Newly Diagnosed and Frustrated

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Meg5000
Meg5000 Member Posts: 5
edited January 2020 in Diagnosed and Waiting for Test Results

I had a biopsy of two masses in my left breast (2.5 cm and 1.5 cm). There is also suspected lymph node involvement. I was told it's invasive mammary carcinoma, but I don't know what type. I tried to get a copy of my report, but was told it was being held. I had a breast MRI this morning. I have a consultation with a surgeon on January 29.

I'm frustrated with the lack of information and the wait to see a surgeon. Do you always see a surgeon before an oncologist?


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  • WC3
    WC3 Member Posts: 1,540
    edited January 2020

    I originally was directed to a surgeon who referred me to an oncologist but I switched to a more comprehensive center where I saw them both on the same day.

    I've heard of women who didn't meet their oncologist until after surgery. I'm not a fan of that sequence of things.

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  • Meg5000
    Meg5000 Member Posts: 5
    edited January 2020

    That sounds better than what I'm doing. My referrals are going through a radiology center.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    I knew an oncologist who had treated a friend. I had him recommend a surgeon. Along with getting a recommendation from my GYN. Those were both doctors I trusted.

    Meg - the reports are yours. It doesn't make sense why you can't get a copy.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2020

    Hi

    it is alot of hurry up and wait... I saw the surgeon first to figure out what we were going to do-- then I picked an oncologist at another hosptial, so I did not meet her until after the surgery-but truth is, they cannot do much until they have a pathology report that really tells them what is going on-- I was more in a hurry to have the surgery----but there is alot of stopping and starting in this process-- you have to be your own best advocate...



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  • WC3
    WC3 Member Posts: 1,540
    edited January 2020

    For triple positive and triple negative breast cancer, though there is some controversy about it, some places like to do chemotherapy first to see if it's working.

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  • windingshores
    windingshores Member Posts: 704
    edited January 2020

    You should be able to get your pathology report. Do you have a patient portal? Or go to the medical records department.

    The results are relevant to what you do next. Some people do "neoadjuvant" therapy meaning before surgery. You need to know whether you are HER2+, or ER/PR+, grade and possibly other info like ki67%.

    I met the surgeon and oncologist on the same day. But didn't really deal with oncology until after mastectomy. It could be different for you though.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2020

    Hi Meg. I'm so sorry you are in this early, frustrating phase; everything does seem to move so slowly. If you want to be proactive before your January 29 appointment I would suggest:

    • Check out the surgeon you will be meeting with. Does he/she specialize in breast cancer? Published articles or led a clinical trial? Work as part of a breast cancer center?
    • Then I would research surgeons at other nearby hospitals and book a second opinion appointment now.
    • Also get copies of all of your reports and scans.
    • You might also want to order a book called "Navigating Breast Cancer" by a nurse named Lillie Shockney. It is really clear and valuable information.

    Best of luck and stay in touch with us. We're here to help, and as others have said a surgeon is often the first step.

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  • smc123
    smc123 Member Posts: 71
    edited January 2020

    Meg5000, My process moved pretty quickly and I was still fortunate enough to get a second opinion . I was diagnosed on Feb 1 and had my first round of chemo on Feb 23. I was triple negative and both MO’s advised chemo first...then surgery, and last radiation. My process with two different hospitals was first I met with surgeon then with MO recommended by surgeons. I ended going with the second opinion hospital that was able to schedule all of my additional tests quickly. The first hospital had me waiting 3 weeks for additional tests while the other was able to haveall of my tests completed within 3 days. Hang in there...it’s very overwhelming...I was blessed with a friend good with research and told me about the 2nd hospital. I probably would have stuck with just my gynecologist recommendation but my friend researched things for me and I got the second opinion. I was so grateful for her help. Good luck

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2020

    I'd be MUCH less concerned about a surgeon publishing articles or doing research. All those do is take time away from doing actual surgery or having patient contact. Researchers are researchers and surgeons are surgeons. They're not interchangeable, nor do they overlap.

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  • smc123
    smc123 Member Posts: 71
    edited January 2020

    I probably could have done a better job explaining myself...my friend did not research medical journals or published articles of surgeons. She spoke to other breast cancer survivors and looked into other treatment centers for me. It was so helpful to me and I will be forever grateful for her help. Because of her “research” I got a second opinion from a hospital/treatment center that was not on my original radar. The second opinion hospital was a better fit for me.

