Scared and Confused
Hi! I'm sorry to keep posting, I'm just so confused and scared about my diagnosis. I spend most of my time googling which is making things worse and it's because my surgeon and RO seem to be on the same page but my oncologist says something different so I don't understand what is going on.
I was diagnosed with ER positive 7/8 and PR positive 4/8 Her 2 negative. 2.4cm and 0.3 micrometastasis in the sentinal lymphnode.
The surgeon said he considered it node negative as it was a "speck of dust" and not to worry about it because we caught it just in time and it wont affect my prognosis. The RO said the same thing. But the oncologist is saying I have regional breast cancer because of it and says I'm stage 2B but the surgeon says 2A. Do I have regional breast cancer or local breast cancer?
Also, the surgeon said this was slow growing and I probably had it for 2 years and it would take approximately 2 years to go to distant organs if left untreated without surgery. I have grade 2 and mitotic rate of 1. I'm on ovarian suppression and an AI. My oncologist isn't too pleasant to me after declining chemo when my oncotype score came back high risk. I just dont understand how this went from slow growing to super aggressive according to my oncologist. Is the oncotype test really the be all end all to my prognosis? I'm scared I'm sitting here with cancer spreading like wildfire and spending all my time searching for answers because I'm so confused. :(
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Hi @jenna1220x, There are two types of staging, anatomic (TMN) and prognostic which takes grade and hormone receptors into account. If you plug your stats into calculators your anatomic stage is 2B and your prognostic stage is 1B. Since the 2B anatomic classification includes someone like you with a tumor size of 2.4 cm and one node with micromets as well as a person with a 4.9 cm tumor and 3 positive nodes your surgeon and RO are probably saying stage 2A since you are barely node positive and have favorable tumor biology. However, the numbers just indicate how likely it is you might have a recurrence and can’t predict what will happen to you since statistics deal with large populations rather than individuals. If the #1 ranked team plays the #4 ranked team there is no guarantee the #1 ranked team will win.
Are you regretting that you didn’t do the chemo even though you had a valid reason not to (mitotic rate 1)? If so go back to your MO and discuss whether it is still an option or if he has something else to recommend in addition to the AIs. Are you looking for reassurance that you will never have a recurrence? Unfortunately that can’t be given since someone who is stage 1A with a low Oncotype could become stage 4 even though it happens infrequently. Do you need help dealing with the uncertainties any cancer diagnosis brings? Seek counseling to help you move forward with your life. Googling and stressing about probabilities cannot predict what will happen to you and are keeping you stuck in a rut. I wish there were a magic wand I could wave for you and everybody else on this site but that’s not the way life works. Hugs for you.
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@maggie15 Thank you so much as always for replying. Thank you for taking the time to explain it to me. I truly appreciate it.
I don't regret not doing the chemo. I felt like I made the right choice at the time with the information I had. If I had a higher mitotic rate or more involved lymph nodes I would have done chemo.
I understand nobody diagnosed with breast cancer is guaranteed not to have a reccurence. I'm not looking for reassurance about that. I guess it's just really difficult when the people on my care team should be on the same page and give me similar information about my diagnosis but instead I'm given conflicting information. So, I feel like I'm left to seek out information on my own to figure out what is accurate. For example, if all 3 people on my care team are saying I have a poor prognosis, than I can accept that, and wouldn't be confused. But if the RO is positive and telling me to live my life and then the following week the MO is making it sound like I have a horrible prognosis, I'm left sitting here scared not knowing whats accurate or whats going on. Before I had the oncotype test, the MO said "this is treatable and curable." Once the oncotype test came back, it's basically get my affairs in order. I don't understand how someone's life can be determined by one number. The MO says it's aggressive based on the oncotype score. When I ask him what's making mine so aggressive just so I can understand it better, he just says the tumor biology based on the score. But I don't understand how something is so aggressive but shows a low mitotic rate on the biopsy and pathology report. Someone else on this forum said the mitotic rate could be wrong because someone is just counting it in the lab. But i don't understand how it could be counted wrong twice. I guess all I'm looking for is to understand my diagnosis. You've helped me understand things more than my own doctor, so thank you for that. Hugs to you too.
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Hi @jenna1220x, Your life expectancy is not determined by your Oncotype score. It measures 21 genetic alterations, 5 of them controls and 16 that have been statistically shown to predict the risk of a recurrence. Given your anatomic characteristics it was surprising that some of those seem to have been higher than average but this result is definitely possible. Those markers do not include mitotic rate so the disparity there is not an anomaly. There are other things that can influence the possibility of recurrence that are not accounted for in any statistical classification including LVI, close margins and types of bc that evade imaging. Like other professionals doctors don't always agree; get a second opinion from another oncologist if that would make you feel better.
Doctors cannot determine the cause of or cure everything that goes wrong with the human body and googling is not going to give you any answers. You have chosen a course of treatment that you seem satisfied with so don't waste your time looking for predictions that don't exist. Instead focus on daily life with your daughter and supportive family. When I read posts on this site from people whose partners have left them post diagnosis, who don't have sick days to take for treatment or have health insurance which will not cover the medicines they need it reminds me that I am luckier than many in spite of some serious treatment SEs I have to live with. Life is so much better if you can move on from the fear and the regret.
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@maggie15 Thank you so much for your explanation. And thank you so much for your positive perspective and advice. Sometimes all it takes is just one person to help change someone's thinking, so thank you. I will try to start spending more time with my family rather than being crippled by thoughts of what could happen/googling. I appreciate you <3
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