Just diagnosed

sandela1

I am weighing the options to treatment for estrogen/progesterone positive cancer in the milk ducts with lobular features. I have either 3 lumps or one large and at this point they don't know which. I am wondering if just getting a mastectomy is the best for me. I would like to save my breast however I believe with the size of the problem even with chemo and aromatase therapy to reduce the size it would still involve loosing half my breast.

Does anyone have some insight for me? I would appreciate your input.

Thank you,

Alice

Beesie

Alice, welcome!

Before I can offer any insight, it would help to better understand your diagnosis. "In the milk ducts" usually refers to DCIS, which is a non-invasive condition, Stage 0 breast cancer but considered by some to be a pre-cancer. DCIS doesn't usually form into lumps - more often it's seen on imaging as tiny calcifications spread out within the milk ducts. And chemo is never given for DCIS. But DCIS is often found together with IDC, invasive ductal carcinoma, which is breast cancer that is found outside of the milk ducts, in the open breast tissue. So it is possible that your diagnosis includes both DCIS and IDC? This is really important to because when DCIS and IDC are found together, the treatment plan is based on the IDC and it can be very different than the treatment plan for pure Stage 0 DCIS.

Have you had an MRI? Sometimes MRIs can be helpful in assessing the size of the tumor, and whether a lumpectomy is feasible or whether a MX would be advisable. Have you spoken to a surgeon or do you have an appointment scheduled? Usually if a MX is the medically preferred option, the surgeon will be upfront and say so.

sandela1

Thank you Beesie!

As far as I understand it I have IDC and have had an MRI, however I am speaking to the surgeon tomorrow. I spoke with her a few weeks ago before the MRI so I am hoping to find out if she can tell whether the lumps are individual or a large one connected. I feel like I can't make the best decision without knowing how much breast the surgeon would take and she said at the first meeting that she probably wouldn't know until she was in surgery. Surely the MRI will give her some better information. It seems that chemo and a lumpectomy and then radiation are a lot to go through to save some breast tissue, especially if they will take half of the breast (possibly). Is there a school of thought that says doing the chemo will help keep the cancer from returning, not just to shrink the tumor?

Thank you,

Alice

Beesie

Quick reply and I'll explain more later, but to your question, chemo is a systemic treatment and is given specifically to reduce the risk of a metastatic recurrence. That's a recurrence that happens if some breast cancer cells have entered the body and take hold in the bones or a vital organ. This is the most critical reason for prescribing chemo. If the risk of a metastatic recurrence is sufficiently high to warrant chemo, then chemo will also provide a benefit in terms of reducing the size of the tumor in the breast (if chemo is given prior to surgery) and reducing the risk of a localized (in the breast) recurrence. But to my knowledge, chemo will not be given just to address the cancer in the breast - it's main purpose is to reduce the risk of a metastatic recurrence.

Dinner awaits. More later.

sandela1

Thank you so much for your reply! I had a bone scan and everything was clear so there is no evidence of metastatic cancer. Thank goodness! So, would chemo be prescribed just as a measure to reduce the size of the lumps if metastatic cancer is not a concern at this point? I met with the oncologist and she gave the three paths of possible treatment and I can only remember lumpectomy or mastectomy. The cancer is just in one breast, however the size is the question that I would sure like to know before I make a decision on treatment. I am waiting now for the oncotype to come back to see if chemo would be effective on the cancer.

Again, thank you for your help!

Alice

Racheldog

I had a very small , localized Her2+ tumor and had a lumpectomy. i am still second guessing myself about whether or not I should have had a mastectomy even though several providers thought that would have been the wrong decision with such a small tumor. I have started chemo and then radiation is to come but having a mastectomy would have eliminated the need for radiation, which I am not looking forward to either.

