Looking for opinions and info

SpaceCowboy911

I was recently diagnosed with BC on May 27 2016. I had my lumpectomy and have pathology report. Tumor size is 1.2cm. ER and PR positive, both at 100%, and HER2 negative. As for the rest of the other information, I fall in a very grey area, so I'm looking to be armed with opinions and info/experience before I go in to see my chemotherapist and radiologist for the first time to discuss all my treatment options.

I had 2 nodes removed for biopsy and the sentinel came back positive with LVI (I understand this is a given since it went to lymph node), but the largest size was 0.21mm which puts it on the cusp of actually only being ITC (which is no bigger than 0.2mm), and the other node came back negative. I was told I was grade 2 with tubular formation being 3/3, nuclear pleomorphism 3/3 and mitotic rate of 1/3. Based on my research, the mitotic rate is the most important factor of the three, and I actually found a study/article that stated that even though my grade at 7 is on the border of being grade 3, with the mitotic rate being 1, my grade can also be interpreted as grade 1, which is weird since it's actually on the border of being the higher grade.

According to my surgeon, there was no extra nodal extension and she removed all 'the cancer' with excellent margins, and based on this, I have no BC in me, which to me just means that she was able to remove everything and I understand this has no baring on recurrence or 'new' cancers. I was also gene tested, which came back negative. As for oncodx testing, although I am familiar with this test and what it does/means, no one has mentioned this test to me as of yet.

My surgeon stated that I am stage II because of lymph node, but a lot of web sites state that if it is only ITC or micro metastases in 1-3 nodes, my stage is considered 1. Honestly, I think I want to be treated as a higher stage and grade, but for peace of mind I like thinking it is stage 1, grade 1. Any thoughts based on your own diagnosis'?

Anyone else find themselves in this 'grey' area, and did you chose chemo? I am definitely doing radiation and hormone therapy (although no one has discussed when I start yet), and am not afraid of chemo, although I don't look forward to side effects. I want to have the highest survival rate I can get and the lowest recurrence rate I can get. People buy lottery tickets with less than a 2% chance of winning, so I don't see why I wouldn't do chemo even if it only marginally raises/lowers my corresponding percentages. Any advice?

SpaceCowboy

Moderators

Hi SpaceCowboy-

We wanted to welcome you the community here at BCO! The "gray" area can be confusing; we suggest heading over to our Chemotherapy forum and reading through some of the posts there. There's a lot of info from members about their treatment, and how/why they decided to go through chemo based on their diagnosis.

Hope this is helpful!

The Mods

cive

If your node was positive, do chemo! It is a systematic treatment that in conjunction with radiation should eradicate any cells that may have escaped your lymph system.

BarredOwl

Hi SpaceCowboy911:

I think you should discuss all these questions and issues with your team. In addition, if you have not already done so, please obtain copies of the pathology reports from any biopsies and surgeries, as the combined findings inform the decisions you will be making.

The surgical pathology report often contains information regarding "pathological stage", which is based on tumor size ("T"), nodal status "(N"), and evidence of distant metastasis ("M"). For example, under the "TNM" staging system of the AJCC, the extent of lymph node involvement will be indicated by an "N" designation. If "pN1mi", then that would indicate "Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)".

Here is a summary about staging (there is a full-length manual), but it is best to obtain expert advice about actual stage from your team and pathology report, to ensure all applicable factors are considered:

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

You mentioned "the sentinel came back positive with LVI (I understand this is a given since it went to lymph node)." Please note that "LVI" is an abbreviation for "lymphovascular invasion" and it is not the same thing as an involved sentinel node. For example, a person may have tumor cells in a sentinel node, but be negative for "LVI" (e.g., LVI not identified).

Here is some basic information about lymphovascular invasion:

http://www.breastcancer.org/symptoms/diagnosis/vasc_lymph_inv

Basically, the circulatory system includes two types of channels or vessels for fluids: (1) the "vascular" system for blood; and (2) the "lymphatic" system for lymph fluid. The breast itself has small blood vessels and lymph vessels going through it. Either system may be used by invasive tumor cells to escape the breast, if they have the capability to do so. The pathologist looks at the lymph vessels and the blood vessels in the breast in the vicinity of the tumor for signs of lymphatic invasion (breaking into a lymph vessel) or vascular invasion (breaking into a blood vessel), and will note it if present. If they don't see signs of either of these in the sample, they may note "lymphovascular invasion" ("LVI") is not identified. Check your pathology reports for a specific reference to LVI.

BarredOwl

muska

Hi Spacecowboy, if I understand correctly you had two sentinel nodes biopsied but no axillary nodes biopsied. I think you should discuss with your MO and get a second opinion too.

