Micromets in node - chemo or no?
Hi All - I had a lumpectomy on 1cm ILC, pathology report showed 1/2 sentinel nodes removed had 1mm metastasis. Now waiting for oncotype score and to see two oncologists to get the treatment recs. Would be grateful to hear from anyone with “micrmets” in a node and what you decided on chemo and other treatment. Thank you
Comments
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Staceybee-
I had a positive node that was originally classified as macro, but second opinion at Dana Farber reclassified it as micro. (To be fair, a lot of stuff was reclassified every time someone new ran it; It’s really scary how subjective this all is! )
Anyway, they also had it tested for Oncotype- score was 14. My MO still wanted to do “chemo lite” because of my age and node involvement. I opted not to because I knew rads and Tamoxifen were going to give me the best odds and I wanted to get that rolling.
According to my Oncotype report, chemo actually gave me worse odds for 5 year survival! Glad the tailorx trial came out, makes me feel more secure in my decision.
Good luck!
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Thank you for sharing that. Did you have further surgery to take out more nodes? My surgeon is not recommending it at this point. What led you to have the node biopsy re-run? I have been trusting the pathology report up to now. Should I
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I had 2.1 mm in one node and didn't get chemo because of my mammaprint results. Different but similar to oncotype. I was 38 at the time too. They did radiation to all my lymph nodes though, as a result.
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Staceybee- I had 2 of 4 sentinel nodes with micromets. My MO ordered Oncotype and both him and my BS said grey area as far as chemo and Oncotype would give us more clarity. Asked them odds of further nodal involvement and both said odds slim to none. I knew I could not live with not knowing status of further nodes so I asked my BS to do axillary node dissection which he agreed to so I would have peace of mind. I had ALND two weeks after my BMX and they took out 14 additional nodes and 2 the 14 were fully positive. My MO who was shocked to say the least and said chemo regardless of Oncotype results as now I had 4 'involved' nodes even though two were micromets. He set me up for AC+T chemo and then we got Oncotype and it was an extremely low 3. So he was encouraged by this score and changed my chemo to four rounds of TC. He said one day hopefully there will be studies showing Oncotype relevance with 4 involved nodes but he still felt chemo was warranted. I was ok with it even though I know the hormone therapy is what my cancer would be most responsive too. This is just my experience and since the beginning my decisions have always been to throw everything I can at it. I am grateful to have had the axillary node dissection as if I didn't my Oncotype would've still been a 3 and I wouldn't have known about the two positive nodes still there. Because of the 3 there would've been no chemo and no radiation because of the BMX so I would've just been sent away with the cancer still there. I don't have any regrets.
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Thank you. Yes, mysurgeon made it sound that radiation on the lymph nodes is a given.
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Thank you for sharing. That is my fear that there are more positive nodes. I was surprised to learn after surgery that the surgeon only took out 2, it seems like most on this site list 3-5 or more. I asked why and she said those were the only two that lit up and she felt around very carefully to check for others. Still I wished they tested more.
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I did not have more nodes removed. That was one of the reasons I needed a second opinion, because my surgeon wasn’t sure what she wanted to do. Even at the tumor board, there was disagreement. Because of my age, tumor size, and node involvement, I didn’t fit into any of their “boxes”. Both my surgeon and my MO encouraged me to get a second opinion in Boston.
So all my imaging and slides went up to Dana Farber to a doc who specializes in breast cancer in young women. They have their own pathology go over the slides and imaging, that’s how it got reclassified.
If you are comfortable with your treatment plan and it seems clear cut, you probably won’t need a second opinion. If things get complicated, you may want to get one. I am still surprised how often the results changed.
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Here is an article about node status in ILC. Might ILC nodal metastases look less serious than they are because of the way ILC tends to spread?
https://foodforbreastcancer.com/news/lobular-breas...
To my mind, radiation can be used to treat the lymph nodes, and is probably less harmful than ALND as far as lymphedema risk. That seems to be the new way. But if the cancer has shown a propensity to spread, that is a separate problem, one for systemic treatment. If no chemo, then an aromatase inhibitor may have an advantage over tamoxifen, especially for ILC. University of Pittsburgh has some docs interested in ILC. You could try to get a second opinion from them.
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Hi, don't want to scare anyone, even though fear is just part of this journey, but I had only 1 micro met when they did my mx. So BS was happy, but sent me MO because I had 3 tumors in left breast. After all my initial testing and scans at onc office, it showed that mine didn't go through my nodes, but via the bloodstream and was already in several bones. So, my advice would be to do chemo to knock out any chance of trace cells. I found chemo was yucky with lots of SE's, but manageable. It's only for a few months and you can look back and say "I did it, its over". And maybe enjoy life with a little more peace of mind
Just my take on things, but we are all different and handle this road differently. And that's ok.
