Stage III+ with a 1.5 cm tumor? I can't get my head around this
(Mild to Moderate Pity Party warning)
Background in Cliffs Notes format:
Abnormal mass on a mammo, biopsied Nov 1, dx Nov 6, 1.6 cm, ER+/PR+. HER2 originally equivocal 2+, but then FISH -ve. Grade 3. Submit for BRCA testing Nov 7, +ve BRCA2 result Nov 18, happens to be day before consult with the BS Nov 19. Initially don't like the BMX recommendation, but come to terms with it after about 48 hours of research and the consult with the Onc Nov 21. Meet with the PS Nov 26, none of the flap options will be practical so I elect TE's and schedule for Dec 12.
SLNB - they take 3 nodes, one is -ve, one is +ve so they do the ALND. BS swears they got clean margins, had to take a little more skin than expected but seemed clear of the chest wall. PS was able to place the tissue expanders but too tight for any fill. Surgery recovery mostly unremarkable so far, given all. (Yes, I'm very thankful for that, don't get me wrong.)
Get the path results Dec 19 and I have 11 +ve axillary nodes out of the 16 taken! From a tumor that is still 1.5 cm!!! Grade 3, yes, and Ki-67 was on the high side, 30%, but not crazy. Onc says they were all "shocked," and that aggressive chemo and ax node radiation will be a guarantee, other radiation possible.
They rushed to set up a CT and bone scan for the next day, Dec 20, and I don't have those results yet. Sounds like I could be IIIA, IIIC, or IV. I cannot get my mind around how a 1.5 cm tumor pulls off this kind of spread. Anyone familiar with a similar case?
In 6 weeks this went from looking like lumpectomy with rad, to BMX with no rad (plus TAH/BSO later), to hopefully node negative followed by Oncotype, to 1-3 node positive but still a chance to have Oncotype, to now aggressive chemo plus rad. I'm finding it so hard to follow the bouncing ball, esp since so many new results seem to have been bad news.
Any perspectives that may help? I'm mostly having trouble understanding how this thing seems to have fooled the doctors. Aren't most Stage III's a large tumor (or IBC) that were first treated with neoadjuvant therapy?
Thanks so much in advance ...
Comments
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I'm very sorry you are joining us, paloverde. But this board is a great resource and source of comfort and information. It saved my life when I was dx'd with 11 positive nodes two years ago. I also was supposed to have no nodes. The docs at Mass General told me they thought my body had contained the cancer to the breast because they did not see any evidence of positive nodes. Hah! The news went from bad to worse in the weeks following my two surgeries (first lumpectomy then mastectomy).
You are at the most difficult part, the beginning. Yes, grade 3 is generally pretty fast growing/spreading so it's totally possible that you have a tumor that isn't huge but still have a good number of nodes. The great thing is - surgery is over and those nodes are all OUT of your body! And the breast tumor too! So right now, as you stand, you could very well be completely cancer free!
The best advice I have for you right at the moment is this. Even though you are technically HER2 negative, you are Her2 2+ by IHC so your tumor expressed a good amout of Her2 protein. I think it's really important for you to get Herceptin if you can. The way you might be able to accomplish that is to join a big clinical trial that is going on right now testing Herceptin (aka Trastuzumab) in low Her2 patients (Her2 negative but really Her2 1+ and Her2 2+). It is a large phase III trial.
Here are the places where it is being offered in Louisville:
Norton Health Care Pavilion
The James Graham Brown Cancer Center at U. of Louisville
Baptist Health Louisville.
There are other places in Kentucky too. Please check the list of locations near the bottom of the trial page: http://clinicaltrials.gov/ct2/show/study/NCT01275...
The thing is, you have to join the trial before you start chemo. So if you are not already a patient at one of these places, you might have to switch to one of these places in order that you can get on the trial. Herceptin is a terrific drug and I have read everything I can find on this subject and I really believe in five or six years' time they will find out for sure that Herceptin reduces recurrences in Her2 1+ and Her2 2+ patients. So if you can get it now, you would be very smart to do so, in my opinion. (I am not a health care professional, just a stage IIIc BC patient who reads all the research I can get my hands on.)
