I am so scared please lift my spirits

Researching and looking at pictures etc. is how I'm keeping myself together, too. That and keeping busy, walking, etc. And daydreaming about how nice I'll look after reconstruction. That consolation prize really does help keep me going

Rosierosie -

That’s actually really good news, given the situation. DCIS is VERY treatable.

I would however, encourage you however to come down to the DCIS forum (further down the main page) and read some of the stickied posts there, as well as read up on DCIS in the main section of Breastcancer.org, as it is much better to be educated about your diagnosis and treatment options.

One question you should be asking your surgeon is why they are planning on a sentinel node biopsy - that is not standard practice for a lumpectomy for DCIS only. It is usually done along with a mastectomy as once the breast has been removed it can no longer be done, but with a lumpectomy, it is more usual to wait until after the final pathology from the lumpectomy. If that shows nothing other than pure DCIS (which given that yours is low grade is very likely), then there is no need to undergo the small but real risk of lymphedema from the SNB. If the lumpectomy showed a small invasive cancer (unlikely with a grade 1 DCIS), then they could always go back and perform a SNB at a later time.

They wrote the part about possible axillary dissection just to cover themselves on the off chance that the SNB shows cancer in the lymph nodes, but again, with a diagnosis of DCIS stage 1, that is VERY unlikely.

Rosie, I also have DCIS stage 0 grade 1 and my lumpectomy is on Tuesday. I was originally scheduled for sentinel node biopsy also but I cancelled that portion of the surgery. Initially I'd insisted on the SNB being done along with the LX even though my surgeon actually said it wasn't necessary. With the amazing information from this site and my own research I realized I wanted the SNB simply because I was afraid and didn't have all the facts needed to make the right decision. I'm so grateful now to not have to endure an unnecessary surgery with possible life long side effects to say the least. If it turns out I NEED the SNB next month or next year or 10 years from now well so be it.

"All DCIS is considered stage 0 breast cancer — the earliest stage possible. "Stage" describes how far the cancer has spread beyond the site of the original tumor. Even though DCIS is always considered stage 0, it can be any size and be located in any number of areas inside the breast."

Oh and yes you are so right! Sooo much info to keep track of. I feel confident in where I am today with my case but when treatment time comes that's another thing.

Invasive tumors can't truly be staged until after surgery: staging of IDC reflects a combination of tumor size and lymph node involvement, which can't be known until the tumor is removed and at least the sentinel nodes are biopsied. But DCIS is considered stage 0 even before surgery, unless and until proven otherwise. As long as it remains within the ducts, it cannot metastasize to the nodes, which is why SNB isn't necessary unless invasive cancer is found. JACTsmom and rosierosie's biopsy reports both indicate DCIS only, so there is no need for them to get SNB at the time of lumpectomy. But iammags, because your biopsy showed both DCIS and IDC, the cancer treatment is driven by the invasive cells--and in this case, IDC can metastasize so you would get SNB.

rosierosie, talk to your surgeon and express your concerns. Could be that he won't do the SNB if the lumpectomy reveals only DCIS, but is trying to get your consent to SNB at the same time if it appears while you’re still in surgery that the tumor actually contains some invasive (IDC) cells (or as soon as possible after the surgical path report if IDC is found by the lab). The “axillary node dissection" is in case the SNB if performed reveals positive nodes with the likelihood that cells may have spread beyond the sentinel (s) to the non-sentinel lymph nodes in the armpit. You may well not be getting all the procedures listed, but he probably wants to let you know you might end up needing them and get your consent should that be the case.

But ask, tell him what you want or don't want or why, and take notes--better yet, ask to record your visit. If he gets defensive about that, explain that you are still in shock about being diagnosed and might get confused about or forget some of what he says--it's to help you clearly understand in case you have to go back and listen to it later.

Rosierosie:

Some hospitals have been slower than others to update their practices regarding sentinel node biopsy (SNB) for apparently pure DCIS (any grade, with no evidence of invasion) when treated by breast conserving surgery (lumpectomy).

Lymphedema is a complication that can occur in some cases with SNB (estimates of incidence vary), the risk of it showing up is a life-long risk (it may appear years later), and once it appears, it is a life-long condition. Although the baseline risk may not be large with SNB, if it develops, the impact of lymphedema is significant.

You can raise the question of sentinel node biopsy for apparently pure DCIS in your case by telling your surgeon that you understand there is some risk of lymphedema, and that you are wondering if in light of your pathology and imaging findings, you could reasonably elect to have lumpectomy (without SNB) as a first procedure, obtain review of the final pathology, and only if invasion is found, then undergo SNB in a second (later) procedure.

If the surgical pathology shows no invasion, you would be able to avoid the SNB procedure and its accompanying risks, including the risk of SNB-associated lymphedema.

Again, most lumpectomy patients with apparently pure DCIS can avoid SNB completely, or at least defer it until it is clearly medically indicated. Invasive cancer is found in only about 10% to 20% of cases overall.

