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How effective was neoadjuvant chemo for you?

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CameraKim
CameraKim Member Posts: 33

Hello everyone!

About a month ago I finished my last round of AC/TH chemo. I had my lumpectomy and SNB last week and am still waiting on the pathology. My BS seemed very pleased by how much my tumor seemed to have responded by the MRI results. Their best guess is that my tumor shrank by aprox 82%. I was hoping for 100%!! 

I will hopefully know by the end of the week if there is any cancer remaining. The wait is hard!

Just wondering what results others had after neoadjuvant chemo?

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  • Mwilson
    Mwilson Member Posts: 5
    edited March 2013
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    I also had chemo first, last one was last Thursday. I had a CT and it showed no signs of the tumors:) My Dr thinks I will have a good pathology report after surgery and will not have to have radiation. I'm hoping he's right. Good luck to you!

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Mwilson, are you going to have a lumpectomy or mastectomy? I had insisted on a mastectomy at first, but decided on the lumpectomy at the end because the tumor was so small after chemo...less than 1cm. We're hoping all that was left was some scar tissue.

    Good luck to you, too! Here's hoping for pCR!!!

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Haven't had surgery yet... Scans show tumor still there.. Doctor said about 50% smaller and a lot less enhancement in there.. MRi measurements r very close to first measurements it doc said they look at volume.. I get conflicting ideas though bc I heard er/pr positive especially her2 neg also tumors do not respond so well to chemo but grade 3 ones respond well.. So I Am both so don't really know how good my response was.. Also heard younger people respond better too and I at 31 had average response.. Was defintely disappointed.. Doc said tumors dont always shrink in size but have more of a Swiss cheese death inside.. Heard this from many people on this site .. I don't know I am scared

  • Mardibra
    Mardibra Member Posts: 194
    edited March 2013
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    I had neo-adjuvant chemo last winter and a UMX last April.  Pathology from UMX said "minimal evidence of disease" (unmeasurable).  Surgeon was delighted so, im calling it a success!

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Hi Shari, was just thinking about you this a.m. You must be coming up on your surgery soon!

    I know you're having axillary lymph node removal and I started worrying that I didn't. We know I had one positive axillary node but at surgery she just removed three sentinal nodes. I read afterward that sentinal nodes are 92% reliable in reading axillary node satus but I'm still nervous about not knowing for sure!

    I was also told that it wasn't just size of tumor, but volume that mattered. I think it's common to have some tissue remaining. 

    I hope others chime in, too! Thinking about you and hoping your surgery is a big success!

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Hi hi hi .. Surgery is on the 28ty.. It can't come soon enough... Well ifur sentinels lymphs were negative.. That's a really good sign ...

    Mardibra: we're ur nodes positve after chemo! And that's so awesome about minimal evidence of disease.. Did tumor disappear completely or just shrink or just die inside

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Kim did they biopsy ur node before chemo? Is that how they knew it was postive?

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Sheri, they did biopsy on an axillary LN before chemo because it lit up on the pet scan. It was positive at that time, but looked "normal" on MRI after chemo. Guess that's why she chose sentinal removal instead. less chance of LE I guess. 

    My tumor shrank by 82% but couldn't be felt by BS or seen by radiologist on ultrasound....they had to put my wires in using a mammogram and even then they couldn't see much. Still MRI showed about 1cm remainig. I'm so nervous/anxious for path report. 

    Wondering how many of us neoadjuvant ladies show complete path response after chemo!

  • Momine
    Momine Member Posts: 2,845
    edited March 2013
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    I had a good response, but not a complete response. At the start of chemo the tumor area measured about 8X8 centimeters. After the first chemo it went down to 4X6 and by surgery time, there was 0.8X1.2 CMs left.

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Wow...Momine that seemed to be a great response. Was your remaing tumor dead tissue, or was there a little cancer still left behind?

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Yeh.. Momine that's great.

    Kim I don't know where urs I located but I am still feeling it.. That's what I hate hat I can still feel ot

  • Mwilson
    Mwilson Member Posts: 5
    edited March 2013
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    CameraKim...I will be having a mastectomy. Just saw the surgeon today, looks like it will be next month sometime. I hope you get a good report:)

  • wintersocks
    wintersocks Member Posts: 434
    edited March 2013
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    I had a conflict of opinion between my BS and the surgeon. On MRI the onc said the result was disappointing. The BS thought the response was excellent! - how does anyone pull that together?? - I wasn't sure what to believe. 

    My bs told me that looking at, palpating the tumour was sometimes more accurate at assessing what was actually happening then MRI. Certainly, the boob, it got softer and more like normal I noticed.  

    I ran this passed a midwife friend of mine and she totally understood the concept, of getting a sense of the baby by observation and, palpation. She felt that in obstetrics there was sometimes an over-reliance on technolgy.