I have since had a small seroma drained on the lumpectomy breast and have had some post surgical changes where that breast has some hardness.-- 4 months out. I still have time to think about a mastectomy I guess. Any thoughts from the group? Seems like breast reconstruction would be way more difficult after radiation?

ctmbsikia

Hi. Sorry you’re here. Before Bessie comes back just want to throw this out there. Since you mention idc 3 lumps and lobular features you may end up with a mixed diagnosis which it what I had. I would base my decision on size if you can share that info. I believe 5cm area is around the cut off for breast conserving surgery . Also, the size of your breasts. If small the cosmetic outcome may disappoint. Larger breast more cancer free tissue can be moved around for a bit better look.

Just to share my experience MRI was measuring around 3cm and I ended up at 4. Thankfully clean margins. 11:00 position and after radiation it’s smaller and I have a divet thanks to scar tissue. I also had a post op seroma which is fluid filling in where the tumor was. Compression helped but still feels hard near there. Depending on grade, which if mixed is usually a 1 or 2 chemo may not be that beneficial prior to surgery unless you are very young. I was confused at my pathology as I knew I had a distinct tumor, it also mentioned dcis as well as the lobular features. I can only summarize dcis became invasive but the actual area of my dcis was inside my tumor and not through out a larger area of the breast. Some have large areas of dcis. That’s what I would like to know before deciding, which is very personal decision. Best wishes to you.

beach2beach

I would speak to a PS to figure out options. I was small boobed to begin with. My cancer was 7mm, but at the time we believed it was IDC. I opted from the get go to get a mastectomy, I made it a double. Any chunk taken out of my boob would have left it half suken in and I was not a candidate for DIEP. At the time I did not have the body fat and my skin was too tight. I opted for direct to implants.

I wound up finding after surgery with pathology I had ILC with dcis and lcis all within the the same tumour.

Weigh your options, speak to your surgeon as well as plastic surgeon and feel in your gut that your choice is right for you.

Beesie

"So, would chemo be prescribed just as a measure to reduce the size of the lumps if metastatic cancer is not a concern at this point?"

No. Chemo is a systemic treatment with a significant risk of side effects. To my understanding, it will not be prescribed for localized (breast) treatment only. It is only prescribed as a means to reduce the risk of mets. The localized benefits (shrinking the tumor, reducing the risk of an in-breast recurrence) are a bonus.

Here's the thing with metastatic cancer. By the time it is large enough to find on any imaging scan (bone scan, MRI, CT scan, PET scan), it is a Stage IV metastatic cancer. At that point, chemo is no longer given to reduce the risk of mets, because the scan shows that mets have already developed. For Stage IV patients, chemo is given as a treatment to extend life. With early stage patients, chemo is given to stop a metastatic cancer from ever developing. This means that chemo is given to patients who show no evidence of mets, but who nevertheless face a not insignificant risk of mets. Most cancers have been in the breast for 3-5 years, or maybe even longer, before they become large enough to be found. During that time, a few cells might break away from the main tumor and move into the body, either through the bloodstream or through the lymphatic system. If it's just a few cells, they will be completely undetectable, and they might sit somewhere in the body for years before they start to grow and develop into a metastatic recurrence. The role of chemo is to track down these rogue cells and kill them off. This is why chemo is regularly given to patients who have clear scans, and this is how chemo saves lives, by stopping a metastatic recurrence before it can happen.

Not all early stage patients get chemo. It is only recommended if the risk of mets is assessed to be high enough to warrant the treatment. Certain breast cancers are considered more aggressive and early stage patients are usually prescribed chemo. This includes cancers where the tumor is very large, or where there are several positive lymph nodes, or cancers that are HER2+ or hormone negative (ER-, PR-). For patients with ER+/PR+/HER2- cancers, chemo is less commonly given. For these cancers, there are tests (Oncotype, Mammaprint) that assess the aggressiveness of the cancer cells based on their genetic make-up; a recommendation for or against chemo is given based on these test results.

