Biopsy Results and too many variables!!!

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HausFrauMi
HausFrauMi Member Posts: 124
edited January 2016 in Just Diagnosed

Hello,

I had my normal routine screening mammo in November. I have been having them since I was 18. I am now 42. I missed the past 2-3 years while we were living in Germany and to be honest didn't feel like navigating the language barriers and getting one done while we were there.

I was told they needed a repeat/follow up. Went right after Thanksgiving Break...required an ultrasound at the appointment. I saw the "suspicious" spot on the monitor. Met with the Nurse afterwards and even then they felt it was probably just a spot from getting older and shouldn't worry too much. Decided that I would wait for biopsy til January with the school holidays and my Deductible to start over. Monday Jan 11 I had the needle biopsy and clip placed in my right breast. I cannot feel the lump at all it is pretty deep and I have dense breasts. My primary doctor called at 9:30 Wednesday morning to tell me it came back positive for cancer but I thought she told me it was "just" DCIS so wasn't as worried. She immediately got me with a surgeon at Noon.

*at the surgeon's office the NP told me that it was not DCIS but Invasive Ductal Carcinoma. They sent me for Chest xray, lymph node ultra sound, and metabolic panel. The lymph node scan was clear but of course there is always the microscopic stuff that could have migrated....

My mom died from breast cancer in 1989 (she was 38) and had the lump for a while before she was diagnosed at age 35. Genetic counseling appt is on Tuesday. It will take 2-3 weeks for results. There is no other cancer in our family for the most part or very removed/much older (70+ age) relatives.

My cousin that is a Doctor says to have a double mastectomy and ovaries removed regardless of genetic testing outcome.

My children are 7&9. I feel like a lumpectomy and treatment (radiation/chemo) would be the easiest with them being so much younger. However, if it came back then I would go full steam ahead with my cousins recommendation.

2nd opinions? How do you determine which surgeon is better at lumpectomy vs mastectomy? I live in the Metro Detroit area. (Troy Beaumont hospital)

When my doctor called Wednesday morning I didn't know whether to laugh or cry so I kinda did both! I have been expecting this diagnosis to appear at some point since my mom died when I was 15 yrs old. I feel sorta dumbfounded. I'm not mad or angry. I know right before any surgery I choose is when I will get scared. I know what the recovery is like after major surgery. I have had RNY Gastric Bypass and a hysterectomy but he left my damn ovaries!!! He said I should go thru normal menopause because I was only 39. Removing the ovaries or taking tamoxifen etc..will give me the same results from my understanding.

Appreciate any resources for finding a great surgeon. The one I saw may be just fine but I am clueless. We only moved here in August and do not know many people.


Thanks for any help!

Shannon








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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Dear Shannon, We are so glad that you reached out here and so sorry that you are confronting this diagnosis that you have been expecting for so long. While you are waiting on some replies here are some suggestions. Take a look at this information on Where to Look for a Second Opinion and using the blue tool bar to your left you can use the search tab and enter keywords surgeons in detroit and you will see other discussions on this question. They may be a few months old but you can follow up with the poster via PM. WE hope this helps. Keep us posted. The Mods

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited January 2016

    My mother was diagnosed with breast cancer at 42, I was 41 when diagnosed. I also did the genetic testing and was told if the results come back positive, I would need a double mastectomy as well as possibly removing my ovaries further on down the road.
    Thankfully, my genetic testing came back negative!

    Once I knew my genetic testing was negative, I moved forward with a lumpectomy and I am about to now begin my radiation treatments. For those who test negative, a lumpectomy with radiation has the same survival rates as a mastectomy. I did NOT want to have to put my body through a mastectomy and reconstruction surgery, if I didn't need to.
    I don't regret doing the lumpectomy. My surgeon got clean margins and there was no cancer in the lymph nodes, so I was very pleased with the outcome. Recovery was also pretty easy. I was sore and tender for about a week, but not at the lumpectomy site, rather at the sentinel node site.

    And as far as removing the ovaries and taking Tamoxifen being about the same.....not really. Removing your ovaries is much more severe and has a much different effect on your body than just taking Tamoxifen.