    I was/am still a bit unsure about the whole neo-adjuvant really....  

  • LockeKopp
    LockeKopp Member Posts: 16
    edited March 2013
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    I had complete response, all gone after chemo.

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Wow...thanks for posting everyone. Seems a lot of you got complete response or very close to it. That is very encouraging. 

    Wintersocks, what was the final outcome after surgery? Was the cancer actually gone with just dead tissue remaining? I agree that I don't totally believe MRI's and technology. I got a different size measurement on each machine...u/s, PET, MRI, Mammogram. I have really no idea what size my tumor was to begin with. 

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    I definitely heard triple negatives and her 2,positive are more likely to achieve a compete response more than someone er/pr positive and her 2 negative... So I guess my response was ok.. Would have loved complete response though 😢😥

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Shari, your cancer may be mainly gone, too. If you had a lot of DCIS, you might have just a hollowed out tumor with DCIS remaining. Like I said, I still have something left in there...hoping it's just dead tissue. I wish I got a PET scan instead of the MRI. I'd like to know nothing "lights up"...period!

    I feel encouraged hearing everyone chime in with good results. Has anyone had to have a different round of chemo if there was still significant cancer remaining, or do you just trust surgery, rads and medications?

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Bump:

    Kim tell me how it went.. Did u get path report

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Shari, 

    A total pCR for me. In fact, my breast surgeon is going to the tumor board with my entire history.  She said this was the oddest case she's ever seen in 20+ years. What a roller coaster ride. We thought I was stage 0 at the beginning. Then they found a microinvasion in the DCIS. Ordered MRI and PET...found cancer in a lymph node and maybe on a rib....that put me to either IIB or IV....we didn't know anymore until after chemo as they were a watching the bone lesion.

    After chemo and surgery, the bone lesion stayed the same....we were thinking IIB...then pathology from lumpectomy came back and it says stage I...T1/N1 with no vascular involvement. 

    I'm confused....but in the end, it's GREAT news. Radiation starts in two weeks.

    So glad I did the neoadjuvant chemo...

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    So nothing in the nodes? Any tumor left?

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Nothing in nodes....and tumor was just mush...no invasive cancer. Hoping the very same for you!!!!

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    So nothing in the nodes? Any tumor left? That's great...

  • wintersocks
    wintersocks Member Posts: 434
    edited March 2013
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    camerakim,

    I know that the tumour response was partial. I don't know to what extent though. When I got my path report I did not look at it as I was too scared. I still have not seen it. It scares me too much.

    I have a bit of a healthy disrespect for MRI reports. I don't think they are as accurate as we are led to believe.

    I really trusted my bs analysis. She is fab.  

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Wintersocks, honestly I don't really trust the MRI either. It's just ONE piece of the puzzle.  My BS told me they pick up everything and often inflate the size.

    My original mammogram, and ultrasound said 2cm...PET scan was similar in size, but the MRI claimed it was 4cm!?!

    My final pathology extimates my tumor was 2cm. I guess with neoadjuvant we'll never know for sure! Like you, I trust my BS!

    Have you been scanned again after completing your rads. I can't imagine how scary this will be for the next few years!

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Camera Kim I am so happy for u! I pray for a good path report too!

    Also when u say ur final path stayed tumor @ 2 cm.. Was that size before or after chemo.. Anyway I think ur story is great

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Is it ok if no pcr for my type kayb

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Shari I would sure think so....you have surgery and radiation, right? Plus there are so many optinions when you're er/pr+. I'd say you have a great prognosis :) Hang in there...

  • stride
    stride Member Posts: 151
    edited March 2013
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    Shari, I second what CameraKim said. Has your oncologist talked to you yet about hormonal therapy? Also, I think I have read that only about 15-25 percent of people who have neoadjuvant chemo end up with pcr. And the vast majority of people who do not get pcr do not have metastasis.

  • Shari0707
    Shari0707 Member Posts: 260
    edited March 2013
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    Aww thanks I really needed to hear that Kim and stride.. I really did.. I had been having this feeling of impending doom.. Thus I was all gloom... Haven't had surgery yet but feeling so anxious especially when I hear these amazing results and knowing I didn't have that.. I feel a little better now

  • CameraKim
    CameraKim Member Posts: 33
    edited March 2013
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    Remember though Shari, they really don't know what's left until they get in there. They still thought I had about 1cm of tumor to remove from the MRI and my surgeon said there really was nothing there. She took out an area of 5cm x 4cm x 2cm. 

    For those of us hormone negative...chemo is one of our biggest (or only) weapons. Hormone therapy is very, very effective!

    Waiting stinks....you'll feel more in control again after surgery and your new plan is in place :)