A long explanation to say that chemo won't be given just to shrink a tumor. If a tumor is large enough that it would benefit from shrinking prior to surgery, then it is large enough that chemo will be recommended to reduce the risk of mets. And it's not a choice between having chemo + a lumpectomy vs. having a MX and not needing chemo. If an oncologist decides that a patient will benefit from chemo, then chemo will be recommended whether the patient has a lumpectomy or a mastectomy. Chemo is given to address the risk of metastatic cancer beyond the breast, so it makes no difference if the patient has a lumpectomy or a mastectomy.

What this comes down to is that there is more that you need to know about the biology of the cancer itself before any surgery and treatment decisions can be made. Most important is ER and PR status, and HER2 status. This information should be available from the biopsy pathology report. If your tumor is either HER2+ or triple negative (ER-/PR-/HER2-), then not only is it likely that will chemo be recommended regardless of your surgery choice, but chemo may be recommended prior to surgery if the tumor is 2cm in size or larger, again, regardless of your surgery choice. But if your cancer is ER+/PR+/HER2-, then surgery would normally come first but if chemo will be recommended to reduce the risk of mets (which might be the case with a large tumor but not necessarily), then you could opt to have chemo first to help shrink the tumor.

If you don't have copies of all your imaging reports, ask for them tomorrow when you see the surgeon. And also get a copy of your biopsy pathology report as soon as it is available.

I hope this isn't too confusing... there is a lot to this!

CLDCLS

I’m new to all of this too. Recently diagnosed with IDC (5mm), ER/PR+, HER2-. MRI shows minimal enhancement by biopsy site, but nothing else of concern and no (presumed) nodal involvement.

My initial reaction when I learned I had BC is that I want a double mastectomy. The first BS I met with said I was likely a candidate for either lumpectomy + radiation or mastectomy, but she recommended double mastectomy since I’m 43. In her words, “you have a lot of time for something else to happen.” I agree.... but I’m scared. Met with her recommended PS today who said I could either do direct to implant (in front of muscle) or DIEP flap. He suggested DIEP as a better option- he is known for that surgery. I’m worried about recovery and complications. It’s seems like such a big and drastic surgery for a 5mm breast cancer. Also have an appointment tomorrow with another BS for 2nd opinion.

I appreciate reading everyone’s experiences. Would love some advice and/or shared experiences about DIEP flap or direct to implant. Maybe some words to calm my nerves a bit 😊.

Many thanks!!

Beesie

CLDCLS, welcome. For both you and Sandela, this thread I wrote a while back might be helpful in your decision-making process:

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

sandela1

Thank you all for the wealth of information! Beesie, my cancer is ER/PR+ and so what I hear you saying is that chemo would be given despite my choice of a MX or lumpectomy and if given before surgery it could shrink some of the tumors, however it's main use is to prevent the cancer from spreading, especially if a few cells have already moved into another part of my body. That makes sense to me now.

I am waiting on the Oncotype to return (2 to 3 weeks) and that will tell me if my tumors will respond to chemo. I was told my tumor looked to be in the midrange.

kathabus

Correct, chemo is not given based on your surgery. It is a systemic treatment to prevent mets. If it is neoadjuvant chemo it is chemo that is given to you before surgery to shrink the tumor(s). If it is adjuvant chemo, it is chemo that is given to you after surgery. Both are systemic treatments used to prevent metastasis.

The oncotype test gives you your own personal risk of developing mets. Is your cancer aggressive? Is it not? Somewhere in the middle? Your score is essentially your risk of developing mets....and if that score is high, you want to consider chemo obviously. Hope that helps!

sandela1

Kathabus - that is helpful! Thank you!

Beesie

Alice, I don't have anything to add to what kathabus said, other than to give you some reading about the Oncotype test, so that you are prepared with questions when you get your results:

https://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/about-the-test

sandela1

Thank you Beesie! I have read the detailed list of treatments and possibilities regarding different treatments and that has been so very helpful! Thank you for sharing your extensive knowledge!