    In any event, I do understand what you mean about expecting this diagnosis since your mom was diagnosed so young. I was the same way. And then when it happened, I was in complete shock. Crazy, huh? LOL!
    ((((Hugs)))) I wish you all the best! If you need a friend, I'm here for you.

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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited January 2016

    Thank you for the reply Etnasgrl! I could have been diagnosed at 41 had I not been trying to save $$!! My birthday is Dec 18th.

    I guess I was under the impression that the ovary/Meds just put you into menopause to rid estrogen from your system. I didn't really look into further details. I think I am peri-menopausal. Ask about my mood swings. Hormones have been outta whack all my life. Surprisingly had no issues getting pregnant both times in my 30's.

    Going to enjoy our last trip for the near future this weekend I think we are cancelling spring break. Kids are super excited to see tons of snow this weekend Up North in Michigan. Had planned to sip wine all weekend but now I read that its cancer feeding. I can't win!!! :




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  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2016

    Shannon, definitely get a second opinion from an expert in the field. Just because you have a cousin who is a Dr in your family, doesn't mean they are an expert in this very specialized field.

    Also, find out what *grade* your DCIS is and what *form*.....

    Get solid information before making any drastic decisions like Mx or hysterectomy. And yes, second, even 3rd opinions. You are not in a situation that you have to make a decision *RIGHT NOW*. You have time to research and weigh your options based on YOUR individual situation.

    For example, with DCIS, you will not get chemo. It simply not done for DCIS.

    You are just in the very early stages.

    Get copies of all reports. Mammo and any other tests. Pathology of biopsy etc. ALL COPIES of everything, and start a folder.

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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited January 2016

    Will the needle biopsy test results indicate additional pathology information beyond Invasive Ductal Carcinoma with DCIS? That is all I have learned besides the approx size ~1.3cm and location.


    And how fast do tumors grow??

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited January 2016

    Hi HausFrauMi!

    Ok, what you're saying in your most recent post ("Invasive Ductal Carcinoma with DCIS") is significantly different than "just DCIS." Generally speaking, unless it's a "micro invasion," they will plan the treatment in response to the IDC, instead of the DCIS.

    Is this from a new/updated pathology report? It's surprising that your doc would say "just DCIS"...and yes, the path report may include additional info. For example, the ER/PR status of the tumor. It sounds like you need to start collecting copies of things. Imaging reports, imaging on disc, test orders & test results, procedure orders and procedure reports. You'll be amazed as you see various docs how they will turn out to be missing something...

    Hang in there!

    LisaAlissa


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  • windingshores
    windingshores Member Posts: 704
    edited January 2016

    Do you have pathology results yourself,  from the biopsy? You can get them from your MD, from medical records, or, often online on a patient portal. I got all mine from a patient portal. Keep a file and when you get contradictory opinions keep a chart :)

    You need to know size, grade, maybe ki67 (proliferative rate, not always done), estrogen and progesterone sensitivity (very key), and HER 2 status. Surgery and biopsy may actually have different results: I was positive for HER 2 after biopsy but negative from the surgical specimens. ER/PR+ can mean chemo is less likely and that you can benefit from hormonal treatment such as Tamoxifen or, for those who are menopausal naturally or artificially, an aromatase inhibitor.

    I had a mastectomy while the genetic tests were still pending. The genetic tests didn't matter to me.  I later had the other breast taken off. Both times I had a paravertebral block which eliminated pain for awhile afterwards- no pain meds, no nausea, no being out of it. I didn't do reconstruction. These are major surgeries but I could not have radiation. Really, the whole experience wasn't that bad.

    Get as much pathology info yourself as you can. I got a book from the Mayo Clinic that explained things clearly and simply. Second or even more opinions are good. Good luck!


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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited January 2016

    well Crap!! I thought I had written that my Personal Dr told me DCIS but when I got to the surgeon it was NOT DCIS but Invasive Ductal Carcinoma with DCIS. That report was sent to my doctor and isn't showing up in my records for some reason. Will try to edit my original post if I can from my iPhone without too much difficulty!

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