neoadjuvant chemo causes spread of breast cancer

secondchancetoo

Has anyone else read some of the newest studies on how neoadjuvant chemo opens pathways for the spread of breast cancer, causing it to be more aggressive and become metastatic? I found it to be shocking how more attention has not been paid to this considering the amount of people receiving these drugs

Lisey

This was discussed ad nauseum in my post as well. Here is the link: https://community.breastcancer.org/forum/73/topics/856916?page=1#post_5006029

secondchancetoo

I just went over the link (s) Lisey, quite interesting reading overall. This is indeed a very hot button topic for oncologists to even remotely agree with on any level. It sounds to me like this certainly is an area of study that should not be swept under the rug lest it upset some big interests. I will be very curious to see more research done on the mechanism of these pathways, and how they impact breast cancer specifically.

Traveltext

When you get diagnosed with IBC you have two choices, neoadjuvant treatment or almost certain progression to Stage IV. Not surprisingly, most of us choose the former. Now, if we get a recurrence well so be it, but meanwhile we're not there yet.

MTwoman

secondchancetoo, please take a moment and read through this thread here:

https://community.breastcancer.org/forum/73/topics/856687?page=1#post_5000730

the "newest studies" you are referring to are murine models, i.e. not patient based. Also, they've been looking at what prevents this from happening, "TMEM activity . . .were reversed by . . "

Some of the articles in (non-medical) journals or newspapers reporting on the studies, conveniently leaves out those bits and are, subsequently, inflammatory.

secondchancetoo

MTwoman I did in fact read through the articles, and many more on various online sites. Yes, I am aware that some of these were not human based, but as I am sure you are aware many studies are made utilizing mouse or murine studies before they move on to humans, and 20 breast cancer patients were studied as well.


At the very least this is something that should be explored in much greater detail. So many people's lives and quality of life after treatment is affected by the use of various chemotherapeutic agents. I worked as a nurse for many years, and have witnessed much in the medical field, enough to know that standard of care treatments are not always the right choice for every individual.


This disease is a nightmare for those of us who have had to encounter it, any treatments that may make it less likely to progress is one we all should be thankful for. Different viewpoints are certainly needed as it pertains to this disease, as we have not made the progress that is sometimes purported.

Lisey

Second, I agree with you. Research always starts with animal models before going to human models. There could be a lot of truth here, we just don't have the numbers yet. Not all tumors are the same or would work well with chemo. In addition, our individual genetic pathways could make us resistant or more susceptable to chemo agents. I was tested on my enzyme pathways and found that some chemos would be more toxic to me than others. The era of custom treatments needs to be here sooner rather than later. Everyone shouldn't get the 'standard' but the unique treatment for THEIR particular genetics and the tumor genetics.

secondchancetoo

Yes, Lisey, I do know firsthand about the genetic pathways that affect the ability to tolerate certain chemo. Last year I lost 2 cousins ( sisters) within 4 months of each other to this dreaded disease. One of them had a deficiency of the DPD enzyme, which makes one unable to metabolize 5FU, it is noted to be in less than 5percent of the population, and they don't typically test for it. She had a very severe reaction to the treatment and passed away within a week of receiving it. Very sad as her sister had just passed a few months before of BC. Both were looking forward to retirement.

I see that you are a fellow of the Flat community as I am! It's a hard way to look sleek in clothing but I am looking for that silver lining😀

Lisey

second, looks like we have quite a bit in common! Glad to meet a fellow flat and fab sister. I really like my new body, probably more than when I had huge boobs. An A cup would have been ideal, but no way do I want plastic in my body nor deal with the surgeries to move my butt to my chest (the only other option I was given). I'm channeling my inner ballerina now instead.

Momine

Lisey, exactly the same here, although I am not really a candidate for the plastic anyway (heavy rads). Moving my butt is not an attractive idea. I mean, really? Ass-tits? Besides, if it failed, I could end up with no T as well as no A

Momine

My husband had palliative chemo (i.e. the cancer had already metastasized), and on one of them, the first one they tried, the cancer grew rapidly.

Chemo is a crude treatment. It was invented when there were few options for treating cancer. For children with leukemia, it proved close to miraculous, and it remains an effective and often curative treatment for leukemia.

I lucked out. I am one those cases where chemo worked well and with minimal side effects. I also had a locally advanced cancer, so without chemo, I would probably not be here today.

