Residual cancer after neoadjuvant chemo

Mom_of_twins · June 2016

Hi everyone! I'm new here unfortunately, and this is my first post...although I've been reading a lot on here. I am stage 2B IDC strongly ER+/HER2- (FISH). I underwent AC+T neoadjuvant chemo (3 cm tumor manually measured) and just had a bilateral mastectomy. Anyway, during the course of neochemo, my MO felt significant shrinkage and softening of my mass and palpable lymph node to the point they were no longer palpable during the last few rounds. A scan before surgery showed no enlarged lymph nodes and no longer identified the tumor--I was so excited!! But my surgical pathology surprised all of us: I had 4 mm of cancer in 2 nodes and a residual 1.4 cm tumor "with therapeutic changes." They didn't quantify what that meant in the report. Anyway, during my appt with MO, she had nothing positive to say and I left feeling like I was knocking on death's door. I went from full of hope to scared and hopeless. Anyone out there who had similar residual cancer in nodes and breast and have done well long-term??? She honestly made me feel like my future was grim. Ugh. I have four little girls (two sets of twins ages 3 and 5). Now I am so scared I won't see them grow up. I need hope.....

ElaineTherese · June 2016

A couple of thoughts....

1) Many women do not have pathological complete responses to neoadjuvant chemo. That doesn't mean that they are doomed. Maybe AC + T just wasn't the best chemo regimen to attack your particular cancer.

2) What grade was your cancer? Chemo works best on quickly dividing cells (e.g., grade 3).

3) The manual measurement may have not been very accurate, and you may have had a bigger lump and thus, a bigger reduction, in the size of the lump due to chemo.

4) What kind of scan did they do after chemo? An ultrasound? MRI? PET scan? Was there a baseline scan, using the same kind of scan? I had a baseline MRI and a baseline PET scan before beginning neoadjuvant chemo. Then, I had exactly the same kind of scans after chemo, and then they were compared to the baselines.

I'm not sure why your MO was such a Debbie Downer. Has she scheduled a PET scan? Does she think the cancer has spread outside of the breast area? If not, then you still have localized cancer as far as we know. Most localized cancer has a good prognosis.

((Hugs)) I have 13 year old twins, but they are crazy (on the autism spectrum)!

Mom_of_twins · June 2016

Hi Elaine,

Thanks for the thoughtful response. It sure seemed like AC+T was working, as even I could feel the softening and shrinkage to the point of no longer feeling it. But obviously, it didn't work well enough! The initial Mammo and ultrasound measured it at 2.1 cm, but she manually measured it at 3 cm...she said imaging often underestimates size. Anyway, she ordered a RCB (residual cancer burden) index because she wants to see if there was a marked reduction of volume and cellularity within the tumor, versus just going by size. Those results are pending.

One lab said my tumor was grade 2 and another lab said was grade 3, with a high ki67.

As far as the scans, I had a staging work up with CT of chest and abdomen and bone scan, and there is no evidence of distant metastasis. The initial CT clearly saw the tumor, and the pre-surgery CT couldn't identify it; only saw the surgical clip. Am holding onto hope that maybe a lot of the tumor was destroyed from within due to the comparisons of baseline and post-treatment scans?

I have no idea why she was such a downer. She is very clinical and doesn't have the best bedside manner--but I certainly don't think she should've been all doom and gloom. She seriously had nothing positive to say. My BS, whom I love, on the other hand thought I had a great response and said it was uncommon for strongly ER+ to have a PCR. Mixed messages. Just don't know what to think.

And hugs right back at you! Aren't twins so much fun??

ElaineTherese · June 2016

Hmmm.... I agree that ultrasounds often underestimate the size of a lump. My ultrasound suggested that my lump was 3.9 cm, and it ended up being over 5 cm, according to the baseline MRI. It's interesting that your surgeon said that patients with highly ER+/PR+ cancer are unlikely to have PCRs. My cancer was 95%ER+/95%PR+, and chemo cleaned out the active cancer from my breast and compromised node. Then again, I was HER2+, and I had Herceptin and Perjeta in the mix.

Before I read your post, I'd never heard of an RCB index! Maybe that will show that chemo did some serious damage.

I wonder why your medical oncologist did a CT scan instead of a PET scan for staging? Maybe, it's cheaper or she didn't think your insurance would pay for it. PETs are also notorious for false positives.

