Response to neoadjuvant chemo?
Comments
-
I got my pathology back today, and good news it is not. The only silver lining is that I only had 5 of 11 nodes involved, but even the ones that showed nothing suspicious on US were positive. I did have clear margins; there was nothing found near the skin or chest wall. Despite the tumor not having been palpable after chemo, it was still 12.5 cm and multifocal. They did see evidence of chemo treatment, but it did not have a great effect. I am also now grade 3, where the initial biopsy put me at grade 2. I will be starting radiation in January and will likely be starting Lupron shots then as well. I am going to try and get into the PALLAS trial; I will speak with my oncologist in January so I will find out more then.
0 -
Lexica, I'm assuming your chemo came before your surgery. If so, it's not unusual not to have pathological complete response. Certainly the rads will be a good thing for you. Tell us about that trial.
0 -
Lexica Definitely some good news in there with clear margins. Sounds very similar to my outcome, though I ham Her2+ so still had Herceptin after surgery (along with radiation.) I also did Lupron for awhile with an AI which they started during radiation. I ended up deciding to have my ovaries removed. Hopefully radiation is as easy for you as it was for me (comparatively speaking of course.) The hardest part was just going every day. I scheduled it first thing in the morning in order to get it over with.
0 -
Hi, Meg, thanks for the response. I am considering having my ovaries removed, too and plan to talk with my onc about it. Doing radiation every day will be tough - I am not looking forward to it, but if it gets rid of this cancer then I'm all for it! Can I ask how far into rads you started with AIs?
Traveltext, the PALLAS trial adds Ibrance to the hormone therapy treatment. Ibrance has been approved in the US for stage IV. It might be similar to xeloda, I think?
0 -
I am pretty sure I started the AI a week or so after my first Lupron shot, both of which I think I started about the time of my radiation initial appointment (which may have been around four weeks after surgery?) My MO wasn't in the "one treatment at a time" camp with my aggressive cancer, she wanted my hormones to stay low. I hadn't had a period since beginning chemo. I can remember rushing around from Plastic Surgeon for expansion, to MO for Lupron, to RO for consult in the same day.
0 -
thanks for the info. I'm finding more and more that I have to push for what I want, even if it isn't what's normally done. I know my onc was worried about side effects when doing both, but I might have to just talk him out of that
0 -
Lexica, so sorry your pathology was not good news. You are so young! I have several enlarged nodes on my good side and US comes back normal. Now I see yours was too. I am wondering how big they were that they stilled showed normal?
0 -
Marijen, you're asking about lymph node size? The largest one was 2.5 mm (macro metastasis) and the remaining four were micrometastasis in the range of 0.2 - 2.0 mm
0 -
Yes, Lexica, that's what I was asking. Well my largest one is 2.1 cm and it shows normal, so I guess they can see it better in the US? It bothers me because it sends aching signals to me all day long. I can understand why yours being so small would not show up in a US. Thanks for your reply. I do hope your cancer is in the past, never to be heard from again!
0 -
those numbers were from my path report. I have trouble understanding all of this, but it doesn't look like they included the sizes of the negative nodes they removed, just the positive ones, but none of them 'looked suspicious' on US. The US has not been my friend, I have to say. Imaging in general seems to have been very unreliable for me.
And thanks
. Let's hope all of our cancers stay in the past tense0 -
Lexica- I also found this to be the case with me for whatever reason, imaging wasn't always accurate (which makes me wonder if its super accurate ever.) Its always subject to the tech or radiologist interpreting it. I got a second opinion on my biopsy and imaging after my original diagnosis (and they repeated all the imaging) and it changed my diagnosis and treatment. Also, sounds like yours is like mine with the multi-focal, mine was palpably vanishing with chemo, but yet I still had a lot of lymph node involvement after chemo. My ER/PR+ % was very high, which I have since read tends to not respond to chemo as strongly, but also a CPR is not as much an indicator of recurrence. AI/hormone therapy is a critical part of the equation against this type (my Oncologist said its the third leg of the chemo/radiation stool because its so effective.) So you still have some weapons left in the arsenal.
0 -
meg2016 - thanks for your input - you are so right and I just have to remain positive. I still have rads, too, and after meeting with the RO my confidence is a bit higher. Some doctors are so good at creating a positive outlook - it was definitely what I needed
. beauz - how are things going? have you started xeloda yet?
0 -
Hi Lexica, thanks for asking. I will see my oncologist on Tuesday and hopefully start Xeloda then. I am feeling well, working hard to regain full range of motion on my right arm, occasional shooting or sharp pain on surgery site and occasional numbness on my feet from taxols. These pain and numbness don't bother me much. I am glad you have clear margins. I hope you can get into the trial and you are recovering well from your surgery.
0 -
glad to have found this thread as i've been feeling pretty upset since finding out i didn't have a great response to chemo. I hadn't even considered that this might be the case, especially since it felt like it was getting smaller...but pathology report was back and still 4 areas of cancer with the largest being 2.5 cm, and 6 out of 16 nodes positive. the margins were clear which is good...but now it's impossible for me to relax as all i can picture is stray cancer cells hanging out in my body. I'm starting radiation next week and then tamoxifen. i was originally stage 2 but i guess this amount of nodes makes me 3 right? I'm so sad. all i want is to be alive for my kiddos
0 -
Hi FuzzySocks,
Love the user name! I felt the same after my 5 months of neoadjuvant chemo and not getting the desired response. Felt like I was tortured for nothing and also moved stages from 2 to 3. Did your surgeon or MO retest the residual tumor? When I had so many positive nodes still, I insisted they test them and not just the breast one and HER+ was found (I was triple negative originally).So now I’m on different chemo but grateful to have that option. Otherwise, can Xeloda be in your playbook? That was what my MO recommended before the HER2+ was found. Or maybe Tamoxifen will be your miracle drug! My cousin (also diagnosed in her 30s)has been cancer free after a stage 3 diagnosis for 7 years and took tamoxifen for 5. Best wishes to you, sorry we’re here together but glad to have the company.