A possible exception in which SNB may be considered for apparently pure DCIS treated by lumpectomy is the case of excision in an anatomic location (e.g., tail of the breast), which could compromise the performance of a future SNB procedure.

Note that with a lumpectomy for apparently pure DCIS, if clean margins are not obtained, a further surgical procedure(s) may be needed anyway (re-excision procedure to obtain clean margins). So, presumably you are willing to undergo a second procedure in general, and have no contraindication for a second procedure (which entails another round of some type of anesthesia, etc.)

For a more information, see the recent discussion with JACTsMom here:

https://community.breastcancer.org/forum/68/topics...

BarredOwl

Hi Momoftwins:

Since you had known invasive disease (IDC) from biopsy and did not have pure DCIS, it seems that you appropriately received sentinel node biopsy. As you have appreciated, your situation appears to be distinct.

The information I provided above to Rosierosie for patients with apparently pure DCIS and receiving lumpectomy is based on current consensus treatment guidelines for breast cancer promulgated by the National Comprehensive Cancer Network (Professional Version 1.2016), which are quoted here:

https://community.breastcancer.org/forum/68/topics...

BarredOwl

rosierosie, I’m going to re-post a photo here I posted on a much earlier thread. Shortly after my diagnosis, a week before my surgery, I was still feeling quite numb. Went to a business meeting downtown and took public transit, since it was a nice warm night and I was still in the best physical shape I’ve been in 20 yrs. Got off the train and began walking home. And then, on the sidewalk, I was stopped in my tracks by this:

Nobody knew I would be walking down that sidewalk at that time--certainly nobody who knew me closely enough to be aware I had cancer was inclined to write on the sidewalk. I pulled out my phone and took the shot just to make sure it was not a mirage.

hi. I was just diagnosed with dcis. Wondering what percentages they gave you all for recurrence of lupectomy vs masectomy?

Hi Robinda

According to Breast cancer.org information, it states "Lumpectomy followed by radiation is likely to be equally as effective as mastectomy for people with only one site of cancer in the breast and a tumor under 4 centimeters. Clear margins are also a requirement (no cancer cells in the tissue surrounding the tumor)." Here is the entire link http://www.breastcancer.org/treatment/surgery/mast...

This is the same information I was given by my surgeon when I was first diagnosed. Chance of recurrence is based on so many factors and, in the end, there are no guarantees, but the MO and surgeon should be able to give you all that information so you can make the best educated decision. As so many here have said, please take a notebook, write down all of your questions and then write down all of the answers. It helps so much when you can go back and go through all of the information and digest what has been given to you. If you have a care navigation nurse available to you, talk to him/her. They really are a wealth of information and act as an advocate for you as you try to sift through it all

Rosie...maybe ask WHY he feels so strongly that you have it. Again, my situation was very different but, if he is suggesting you have the SNB, he/she must have a reason and you have the right to ask and understand the reasoning

Definitely ask your surgeon why, if you have such an early non-aggressive (some even say “indolent,” or “lazy”) cancer that is confined to your ducts and by definition can’t spread to your nodes, he insists on a sentinel node biopsy if you’re getting lumpectomy. Tell him you don’t want to risk lymphedema and you don’t want to be under anesthesia and have any more incisions than you have to. But also tell him you understand that if invasive cancer is found, either while you’re still on the table or by the pathology lab after your DCIS is removed, you are willing to go back in for that sentinel node biopsy because it could prevent your having to get a full axillary lymph node dissection in the event the sentinel nodes are negative.

If he still insists you need it, I would thank him politely, ask for copies of your charts and imaging, and get a second opinion. Any reputable and honest surgeon would not object. He might say, “well they’re going to come to the same conclusion” but should still give you your records and not stand in the way of a second opinion....at a different facility, preferably part of a different health system. If he refuses, go to a good breast cancer center within a travelable distance and start over. It’s YOUR life and YOUR body (not to mention YOUR co-pay). Sad to say, but some doctors are just cut-happy. When one is a hammer, everything looks like a nail--especially when this is the way he’s always done things and nobody’s challenged him because they’re afraid to.

Don’t be intimidated by him just because you hear he’s “highly-regarded.” Highly-regarded by whom? What’s he going to do to you if you challenge him--sue you? Arrest you? Smear you on the Internet? Of course not! As long as you’re awake, clothed and not on the operating table, and he’s holding pen & paper and not a scalpel, he has NO power over you. He works for you, not vice versa.

Thank you!!!

Hi RosieRosie,

Stay strong. My mom was just diagnosed with Stage 1A breast cancer back in November, had a double mastectomy followed by immediate reconstruction and all pathology came back stating that no lymph modes were compromised and tumor was very small- she is practically cured/cancer free. She is starting to see the oncologist for the first time with some treatment options to make sure all cancer cells are eliminated (which I just posted about in the Just Diagnosed board). I was extremely nervous, but let me tell you Rosie that breast cancer treatments have come such a long way and strides are made every day. I know it's scary and a hard pill to swallow as it was for my mom (age 56), my family, and I (her son). You will be fine and will say a little prayer for you for good heath and so you can feel at ease.

Alex