However, it is clearly time to understand in greater detail how it works and doesn't work. When it was first developed, it was a shot in the dark, it worked, so "yay!" It did not come out of specific research that went into the nitty-gritty of pathways, genes etc., in large part because the science wasn't there. It is not that long ago that they mapped the first genome. Now you can send your saliva off to any number of companies for all kinds of gene testing. Let's hope this research leads to more targeted and effective treatments.

Traveltext

As with Momine, my chemo worked from day one and it was a great relief to see my inflammation disappear and palpability of the tumor diminish so that surgery could proceed. However, the chemo didn't produce pathological complete response and I was glad that the surgery removed it and the radiation mopped things up. Also that the Tamoxifen is side-effect free and hopefully keeping recurrance at bay.

That was three years ago. I'm now I'm in a steady state, although obviously without a clue to my future, but at least I'm disease free.

ElaineTherese

I was diagnosed at Stage IIIA, with Grade 3 triple positive cancer. Neoadjuvant chemo wiped out my active cancer. I was relieved as this outcome allowed me to get lumpectomy rather than a mastectomy, thus allowing me to avoid reconstruction. Mice studies, etc., etc.. Whatever. I'm still here; I'm NED; what happens in a mouse doesn't necessarily happen in a human. I agree that future studies can only help solve the mystery of breast cancer. But, for those of us who have seen neoadjuvant chemo at work, we're more than a little skeptical of claims that such chemo is seeding future cancer.

Heidihill

secondchance and Momine, just shows we need to refine our tools, too much trial and error. LOL on no A, Momine, from the one with the big A. 

There is plenty of evidence that early stagers can show systemic disease, as in isolated tumor cells in the bone marrow or circulating ones in the blood without clinical metastasis, whether chemo -induced or not. We still have a lot to learn about how metastasis happens but we know neoadjuvant chemo can be helpful. It helped me wipe out my primary, bone, axillary and intramammary lesions. It may have allowed my immune cells to be more alert to cancer cells that may have flooded my system, dead or alive. Just like a vaccine. Who knows. I still had circulating tumor cells some years after active treatment, but so far nothing has been able to grow big enough to be seen on scans in 9 1/2 years.

Momine

Heidi, mine is rather ample as well, and at this point it is my sole remaining ass-et, so not messing with that.

That is so great that you have remained NED all these years.

Shellsatthebeach

I see this topic has made its way into two different threads. For people who have had cancer spread considerably to lymph nodes, as far as I'm concerned, you are damned if you do and damned if you don't do neoadjuvant chemo. I mean it has already spread to the lymph nodes and your chances of it spreading automatically goes way up compared to those who have no spread to lymph nodes. So, I take studies like this with a grain of salt when you have advanced cancer. No one knows (including this new study) if you are more likely to have cancer spread (once it reaches lymph nodes) if you chose to wait until after surgery or if you shrink them before surgery. They only talk about the tumor and not the lymph nodes. I think until we have such answers this kind of stuff can do more damage than good when people start second guessing what they should do when faced with an advanced cancer diagnosis. On the other hand, I do see where this could be more helpful for those who have a tumor that is not in advanced stages( I-IIIa ) to think twice or at least have a conversation with their Team before doing neoadjuvant chemo.

jenco60

Very interesting. I am a her2+ patient and I participated in a trial prior to surgery (lumpectomy). My cancer came back in 8 months with a vengeance. I am now scheduled for a left breast mastectomy and I am doing light chemo after and using new drugs. I fired my surgeon, my oncologist and my primary care physician. I hired my own after long research and interviewing. You have to take control of this mess. If your doctor will not discuss options with you RUN!!

The game here is "STAY ALIVE" you can always get new breasts or not. Kill the cancer but don't kill the patient in the process. The treatment should NEVER be worst than the disease.

Lillo57

Since neoadjuvant chemo seems to be the standard of care for most breast cancer, this report is pretty upsetting. Now something new to mull over and second-guess myself into a frenzy

Traveltext

Lillo, if you read all the post and the others here: https://community.breastcancer.org/forum/73/topics... you will find this study is not as bad for us neo-adjuvants as it seems. And, since we needed it to start with, ain't no use regretting it while ever we're doing OK.

Anonymous

I would argue that neoadjuvant therapy is not really a "standard of care". Oftentimes the tumor is removed and chemo/rads are then used to clean up any stray cells or messy borders.