0 -
thanks Pre-K79
they didn't mention to me the option of doing more chemo, just said next step will be radiation and tamoxifan (estrogen and progesterone poster HER-), so hoping tamoxifen will be the wonder drug i need! and yes indeed, it does feel like i went through all that for nothing. It looks like we were diagnosed almost at the same time! my fateful mammogram was mid to end July 2017 too.
0 -
FuzzySocks so sorry, you are very similar to me, except I was ER/PR positive. But had palpable shrinking during chemo and still ended up with similar size afterward and positive nodes. My dr said that did move me to stage III, but at that point after chemo and surgery, stage didn't really matter very much, we should focus on what next steps we had. It gets a little easier over time and moving out of treatment to start not worrying constantly. Staying busy, things like yoga and Pilates, always having something fun to look forward to, whether a vacation, girls day, etc. have helped me a lot. Following the stage III survivors thread of people who are further out is also very inspiring.
0 -
thanks Meg
sorry reading back my post was definitely not clear with my typos...mine is hormone positive too. and just like you, it felt like it was shrinking during chemo, so such a surprise to find not much difference at all! but i love what you say about always having something fun to look foreword too! i think it's time I plan a trip!0 -
Just to reassure you, I was in a very similar position after neoadjuvant chemo and it's 7 years next Friday for me! I felt mine had shrunk but after my mastectomy it was still very large and I had lots of positive nodes. What the consultant said to me was that even though the width was still relatively the same it was now full of holes (she used the analogy of a sponge) rather than a solid mass. Allow yourself to feel upset for a bit but then don't focus on it, I thought it would be downhill from there when they said but it's the opposite and I am really good and haven't had a recurrence. There are so many women on here doing well many, many years out who were where you are.
0 -
Hi Lucca, congratulations on your 7 years! Best wishes to many more years of great health!
0 -
Hi ladies
I also had a lot of cancer remaining post chemo, but based on my mitotic rate and my Ki67,my onc said he was confident he could cure me. And he doesn’t use that word lightly. So like Luca06 I’m hoping he’s right and I’ll be around for many years yet. I’ve got a lot of child rearing to do to see my babies safely into adulthood. Let’s stick together and stay strong. Xx
0 -
newnorm, what was ur mitotic rate and ki6???
0 -
Hi Nas, my mitotic rate was <1/10 and Ki67 was less than 1%. It seems that this is a pretty good post neoadjuvant outcome if PCR isn’t achieved. I was desperately trying for PCR, but didn’t get there sadly.
0 -
Hi Ladies - wow i wish i would have found this thread sooner. I was soooooooo shocked when i saw my pathology report after my surgery. I had extensive cancer in the axilla and the cancer in my breast was also mixed type with mammillary lymph node cancer too. The was macro mets in the axilla and lymph vascular invasion as well.
I was so shocked b/c no one ever told me that chemo generally doesn't work on highly positive hormone cancer (i am an 8/8 on the allred scale for ER & PR). I was pissed that i went through all that shit with chemo for what looked like a worse diagnosis! If i had to do this again (just might happen) i wouldn't do chemo. There is new research coming out that is showing that chemo can push cancers cells further into the body where it is more favorable to grow. It also creates inflammation in the immune system which again creates micro environments favorable to metastasis. I gave my MO shit! He was pretty shocked and basically through the cancer agency under the bus say "well this is what we always do".
Every doctor keeps telling me that i have the most treatable cancer! I guess i won the "Booby" prize (sorry for the bad pun). I don't feel like i have the most treatable cancer. I just feel like i have a longer, excruciating death sentence.
0 -
Roaming_Star Sounds like our diagnosis were pretty similar except I had the HER2+ thrown in. I understand your frustration completely. I do think in my case if I hadn't done chemo and this cancer did come back, I would always beat myself up for not trying chemo. Especially as a parent. I had multi-focal disease so while I still had a high residual cancer burden after surgery, I wonder what it was before chemo? So I try to make peace with the fact that I made each decision of treatment with the information I had at the time and ultimately threw everything medically at this that I possibly could.
0 -
Hi meg2016 - i am sorry to hear about the Her2+ as well for you. I can completely appreciate your position with children to care for. My son left the nest a while ago. I agree too that to make peace with the decisions that were made with the info we had. I think if i were to do it again i woukd have have the surgery first then the chemo - just so that the main tumours were out and not shedding for 6 months of chemo.
All the best,
Roaming
0 -
Hi roaming-star, sorry about your post surgery pathology report. Like yours, mine too was a mess, there was macro mets in the axilla and lymph vascular invasion as well. I don't have cleat margins. I would to wait for three weeks with the report before my MO could see me. From reading your signature, your stage went from IIIB to IIIA. Mine stayed the same, but I did feel the lump shrank. I don't regret having neoadjuvant chemo. My MO put me on Xeloda after the surgery. I am half way through X and having a break so I can do radiation at the moment. I hope you have calmed down. Best wishes.
0