If your current onc. is not at one of these three places, he/she will not offer you this trial. Cancer is a retail business. They will not willingly send you to another cancer center. You sort of have to make the calls yourself and advocate for yourself. If you ARE at one of these centers, great! Make sure you tell your onc. you want to go on the trial. They are all still recruiting. And Herceptin is a very easy drug to take. A tiny percentage of people with heart problems have bad side effects but they will test your heart first.
You DO NOT have to have chemo at the same place you had your surgery.
Please pm me if you have any questions. And again, welcome.
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Thanks TectonicShift. This is very interesting. Back before surgery my onc mentioned that if chemo was going to be in the picture "we have a clinical trial," but the conversation didn't go down that road at that point, and on further research I thought she was just talking about the RxPONDER trial (chemo-plus-hormone vs hormone-only for Oncotype <25 with 1-3 +ve nodes), on which she is an investigator.
Reading the link you provided to the low-HER2 trial (thanks!!! interesting), on which she is also an investigator, I now wonder if maybe she was talking about that one. I'll ask the next time we discuss this. But it looks like the trial arms are chemo-only or chemo-plus-Herceptin, not Herceptin only, am I reading correctly? So a patient would be taking on 33-39 additional weeks of adjuvant therapy - it's sequential, correct, I thought you couldn't mix herceptin and anthracyclines? - after the aggressive chemo their onc would have recommended anyway? (We were on the phone and rushed, so all I heard was "5 months of chemotherapy," which according to the math sounds like four 3-week cycles or six dose-dense 2-week cycles of AC plus 12 weeks of T.) That might be doable if Herceptin is an easy drug to take, as you described, but is a highly significant advantage expected?
Thanks again for the information!
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Hiya, paloverde. welcome to the party! not. sorry you have to be here, but glad you found bco. my tumor itself was just a little larger than yours, but went to the nodes where it went crazy, invasion into tissue, and burst nodes. ((Shudder)) gross, but the nodes did their jobs, poor things, and as far as testing i am still stage lllc. but so now is when they throw all the big guns at you, to arrest it completely if possible, which my bs said i was still curable. do i believe her, not really, altho i would like to.
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Hi again. Yes, one of the arms of the trial, you get adriamycin first and then Herceptin. The other arm I think it's a different combo of drugs where you start Herceptin right away. There are 4 arms, each different. I haven't studied the trial sheet too closely because I am already on Herceptin. But the bits and pieces of data I have seen on low Her2 (Her2 negative) patients who have gotten Herceptin seem to indicate they do benefit, even though they are technically Her2 negative. I really wish all my stage III sisters and brothers could get Herceptin right now.
Yes, if you go on that arm you will be on it for probably one year. But I promise it is not a big deal. Does not have any side effects - at least in me it doesn't - as long as your heart is healthy.
And to both you and kathec, I'm sure you already know this but just to reiterate -- the good news is grade 3 cancer is the most susceptible to death by chemo. The patients who have pathologic complete response to neoadjuvant chemo - meaning the tumor disappears completely - are most likely to be grade 3.
I am a mix of grade 1 and grade 2. No way did chemo do its job on me. (I mean maybe, but not likely, because chemo kills fast growing cells.) I am relying mostly on the A.I.s and tamoxifen. And Herceptin. And baby aspirin.
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TectonicShift, do you mind if I ask about the timing and circumstances of your two different chemo regimens? Was one neo adjuvant, or were they both adjuvant and the onc didn't think the first one was having a sufficient effect? Also, I am not familiar with Mitomycin. Thanks.
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Similar DX here. Initially thought tumor was 1.6cm. With one node. Final path 2.5cm. 9/9 nodes, grade 3, triple positive. Unknown on BRCA, may need ooph if positive, not checking until TX is done. I was surgery first, then TX. Thought it was earlier stage, nothing on last mammo. ILC can be missed, but MO does not think it was missed, just that aggressive.
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No problem. I'm going to PM you because my situation is a little complicated.
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All,
I've appreciated your support and insights, just a quick update ... you definitely know
your perspectives have changed when the hubs takes you to lunch at a French
restaurant to celebrate the situation going from potentially horrible to plain
old bad (but with a plan).I called to check on the results of my CT and bone scans from Friday.