Take care,
Jenny
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Thank you - that is important to know and good advice
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Here is the update on where I stand after starting this thread a few weeks ago.
After learning I had a 1mm micromet in 1/2 sentinel nodes removed during a lumpectomy for 1.1cm ILC, a few weeks later I received oncotype score of 13.
My surgeon's office submitted my report request as 1 - 3 positive node category, so the report I got back said I have 10% chance of distant recurrence (MBC) in 5yrs if I am on tamoxifen for 5yrs AND 12% chance if I do chemo. + tamoxifen That I really do not understand -- it is saying I have a higher chance of MBC if I do chemo + tamoxifen. I would understand if it said no difference, but how does chemo increase the chance of MBC?
I then learned that if my surgeon had submitted the report as a micromet, they would have sent me the data for node negative as well. I had the report resubmitted as a micromet and received the negative node data which says that I have 9% chance of distant recurrence in 10yrs if I am on tamoxifen for 5 yrs AND 7%-ish chance if I do chemo + tamoxifen (they do not list the % for this, but I can see from the graph it looks a few %-points lower).
So the conundrum for a micromet and my oncotype of 13 is if you treat it as a positive node it tells you chemo hurts you in 5yrs, but if you treat it as node negative it tells you it helps you in 10yrs!
I saw two MOs - one at a major cancer center and one at the hospital where I had surgery, but she came from the major cancer center, so there may be some "group think" here. They both are recommending AI + OS (Lupron), which they say is more aggressive than tamoxifen and could shave down some additional risk. (I am 52 and still getting monthly periods, so need the OS to take an AI). They both said they will give me chemo if I want it and it is up to me, but they highlight all the risks and you can tell they are not advocating it. The MO at the cancer center said she presented my stats at a meeting with her colleagues and asked them to raise their hand if they would recommend chemo and no one did.
I have not decided yet which MO to go with. The one at the cancer center recommended also taking Zometa, the other did not mention anything about that. I started looking Zometa up and it does not seem to be a walk in the park. Lupron + AI + Zometa seems like a lot of potential for bad side effects. I am going to start a separate thread to ask for anyone's experience on Zometa.
In all, both MOs were surprised that I was so interested in potentially getting chemo. I am really of a mindset that I will do anything to improve my chances with this disease -- but really getting no support to do chemo given my stats. I asked if I should go to a a cancer center in a different city for a another opinion to get away from potential "group think" here. One MO suggested I try to see one of the top guys at Dana Farber in Boston. If anyone has a view on what their approach might be for a relatively low risk onco score and a micromet, I would be very appreciative to hear.
Sorry for the long post, but if anyone has any thoughts or recommendations for me, please let me know.
I also wanted to document this for anyone in the future that may end up with a micromet looking for information. This site and all on it have been so incredibly helpful! If anyone in the future has any questions for me, please do not hesitate to message me directly.
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Hi Stacey, my Oncotype was 12 and I had a micromets in one node. My report was for node negative. My oncologist didn’t even discuss chemo. He just called and said low Oncotype, no chemo. I had a mastectomy so my concern was whether or not I should get radiation. I went to 3 different doctors, including one in Seattle and they all recommended against rads. One Dr.said that micromets doesn’t even really count, even though the quidelines say they count as one node positive. Have you seen the TAILORx study? It found no benefit from chemo for your Oncotype and age.
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Thank you, that is helpful to know that your oncotype was close to mine and with a micromet node you received the no-chemo recommendation.
On the TAILORx study, interestingly no one is citing it in my appointments -- I think because it applies to node negative. In fact, I had a consult with a very experienced radiologist and she flatly said that all the things in the news with TAILORx do not apply to me. My oncotype was not back yet, but she said she thought it would be low since my Ki67 was low at 5%. Still, she said the MOs might still recommend "chemo-lite" for me, which really made me think hard about it and question them now that they are not recommending it.
Thank you again!
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Interesting. Maybe because your micromet is 1mm? Mine was 0.26mm if I remember correctly. I do know that everything I read indicated that micromets are very controversial. Some doctors think they are an issue and some do not. I think the rad doc said that about the TAILORx, because it specifically applies to intermediate scores. I do know that no doctor should assume someone’s Oncotype.
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So, it's been many years since I posted, but I will say I had 2 micromets and in 2011 they were considered negative. My Oncotype was a 22 and I was 47 with two young kids so I opted for T/C x 4. I also did RADS and in the end Tamoxifin and I just didn't get along. I am now 7 years out and so far so good.
