Diagnoses/biopsy results

I hope this makes you feel better. I was Stage 3...3 years ago. Chemo isn't easy but the fatigue comes in cycles and the steroids can really keep you feeling good. I was able to go out to dinner, work from home, even go on a job interview and fake them out with my wig. There are great wigs and no one has to even know! You can ask for a petscan for peace of mind about spread but it really sounds like your scans are not indicating anything has spread "far beyond" Don't worry about radiation. Honestly it really wasn't anything to worry about. The worse that happens is skin sensitivity and there are unbelievable creams to help you heal. It will all be behind you at some point. Look at that date on the calendar and know you will get there. Also, it's helpful to have Ambien for sleep and Xanax to help you through (not to be taken at same time). Ask for them.

I fully agree with ChiSandy. when initially diagnosed following the biopsy, my PCP was trying to sell me his general surgeon buddy. I flatly refused and went to our local university medical center and went to a breast cancer surgeon. Best decision I ever made.

Also, don't forget, the final decision on the treatment is always yours. Be informed, research as much as you can, ask your sisters here on BC.org - we were all where you are at one point.

I personally went for chemo (because of 3 mm tumor in sentinel node) but refused radiation after the lymph node dissection, even if my breast surgeon (the Director of the local Breast Institute and former Director of John Hopkins Breast Institute) threw a tantrum - literally - when I refused, but I stuck to my guns, as I didn't see WHAT were they going to radiate if my lymph nodes weren't there anymore.

Let me share my diagnosis with you. Maybe it will help. I had upon biopsy very similar numbers as you. No MRI or scans before lumpectomy. Even though my underarm lymph node was swollen my team was optimistic and upbeat. My tumor was 2.1 cm and two of my Sentinel nodes were positive. One was 1.7 cm and the second one micrometastis. I had extensive lvi and DCIS leaving my surgeon unable to get clean margins. She let me know at my post op appointment that I need a mastectomy. They were both certain that I would need chemo. Well the early results of TailorRx came out just as my oncotype Dx score came in at 13. My MO said that chemo would offer no benefit vs risk. I got a second opinion before making my decision and he also said even with positive nodes and lvi chemo benefits were too low to justify risk. I did have radiation after mastectomy. My axilla, chest wall, inframmary, supra clavicle nodes and breast. I like and trust my team who are affiliates of a major cancer research hospital.

My point is get a second opinion. Insist on oncotype Dx test. Your insurance should pay for it. It's completely appropriate for 1-3 positive nodes. You can postpone surgery to get a second opinion. You need to take control of your care. Take a trusted family member or friend with you to all appointments.

Just ask them for a PET or bone scan and if they refuse or comment, tell them that "spread beyond lymph nodes" would mean metastases, and you want to be checked for that. See how they react to that and if they backpedal.

As for "experience" yes, i do believe that sometimes they would have good hunches, but not always. My "Great Poobah" was certain I had just DCIS and there would be no nodes invastion and he was proven wrong.

My personal opinion though, ask for a full pathology report copy. There should be a better description there, what exactly is in the lymph node, if just cells or micrometastasis or macroinvasion.. Did you check if you had LVI (lymphovascular invasion)?

I honestly think that the chemo is pretty much the standard choice they take (if you don't ask for more tests) in case there's node invasion, no matter the size of the tumor, grade or ER/PR/Her2 status

I agree with seachain, ask for PET scan and exactly how can he assure you of clean margins?

They cannot know if it's spread if a scan doesn't show it. Simple logic.

Honestly I'd love to be with you at your next visit and make them squirm a little. Looks like they are doing some fear mongering in order to sell something. But that's just my opinion.

You definitely should do that. Also, inquire which level of lymph nodes he proposes to take out. I had only accepted the level II ones, not all, even if I had a macrometastasis (3 mm) in the sentinel node, exactly for fear of lymphedema. Then, as I said, refused radiation as there were no nodes to radiate in that area.

I just want to add that I had a full multi level axillary dissection and they found cancer in more nodes than originally thought or showed on a PET or MRI. This is not to scare you but rather to report that aggressive action on the nodes is not a bad thing necessarily. And I never regret it. Lymphedema can be managed. Now I think what your surgeon meant is that he thinks they would find cancer cells in more nodes than they know of now and he wants to be aggressive in how many nodes he takes out. And just so you know going in... it's manageable. Nodes shmodes.

Am I missing something here? "Fragments of tumor cells" does not mean you are node positive. On my report I had "isolated tumor cells" but I was still node negative. My doctor treated it like it was nothing, that they could even be dead cells and the node was just doing its job filtering them out. From what I've read, any adjuvant treatment is enough - radiation, chemo, Hormone Therapy. If you are node positive you will have a size listed.

Since your surgery is so soon maybe you can just have the surgery and ask your BS to be very conservative with your lymph nodes - just doing the sentinels. You can go back for a second surgery if the pathology report, and your second opinions agree that your nodes are involved.

We understand how scared you are and how much you have to learn. We've all been there. Really, this is the worst part. Once surgery is over you'll know exactly what you are facing and will have a plan of attack. Be sure your doctors understand how much you want to be involved with your own care.

Chemo won't start until you are well healed, often 4 weeks after surgery so you have lots of time to get second opinions and the Oncotype test. Print out the info from Genomic health about node positive tests and show it to your MO. He won't be able to argue with it in black and white.

If this were me I would be fighting to be sure they took only the smallest number of nodes necessary and that they don't start chemo until you have the Oncotype. Since surgery is Monday I'm guessing you have already signed a consent form, so you might need to discuss this again the day of your surgery, just to be sure you're both on the same page. There is a test they do during surgery to see if a node is positive. Be sure your dr is doing this. It's not as accurate as the final pathology but it's a very good indicator.

Your surgeon might be excellent in the operating room but just really lousy talking to patients and caused you all this fear for nothing. Think positive thoughts, do some guided imagery, and go into surgery knowing you are going to kick this darned cancer's butt

Hi:

The Oncotype test is usually run on surgical samples, as explained here:

Timing: http://breast-cancer.oncotypedx.com/en-US/Patient-...

Surgical samples are more likely to be available in sufficient quantity and quality for conducting the test. With respect to quality, samples submitted must be suitably prepared and should be sufficiently "representative". For example, the submission form states: "List the most representative specimen (i.e. the highest grade and largest tumor) on line one." The selection of "representative" tissues is best made with full surgical pathology available.

Since nodal status is another element of "eligibility" or suitability for the test, axillary staging should typically be completed when eligibility is determined. This is another reason why eligibility is usually determined post-surgery.

ER, PR, and HER2 status may be determined again on surgical samples, and this information (hormone receptor-positive, HER2-negative), together with your nodal status will determine your "formal eligibility" for the test. Here is a link to the professional page with current "formal eligibility":

Formal eligibility: http://breast-cancer.oncotypedx.com/en-US/Professi...

"Formal eligibility" for the Oncotype test is one thing. Whether various clinical consensus guidelines support the use of the test in various situations is a completely different matter. NCCN guidelines treat the use of the test in node-positive patients quite differently than in node-negative patients. The recent February 2016 ASCO guidelines take a particularly cautious approach with regard to node-positive disease. (Based on the availability of some data from prospective trials, consideration of the Recurrence Score in N1mi disease may be viewed somewhat differently from its use in other eligible node-positive patients, particularly with very low scores.)

Again, there are considerations other than formal eligibility, such as the quality and scope of validation of the test in patients like you (same nodal status, etc.) Patients interested in the test should always seek accurate, current, case-specific expert professional advice from their medical oncologist. If the test is used, a second opinion may be very helpful.

BarredOwl