Neoadjuvant – yes, no, maybe?
So! My mom is a newly diagnosed IIIa bc patient. The doctors have been insistent that because she is in stage III, and there is node involvement, she should have neoadjuvant chemo before her opp. This has my mom frowning, because she has such an immune system, that even minor things get her all fired up, and there is no guarantee that she could have the surgery right after neo, since her stats could be all over the place.
When asked about pros and cons, the doctor said that the cons are:
- They have no idea if she could be operated safely and put under, if her overall state is bad after the chemo (and there are indications that it could be)
- They don’t know if the chemo is going to help, and if it doesn’t, things could get worse, before they find the right chemo combo
- There is no greater life expectancy if you have neoadjuvant therapy
- If the tumor gets smaller, and the chemo cleans out some nodes, they could be saved, but there is a risk of reoccurrence in those hotspots in the future.
My mother has an operable lump and node mass. They don’t have to shrink it in order to operate. And practically the only pro thing for this treatment is that they will know what chemo option is best for this particular cancer. Yes, it could get smaller, but it could also spread mets, if the treatment does not work. So, eh!
We were given the option – get neoadjuvant chemo, or not. But they highly recommend it, mind you! On the other hand, you can get operated on, and just go trough a few different chemo combinations afterwards, in order to be safe. So, my question is this:
How many of you had it? How did it work for you? What are your thoughts? Do you think we should try it out?
Hugz to all! And thnx in advance!
Comments
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I just refused chemo first because they werent really clear to me about why they wanted to do it first, and i was afraid of an infection, or feeling doubly messed up. i now know they were trying to shrink it 1st, or so they say. but i wanted surgury, because at that point, i wasnt sure i wanted to do chemo, and sometimes, i think they just want you to do what they want you to do. sorry about your mom, but good for you for trying to find out info for her!
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Oh! Well, thank you for you prompt answer.
The doctors have been pushing us toward neo, but it feels like they are twisting our hands. I am not against it, I just don’t see that particular tree in a forest of problems. ‘We get to know if it works!’ sounds like such an experiment, while surgery is a pretty solid stepping stone.
Utterly confused.
Btw, thank you for your kind thought, as well. I am happy that you had such great courage to put your foot down, and that it turned out well for you!
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I had neoadjuvant for a 5cm mass that shrunk to 4mm by time of surgery. Benefits are we know my chemo regimen works for me and any cells that could have metastasized were killed before doing damage. I could feel the mass shrink each week. When I started I had a big mass with suspicious cells in a lymph node so we were figuring stage 3. After surgery I was reclassified 1a. I was so glad I did neo and it is becoming more widely used in the US.
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I had two lumps, one 2.7cm and the other 2.4cm and a few involved nodes when I went on neo. After my A/C x 4 chemo, the lumps no longer showed on either the mammo or US, and the surgeon found that the smaller one had been totally destroyed. The larger one had just a crumb left of 3mm, and the margins and nodes were clear of cancer. I went on to radiation from there.
For me, neo worked extremely well. I am 64 years old.
Wishing the best of luck to you and your mom.
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I also am having neoadjuvant therapy first. Is your mom ER+ or PR+? Chemo has a better chance of working if she is. My mass has shrunk incredibly fast so I know the chemo is working. If her mass shrinks it might mean an easier (quicker?) surgery for her??
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Thank you, ladies! You answers have been helpful.
My primary concern is the overall state of organism after neo. As I said, my mother is infection prone, and has major reactions to anything in her system. That’s the thing that even gives doctors some pause. Also, I worry over the fact that the doctors said that margins could get positive if they remove less than they should after post neoadjuvan shrinkage.
There are just so many options, and you are kind of stuck at crossroads... :S
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I have a multifocal long thin tumor that was went from near chest wall to my areola. They recommended neoadjuvant chemo to shrink the tumor and ensure clean margins. The chemo (TCH) has worked extremely well with the areas on my skin actually healing up and the surgeon is no longer able to feel a mass! I will be having a mastectomy four weeks after my last chemo which will be September 17. My husband and I had researched doing chemo first and it is becoming more common. MDAnderson (big cancer center in Texas uses chemo as a standard of care certain types. My chemo has been pretty doable with the roughest time the 4-7 days after my infusion. I am also on the younger side (42) and was quite healthy otherwise. Chemo does make you very tired!
Best wishes with your decisions. There is not necessarily one "best" way!