Heard back from the onc in 15 minutes that "your scans looked pretty good
..." bone scan was totally clean, nothing funky looking in nodes
near sternum or clavicle (she didn't mention the chest wall, but the BS had
said that was clear), other organs looked fine except for the occasional
non-onco nitpick or minor "indeterminate" spot here and there (after
all, I didn't ask to have all of my organs picked through with a fine-toothed
comb on less than 24 hours notice, so didn't have a chance to clean up for
company first), but nothing that would change the treatment plan. So
Stage III - sounds like a relatively clean Stage III if there is such a thing -
chemo will be the AC-T as expected, rads should be ax only.This happened to fall between the 2D echo test that said my cardio ejection
fractions are in the high 60's (cool!) and the PS visit where I got 2 of 4
drains out in exchange for 60 cc's to each TE. We had been wondering when
we’d finally get a break, so overall it was a good morning! And enjoyed our lunch. Better enjoy my
food now while I can, right???Best Christmas wishes …
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Happy you were able to celebrate all the "wins!" Those scan results are a b%#^+ to wait for, and to get good news is well worth savoring!
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Paloverde, I can SO relate! I went in for a lumpectomy with a 0.8 cm lump on ultrasound and came out with a 1.2 cm lump, but positive nodes. It was a very nasty shock to mentally go from Stage I to Stage III in the course of an afternoon.
GREAT NEWS for your latest scans! YAY! My son is a radiology resident and he calls those nitpicks and indeterminate spots, "incidentalomas."
I did TAC chemo (taxotere, adriamycin, cytoxan) and it was 100% doable. I worked full-time throughout, taking off a couple of days with each round.
You have a wonderful, charge-in-there attitude. You'll do great!
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paloverde- I haven't read all the responses (only a day left until Christmas for me) but I had a 1.6cm lump that ended up going to a bunch of lymph nodes. I even had extra capsular extension (cancer spilling out of the nodes!). Just letting you know that it has been almost 8 years since I was diagnosed and so far so good. It is all scary at first but it gets better-I never believed it when people told me that but it really is true.
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Great, everyone! So encouraging, thanks. "Incidentalomas," that is priceless.
Right now I'm having trouble envisioning maintaining a "wonderful, charge-in-there attitude," but now that it's been voiced here I'll commit to doing my very best!
A great Christmas to all.
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Oh, paloverde, this marathon of slogging through treatment for breast cancer is both uphill and downhill. There will be days when you'll feel like "OK, I can do this," and days when you want to just crawl into bed and sob. Been there, done that!
Please don't feel like you have to "maintain" anything. For me, the marathon was a little easier when I exercised and tried to keep my thoughts disciplined. When I allow myself to wallow in a dark place, mentally, it's much tougher.
Blessings and Merry Christmas as you embark on your own marathon!
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thanks, tectonicshift. i didnt know that about grade 3 being more susceptible to chemo. is that because it is more poorly differentiated? or just is a spaz! they did want me to do neoadjuvant treatment, but i did not want to, cause they didnt really tell me why they wanted to do it that way. when i was diagnosed, i knew nothing at all about breast cancer. so when i had questions for my team, they had an atitude of anger and loathing for my questions and they still do. i mostly hate them. i do like my mo, and i didnt at first. and i did like my surgeon, and i dont anymore, and i have very good reasons for that. so, i definatelly felt rushed to make decisions without enough information. that could not possibly be informed consent, if i was never informed. i just feel sometimes that once you are diagnosed, the doctors somehow feel like they own my ass, and it just pis$e$ me off royally. i know i havent been the most tractable person for them, but they havent been paragons of sweetness either. i have read so many books on breast cancer now, and tons of pubmed articles and abstracts and studies, and read widely here on bco, and am way MORE informed, but still have lots to learn. but i do feel as if i were rushed. and now i do not recognize the geography of my breasts anymore, but there is a new bruise and swelling beside my scar, and afraid there is a recurrance, alredy.
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Hi there,
Sorry to be late joining your discussion, but I am glad you found us. Here's what I tell new people---finding out you have BC is like having to learn a new language, one you didn't want to learn, and without a teacher! It's very confusing at first, but after a while all the lingo and such starts to fall in to place.
You will definitely get a ton of info here and of course ask away! My original General surgeon suggested chemo first but I was so freaked out by that I asked for a second opinion at Johns Hopkins and they said, no let's do the surgery then chemo, then radiation. In hind site I wish I had gone the first route, as I had to wait 7 weeks to get surgery done at JH and my primary tumor was over 6.5cm, 13/15+ nodes! Sheesh. I don't know though if it would have made any difference or not. I do know I am ALIVE over 4 years later though. I've had a lot of ups and downs, but these ladies helped keep me sane throughout the process. I'm glad to hear you had a clean scan though. That is great news!