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I had one micromet and an oncotype score of 12. My report said I had better percentages by not having chemo.I am 59, had lumpectmy, Radiation, and am on anastrozole.
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hi Staceybee, I was 50 when dx. Had bilateral mastectomy with bilateral sentinel node biopsy in 2010. Surgeon took two nodes from each side and pathology found micromets in one node. Oncologist recommended chemo and I agreed so we didn't do the oncotype test.
Onc said no radiation so I didn't have to decide about that.
Did six rounds of TC chemo (taxotere and Cytoxan), five years of tamoxifen (was in peri-menopause when dx), then switched to anastrozole (now in full menopause) and will do five years of that. Three down, two to go, and so far so good (knock on wood). Best wishes and gentle ((hugs)).
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I had 1 node of 8 with micromets. Onco score was 3 so no chemo but rads to breast and nodes.
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I know someone that had 1cm tumor ILC near chest wall, node negative, oncodx test score of 4. She did lumpectomy, savi radiation and I believe tamoxifen. Not quite 6 months later they discovered ILC cancer in bone, hip. She probably was already stage 4 at diagnosis. Oncodx can give you info on your chance of recurrence and maybe how well chemo will work it can't tell if your cancer has already spread.
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I know someone that had 1cm tumor ILC near chest wall, node negative, oncodx test score of 4. She did lumpectomy, savi radiation and I believe tamoxifen. Not quite 6 months later they discovered ILC cancer in bone, hip. She probably was already stage 4 at diagnosis. Oncodx can give you info on your chance of recurrence and maybe how well chemo will work it can't tell if your cancer has already spread.
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Hi Stacey,any updates on your treatment? Have you made a decision about chemo?
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Hi - thanks for checking in. Current plan is no chemo as no one would recommend it, but that is pending confirmation with Mammaprint which I expect by end of week. The MO said she will be surprised if the answer comes back different but sometimes it happens. So some suspense in getting the result. Will keep you posted
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Meow...very sad story about that someone you knew...Did she have a PET scan before starting treatment?
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Thanks, Stacey. I will keep fingers crossed for low mammaprint. We have fairly similar diagnoses. I was 52 with micromets in one sentinel, although they were in the 2nd one, first one was clear. My Oncotype was 12 and my grade was also 2. My tumor was larger and IDC, but still no chemo recommended. I wondered about this decision until the TAILORx study came out. Now I am more confident that chemo would not have made a difference. I am over 3 years out and besides aches and pains from Arimidex, I feel great. Happy 4th!
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I am currently also in suspence about my treatment, meeting with oncologist on July 10th.
See my dx below, the one positive node was with micromets. They were fairy confident no axilary dissection was necessary, because it was the first one (the one which lit up during tracking). the next in row were clear...
but I suppose my grade and her2 status scream full siege with chemo and targeted therapy and radiation...
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Yes, Jaboo, definitely chemo, etc. especially with your young age. I will say that it is good that you only have micromets so it sounds like it was caught early. You might want to check out the HER2 threads. It is so invaluable to “talk” to women that have already gone through the treatments to find out tips to make it through. I wish you well.
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I don't know if my friend had a PET scan before getting radiation. It was the radiologist she had when she was doing savi. She told me there was alot of pain and that radiologist did some sort of biopsy and pathologists determined it was the ilc cancer. I wonder how they do a bone biopsy. It must have been MRI or PET scan guided. Anyway she was in good spirits it was a single bone met and she was treated with radiation. I have not seen her since I retired from work. I really hope she is ok.
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To wrap up this thread that I started as I was considering whether I should undergo chemo for a 1mm "micromet" in 1 of 2 sentinel nodes removed, after getting a oncotype score of 13 and two MOs not recommending chemo, I got a Mammaprint score that also says Low Risk. The Mammaprint says that even in the 1 - 3 positive node category, the chemo would have a 1.3% benefit, which is not statistically significant. I want to be aggressive with treatment, but with all of this, I have no basis for chemo. Both tests cite 5yr and 10yr outcome statistics. When I asked the MO if chemo could have a longer term benefit, she said there is not good data to make that call.
So plan is radiation and then ovarian suppression + AI + Zometa.
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Sounds good, Stacey. I am glad the mammaprint helped you make your decision. Good luck with your treatment and thanks for updating us.
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Stacey, for what it's worth, I think you did the right homework, and I agree with your plan to use OS + AI.
For the benefit of those following this thread, Stacey and I had talked via PM about how using Mammaprint to determine luminal A vs. luminal B (more concerning) could help with the chemo question, given the concerns about the ILC micromet in the node and her premenopausal status. It's great that Mammaprint could be done, and great that it agreed with Oncotype. Peace of mind is worth a lot.
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