Want to hear from you if....

dilloa

You have had a N+ diagnosis and have skipped chemotherapy.

Have been lurking and exchanging messages with some of you since Dec 2019; writing on behalf of my 58 yr old wife. December biopsy very promising for prognosis, grade 1 mucinous tumor, ER+ weak PR+, Her2 Negative. 2.1cm mass. Surgery not so optimistic, 4.3 cm mass, 1 of 2 nodes positive. Grade 2. Currently waiting for oncotypeDx results. There is some optimism that because of low KI-67 values (4%), the score may be low enough to possibly avoid chemo.

I would like to hear from anyone who has had a node positive pathology, took the oncotype test and scored higher than 18, or, didn't take the test at all, and opted to skip chemo.

Been doing a lot of reading, some articles as recent as the San Antonio breast conference, and it seems there are varying opinions about the benefit of chemo with patients having 1 to 3 nodes positive. So I don't know how strong the science really is to guide the decision of chemo vs the oncologist's "opinion" and practice beliefs. My wife will be meeting her oncologist next week for the first time, and we hear she is of the school of thought that node positive = chemo. Period. Maybe a low Oncotype score could convince her otherwise, but a "gray" score might not. My wife's biggest fear in this journey is chemo more than anything else. So rather that just listen to the oncologist who may have a biased approach, I would like to know if any of you have skipped this step (chemo) and how your recovery has progressed.

thank you

gb2115

Was the oncologist the one who ordered the Oncotype? It seems odd that they would even order it, if the assumption is that node positive = chemo (for that particular provider). I've heard some docs (the old school ones) are like that. My surgeon was practically getting me set up for a port placement for chemo, based on my one positive node. The oncologist got wind of that and put a halt to everything. She ordered Mammaprint for me (instead of Oncotype), and it showed little survival benefit from chemo, so we didn't pursue chemo. I went straight to radiation to zap the lymph node areas of concern. My doctor said she did the Mammaprint because it has great research and eliminates the gray area.

I have to admit, I was nervous to NOT get chemo, because of the positive node, but in hindsight, I'm sure my quality of life right now is much better having been able to not experience that. Time will tell though, if the cancer comes back.

dilloa

thanks gb2115 for your reply. You raise a good point.........in fact both the surgeon and radiation oncologist are pushing for the oncotype test in the hope of avoiding chemo. However the decision will ultimately come from the med onc whom we meet next week. She is known to be more aggressive in treatment strategy. Good luck. Wishing you the best health !!

Floral

I am 62 and had a positive node and Oncotype of 17. My MO advised hormonal therapy, no chemo. He would have done the chemo if I had requested it, but appeared to be making chemo seem as bad as possible. I had been hoping for no chemo, but then had a couple hours of extreme anxiety about opting out. I was afraid of making the decision for the wrong reasons. But really, BS, MO and Oncotype all supported it being more harm than good

nonomimi5

Hi Dillon - My Oncotype was also 17 but I did not have a positive node. Chemo was not suggested to me. Good luck to you and your wife.

ctmbsikia

Hi. Sorry for the recent diagnosis and surgery of your wife. First. You will want the results of the onco test along with the pathology you have before your appt and at that point I trust you have a 45 minute appt with the oncologist. Do not accept a 20 minute slot. It’s so much information your head could explode and you want to get a feel for this Dr. As a new patient they should have a sufficient appt booked.

I was diagnosed at 56 and am now 58. When you say node positive is that 1sentinel node of 2 tested? The pathology will tell you as it will also tell you a measurement of invasion on the positive node. I had a 0.3mm micromet. My tumor was 4 cm. Grade 2. onco was a 17. You want to know her er+ score. I was high with a pr+ her2- My tumor characteristic was mixed. All suggested chemo would only benefit me 1%. No chemo for me. Hormone therapy much better fit. Just because it’s a daily pill it can have effects on your quality of life

The Er weak you post worries me a bit. There are others more knowledgeable than me here and we need her absolute stats for better advice and support from our own experience and knowledge o this damn disease.

I’m sure I helped you zero, but I know it’s so much to take in, you want to know everything. Just know life will go on but different. Just like when we were young and thought I’m never going to get old or sick. Simple truth is—-it happens and nothing we do will change it. Just live it! Come back and let us know how it goes. I applaud you for coming here on behalf of your wife for the best information possible.

voraciousreader

ctm...O/P has posted elsewhere and the ER is STRONGLY positive but weakly PR positive. Perhaps our friend, dilloa, will tweek the O/P to be more accurate...

dilloa

thank you all for your replies. greatly appreciated. Seems I may have written my post unclearly. To be precise my wife's ER status was strong positive at 100% and her PR status was a weak positive at 4%. The way I wrote that in my post was not clear.

In fact from all the oncotypeDx "calculators" i have seen online, the PR status seems to be an important contributor to the overall score, with some algorithms assigning 7 points just for PR status....

Surgeon told us that with a N+ pathology, a score of less than 18 would have to be returned to consider skipping chemo. So if the algorithm is correct, there is a narrow band of optimism to land at a score under 18 if we are starting at 7.

voraciousreader

dil...yes. being weakly PR positive can drive up the OncotypeDX score. However, part of the score includes protective genes. Those genes are rarely mentioned. So, there is a good possibility that the score may be above 18. With that said...may I also suggest, either way, because of mucinous cancer's rarity, that the hospital's tumor board discuss the case.

Good luck and keep us posted AND thanks for the clarification!