Just diagnosed and too many questions
I received the results of my biopsy on Wednesday evening and it was TNBC, Grade 3 with a high Ki-67. That's all I could gather from it at this point. My doctor moved my appointment to see a surgeon up from next Wednesday to today, Friday. But as luck would have it the surgeon was called to emergency surgery this morning and had to cancel the appointment. My rescheduled appointment is for Tuesday late afternoon, about 15 hours before I would have seen the surgeon had they left my original appointment alone. Funny how these things work out.
I have so many questions but without knowing exactly what's going on it's hard to make sense of any of this. I've read that chemo is sometimes given before surgery in TNBC. But I don't have an oncologist nor do I have a referral. The only other doctor I'm scheduled to see is the surgeon. Shouldn't I be seeing an oncologist first? I don't know how all this works. Can anyone help?
Comments
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I met the oncologist first only because they called me first. She said one thing, then I met the surgeon who had a different opinion. Some women have chemo before surgery. I hope your team is all on one page. My MO is not familiar with my Surgeon or RO. I feel like she is out of the loop because she does not have a working relationship with the other two. Please write your questions down, and take someone with you there is a lot of information and you are only going to hear part of what they say. I took a notebook for my support group to make notes. I wanted to tape the conversation and they said no.
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Definitely see a medical oncologist before starting any treatment. That person, not the surgeon, is the expert on chemo. Yes, with grade 3 TNBC you will want to get the medical oncologist's opinion on whether to do chemo first. In some places they don't routinely send you to the medical oncologist or the radiation oncologist at the beginning, but you can ask for appointments anyway. Ideally, you have a team discuss your case together and come up with a coordinated plan. At some institutions (university hospitals, for example) all these people are under the same roof. The planning meeting is called tumor board and includes the above-mentioned doctors as well as the pathologist, radiologist (imaging), and perhaps social worker or psychologist and nurse-navigator.
Start collecting copies of everything as you go and take your notebook to all your appointments.
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What ShetlandPony said is exactly right, GrandmaSue. The only reason we go to a breast surgeon first, is because that is where the problem IS, at least we hope that is the only place it is. S/He may be the one that suggests it go to a tumor board, hopefully, you are going to a place like that, where all tests and people you would need to see, are almost automatically be added to your appointments. It's a long run, but as you can see from reading around here, it is doable. take care of you, and come back and let us know how you are faring.
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I saw a surgeon first who is part of an interdisciplinary team that recommended chemo first. I chose an oncologist that was not part of that team, but I went back to that surgeon for my mastectomy and I am now about to start radiation with a practice that is part of my surgeon's hospital. So it works differently at different centers.
I don't know how large your tumor is or if there was lymph involvement, but depending on the tumor size and staging you may do chemo or surgery first. Don't be afraid to ask questions or get a second opinion from a medicaloncologist.
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In answer to your question and working only from the biopsy report, the tumor is about 1.2 cm. The ultrasound report estimated it at 1.8 cm. How can they stage it if they don't so surgery to retrieve the lymph nodes to test?
Thanks also everyone for telling me your stories, especially about having chemo first before going into surgery. With my first appointment with a surgeon instead of an oncologist I'm afraid they will just want to do the surgery first, but if that isn't the best way to proceed, I want to know.
Again, I want to thank everyone who has taken the time to answer my questions. I hope all of you fare well on your journey to wellness. I feel like I've found a sisterhood here with so many strong women.
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Glad you feel that way, GrammaSue. I think there are many of us who feel the same way about this place! They wanted me to do chemo first, but for my own probably stupid reasons, I didn't want to, and so did not. now I question that, as maybe it could have saved some of my nodes. I did surgery first. My original tumor was smaller than yours, but as they put it, "it's got legs". It went crazy in my nodes. Part of that , I believe, is because of a kind of weird biopsy of the nodes, and so far ahead of my surgery. I think there was a 'spill' of cancerous cells out of them, because of it. I will never know the truth.
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GrammaSue - I insisted on meeting with an oncologist and a plastic surgeon before I did anything. Luckily my BS & MO interacted on the same tumor board so I had comprehensive coverage. BS also worked closely with PS. I did get a second opinion for both surgeons, but I knew my MO was a match right from the start. When it came to my recurrence, I had neo-adjuvant chemo. I still insisted on meeting with two different ROs before that surgery just to get their opinions in the mix.
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Hi, Gramma,
I was taking my husband to a hematologist/oncologist at the time I found my lump, so that oncologist looked at it and was concerned. He sent me for mammogram and then biopsy, then when it was determined to be malignant, I was sent to surgeon for her opinion. The oncologist said something about chemo first, and then lumpectomy, but not very long after determining it was TNBC, it was determined to do surgery first, and a mastectomy instead of lumpectomy. They also mentioned the aggressive nature of the tumor. I didn't ask many questions at the time, it was all overwhelming, and I was just operating from a state of fear. I have learned a lot since then, and have seen that most of the people here on these boards have chemo first. That is good because it tells the medical team how your body, and the tumor, react to the chemo. If it works well against the tumor, they may be able to do lumpectomy instead of mastectomy. For myself, the only thing that mattered was having clear margins, I far preferred having mastectomy if that was the best way to get it all out.
I wish you the very best with all your doctors, tests and results as you start out. Please remember we have all been through it and are sending good vibes and someone is always around to answer questions and offer support.
Mary
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GrammaSue asked: "How can they stage it if they don't so surgery to retrieve the lymph nodes to test?"
In an instance such as that, there are two kinds of staging--clinical and pathologic. Clinical staging is what is apparent from examining you, palpating surrounding lymph nodes, and reviewing any biopsy and imaging reports. This can be a tentative staging and is typically upgraded when the pathologist can review specimens from surgery and look at tissue with the naked eye and under a microscope. This is the pathologic staging.
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