Residual Cancer after Neoadjuvant Chemo

poisedandpink · April 2019

Hi All,

I finished eight round of chemo in March. Four of AC and four of Taxol. I previously had a lymph node biopsy that was negative. I had a double mastectomy where during surgery six lymph nodes were removed and also tested negative.

However, after further testing my pathology report was returned and two of the lymph nodes testing positive for micrometastasis. My breast surgeon feels confident that the amounts were so small that radiation should take care of anything in my lymph nodes so I do not need additional surgery to remove any more.

He did mention that my tumors while they did shrink enough that margins were clear to save my skin and nipples (I had two tumors) still had active cancer cells in them so it was considered residual. He mentioned that my oncologist would put me on an oral chemo. He said the side effects are less harsh and I would not lose my hair again.

I"m freaking out. My oncologist is out of office so I'm unable to meet with her until next Friday. I've never felt like I could die from this more than I have once I received this pathology report. Is residual cancer normal with stage 3 ER/PR+ cancer? I'm terrified at the thought of more chemo. Its been a hard past few months, but I was mentally getting better thinking I only had radiation left to do not more chemo.

Does anyone have experience with this?

Trishyla · April 2019

Like you, my initial surgical pathology gave an all clear on my nodes, but micromets were later found in just one. Talk about a punch to the gut. You think you're in the clear, then BAM. More cancer. I was devastated as well. But then my breast surgeon (my rock through this past two and a half years) told me not to worry. All it showed was that my lymph nodes were doing their job and keeping the cancer from spreading elsewhere. The fact that it is micromets is a very good thing.

Don't know what oral chemo they'll put you on, but I did 8 rounds of Xeloda. It was so much easier than the ACT. A bit of Hand/Foot Syndrome and a few gastrointestinal issues. That was it. My hair started growing back after my last Taxol, and and kept on growing through the Xeloda.

Whatever they put you on, find the thread on BCO for tips on how to cope with any side effects.

You've made it through the hardest part. The oral chemo is just the crappy afterthought. You've got this, sweetie.

Best wishes for continued healing.

Trish

LaughingGull · April 2019

Hi poisedandpink,

Hey I love your handle

Very sorry that you got diagnosed at such a young age. I went through a similar path exactly a year earlier than you...diagnosed in October, started chemo in November, surgery in April...it is all very fresh in my mind. I was 47 when diagnosed.

It is very common for hormone positive cancers to not disappear completely after chemo, not sure what the percentage is (hopefully someone will chime in and post a link) but I believe that more than half of hormone positive cancers do not achieve pCR.

When initially diagnosed (found the cancer myself after a clear 3D mammogram and exploration by a cancer surgeon three months prior), I had a 3.5 palpable tumour and an enlarged axillary lymph node (which tested positive for cancer, and it was actually two adjacent lymph nodes), and after 5 months of aggressive chemo (and with no palpable cancer anymore and a clear MRI), surgery revealed a 2.5 remaining tumour in the breast, and two nodes with macrometastases.

I totally understand that you are petrified by fear right now. For me, it felt like being newly diagnosed all over again. You are trying to read those long faces tempered by still optimistic messages, and trying to make sense of it all. Once you manage to sadly let go of the broken hopes of a complete response, which would have left you with the best possible prognosis, you need to start working with what you have.

I got all my lymph nodes removed (since we knew all along there was cancer in them) and I also got radiation. I sailed through the radiation. I also opted for being aggressive with my hormone treatment, and got rid of my ovaries -but I was 48 by then and already had children- and I started aromatase inhibitors. Since my cancer was triple positive, I had an additional year of anti-Her2 treatment, and then looked for additional treatment, I an now on Nerlynx which is another anti Her2 agent that somehow is expected to work best for hormone positive cancers.

If I were you, I would take the most aggressive approach that maximizes your chances of not getting to Stage IV ever again. Just glance at the Stage IV forums and see what these ladies are going through. I will take anything that gives me real chances of not getting there. More chemo? Then more chemo it is -I asked for more chemo, as soon as I heard the bad news after surgery. Just a few more months. It will go fast.

Take care of your mental well-being. If you are in the city, you have plenty of resources for mental health professionals specialized in cancer, support groups, etc. I joined a meditation group for cancer patients and I totally love it. I am in the city too -PM me if you want to chat.

Best to you and good luck,

LaughingGull

LaughingGull · April 2019

Another thing that changed for me after the residual cancer was found, is that I started being better informed and involved in the next decisions about treatment. Up until then, it was early stage, standard treatment, great hospital, I felt I didn't need to worry about anything. After that, it gets trickier.

