Am I being under-treated?
Newly diagnosed here. TNBC stage 1b grade 3. I met with my BS, MO, and RO for the fist time yesterday. Breast MRI shows a 1.5cm mass that hasn’t grown since mammo and US a month ago and no nodes involved. So the plan is:
-Surgery first (I am leaning towards SMX no recon)
-Chemo: 4 rounds of TC spread 3 weeks apart
-No radiation if surgery shows no nodes involved and size under 2cm
-No Keytruda or Xeloda post treatment, just regular imaging and hope for the best.
I went in expecting the very aggressive combination of chemo and immunotherapy (keynote 522) as the treatment plan so this all sounds like relatively light lifting to me. I am alternating between relief and extreme worry about recurrence given the aggressiveness of TN and my high grade. I asked MO why not neo-adjuvant chemo and she said she preferred to see the full extent of things on the post-surgery path report to make a final call on chemo (either 4 rounds of TC or dose dense AC if nodes are involved).
I know no one here is a doctor or my doctor and I am not asking for medical advice. I would simply really appreciate hearing from anyone who was given treatment options and had to choose (what informed your choice?), and any TNers out there who had just TC. Should I push for more aggressive treatment? What questions can I ask my docs? I have a 6 year old and I will be devastated to go through all this only for it to come back worse (I know it’s a crap shoot).
Thank you all so much for reading this far and for anything you would like to share. This community has been a lifeline in these dark days.
Comments
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Hi @amerli,
It's very common for those who are questioning their care to get a second (or even third or fourth) opinion - have you considered this option? Many people find doing so either gives them peace of mind as it confirms their original doctor's recommendations or opens up some other options to discuss the benefits and risks of one path vs. another. Read more about Getting a Second Opinion, including how to ask your doctor for one and how to make sense of what you find out.
We're sure others will be by soon to weigh in with their thoughts on TNBC and their treatment experiences.
We hope this helps!
—The Mods
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Hello @moderators thank you for weighing in. Thankfully, I am at a large university hospital with a dedicated breast cancer clinic. My MO just called on phone to say that she has shared my treatment plan with the rest of the team and they all agree on the proposed treatment plan. Would this be considered a second opinion?
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Hi @amerli, A confirmation of a treatment plan from a team at a large teaching hospital is a reassuring sign but technically is not a second opinion. Seeing or having an online consult with an oncologist at another institution would cover that.
It is very common to be given a proposed treatment plan with final decisions made after surgery. The postsurgical pathology is far more accurate than the biopsy pathology which is based on a small tumor sample and imaging. If there are any new findings in the surgical pathology, treatment can become more or less aggressive than first proposed.
If you still have doubts about the recommended treatment at this point you could seek a second opinion then. All the best.
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I echo your oncologist and Maggie15 about a solid tumor pathology report being deemed more accurate than a biopsy. As Maggie noted, your tumor size is well below the threshold where chemo before surgery is typically recommended.
My cyber friend of 35 years was diagnosed with TNBC about the same time in 2016 that I was. (Such a weird thing to have in common!) She had TC chemo and is doing great. Unless information has changed in the past decade, my medical oncologist said that the higher grade is surprisingly good news because very rapidly dividing cells are more vulnerable than chemo. Hopefully, someone will correct me if that is no longer a commonly held viewpoint. I, too, was Grade 3 or 9 out of 9 on the Nottingham scale with a Ki-67 of 90%.
My first tip is to keep a detailed journal. I've forgotten a lot of details from a decade ago, but will share whatever I can recall that you might find helpful.
Lyn
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@vlhvlh Thank you for shoring up my and my MO’s decision. It gives me some peace of mind going into surgery. I am very much a planner so believe it or not the first thing I did was to buy a dedicated planner and have been documenting everything in it. The thing I find most encouraging in your post is that it is possible to one day begin to forget some of this ordeal. I will hold on to that because right now I feel like I will never be free of this.
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Amerli, you may still wish to get a second opinion. The availability of virtual appointments makes that far easier and faster now. It's great that you have a planner ready to help you organize appointments, track symptoms, etc.
Lyn
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Hi @amerli— it’s great that your treatment plan was reviewed by the full breast cancer team. That kind of multidisciplinary review is common at large cancer centers and is definitely reassuring!
And like what @maggie15 said, and was echoed by @vlhvlh, this would be considered a team review, not a formal second opinion, which usually involves an independent doctor or care team outside the original group. IF a separate second opinion would give you more peace of mind, it’s reasonable to ask about that as well. If you feel comfortable with where they have landed, then you can skip until a later date. Sending you hugs!!
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