Just diagnosed. Not surprised, tbh.

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swg
swg Member Posts: 461
edited September 2017 in Just Diagnosed

Just like I said in my posts about my biopsy, I was expecting my news to not be good. I just had a feeling. Esp with how fatigued I've felt in the last 6 months or so..

So, the good news is I'm Stage 1. It's a 1.2 cm mass. IDC. Stage 2. I'm still trying to figure out what all that means.

She didn't feel any lumps in my lymph nodes.. I guess the hope is that means it may not have spread there.

The surgeon wants me to get a lumpectomy in about a month. Followed by radiation. I guess chemo is a MAYBE, just because they need to run more tests on my tumor and see if it's fed by estrogen or progesterin or whatever.

I'm wondering, is there any point to getting a 2nd opinion?

I'm in Philadelphia. I've seen posts here about various drs. in the area..I've been going to Chestnut Hill Women's Center.

Can people give me their opinions of it? Is it a good place? I am very interested in the dr that also looks at the holistic component of disease. I take relatively good care of myself--I don't eat fast food, drink sodas, etc, but I could stand to get more exercise.

Anyway, dr recommendations are welcome, before I go all in with Chestnut Hill.

thanks!!

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited September 2017

    What Scans are being ordered? Bone, MRI, CT (with or without Contrast), PET to see what might be going on throughout your body.

    Have you got your appts made with your Team? The Chemo Dr (MO), Rads Dr (RO) and the Tumor Board at your Facility as the optimal TX plan is a compilation of the entire Team. Also has your info been presented to the Tumor Board at your Facility for review? What is your ER/PR status and HER2/status? Age? Family HX? Existing health issues (if any)? All of these come into play as to what is (or isn't) the best TX plan. Surgery is not always the 'best, first' option.

    Simply 'feeling' node area can not be an absolute as to rather or not there is cancer in them. Scans can show though.

    Remember - your Drs are a Team that should work together/coordinate what they are doing with your best interests in mind. Surgeons expertise is surgery/'cutting', Medical Oncologist ('Chemo Drs) expertise is 'chemo' and Radiological Oncogist (Rads Drs) expertise is radiation. Yes, they all do have some knowledge about the other 2 but they are experts in their individual field of study.

    I know nothing about your Facility or your area so can't say anything. I'm in western So Dak near He Sapa (Lakota for the Black Hills)

  • swg
    swg Member Posts: 461
    edited September 2017

    This is why I'm glad I found this forum..nothing..no scans have been ordered. I'm supposed to get the tumor info (ER/PR and all that) back in a week.


    Nothing was mentioned about doing an MRI, CT or any of that..just scheduling me for a lumpectomy and I'll have a pre-surgery appt with the other drs, beforehand.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2017

    It is EXTREMELY rare for scans to be ordered this early in the absence of suspicion of mets. They are expensive, increase radiation exposure (especially CT), and (except for MRI in dense breasts where mammography is inconclusive) not used for screening. Unnecessary testing is a huge driver of healthcare costs and consequently, insurance premium increases. For fatigue, the first place they should be looking is your blood, which will be drawn anyway as part of your pre-op physical. Iron, B12, ferritin and glucose levels are indicators of why you’re fatigued—the first three if too low (anemia is a common cause of fatigue), the latter if either too low or too high. Blood count is also an indicator. They also do an EKG to see if your heart is healthy enough to be a good surgical risk.

    Your tumor, if it’s 1.2 cm, is GRADE 2, not Stage II. There are three Grades—1, 2, and 3. Grade uses Arabic numerals, and describes how different the tumor cells look from the surrounding tissue. Grade 2 is “moderately differentiated.” At this early in the process (results from core biopsy) it is a preliminary indicator of how aggressive or slow-growing your cancer is' the full official Grade (aka Nottingham Score) is calculated from three factors revealed by biopsy of the tumor after it’s been removed. Stage cannot be known until the actual size of the tumor and number of lymph nodes involved is determined—size by measuring the removed tumor, lymph node status by sentinel node biopsy done during surgery. Until the tumor is removed, 1.2 cm is the “best estimate.” The actual tumor might be larger—or, in just as many cases, smaller than the mammo, ultrasound, and core biopsy predicted.

    There should be enough tumor sample to test for the presence (and percentage) of estrogen (ER) and progesterone (PR) receptors, and usually the degree of HER2 expression. They’ve probably already done that and it should be in your path report—mine was, a day after the biopsy was done. Ask about those hormone receptors & HER2 status, and don’t accept “no” for an answer. Those will determine if your tumor is eligible for OncotypeDX testing (usually done post-op on part of the tumor, because nodal status—negative or up to three positive—is another criterion for eligibility; but sometimes enough tissue was taken during core biopsy to test). The score on that will help your medical oncologist (MO) make a recommendation for or against chemo.

    One month from diagnosis to surgery is about average (mine was two weeks, but because a surgical slot opened then and I pounced). Whether to do lumpectomy or mastectomy depends on your preference, the location of the tumor and its size relative to that of the breast itself. With invasive ductal (IDC), radiation is always given after healing from lumpectomy. It isn’t usually done after mastectomy unless there are indications the tumor was near the clavicle or chest wall or there were positive nodes. Radiation isn’t always the whole-breast full-length protocol either—your RO will discuss your options in the weeks after surgery (usually 4-6 weeks to fully heal).

