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Updated treatment plan

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cindylou416
cindylou416 Member Posts: 33

Hi All,

Went to Dana Farber today for 2nd opinion
On my tnbc, stage 1 grade 2 1.2x.09 x1

Diagnosed7/24/23

Loved my surgeon at DF she is wonderful!

She did a physical exam and we went over my path report from biopsy

She emphasized importance of lymh nodes

My biopsy u/s biopsy report stated clear
but she said only an MRI can really tell for sure

In order to make the best treatment choices, shes asked me to come back to Boston in 7 days for MRI, mammo ultrasound and oncology consult to make sure we have everything we need in front of us

She stated this would help decide if we should do surgery first or chemo first

I told her yes of course but i was anxious about the wait and really want to get this treatment started

She stated that its not going to grow and spread in a couple weeks time and we need to have this information

Im just uneasy that its going to take another couple weeks!

My hometown surgeon never brought up the MRi or any other tests and he had me scheduled for a lumpectomy on 8/15

Struggling…..

Cindy

Comments

  • krose53
    krose53 Member Posts: 74
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    Hi Cindy, your oncologist is right. It’s always best to have all information first. In actuality, you can not be positive all your lymph nodes are clear until after your pathology report. Mine said clear after MRI as well as after surgery but when the report came back I had 3 positive nodes. Sounds like you are in great hands. Good luck to you and it all gets easier. This is the hardest part.

  • norcals
    norcals Member Posts: 206
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    Hi Cindy. My initial consult with my surgeon staged me at stage 2c with my IdC at less than 2 cm x 1 cm based on mammogram, ultrasound, biopsy. After MRI and CT scan, it showed over 6 cm with in my breast with enlarged supraclavicular, inter mammary, etc. I was then staged at IIIc/IV. So, I agree with your DF doctor. You need to get the tests before you start a treatment plan. This is really crucial for TNBC.

  • iamnobird
    iamnobird Member Posts: 229
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    Hi Cindy,

    All of the waiting is really tough and I felt the same way as you, for sure. My diagnosis was 8mm of Stage 0 DCIS and I was prepared for a lumpectomy and radiation. However, my doc also wanted a MRI before surgery to make sure that the information from the mammogram and ultrasound and biopsies was correct and to check the size of the DCIS. I really didn’t want to do it, but they were adamant. After the MRI, they discovered that my patch of DCIS was actually 9cm. BUT, even then they didn’t realize I also had an 11mm HER2+ IDC tumor AND a positive lymph node until after surgery. None of that was seen on imaging or felt on physical exams.

    I say this not to scare you, but to confirm that your surgeon is doing all of the right stuff. And also to say that diagnosis can change a lot, especially in the beginning phases, so it is good to have a mindset that it is an evolving diagnosis. That said, many folks have absolutely have a diagnosis based on imaging that remains the same. I hope that is the case for you. Good luck!

  • cindylou416
    cindylou416 Member Posts: 33
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    are the results from the MRI, u/s and mammos typically available for your doc to read right away? I’m driving all the way back to Boston next Tuesday for all these tests and I’m hoping that we can make a decision while I’m there. I need to have a plan!

    My doc mentioned doing neoadjuvant chemo if the tumor is larger than what was originally suspected….how does this benefit me more than sugery? I am good with having a mastectomy, just want it out

    Cindy

  • iamnobird
    iamnobird Member Posts: 229
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    I think there is usually a wait for MRI results, but I can’t say that for sure. In my case there was about a week between the scan and a review of results with my surgeon. I had instant results for the mammogram and ultrasound.

    As far as chemo before surgery, this is very common for the more aggressive tumors. I am HER2+ so chemo is normally given before surgery if the tumor is over 2cm and sometimes with even smaller ones. Mine was 11mm and since it was a surprise during surgery, I am doing chemo and radiation afterwards. With both HER+ and TNBC, there are usually many layers of treatment to reduce chances of recurrence or distant metastasis. The good thing about doing chemo before surgery is that you will know that your tumor responded to the surgery.

    Anyways. I know that this preliminary part can seem excruciatingly slow, but Dana Farber has such an amazing reputation that I am sure you are getting super thorough and diligent care. They also have a good reputation for trying not to overtreat.

  • maggiehopley
    maggiehopley Member Posts: 111
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    It's important to remember that no one dies of breast cancer that is IN the breast, it is breast cancer cells that have traveled elsewhere that can be life-threatening. Chemo before surgery can start killing any cancer cells that have escaped immediately, and as lamnobird said, your doctor can see how your type of cancer responds, which will guide future treatment. I was Her2 positive, and only had a partial response to neoadjuvant chemo, which changed my post-surgery plan from herceptin to Kadcyla.

    I have had 2 CT scans, a bone scan, and 3 MRIs and have always had my results within a few hours, but it definitely depends on your hospital system and the work load of the radiologists. Taking several weeks to get a complete picture of your situation is very important and won't change your prognosis at all.