Oy, about your oncologist's attitude issues! Most of us are going to be with our oncologists for a long time (I'm doing ten years of an aromatase inhibitor). If your oncologist is a sourpuss, you might consider switching to someone who is more optimistic and hopeful. I'll (hopefully) never see my breast surgeon again, but I'll be seeing my oncologist for another eight years. Thankfully, she's a sweetie for the most part.

Twins can be fun, but puberty hasn't been!

Hope you get some good news from your RCB index!

Mom_of_twins · June 2016

Yes, she said that triple negatives most frequently get a PCR and then HER2+. Whatever the case, that is so awesome! So happy for you. Must've been a relief.

I have to remain hopeful as I have no other choice. And I've been considering a switch of MO's....it feels so hard to switch now as I feel like I'll have to go through the ringer with a new one...but we'll be together a long time. I'm supposed to meet with her next week, and we'll see how she is. I'm praying that I had a better response than we think.

And oh my gosh....puberty! I can only imagine the puberty stage with the 4 girls in my house!!! I hate to think about not being here..... But have to fight those thoughts and believe. Nothing else I can do.

Thanks for your thoughts and nice chatting with you.

Anyone else out there have a similar experience?

Traveltext · June 2016

Like you MoT, I did not achieve PCR after neo adjuvant treatment. According to my MO, who also doesn't have the best bedside manner, as you move closer to the five-year mark, your survival odds match those who did achieve PCR. But hang in there with your treatment and you'll be fine like most of us. To help with future BCO discussions, list your treatments in your personal profile section. As to your MO, why not put up with her tough love if you are happy with her professional capabilities?

Mom_of_twins · June 2016

Thanks for the response, Traveltext. I will continue with treatments and will hope for the best. It's interesting that your MO says the risk levels off at the 5 year mark. I've also updated my profile with info. 😊. As far as my MO, I will see how she is next week. I agree about the fact she's competent, but this is so anxiety provoking as it is; it's really hard to walk out of there feeling like it's all so doom and gloom . Maybe it was an off week and next week will be better.

I hope to get more responses from others who didn't get a pCR and are doing great!!

Mom_of_twins · June 2016

Thanks for the response, Traveltext. I will continue with treatments and will hope for the best. It's interesting that your MO says the risk levels off at the 5 year mark. I've also updated my profile with info. 😊. As far as my MO, I will see how she is next week. I agree about the fact she's competent, but this is so anxiety provoking as it is; it's really hard to walk out of there feeling like it's all so doom and gloom . Maybe it was an off week and next week will be better.

I hope to get more responses from others who didn't get a pCR and are doing great!!

Opt4Life · June 2016

Mom of Twins, I also did not receive a PCR after neoadjuvant chemo but was prepared for that as I was told not to expect it with my high ER/PR mucinous type cancer. However, also like you I had 'marked shrinkage' in the lymph nodes and reduced size of lump and area of DCIS based on my pre and post-chemo MRIs.

My BS was positive he got all the residual cancer in the breast and node snd achieved clear margins. But he did have a serious discussion with me about the importance of completing radiation and staying on Tamoxifen or whatever my oncologist prescribes.

Not sure why the doom and gloom discussion but maybe it was more about ensuring you understood the seriousness of completing treatment. It sounds like you are a very busy Mom and one thing my BS said after giving me the treatment speech and scheduling my next 3 month check-up was to 'keep busy and go live yourlife' and I thought that was great advice.

Mom_of_twins · June 2016

Opt4Life,

Thank you for your response. I am trying to stay hopeful, but it's so hard sometimes. Radiation is next for me and then hormonal therapy. I will do everything they tell me to do. It's amazing what a long and rough journey this is. I wish you the best, as well.

hoosier238 · July 2016

My mother had a similar diagnosis (except also with HER2+), also seemed to have a good response to neoadjuvant chemo, and also had residual cancer in the nodes and breast. Evidently this kind of response is indicative of an increased risk of recurrence and indicates that further systemic therapy may be considered. Post menopausal women who are ER+/HER2- may consider an AI+palbo. I'm not sure what if any additional systemic therapy may be appropriate for you (perhaps you can enroll in a trial?), but please discuss with your MO. Best of luck!!

KBeee · July 2016

There are a few in my adept 2013 chemo group who did not have PCR. None of them have had recurrences to date, so many do not come back to BCO anymore. Be diligent in taking your anti hormonals

Residual cancer after neoadjuvant chemo

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