During my mastectomy, they tested two sentinel nodes first. One was negative, the other one was positive. Then they tested axillary nodes of which over 70% were positive with macro metastasis, so chemo was a given.

edwards750

Space - I had a micromet in my SN and my BS said that will get you chemo. It didn't. My ONC ordered the Oncotype test and my score came back at 11. Non-aggressive tumor. Stage 1b, Grade 1 IDC. I had a lumpectomy and 34 radiation treatments. Taking Tamoxifen and 5 years is up next month.

Diane

BarredOwl

Hi muska:

I note you had a mastectomy and SpaceCowboy911 had a lumpectomy. The indications for further axillary surgery (removal of additional Level I/II nodes) upon the finding of a positive sentinel node may not necessarily be the same depending on various factors. For example, in patients who are appropriate candidates for sentinel node biopsy, the NCCN guidelines for breast cancer (Version 2.2016) do not recommend further axillary surgery if ALL of the following criteria are met:

T1 or T2 size tumor 1 or 2 positive sentinel lymph nodesBreast-conserving therapy ("lumpectomy") Whole-breast Radiation Therapy (at least) to be received; AND No preoperative ("neo-adjuvant") chemotherapy

I am a layperson, so patients should be certain to inquire about such questions and confirm all information above with their treatment team.

Best,

BarredOwl

muska

Hi BarredOwl, you are right and I did not mean to say that SpaceCowboy should have had axillary nodes dissection. I only meant to say that with some cancer in the nodes and without knowing how far that cancer "traveled" if anywhere, chemo might warrant consideration. Again, I am not a medical professional and cannot definitely say one way or the other but I would get at least two opinions about chemo in this situation.

BarredOwl

Thanks for the clarification muska.

If a second opinion is sought (currently at Sunnybrook in Toronto), I would recommend lining up any second opinion right now, so as to reduce potential delay in starting chemotherapy, if offered/recommended.

I also note that the assignment of nodal status based on the pathology findings (and therefore staging) is within the area of expertise of the pathologist. The AJCC criteria for nodal status are quite specific. However, if a second opinion is sought, it could include an expert pathology review, as well, if one was concerned that a different pathologist might view the slides and come to a different conclusion about nodal status, with impact on understanding of risk profile.

Cancer Care Ontario issues various treatment guidelines which may provide helpful background reading.

BarredOwl

jojo9999

Why no Oncotype test? it is frequently used, even in the presence of 1-3 positive nodes. A positive node does not necessarily indicate chemo, onco type RS helps with this decision.

LM525

Has anyone encountered this-- I had Lt MX SNB the sentinel node was negative my oncologist ordered an oncotype test now he's ordered a bone scan and a CT of the lungs abdomen and pelvis I'm 3 weeks out of surgery is it safe to have these tests as I read they're equal to 100-200 X-rays my staging was T2 N0 M non applicable I don't get it they say margins are clear they took the whole breast should I do the scan

ThinkingPositive

I had a positive sentinel node. No Oncotpye as MO said it would probably come back high. But no additional scans at all.

labelle

I had one node positive, oncotype 11. No chemo was recommended. No scans were done other than a breast MRI prior to surgery. Generally speaking, they seem to try to avoid lots of scans for Stage 1 breast cancer that is is ER+/PR+/HER-. My SIL had triple negative BC and even though there were no nodes involved, they scanned her like crazy-probably because TN tends to be more aggressive and I think the same might be true of HER+.

Not sure why a scan might be recommended for you LM525. CT scans do involve radiation exposure, but sometimes people want them done for reassurance. Sometimes I wish I'd had some. And some doctors seem to like to order them, others simply will not without symptoms.

LM525

Thanks labelle for your information I guess since all of this I'm freaked out I don't want something else to crop up. I think I have to take arimedex and not looking forward to it. Waiting for my oncotype test to come back I see oncologist the 17th

labelle

Scanning or not scanning really does seem to depend upon the doctor's preference and attitude about doing this rather than because he/she thinks something will be found at this stage of the game. In terms of a treatment plan, I think you'll find the oncotype score to be very helpful in deciding whether or not to take chemo. Taking an anti-hormonal (an AI or tamoxifen) is pretty much a given with ER+ BC. Not something anyone feels good about, but lots of women take one or the other without a lot of problems.

Hopeful82014

LM, please remember that you always have the right to discuss proposed imaging (scans) before agreeing to it. It can be helpful to understand both your MO's way of thinking and what information s/he is looking for. I will say that this seems to be a lot of imaging given your nodal status, clean margins, etc.