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  • godisone
    godisone Member Posts: 100
    edited January 2020

    Your anxiety and frustation is so understandable. I had a similar experience and i met my surgeon first. I was so terrified with the dsclosure that I couldn't even think of the requirement of a oncologist i just wanted to get rid of whatever was inside me.It was only a month after the surgery that i realised about the oncologist. I found it with the help of Google with reviews and everything and I am glad i found a good one( atleast, i think so. He is patient, smiles often and is a phone call away).

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  • April0315
    April0315 Member Posts: 223
    edited January 2020

    It certainly felt like things were taking forever to get moving. I also met with my surgeon when diagnosed before anyone else. She referred me to all other specialists.

    Hang in there. I also had a nurse navigator that I wish I had used more. Do you have access to that? They can really help get the ball rolling and make sure nothing gets missed.

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  • Meg5000
    Meg5000 Member Posts: 5
    edited January 2020

    Thanks for the responses! I was able to obtain additional information today. The pathology report showed that both lesions in my left breast are grade 2 invasive ductal carcinoma with positive ER. I also got my MRI results that showed an additional lesion in the left breast and also two lesions in the right breast that did not show on the mammogram. I'm really scared about the right breast and want a biopsy before I see the surgeon next week. The results indicate that the lesions could be DCIS and the doctor who spoke with me about the results said that was a good thing. I disagree. If this is really bilateral breast cancer, it's not good at all. The doctor told me to see the surgeon next week, although I think the right breast should be biopsied first. The MRI report suggests it.

    I'm looking into a cancer center, there is only one in the city that I live in.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited January 2020

    Meg, I think it's ok to meet with the surgeon now but I would still try to get the biopsy on your right side if you can before your appointment. I met with the surgeon first, then the oncologist. I then met with the RO and we had a tumor board meeting where they were all together to go over the plan. I too have bilateral cancer. I had neoadjuvent chemo and one lymph node was positive before chemo but it was free of malignancy at surgery. My left breast was supposed to be prophylactic :-(

    Do you have a nurse navigator or tumor board at your hospital?

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  • Meg5000
    Meg5000 Member Posts: 5
    edited January 2020

    I'm going to push for a referral for a biopsy. I want the full picture so I can discuss my options. I don't know if the cancer center has nurse navigator or tumor board. If it turns out to be bilateral, I'll get one opinion locally and a second at Mayo in Jacksonville. There is not a lot of information online about bilateral breast cancer, as I'm sure you know.

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  • Emelle
    Emelle Member Posts: 4
    edited January 2020

    I didn’t get to see my oncologist until after the surgery. He dropped past whilst I was still an inpatient. Chemo couldn’t commence until the wound had healed as the chemical cocktail can affect the healing. When you see your surgeon he should be able to provide you with a copy of your results, or at least write down the stage and type of cancer down. This is so important as it affects the types of drugs you are given during treatment.

    Sometimes, when the tumour is large, you might have to do chemo first to shrink the tumour before surgery. In this case, you would see your oncologist earlier.


    Triple negative and ER-/PR- HER2+ tumours grow faster than other types of breast cancer. If your surgeon or oncologist knows you have these they will be anxious to start treatment ASAP - Do not delay treatment, which I was tempted to do at the time...which looking back was completely ridiculous! In my case, my tumour tripled in size in the 9 days from diagnosis to surgery which meant I went from Stage 2 to Stage 3 cancer during that 9 day wait time.

    Good luck with your treatment.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2020

    Because some of you are discussing medical records/portals and second opinions, we wanted to let you know we've partnered with Ciitizen, a new service that can help you collect and organize your entire health history in a secure online profile — at no cost. Through this, you can have digital access to all of your medical records whenever you need them.

    To learn how Ciitizen can help you take control of your health information (a daunting task for many!), keep it organized, and make it easy and secure for you to access it, visit www.ciitizen.com/BCO.

    You can also share your experiences in this Topic on managing medical records. Thank you and we really hope this can be helpful to you ! (PM us with feedback or questions)

    p.s. for now, only for those getting treatment in the US

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