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I had neo too. It was recommended by Georgetown and confirmed by 2nd opinion at Johns Hopkins, both great cancer centers. However, you are correct when you say that there isn't any statistical evidence that neo extends life expectancy. Theoretically, it should work better, but it has not been confirmed in studies. Like they said above, I was able to along with them monitor my own progress and feel my tumor shrink from an estimate of 7 cm to 1.8 cm at surgery. My 2 cm lymph node could not be felt by the time of surgery, but as you can see in my stats, it did not clear out all of my lymph nodes. I still ended up a IIIc at surgery. I am glad that I did neo because I know that it worked. Could it have worked better? Perhaps, but at least I know it did something. It gave them the opportunity to change drugs if they needed too and although they never said so, I imagine they could have called the whole thing off at any time and gone to surgery. The other thing I thought was good was that it was the worst part of treatment, and to quote my surgeon "everything else will be a cakewalk from here." Well, not really, but easier. The difference with me is that I did not have any other conditions like your mom's immune condition so I had no problem being ready for surgery 3-4 weeks after final chemo.
Good luck with your decision! -
@Grace - glad you are doing good!
As for hormone receptor status – we will know at the beginning of next week, when the results come in.
As I said, on one hand, you have shrinkage – but that can make the surgeon take out less than needed. On the other, gawd...we all want it to shrink, especially since there is node involvement!
@Oh3Girls - Glad you are doing well, too!
Neo is like…the standard in LABC in Europe now (and we live in Europe). I see that a lot of doctors in the US still skip neo, but it has been termed a success in general.
Everybody likes shrinkage, as I said, but it also has disadvantages. Then again, we would want to pick a treatment that does all it can – and not just stumble blindly in the dark waters of chemo after surgery, without knowing it is doing something good.
And yeah, my mom is kind of older (56. She had me later in life, and all). But she is fit. Only...not very good when her imune system is compromised.
Any of you ladies had neo that made no big difference?
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Hi there -
I'm so sorry for your mom's diagnosis...
I had neoadjuvant chemo, and I am a huge fan. The survival rates are about the same, it is true. BUT - from my own perspective, i think the big differences are
1) you get time to make surgical decisions about reconstruction or no reconstruction - if she chooses reconstruction, what approach... etc.
2) you get to know if the chemo works. doing chemo after surgery and following with a few combinations of chemo - well, the thing i don't like about that is the possibility she'd get chemo she wouldn't need. if you know what chemo is working, then you can keep chemo to a minimum, which is desirable because the short term and long term side effects are significant.
3) once you are using a chemo that is working, you get results, and that is good for one's mental health.
4) it's true that her immune system will be weakened by the chemo, but consider also that if she has surgery first, her healing might also be slowed by after-surgery chemo. so, i guess i feel like six to one and half a dozen to the other on this one... that said, there are things that can be done to help her immune system stay as strong as possible...
5) in regards to mets, if there are any cells wandering about, they'll get treated a bit sooner than if surgery goes first. this could be, in the end, preventing mets from taking root.
my story is that i had a complete pathological response to the chemo. i FELT my tumor shrinking and hardening into scar tissue. i KNEW that the chemo that was making me feel tired and cruddy and so on was doing its job. i also had those months to feel peace around my surgical plan, which was a double mastectomy with no reconstruction.
i hope this helps.
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There is a company in Canada that does testing on live tissue samples from cancer tumor where they literally apply different chemos to the live cancer cells to see which ones kill the cancer cells. I cannot remember the name of the company. But my onc says that is his preferred test. He takes a biopsy of live cancer cells from the tumor, sends it to Canada for testing, and meanwhile he does the mastectomy or lumpectomy. Then he gives chemo according to the report from Canada about which chemos worked best. So it's kind of the best of both worlds. Maybe someone here knows the name. Maybe your mom can ask for that test, then go ahead with surgery first. Just a thought.
Also, what is her tumor grade? If she's grade 3, neoadjuvant might be good because chemo works best on grade 3 (usually, not always.) If it's grade 1, surgery first is better because chemo is least effective on grade 1 (usually - not always). Grade 2 is a toss-up I think. I was a mix of grade 1 and grade 2. My onc said if I had done neoadjuvant my tumor would have looked like swiss cheese. For me, better to cut it all out asap.
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She is currently classified g2 OR g3, since the borders are not all that clear, but they are not sure. Hmmm…live cancer cells responding test sounds fabulous, but we live in Europe...I have no grasp on how sending tissue samples would work!