SpecialK

Lillo - neoadjuvent is often considered standard of care for triple negatives like yourself, for IBC, for Her2+ tumors that meet the criteria for receipt of Perjeta, and for those who need to shrink a large tumor for clear margins or to achieve a lumpectomy eligible result. I believe all of those subtypes together still represent a minority of patients, and the rest are receiving adjuvant chemo based on OncotypeDx or Mammaprint testing results. I know that doesn't ease your fears about your individual situation - which I certainly sympathize with, but just wanted to clarify for others who may be reading.

Traveltext

One way doctors judge the effectiveness of neoadjuvant chemotherapy is to look at the tissue removed during surgery to see if any actively growing cancer cells are present. If no active cancer cells are present, doctors call it a "pathologic complete response" or pCR.

Several studies have shown an association between pCR to neoadjuvant chemotherapy for breast cancer and better disease-free survival, as well as better overall survival.

SOURCE: http://www.breastcancer.org/research-news/survival...

Lillo57

Travel, thanks for the link. I read the report more carefully and see it is far from conclusive. Also read some posts within that thread that pointed out the weaknesses in the study. Each time a new, not so reassuring finding is reported that relates to my situation, I of course, get riled, but I have realized that many are not written in stone. I've done everything I was supposed to do. I even added 6 months of xeloda after radiation. I have faith in my Drs and their guidance. The truth is, if you worry about everything you miss out on living.

Traveltext

"The truth is, if you worry about everything you miss out on living."

Spot on Lillo.

FireSally

This is horrible misinformation. Please back it up with clinical research literature. Somebody could go on a frenzy and get scared.
Thus quit the current treatment...

Roaming_Star

Here are some studies that I have found. Warning - some are pretty technical...

Chemotherapy and metastasis

Mechanisms of resistance of NAT chemotherapy

What are the benefits of NAT?

Treatment considerations for NAT

NAT treatment for breast cancer

NAT vrs Adjuvant

Neoadjuvant chemotherapy induces breast cancer metastasis through a TMEM-mediated mechanism

These will give you some things to chew on. In my situation NAT chemo was standard even though my tumour was small and had well defined margins, and my allred score for both ER and PR was 8. When first biopsied only 2 nodes positive then after NAT and surgery I had 6 nodes positive and a lot of cancer in my vascular tissue around my lymph nodes. There is no testing here in Canada to see if there is a response to NAT treatment. If I had access to PET/CT scan I would have known that yes NAT did shrink my primary tumour by less than a cm but it caused the cancer to grow in my lymphatic system. I can not begin to tell you how shocking and upsetting this has been. MO refuses to acknowledge that chemo was more harmful than good. I wish I would have read these articles before I had NAT I would have opted for surgery first.

Meow13

It is terrifying, I know 3 people diagnosed with cancer (breast, colon, gyn) and their remaining cancer cells were drug resistant and ballooned out of proportion killing them within months. This is a risk but they took it with the hope of surviving.

Clearly, we aren't anywhere close to truly good treatment. Right now most taking chemo might get more time living longer or even wiping it out totally. The problem is there is no way to know what will happen.

Roaming_Star

They only problem that in my situation I was not informed. My MO did not explain cancer, my diagnosis or treatment pros and cons. I only discovered this because I asked for a cooy of my pathology report and started digging. Then I asked for my original mammogram and ultrasound and biopsy reports. It is frightening that this is the best treatment I can get here in Canada.

Meow13

Roaming star is spot on. So many are terrified when diagnosed and hang on to every word their mo says. Many BCO members might not agree but doctors tend to spout standard of care and statistics. But it is up to each of us to listen and take in as much information as we can and make the decision ourselves. No one knows you like you.

I hated hearing all those nurses say throw every thing at it, this is war. Well you don't win a war without understanding the enemy no matter what type of ammunition you have. Throwing the kitchen sink at it doesn't mean it is the best thing to do.

Traveltext

Yes, as Meow says, we must learn to be our own health advocates. Medical professionals are busy people and we are not their only patients, so we have to accept that the more we learn about our treatment and the more questions we ask, the more informed will be our say in what treatment we should undergo.

Roaming_Star

Yes - we have educate ourselves, learn how to be assertive in our care even when it goes against what the stats say or these big studies because it is in our own best interest. These clinics are over burdened with patients and it seems like they are trying to do the fastest and easiest programed treatment getting patients in and out. Our bodies are unique and same with our cancer and so special attention and insight on to how best to treat ourselves is part of our journey. It is hard enough figuring this out when dealing with the cancer bomb that dropped into our life.