Staging Process- how did this path go for you?

Pepper, after mammogram, call back for dx. mammogram and US, it was biopsy of both tumor and node. Then meeting w/first surgeon, who referred me for CT scan, bone scan and MRI, as well as meeting with prospective RO. From call back to 2nd meeting with surgeon it took maybe a total of 2.5 to 3 weeks. Some of that was due to a long holiday weekend that delayed biopsy and backed up the lab. None of that changed my stage.

As for the question of likelihood of metastasis - that's the $64 million dollar question, isn't it? If you read the signatures on this board you'll find lots of stage I women with anything from grade 1-3 who recurred, sometimes w/metastasis. Others who seem to have much less concerning pathology never experience recurrence. All of us make the decisions that work for us as the time, seek out the best advice we can find, do our research and then cross our fingers that cancer never actively revisits us. That's the tough part.

Good luck with the process and your treatment.

Biopsy was showing 2 cm. MRI showed 4 cm. Then at sx a total of 7 cm. 4 cm plus a little line with a 3 cm mass hidden where MRI couldn't catch it. So went from stage IIa to IIIa.I just had micromets in 1 node so it was the tumour size that sent me up a stage.

I had prepared myself because at biopsy the doc who had been doing this for 35 years said he never saw such strange shapes before. I saw it and it looked like something splattered against the wall. I just thought to myself anything but stage IV. So even though I went up a stage I was still happy esp since Her2 was - which is huge and grade 3 is the most receptive to chemo. The surg told my bro after my sx that I had the best possible outcome, meaning it's not just the size of the tumour but other factors were pointing to getting this thing NED.

pepper - have you had the suspicious node biopsied, or has it only been imaged at this point? It is important to note that biopsies and imaging provide what is termed "clinical staging" but most treatment decisions come from "pathological staging" which provides more clear answers. If you are desiring a lumpectomy/rads you may have the option of doing neoadjuvent treatment with either anti-hormonals or chemo, but if I were in your shoes I would want a fine needle aspiration biopsy on the suspicious node, if you have not already done so, before starting so the true status is known in advance. It is possible that there is another reason for the suspicious appearance.

Edited to add - regular annual mammogram on 9/9/10 did not reveal a nearly 3cm, very palpable, mass so I was immediately given an ultrasound. It revealed the mass, as well as numerous cysts, which I had bi-laterally all the time. The radiologist came into the room, moved the transducer around a bit, then called another radiologist into the room and they looked at both the mammo and US images. I dressed and went into the radiologist's office and he explained that what he was seeing was not a cyst, but that he didn't know what it was and that it should be biopsied. I was referred to a breast surgeon, but he arranged for the biopsy to be done by his radiologist on 9/22/10. She indicated that she was not certain that what she saw, both on the US and the samples, was cancer and that if she thought it was she would tell me so on the spot. Biopsy results were given on 9/27/10, IDC and DCIS. I had a MRI that showed only the known tumor about two weeks later. My surgeon recommended lumpectomy and SNB. Because I am adopted I needed BRCA testing done before final surgical recommendations could be made. In the meantime I decided on bi-lateral mastectomies because mammography had failed to show the tumor and I have had numerous cysts bi-lat for 20 years so self-exam is useless. My surgeon was fine with this plan, BRCA was negative, so we went to surgery on 11/1/10. I had bi-lat SNB done since all of the breast tissue was being removed, but not all surgeons do this on the prophy breast. My cancer side SNB was initially declared clear in the OR, so no further nodes were removed. Later, in the lab, 20 isolated tumor cells (IST) were found in the single node removed from the cancer side. Because I was Her2+ both my surgeon and my oncologist were immovable and insisted that I have ALND surgery, even though 20 IST is "clinically node negative" according to most docs. I had ALND surgery 5 weeks later which revealed a positive node further up in the axilla, and was the size of a stage 1 breast lump. This is highly unusual. Imaging - including MRI - never showed it, and it was not palpable despite the size. Surgical pathology on the prophy breast also showed areas of both ADH and ALH, so bi-lat mastectomy was the right choice for me. The tumor size was very consistent across differing imaging modalities so I was clinically staged at IIA, with the assumption of negative nodes. The addition of 2 positive nodes meant that I was IIB after surgery.

pepper - I am glad you have confirmation on the node, particularly if you do neoadjuvent chemo which can muddy the true staging waters. I did make myself a organizer with a scrapbooking type binder - because they are large and hold a lot. I used a label maker and neon tabs to make categories - surgeries and their reports, insurance referrals, labs, chemo, imaging reports, etc. I also participated in several clinical trials so I have tabs for all of those. There are several commercially available ones, here are some links:

http://cancer101.org/toolkit/order-planner/

https://cancerplanners.com/

http://www.cancer.org/myacs/california/programsandservices/personal-health-manager-kit

https://www.livestrong.org/what-we-do/program/livestrong-guidebook