What happens Next after Biopsy and Diagnosed?

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SlimC
SlimC Member Posts: 3
edited November 2020 in Just Diagnosed

Well really do not know where to start because it happened so fast and I tend to be a very positive person and truly did not think I would every get negative results. I had my biopsy on November 18th because I felt a lump on my right side in the 10:00 position but I had a cyst early this summer and it was just a course of antibiotics. On Tuesday November 24th, my family doctor called me with my results (way sooner then I was expecting to hear I was will take 7-11 days) I was not expecting results in four days. I have been told it is grade 3, Metastatic Invasive Ductal Carcinoma that is a tumor size BRAC 16cm and moved to at least 1 lymph node as far as they can tell cause it was enlarged and they took a core sample from it as well. I am being told stage 3 but do not have any info on estrogen, triple negative or her2 yet. When I was very young, I had bad endometriosis and eventually tested positive for CA-125 and I had a full hysterectomy at 26 years old. I keep my ovaries, but uterus and cervix were removed (I had three beautiful children prior to this). But now 16 years later I know was very young to having this procedure but for 16 years without it was much better with it. But now Breast Cancer I am in shock a bit numb, I am not even 100% what comes next surgery, chemo, radiation or all the above but in what order. I lived in Edmonton and have already had a referral to the Comprehensive Breast Program and seeing a surgeon Friday Dec 6. A nurse Navigator is calling me on Tuesday Dec 1. I have been given a lot of reading material all the resources, but nothing says exact what is going to happen, when or how long…. I joined this group days ago and think I am still in shock and denial because it's moving fast but not fast enough. I have lots of question, but this unknown is giving me anxiety never been an anxious person till now. I work lots and have very successful career but now what? I am used to working 10-12 hours a day and that I can control and rarely get a cold I do not feel sick and I up until now I have never had time for sick. I read all your posts and think I want the baby cancer not this and would like to see the return policy(dark humor sorry, I said I am pretty positive and I'm trying plus it is 5 days of knowing maybe still in denial. I am in Canada and I have great insurance but the unknown and questions and what all the above means is hard to wrap your head around. I am a very black or white person and always the type of person that if you tell me to get from A to Z, I will get it done and won't miss a beat or but this waiting, unknown and being stuck on "B" is uncontrollable.

Trust me I trying to keep myself busy and focus on other things like work, family and xmas but COVID-19 can you please stop, this is the time to have support around not the time for restricting all social gatherings, closing all businesses and fining people for breaking the rules. I need distraction and to keep myself busy not be isolated……

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited November 2020

    Hi SlimC. I'm sorry you are here with this recent diagnosis. The first part is so hard, waiting for answer on so many questions that never needed to be asked before. Your habit of moving from A to Z will do you well in this process, as much of it is based on doing what your medical team tells you, getting through it, and going on to the next thing.

    Have you seen a written copy of your biopsy results? I know all the terminology is new to you. You'll get a crash course in it and that will help you understand what you are being told and what you read here. Feel free to ask people here when you're not sure what something means or how it applies. The word "metastatic" is generally used with stage 4 cancers, not stage 3, so that is something to clarify when you talk to the nurse navigator next week, or with the surgeon on Friday.

    Your tumor, if really 16cm, is pretty large. In the US it would be typical to have chemo prior to surgery for a bigger tumor. That's called "neoadjuvant" chemotherapy.

    I'm not sure what "a tumor size BRAC 16cm" means, when including the BRAC. There are blood tests to look for genetic mutations that are related to breast cancer. BRACAnalysis is one of them. So that might be something to ask the nurse, too.