Take care,
Sharon
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Thanks pupfoster. Nice to know that places like JH aren't necessarily all-knowing either.
Like you, I would have completely freaked out about the idea of chemo first - I was dead set on avoiding it - and no one would have recommended it in my case, since the tumor was so small. But in hindsight, it might have cleaned up some of the nodes in advance - maybe eliminated the need for ALND and adjuvant rads? - AND we'd have been able to directly measure whether the chemo was effective. No one has adequately explained to me yet how they measure whether the adjuvant chemo is being effective, once the tumor and the dirty nodes are out and there's no active lesions for them to look at. Do you know? (I'll ask my MO on Thursday) I guess with my red-hot Grade 3 cells the odds are better.
Also, with less time pressure for surgery I might have had more time to make decisions about the "immediate" reconstruction (anything but immediate, with the TE-implant path) or put it off for awhile.
Who knows - if I play coulda/shoulda I'll make myself crazy. Thanks for all your encouragement.
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paloverde, I am a small tumor, large node invasion, only Lobular....I have been trying to read back on this thread...great to have all this knowledge, I was 1/2 way through chemo when I found BCO...I knew nothing when dx, just trusted the surgeon & held on for the ride...good luck with chemo, it's the bad & the ugly ( no good ) but we all muster through it, then on to rads...I have had 4 zaps...keep posting, and maybe find the chemo group that starts when you will...
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Paloverde, from my understanding, there is no test, scan, screen, to measure the effectiveness of our treatment. They cut the tumor out, and the hunk of tissue where are nodes were. So, the chemo hopefully gets any microscopic cancer cells that can NOT be seen on a CT or PET scan....happy for you that your scans are clean, that was terrifying waiting, huh? Many of the ladies who post here are way more knowledgable than I...but it makes sense.....please let us know what your MO says....
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paloverde, not exactly the same situation, but I had a small tumor with one pos node, a resident at the hospital called it aggressive,I freaked, my onc disagreed.
(And he is a well respected research guy.)
He says that cancer cells like to move around, that's it, and that biology matters much more than staging.
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My chemo was neo-adjuvant on the recommendation of my MO and surgeon. What it did was shrink my two tumors (totaling 5cm), to just a single 3mm bit -- less than the size of half a greenpea. My LX afterwards was quite easy and totally unnoticeable with such a small crumb to remove. The margins were wide and clear. The SNB showed there was no longer cancer in the nodes -- actually, there had been several nodes involved originally rather than just the big one that was felt by the onc. My doctors felt confident that the chemo had done its job and also clobbered any other cancer cells which may have been floating around in my body just as it had clobbered the two breast tumors and the nodes. I then went on to request radiation just to make sure there weren't any strays locally still in my breast.
I had a PET scan last month, and very different from my first one in Oct 2012, this one was clear of cancer. Hope it will last.
Had I done it the other way, with adjuvant chemo instead, I would have had to have a MX or settle for a LX and a very deformed breast (I am not big-breasted). I am a diabetic and as such, it is well known that we don't heal wounds very easily in general; so certainly a MX or BMX would not be a first choice -- and certainly not reconstruction either. It wasn't an issue of vanity; it was more an issue of potential healing problems. Also ripping out a bunch of lymph nodes could certainly cause future permanent complications, such as lymphedema. And then, as has been brought up, there would be no way of knowing if the chemo actually worked! This board has many threads titled -- (your choice of: taxol, taxotere , A/C) -- "didn't shrink my tumor." What if this happened during adjuvant rather than neoadjuvant chemo? How would the doctors know, except waiting to see if the cancer shows up somewhere else in the future?
But doctors have their own protocol which they feel works for them. Hopefully, theirs will work for you. Good luck! The choices can drive you crazy.
Carol
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I don't see my MO until tomorrow, but here's what my BS said yesterday. He said some tumors are just "spreaders" by their nature, even more so than the average tumor, and this one could have been infiltrating lymph nodes back when it was just getting large enough to detect. Which meant there's a chance I might still have been Stage III even if we found it 6 months earlier. So for me that allowed another step away from "how could this happen" and in the more favorable direction of "let's go treat it."
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