Back in 2009 I was having some liver enzyme problems, and we sent blood samples to the US, so gene mutations and syndrome expectancy could be determined. It was a humongous hassle. The paperwork was staggering, and I have no idea if that would have even been an option if my uncle was not a hepathologist in the child care field.
We have asked if there are tests for chemo response, but they said that it’s just not something they do. There are some who-knows-what-they-do tests in Germany, but those are in still on a trial basis. Frankly, this is the first time I have heard of this. Canada only, you say?
We, on this continent, have all the nice and free medical insurances with no-cost tests galore. I guess there had to be a downside in there somewhere – and lo and behold!
Still, thanks for the info. Will look in to it, although it is a long shot. :S -
I'll ask my onc on Monday for the name of the company.
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Oh, how sweet of you! You are such a dear. *hugz*
Canada is far away, but heck, any info is superb. Maybe they even have a lab branch somewhere closer, who knows.
They say all tumors look kind of here and there after neo chemo. That’s the part that scares me pretty much, since it makes cutting it out more difficult, and the probability of future hotspots rise. On the other hand…knowing what chemo is working is a blessing.
Drama all around.
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My onc also said that neoadjuvant is really for shrinking the tumor so that more of the breast can be saved during lumpectomy.
Personally I wanted it all cut off me asap.
There's another company called Caris Life Sciences that does biomarkers testing on dead tissue. Meaning you can send slides of your mom's tumor to them and they do various genetic testing and recommend the best chemos for your chemo. My onc prefers the test on the live cells (Canada) but if a patient comes to him with the tumor already out, then he has some of it sent to Caris Life Sciences. My Caris report suggested a different chemo for me than what I had. So now I am on that. My onc believes in treating stage III not like stage II but more like stage IV - prolonged chemo. I'm partway through a three year chemo regimen. I'm stage IIIC.
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I just...don't know. Mom wanted it all cut out, and the heck with it...duble mastectomy and onwards. They talk and talk about breast conservation – but really, if it's operable, and all, why rock the boat?
We actually changed doctors – the first one was really condesending, and would not take no for an answer when it came to neo chemo. As I said, I am not against it per se, but we wanted to hear about options.
Still, assurance over the chemo treatment would be fabulous, even if not a 100%. It's still better than nothing. Neo is all well and good, especially if you are inoperable, but it sounds like they are using you as a lab rat. Not fun, especilay when there is something malignant in you, and you live in suspense.
So you are now on the Caris report regime? You changed doctors as well?
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So sorry about your mom's diagnosis!
I didn't have neoadjuvant chemo (in my case, they weren't sure I'd even need chemo, based on the MRI, until after surgery) but I wish I had had it.
After cancer treatment, every ache and pain is ominous. All the little things that most people feel over time and don't think much about are frightening now becasue they could be a sign that the cancer had gone to stage IV. And, for me at least, I wish I knew for sure that the chemo worked well to shrink my tumor because it would give me a little more peace about these things. With postadjuvant chemo, you have statistics, but no real proof.
But, of course that's me and the way my mind works, and the best option for your mom will have a lot to do with her own health and ways of seeing things.
Wishing you and her the best!
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I have found a Bristol UK (Greek based )clinic (via a forum member! You people rock!) that does blood and tissue testing that tailors your chemo regime. It’s darn expensive, but I feel like it’s worth the money, and more hunky than just being a test subject for your own onc with a neo chemo regime
If you are still scared, and/or still on therapy, maybe you should check it out as well? Eh? It also find microscopic tumor cells circulating (or not) in the bloodstream.
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TectonicShift--I am interested in knowing more about your onc's approach. I am IIIC and was not treated like a IV. Leaves me wondering.
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AlyonA, yes I'm on the drugs that the Caris report suggested.
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i had neoadjuvant chemo. I have to say i did feel like a lab rat because i was stage 2a and not locally advanced (which i understand is pretty standard to do neo on)
my MO basically threw me into neo even though a lot of women my stage have surgery first. I have to say, now that it is all said and done im glad i had chemo first - I had a complete response (zero tumor at surgery). However - i did stress and stress and stress that the cancer was still in me for months. i was also told they would stop the chemo and go directly to surgery if the tumor did not respond, they told me this after 2 rounds - i dont know if i would have done it had they explained this at the beginning. The obsessing about whether it was spreading was there the entire time even though my tumor shrank with every treatment. It is a difficult decision for sure. I think how you mentally can handle having the tumor in you is a big factor noone tells you about -
can someone answer why all the big cancer centers are doing this (incl mine) if it does not show a survival advantage - is this because we dont have enough long term stats on neo and maybe eventually it will show an advantage
tectonicshift i would also like to hear about your treatment protocol that is longer than the standard due to your stage. I have never heard of this before - sounds interesting and very progressive in thinking
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Yes, tell us more!
