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Newbie & scared

Breast Cancer | Last Active: Sep 27, 2023 | Replies (122)

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@auntieoakley

I would absolutely be looking for a second opinion if this were me. Mostly because It feels like she didn’t really offer you the information you needed to understand her recommendations.
You always have a right to have all of your questions answered, it also feels like there should be more discussion about the whole cured thing.
Do you have an idea of an out of network option for a second opinion?

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Replies to "I would absolutely be looking for a second opinion if this were me. Mostly because It..."

Yes, I have many options, hypothetically at least, because I am on traditional Medicare. I feel like my questions were answered but after a while it felt like I was arguing as though I wanted chemo and it was clear that she was not in favor of doing it, or that I wanted a PET scan (or something of that sort) and that I wasn't going to get that. Since my only known tumor has been removed, I'm not sure what a second opinion would do, other than to re-evaluate the potential risk-benefit question.

As a little background, I had not been feeling well in a number of areas prior to the diagnosis of the TNBC. Some of these are in the process of being worked up, others are just mysteries, some treated. I won't bore you with the details but when a number of things in my body haven't seemed normal to me, I can't help but wonder if some of them could be related.

Also, I was initially told at diagnosis (by a breast cancer nurse) that I would be starting with chemo. However, when I saw the oncologist and the surgeon in separate appointments, they both said to start with surgery. So I went along. At that point, I hadn't read very much. Now I am understanding that it is a common practice to do chemo first to get a sense of its effectiveness with the patient's particular variety of TNBC and that sometimes, not always, it offers some protection against recurrence and gives additional information about prognosis. I wasn't told this or given this option and so I'm feeling like I wasn't given the chance to get this possible protection. My tumor is gone now (thank God) so that gives them reason to say there is no reason to do a systemic treatment that might result in serious side effects. So I understand their reasoning. But I'm also feeling vulnerable without either the possible protection and/or a look at whether there could be metastasis in other parts of my body (unless other doctors decide to scan me piece by piece). I realize it is unlikely with a small tumor found early but it still doesn't feel right.

I also see that part of my reaction is purely psychological - i.e. to spend two months getting used to the idea of having cancer (and an aggressive one, at that) and then having to switch my thinking to, no, I don't have cancer anymore and I don't need to do anything but be watched. Thank you to anyone who has read all of this. I need to spill it out to people who will understand.