associated with a high grade. I assume "comedo" does not appear anywhere in your report. (I had a mix of grade 2 and 3, with some comedo necrosis.)

There are pictures of "papillary" DCIS and "solid" DCIS versus "comedo necrosis" DCIS here (scroll down to the discussion of "GradeGrade I (low grade) or grade II (moderate grade)" and "Grade III (high-grade) DCIS"):

http://www.breastcancer.org/symptoms/types/dcis/di...

IDC can also be "papillary" and is often mixed with DCIS as noted here:

http://www.breastcancer.org/symptoms/types/papilla...

I also have a book from 2005 (kind of old) that says this (emphasis added):

"Papillary Carcinoma

The cells of this uncommon breast cancer stick out like little papules, or fingerlike projections. This form of cancer is most commonly in situ. On occasion it also contains an invasive component. Both lymph node involvement and metastatic disease are rare. The National Surgical Adjuvant Breast and Bowel Project study found that 2.5 percent of invasive breast cancers were invasive papillary carcinoma."

Excerpt From: Carolyn M. Kaelin & Francesca Coltrera. (2005) "Living Through Breast Cancer."

See also:

http://www.hopkinsmedicine.org/kimmel_cancer_cente...

As always, I am just a layperson, so be sure to ask your surgeon to explain these pathology observations to you, and the implications of same for your surgical options and his recommended next steps for treatment (e.g., excisional biopsy/lumpectomy, likely sentinel node biopsy (because "invasive"), possible course of radiation? other?). From posts above, there was some discussion of when mastectomy might be indicated instead of lumpectomy. The surgeon's recommendation (not the pathologists) would be your guide.

I might also ask the surgeon to comment on whether the presence of a palpable mass is consistent with the pathology findings, and whether or not it has any possible implications for your surgical options.

Keep in mind that with a lumpectomy, if the margins are not adequate, an additional procedure (re-excision) may be needed. Occasionally a further re-excision, and very very occasionally, a mastectomy might still need to be done for extensive disease.

You do not need to decide on a surgical option tomorrow. You can ask about the recommended timing for surgery, and take some time to think, do more research, and if you wish, obtain a second opinion (on pathology and/or treatment options). For now, tomorrow just learn as much as you can about your pathology report, your surgical options, and the surgeon's recommendations.

Whether additional treatments, such as radiation, anti-estrogen therapy (like tamoxifen or an aromatase inhibitor), and/or systemic treatments (chemo or herceptin), will be considered or recommended will not be certain until the final surgical pathology and staging is complete.

We'll be thinking positive thoughts for you tomorrow.

BarredOwl

You are speaking to many women here who are "freaks".

But you are right. I would not want to be in your shoes.

I'm not a 'freak' - nor is anyone else who has had a UMX or BMX! Some choose reconstruction, some (like me) choose prosthesis. There are many who know I wear a prothesis all the time but even most do not know which side. We are the same person we were - that is not changed, just a bit different body but who and what we are is the same. But then our bodies change over the years anyway.

With all the meds available today chemo does not equate to nausea (or bad nausea) for most. For many, there is no nausea at all. Hair - it does fall out with most chemo but it grows back. You can also check out Cold Caps which some use to prevent/lessen hair loss during chemo. There are a lot of threads here about it - I didn't do it so have no experience with it but there are quite a few who do.

I am one of the fortunate ones who went into TX with basically no health issues (other than arthritis in upper back and osteopenia) and still have no bad health issues so have no idea of what dealing with major health issues would be like - my Prayers go out to you.

I was not told what my 'chances of survival' were when I was DXd. I was told that the 5 yr survival was 25% at that time for IBC. When I hit the 1yr post DX all my Drs told me they had not expected me to make it to a yr. Well that was 5 yrs ago and I'm still here, living/loving life and still NED (No Evidence of Disease)! There are many of us. You will be too.

Hi EbonyEyes:

I am glad the tumor IS tiny (0.3 mm), and that is some good news for now. But I know what you mean. As you know, I had multifocal DCIS on biopsy, and so mastectomy was advised. (The micro-invasion and 1.5 mm invasion was found in the surgical pathology done after the bilateral mastectomy.) In one way, I was glad to get as much of it off of me as I could (rational or not).

As for radiation treatment, that is not usually the surgeon's area of expertise. After surgery, you should request to see a Radiation Oncologist ("RO") to review your surgical pathology results, so they can advise you whether, in their view, radiation is indicated or not. If it is, the RO will explain to you why they think it is indicated, what risks radiation would address, and provide an estimate of that risk to help you decide upon such a course of treatment.

BarredOwl