    Everything you’re saying indicates that the treatment you’re getting is standard-of-care (current state of the art). If it makes you more confident, your surgeon should not be offended if you look elsewhere for a second opinion. But if you want a second opinion as to why they’re not ordering pre-op scans or tumor markers, it’s highly unlikely that the second opinion would differ from the one you already have. If you don’t like the surgeon and/or your care team, however, it’s perfectly valid to look elsewhere.

    Don’t start second-guessing how you got breast cancer. 85% of patients have no family history or genetic mutations, and even clean-living vegan marathoners can get it. If you’re of a certain ethnicity, you might want to meet with a genetic counselor to see if you should be tested for and find out if you have one of the mutations that put you at higher risk for cancer in the other breast. That’s a question to ask your MO before surgery, because the presence of one of those mutations might change your surgical plans.

  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    hi,

    Sorry your instincts came true but you are on the path now. I also can't help with your location but you could google breast surgeons names at the cemetery your at.

    I don't believe either that most do scans prior unless they suspect further involvement from initial biopsy.

    They won't know for sure node involvement until surgery.

    I went from diagnosis to mastectomy (my choice), within 2 weeks. My breast surgeon was chief at hospital so I'm sure that's why. I was stage 1 grade 1.

    Hopefully someone may have some input about your center. I would say if you feel comfortable with this surgeon then stay. If you question his or herattitude or how they treat you or talk to you, by all means get a second opinion. Or even if it just make you feel better to do so. You have time.

  • swg
    swg Member Posts: 461
    edited September 2017

    Wow..double masectomy? For a stage 1 cancer?

    And then reconstruction..

    Was this because you were concerned it might come back?

    Believe me, I've considered just having them both removed, and get reconstruction but that almost seems like killing a mouse with a tank.

  • swg
    swg Member Posts: 461
    edited September 2017

    Wow, thanks ChiSandy! That's a lot of good info.

    Everything you said, squares with what the surgeon said. I think she is very competent. She seems to be..she's very knowledgeable about research studies and all of that.

    I asked about other doctors mainly because, we have U Penn here, and I know they do cutting edge research, and there are drs. there who also look at you from a holistic view, and consult with you about diet, nutrition, etc.

    As for the report on my tumor--she said I'll get that in a week. She explained to me about hormone receptors and all of that. All I know is what you said---it's GRADE 2, and she called it stage 1 cancer.

  • dtad
    dtad Member Posts: 2,323
    edited September 2017

    swg...there are many reasons why someone would have a BMX for stage one BC. You just cannot generalize. There are many factors that go into the decision. I for one chose it mostly due to difficult screening. My ILC was missed by both 3D mammo and u/s. Only a preoperative MRI picked it up. I also had some abnormal benign cells in the other breast. DSo as you can see it very individualized. My best advice is to get to a major university teaching hospital and do a lot of research so you can make an informed decision. Good luck to all.

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited September 2017

    swg... I too decided on BMX with reconstruction for stage 0, as did two other friends of mine that were diagnosed. We all had reconstruction as well. It's a personal choice, just like those that have a BMX due to positive genetic testing.

    Best of luck to you.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2017

    Nice summary ChiSandy. You always do well with your explanations

    Yes, many reasons for choosing BMX. I am very small breasted, a lumpectomy would have been half my breast anyway. So reconstruction either way. I also had VERY cystic breasts which made things difficult. Worked out well in my case as I had cancer in my clean breast as well that was not picked up on mammogram, ultrasound, or MRI's. Everyone has their reasons and that reason may just be because " that's what I wanted."

  • swg
    swg Member Posts: 461
    edited September 2017

    As someone trying to weigh all my options--esp given what I do for a living (acting/modeling), I'm curious about the advantages and disadvantages of going ahead with a full double masectomy and reconstruction, and the motivations others had to do it.


  • marijen
    marijen Member Posts: 3,731
    edited September 2017

    So I'm not so sure grade is determined by size of tumor and I've never heard that before. It doesn't reference size for grade but abnormality. Also my surgery wasn't for 7 months after dx. First they gave me neoadjuvant hormone treatment, claiming that's what the Europeans were doing. I wish it had been two weeks or a month. I had mammo, then ultrasound, biopsy same day, then breast MRI, CT scan and Pet Scan all in the first four days

    Chisandy you said if the tumor is 1.2cm then it's grade 2.


    This is from www.cancer.gov

    What is tumor grade?

    Tumor grade is the description of a tumor based on how abnormal the tumor cells and the tumor tissue look under a microscope. It is an indicator of how quickly a tumor is likely to grow and spread. If the cells of the tumor and the organization of the tumor's tissue are close to those of normal cells and tissue, the tumor is called "well-differentiated ." These tumors tend to grow and spread at a slower rate than tumors that are "undifferentiated" or "poorly differentiated," which have abnormal-looking cells and may lack normal tissue structures. Based on these and other differences in microscopic appearance, doctors assign a numerical "grade" to most cancers. The factors used to determine tumor grade can vary between different types of cancer.

    Tumor grade is not the same as the stage of a cancer. Cancer stage refers to the size and/or extent (reach) of the original (primary) tumor and whether or not cancer cells have spread in the body. Cancer stage is based on factors such as the location of the primary tumor, tumor size, regional lymph node involvement (the spread of cancer to nearby lymph nodes), and the number of tumors present. More information about cancer staging is available on the Staging page.

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