  • cindylou416
    cindylou416 Member Posts: 33
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    thank you all for the helpful information❤️

    Each day i learn so much more about all of this - just want to stay ahead of it and try to be calm while the docs are figuring everything out

    Your experiences that you share and the advice help so much to remind me I am not alone

  • Tonto1
    Tonto1 Member Posts: 1
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    Hello, I have been doing QiGong which really helps to keep me calm and helps you may want to try it. Lots of videos on YouTube so you can do it at home for free.

    My main worry right now is my teenage daughter, I do not want to tell her it is Cancer I wanted to just say it is a lump which needs removing and I will require treatment after. My daughter is just going into year 11 so lots of exams and pressure for her and I do want this to ruin this important year for her.
    I am mindful of the side effects when the treatment starts and my daughter does not miss a thing so I am getting stressed about how much to tell her and when to tell her.

    I am not worried about the treatment or the surgery, my only concern is telling daughter… any advise would be a great help.


    stay strong you are not alone 💕x

  • katg
    katg Member Posts: 211
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    To all ladies, thank you. Dana Farber is one of the best. I feel like what you heard there is what I heard. In hindsite, It is harder to remember, but i got a biopsy with a guided ultrasound after a mammogram at the start of July 2021 at my local hospital. I was referred to a local surgeon or to the City of Hope. I checked my insurance and found a doctor at the COH, from there on July 20th I got another mammogram and had a breast MRI. At COH, they wanted to ensure the tumor on the left that was over 5cm was the only one. Nothing in the right or lymph nodes. What a change this was. I was asked if i would like a genetic test. I said yes.

    Because of the size of my breast and the size of the tumor, chemo first was suggested. I was ER+/PR-/HER2-.

    2 days before my chemo was to start August 10, I got the results of my genetic test. My chemo's changed. I went from 1 every 3 weeks to two every week for 3 months. Then i was to have 4 more, one every 3 weeks. But, after one of the 4, all the chemo had caused pancytopenia. My white/red/platelets dropped. Not good. I did not have any more chemo infusions. I was given a drug line called olaparib. Sadly my blood numbers did not go up. It was December 2021. Surgery was scheduled in early January. Olparib was stopped.

    My tumor shrank 1/2. Early January i got covid. The Medical oncologist talked with the Oncology team and surgery was scheduled Feb. 9th.

    The tumor removed out of my breast's biopsy showed it was HER2+.

    After the MRI, the MO will have a clearer picture of what is going on Cindy

    I had a bone scan before my surgery to see if anything else would light up in my body. a CT scan came to and I have had 3 of those 2.

    Since my surgery on Feb 9th where i had my ovaries/fallopian tubes, left breast removed, I have had the right breast removed. Skin saving double mastectomy. Months after i started Lynparza, a cousin of my first olaparib chemo drug. One full year two in the morning and 2 at night. A targeted drug. One year ended in June of 2023. Femara started then too and that one drug could be for 5 - 10 years. ER+ diagnosis and Brca2 means stop the estrogen……. I also had herceptin/perjeta insusion 18 times, with one every 3 weeks. That ended in March of 2023.

    All of our journeys started where you are. I feel blessed to have been at COH where the genetics test opened a door to focused treatments.

    Your MRI could show nothing new. That would be great news. Keeps us posted.

  • moderators
    moderators Posts: 8,069
    edited August 2023
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    Hi @Tonto1 We all totally understand the dilemma of sharing this information with your daughter, and wanting to protect her and her junior year. However, not understanding what's happening (e.g. you're tired, have pain, etc) can be very unnerving to children of all ages. To help avoid this, it's typically recommended to tell children about the illness, in advance of side effects that cancer treatment might cause and the ways their daily lives and how the family works together may change. Here are some good articles you may find helpful: https://www.mdanderson.org/cancerwise/how-do-you-talk-to-your-kids-about-cancer-diagnosis-and-treatment.h00-159307779.html

    https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-teens-about-cancer#:~:text=Gently%20share%20most%20of%20the,the%20information%20and%20ask%20questions.

    Hang in there, you're not alone!

  • kaynotrealname
    kaynotrealname Member Posts: 397
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    Hi Tonto. I had an almost 15 and 17 year old daughters when I was diagnosed. I understand wanting to protect you child, we all do, but at the same time she's old enough to put two and two together. You tell her a breast lump and she's going to ask if it's cancer. There's two answers you can give there and one will be a lie. I don't think any of us would recommend you go there. What worked for me was the truth, said in a short simple format with confidence and peace projected. This truth consisted of my diagnosis, emphasizing the early stage it was caught in, the treatment for it, and the assurance that I would be fine. That was probably my only exaggeration. Obviously I couldn't know if I would be okay but that's what my children needed to hear so that's what I told them. And I continued to keep that confidence and assurance throughout my treatment. My children had a great school year despite me being in active treatment and hardly missed a beat.