Question about metastatic breast cancer and tumors er/pr+ her2-

scaredashell07 · October 2016

I hope this is not insensitive at all. I am in the process of deciding between two opinions I received regarding my disganosis. I am leaning towards surgery and then chemo and tamoxifen how ever the top hospital in NY has said they do chemo first for any patient that has teaed positive for cancer in lymph node. I have one positive node that they see. I'm her2- so I don't benefitte from neo adjuvant for that reason. But that did said they would do chemo first . I noticed that many of the ladies on here are my same initialDiagnosis. Wondering if it's a coincidence or is there a higher risk for er/pr+ her2- tumors ????

Anyone know if certain types of tumors are more likely to metastisize???

KathyL624 · October 2016

I always thought they did chemo first if the tumor was very big but yours doesn't seem to be. Did the other hospital recommend surgery first? Can you get a new opinion fro me Sloane

gracie22 · October 2016

Hi, this forum is for people or the family of people who are already stage IV, so you should post elsewhere. As to your question, since you are ER/PR+, HER- and have a non-huge tumor, you should get an Oncotype test done to see if chemo is even indicated for you. The test is provided for ER/PR+ patients who have 3 or fewer positive lymph nodes and will indicate if chemo is likely to be helpful in preventing distant recurrence. Grade 1 ER/PR+ cancer often does not respond to chemo (tamoxifen and other antihormonals are often the most effective treatment), so it is very unwise to undertake all the risks of chemo without knowing more about your cancer and whether it would be of any benefit to you. I don't know why this test has not been offered to you--it's pretty standard care. Neo chemo has become more common in recent years; it is usually done because a tumor is very large, located in an area difficult to access or near chest wall, and/or aggressive (HER2+ in particular, and/or low or negative ER/PR). Hopefully chemo will shrink or eliminate the tumor and allow better surgical margins. Since it does not look as if this very basic info was communicated to you by your current docs, get a second opinion. Use a university affiliated cancer/NCI designated cancer center if possible, and stick to a breast cancer surgeon (not a general surgeon).

scaredashell07 · October 2016

thanks. I'm sorry. I just didn't know where to post and my questions and concern

scaredashell07 · October 2016

Kathy - it was Sloan who told me neo adjuvant

gracie22 · October 2016

Was the Oncotype done?

scaredashell07 · October 2016

no.

123JustMe · October 2016

scaredashell, I am so sorry you have been diagnosed with breast cancer but I am glad you found BCO! I think you may want to try posting in the just diagnosed forum: https://community.breastcancer.org/forum/145 Just diagnosed or here https://community.breastcancer.org/forum/145/topic... stage II sisters

My tumor was small and I had a lumpectomy followed by radiation and now anti hormonals. I think you will find other BCO members who can point you in the right direction. Don't forget you can always get a second opinion! You are not alone and in the beginning we were all scared as hell!

Take care

123JustMe · October 2016

bump

dlb823 · October 2016

Scared, I just took a quick peek at some of your other posts, and one of them mentions that you have multicentric disease, which, combined with a positive node, might be at least part of the reason MSK seems to be leaning towards chemo for you, even without the benefit of an Oncotype. I also just pulled up recent research that, just perusing the headline, seem to say that pre-adjuvant chemo might be a wiser choice with fewer risks than axillary node dissection (ALND). In other words... if I am understanding the limited information on this link, as I didn't try to get access to read the entire article, this is very forward thinking to save your level 1 & 2 nodes. But that said, it doesn't mean it's necessarily the only approach, as you've already learned.

http://www.uptodate.com/contents/neoadjuvant-thera...

As you've probably know by now, neoadjuvant chemo is most often done in two situations -- to shrink an extremely large tumor (as Gracie pointed out above), or with TNBC, which is especially aggressive. And what it sounds like is that perhaps observationally they've figured out that doing this saves women from needing ALND, which can lead to a lifetime risk of lymphedma.