In your case, what are the odds that you have cancer in the remaining nodes that will not be taken care of by radiation? Also, radiation will prevent a local recurrence, but not a distant recurrence -and distant disease is what kills breast cancer patients. That's why you will need systemic treatment -chemo.

I started paying a lot more attention. I got second and third opinions, and I read the papers about the latest treatments relevant to my cancer type. I even disagreed with my oncologist, which I would have never imagined would happen, since I am a very chill and compliant patient.

You can do this. Best of luck,

LaughingGull

poisedandpink · April 2019

Thank you both for the input. It's comforting to hear that this is not unusual for ER/PR+ Her2- cancers with chemo before surgery. I think my expectation was off base by thinking the tumor would just 100% completely disappear and that I was done with treatment. I think I was maybe too optimistic about my treatment plan. For some reason I just assumed that was typically the expected result. Since my tumor was shirking so much in size - it could no longer even be felt before surgery - my team only mentioned hormone therapy to me not more chemo post surgery. That is what really threw me for a loop.

Trishyla, that's the sentiment that my breast surgeon had as well about my lymph nodes I feel confident in my plan to do just do radiation to treat them given the amount was so small the microscope missed it even the first thing when they tested during surgery.

I'll find out more about the type of additional chemo next week when I meet with oncologist.

Trishyla · April 2019

Exact same thing happened with the pathology during my surgery. They sampled a slice. No cancer. Then when they dissected the entire node, they found micromets. My poor breast surgeon has been kicking herself ever since for missing it. She monitors me very closely.😏 Just in case.

I don't know if you'll have Xeloda, but if you do, it's super doable. More of an annoyance than anything else. Those pills are freaking huge! And you have to take like 5 or 6 twice a day. Ugh. Other than that, manageable.

Good luck to you. You will feel better once you know what's coming. Just remember. One foot in front of the other. That's all you have to do. It'll be over before you know it.

Trish

poisedandpink · April 2019

Trishyla,

Out of curiosity did your Oncotype DX factor into your MO's decision to go on Xeloda at all? My score is a 15. I'm not sure that matters anymore given the residual cancer and that I did chemo before surgery anyway.

Magnolia-mom · May 2019

Poisedandpink-- will you have more chemo? Our stats are similar except that I had macromets in one node before and after neoadjuvant chemo. It reduced in size by half with treatment. My breast tumors also reduced in size. My oncologist explained to me that my results were good, but not great and that this is expected with hormone positive cancer. I am only treated hormonally now. No more chemo.

Trishyla · May 2019

Sorry I missed your question, Poised. I didn't have the Oncotype testing done. There's no need, since I also have triple negative cancer. Chemo is always given for triple negative.

Have you made any decisions on your treatment plan?

Hope all is going well for you.

Trish

poisedandpink · May 2019

Trish, Thank you for the response. My score was only 15 so I was curious.

I'll be doing 5-6 weeks of radiation. The length will depend on if I can get into the trial for Proton Therapy or not. I'm doing monthly injections of Lupron. I've started Tamoxifen and I will be doing six months of Xeloda.

Magnolia, my oncologist felt I still needed to do the six months of Xeloda to be preventative in addition the hormone therapy.

G1973 · September 2019

I am so happy to find this thread. You all have inspired me and feel much better. I found my large lump in April I did AC/T dose dense. The AC did not have much effect but the taxol we thought cleared my axillary node. It also shrunk the tumor by more than half During my BMX we got a false negative on my nodes and they came back 2/3 positive. Needless to say Monday I will be having an axillary node dissection.

My BS mentioned more chemo and radiation to start after my PS is able to expand me. When should I start meds for my ER+? What other questions should I be asking???

poisedandpink · October 2019

Hi G1973,

My oncologist paused my Tamoxifen (the hormone blocker for ER) until after I finish the oral chemo. I am still doing the monthly lupron shot while on the oral chemo.

I would not panic! My oncologist actually informed that a total complete response to chemo can happen, but is not the norm for hormone positive breast cancers. I'm grateful to know that treatments have evolved and there is the option to do an oral chemo to help us! I'm currently on Xeloda 7 days on and 7 days off rotating for six months. I'm 3 months in and very happy to report I have little to no side effects aside from feeling a little more fatigued during my "on" weeks. The first two cycles I did get a tiny mouth sore each time but it healed quickly. Its incredibly manageable (for me at least) compared to the iv chemo.

Let me know if you have any other questions!

G1973 · October 2019

poisedandpink - Thank you so much for the info. So much going on so fast and it is nice to have you part of my support team. I hope to find out my pathology from the dissection soon and will meet with my oncologist next Wednesday. Sending many thanks❤️❤️

Residual Cancer after Neoadjuvant Chemo

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