    You will get a lot of information in the next few days. If you continue to post questions here in this thread, it will help people answer.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited November 2020

    SlimC, sorry you found yourself here, but welcome. You may have more testing done, before the treatment plan is decided. Your surgeon will likely refer you to an Oncologist, who may order BRCA genetic testing, Onco-type or mammaprint testing, maybe more imaging. Just hang tight. It will feel like a roller coaster ride for a bit. Try not to get ahead of yourself and just wait for all of the testing to be done so you can make the best decisions regarding your treatment. I know it's easier said than done. If you have questions of your medical team, always ask. If you are able, I would take a trusted person to your initial appts to help take notes, etc. Get copies of your records as you go, in case you want another opinion. Many people have been in your shoes and those here will provide answers and support. Your Nurse navigator will be a great resource. Best wishes!:)

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  • SlimC
    SlimC Member Posts: 3
    edited November 2020

    Hi Mountain Mia, I do have my biopsy results they gave to me because I am bless to have family in the medical field (obgyn) and my family doctor has been my doctor for 15 years and friends with my family. I have a tumor and enlarged lymph node so when you read the biopsy it says

    A Lymph node Positive for Metastatic mammary carcinoma

    B Invasive ductal carcinoma

    then three score of 3 for Glandular, Nuclear, and Mitotic

    overall grade is 3 ( 8 or 9)

    Then some sizing and negative for for DCIS , GATA- 3 weakly positive

    My tumor is 6 cm not 16 just to clarify and I have never had BRAC testing.

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2020

    Slim, sorry that you've joined us.

    You mention that you are scheduled to see the surgeon. You will also need to see a Medical Oncologist. Often this doesn't happen until after surgery, but with a large grade 3 tumor and nodal involvement, as MountainMia mentioned, an MO may recommend chemo prior to surgery. This will certainly be the case if your cancer is either triple negative or HER2+, so getting that pathology information prior to making any decisions is also crucial. For any treatment other than surgery, the MO is your go-to doctor, and since in your case other treatments may be done prior to surgery, you absolutely need to see an MO as well as a surgeon. Or, at minimum, if you cannot get in to see an MO quickly enough, your surgeon needs to consult with a tumor board, including an MO, prior to any decisions about next steps. The decisions that need to be made go beyond the expertise of a surgeon.

    To reiterate another of MountainMia's points, any time that breast cancer moves beyond the breast, technically is it metastatic. So you have a lymph node that is positive for metastatic breast cancer. But, a diagnosis of "metastatic breast cancer" is something different - this refers specifically to Stage IV breast cancer, where the cancer has moved into the body, beyond both the breast and the underarm lymph nodes. So you have a metastatic node, but you have not been diagnosed with metastatic breast cancer. Because of the confusion, usually rather than call a node "metastatic" (although technically correct, hence the wording in your pathology report), a diagnosis such as yours is described as being "node positive IDC" or "IDC with lymph node involvement".

    As an FYI, following are the NCCN Treatment Guidelines with regard to neoadjuvant chemo. The NCCN guidelines are American but they are the gold standard, and generally Canadian protocols are the same or very similar (I'm in Ontario).

    image


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  • LivinLife
    LivinLife Member Posts: 1,332
    edited November 2020

    Welcome SlimC! I really can't add to the great information the others have already offered. I think they covered everything for where you are now.... This is a great site for information and support so please stay in touch regularly... esp. since COVID as you said....

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  • SlimC
    SlimC Member Posts: 3
    edited November 2020

    Thank You Beesie, I have alot websites that they gave me to go through and now trying to make a list of all the questions I have like Chemo first or surgery. I am in Edmonton AB, so when you get your referral to the Comprehensive Breast Program they get you a surgeon, oncologist and a nurse that is assigned to you through this whole journey. I might hear this week on the Oncologist.

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  • moth
    moth Member Posts: 4,800
    edited November 2020

    hi SlimC, sorry about your diagnosis but glad you found your way here. So much support and great info here.

    I'm in BC and just a heads up that at our cancer agency pts can bring someone with them go the first appointment only. After that we have to go alone. Parking lots are full of our friends and family huddled in blankies waiting for us to finish treatment. It's possible Alberta cancer has the same policies.

    We're in full social lockdown again. Can't even have my parents over for a socially distanced visit outside. It sucks but you do sort of learn to cope and go on. Covid is so dangerous to cancer pts do be super careful now. We're in the vulnerable group...

    Once you have your treatment plan worked out it's emotionally easier. Hang in there

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