If I was in your situation, I would probably do a couple of things. First, I would ask MSK to explain their rationale for recommending neoadjuvant chemo. They should be able to point to research (i.e. the article linked here or others) that is influencing their current thinking. Secondly, because even top docs always agree on what's best, I might get a third opinion from another NCI-designated cancer center. I think (not entirely sure) Johns Hopkins does long distance consults. Otherwise, NYU is known to be very good, and Mt. Sinai is another option if you're in the city.

Hope this helps some. I'm so sorry you're in the position you are. It's surreal enough to get a bc dx, but then to get conflicting opinions must be incredibly confusing. But my guess is that MSK most likely is on the leading edge of what's being done, and that you are fortunate to have access to them for tx. Hugs, Deanna

zarovka · October 2016

Initially, I had a similar diagnosis before they found mets in my liver. It's a long discussion, but I would have done neoadjuvant therapy. I am not one to over-treat cancer, but the neoadjuvant therapy will likely make things simpler and improve outcomes in the future.

MSK is very very good. They make their recommendations both on clinical trials and vast internal experience. It is great that you are there.

>Z<

scaredashell07 · October 2016

thanks. So i wa explained that because i had lymph node involvement this was standard tray meant to prevent Risk of possible lymphedema. Not becsuse i have now multi centric tumors. This discovery came after I had an MRI. I was told by two doctors that I should have surgery first.

Differences between surgery at Sloan versus surgery with Dr. Simmons at New York Presbyterian

Sloan will do it axillary dissection without die and they will take a large amount of lymph nodes and test it with a double Mesec to me they will not do a biopsy of the lymph nodes on the left side.

And my doctor said that the outcome is same either way as far as risk and survival. THey said it was a standard protocol now used for last ten years that lowers risk of lymphedema. And that because I am er/pr+that I would likely not be Cancer free. But perhaps my lympnode status would be better so that they don't have to do a axiallary dissection.

Somethings I also don't understand and makes me confused and concerned is that they will take out a large amount of lymph nodes to test them but don't use be dye to see if its spread beyond the sentinel node. If they give me chemo first and then I have to have the axial node dissection then I just spent 6 months waiting for surgery with no different outcome. And because my oncologist said it would not kill all the cancer I feel like I'm waiting unessicarily for surgery.

My second opionion was NY prespiterian. Not sure if they are certified cancer center.

Ugh. I hate all these decisions.

dlb823 · October 2016

scared, it might help to think of it this way... The bc in your breast is not nearly as concerning as bc in lymph nodes, which indicates your bc clearly knows how to travel. Having chemo first is a systemic vs. local tx. If you have surgery first, you will have to wait several weeks to heal from it before you can start chemo. (You cannot start chemo with an open wound.) So, in essence, having chemo first gets after the bc cells that have already left the breast and have the most logical potential to get beyond the lymph nodes and metastasize.

As far as hating the decision... I think one of the keys is to find a medical team you absolutely trust and let them guide you. Without that trust, you will always be second guessing their decisions, which really makes things miserable. This is another reason -- beyond simply a tie-breaker, so to speak -- why a 3rd opinion might be helpful -- to have one more team to evaluate and compare for comfort level and trust going forward.

gracie22 · October 2016

Scaredashell, This thread may be helpful--it's about response to neo and several strongly ER/PR+ people weighed in https://community.breastcancer.org/forum/67/topics/847977 One poster mentioned that although the chemo did not shrink her tumor much, that it cleared the nodes which helps me understand why neo was suggested. But since your doctors suspect only one node at this point, and the neo decision was said to be unrelated to the multifocal nature of the cancer, it seems kind of extreme(?) The common scenario I've read here for most ER/PR+ early stage, grade 1 or 2 patients is surgery (lumpectomy or mastectomy) with sentinel node biopsy (typically 1 to 3 nodes), followed by Oncotype test and then the chemo decision and antihormonal decision. But as stated by other posters, you have gone to top docs so there has to be a bit more to the neo chemo decision.

scaredashell07 · October 2016

thanks. I thought there was more to the decision and so I asked and was told nothing more than that this is done because of lymphadema risk. And that there's no difference for my case if I do neo or later. And I also am not being told I have choices. That's my concern.

Question about metastatic breast cancer and tumors er/pr+ her2-

Comments

Categories