I found the rgcc Europe lab, and to me – it sounds promising. They work with blood samples when you are testing after chemo/surgery and/or with patients that have/are suspecting metastatic disease. They work with tissu samples with pre-op patients. You can read trough it on this link...at the end of the pages, they give you a sheet of requirements and specifics.
http://www.rgcc-uk.com/chemosensitivity-testing/
http://www.rgcc-uk.com/circulating-tumour-cells/
On the other hand...your onc has to want to do this, since pathology shipping is something that needs to be done by doctors. I have talked to both our oncologist, and my uncle (working in England, so I wished he would check the clinic out) but they all scoffed, said they never hear of any of it, and that it’s weird. I almost ate my phone.
Gah!
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Stage is only part of what determines TX. The type (LCIS, DCIS, ILC, IDC or IBC) also are important as they have different prognosis. IBC is almost always TXd with neoadjuvant as it does not form a lump but forms as a 'nest' or bands that can not be safely gotten. The neoadjuvant is to try to get it to form a lump and shrink so that surgery has a chance of getting it. Some Drs will do 2 different neoadjuvant 'batches' before surgery. My Dr did 4 DDA/C neoadjuvant which did get good results and my surgeon was able to get good margins. I then did 12 weekly Taxol adjuvant before radiation. Worked good for me - I'm 4 yrs out and still NED (No Evidence of Disease)
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The company that tests difference chemos on live cancer cells from a cancer tumor is called Diatech http://www.diatech-oncology.com
Caris Life Sciences tests dead tumor tissue for about 40 different genes and uses the info to suggest the best chemos for that tumor.
There is also a company called Foundation in Boston. They test I think something like 80 genes. But my onc prefers Caris. I don't know why but I think it's because Foundations tests a lot of genes for which there is not a lot of research, so the testing is kind of pointless. You can't do anything with the info.
I am being treated at Arlington Cancer Center in Arlington, Texas. It was YATCOMW here on these boards who told me about Arlington Cancer Center. She went there too, about ten years ago.
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thanks for the info techtonicshift - that is very progressive of your onc to do this, and i did read back on your posts that you are continuing on a different chemo due to the results of this test. I guess this is the next step after neoadjuvant, they are coming way closer to personalized treatment. I will suggest this to a few people I know who were just diagnosed. Thanks!
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Well, in the end, because my mother had a history of bad imuno responses, they didn’t want to risk doing neoadj. before surgery. Which turned out to be a good thing, because when they did the bi-lateral mastectomy, after they opened her up, on the side where the prophylactic mastectomy was supposed to take place – they also found a cancerous lymph node. That node would have been completely missed otherwise, but now it’s out, and that is…a kind of plus
Our onco ordered the chemo sensitivity test in the end, as well, so mom is going to start targeted treatment as soon as she gets the drain out, and her stitches heal up a bit.
Still, thank you all for your informative responses!
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Rozem, sorry I did not see your request for info about my treatment. I'm glad you poked around in my older posts to see my story.
After I finished standard of care I was not comfortable that I had done enough. I really wanted herceptin. I mean really wanted it. I really believe they are close to proving it reduces recurrences in some her2 negative patients. (Her2 1+ and Her2 2+). I couldn't find anyone in the northeast who would give it to me. But I had a hunch if I came to Arlington Cancer center I might be able to get it. I was right, but my doc could only justify it because we had a separate path report on one of my lymph node tumors and it was her2 equivocal (borderline between pos and neg). My main breast tumor was Her2 negative unequivocally.
Meanwhile my new onc here ran a Caris report on my tumor, read the results, and suggested more chemo. Caris says it is unlikely I benefitted from A or C or T. Just don't have the right biomarkers. Bummer.
I'm a big advocate of getting a separate path report on a lymph node tumor. It is sometimes different from the main tumor. It is the biology of the stuff that travels out of the breast that really matters.
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