Found more cancer right AFTER lumpectomy

Anonymous

My sister had a lumpectomy a week ago and got a call about her pathology report yesterday, and err, today.

Her doctor is out of town until next week, so a technician called yesterday and said the preliminary finding was that everything was okay and she needed neither radiation or chemo. Her doctors have been dragging their feet so the only way she got any report is because she kept calling them.

As an aside, my sister spoke to an administrator who admitted they have had only one of two surgeons since July and that they are very backed up.

Then today, the technician called and said there is more cancer and that she has to have more surgery? Is this unusual or common? Why didn't they find it when they were doing surgery last week? What about all those preliminary tests?!?

I feel like they are jerking my sister around. It's bad enough when you're told you have cancer, then be told the surgery didn't remove all the cancer. Has anyone else been told a week after breast surgery that you need more surgery?

My sister is in Seattle, which we understand has some of the best cancer treatment centers in the country. Really?

Thank you for any help in understanding this matter.

gb2115

Do they mean that the surgical margins weren't sufficient? That's information that comes about a week after surgery, once the surgical pathology comes back. I know my surgeon warned me prior to my lumpectomy that if the margins weren't good (meaning cancer cells found too close to the edge where they cut), there would have to be a second surgery. I think they do the best they can, but since cells are microscopic sometimes it doesn't work out on the first try.

Wised

It sounds like they didn't get clear margins and need to do a reexcision.

KBeee

She had a right to talk with a doctor for explanation, not a tech. If this office is so backed up that it's not possible to do so, then now is the time to get out and get another opinion. This is unacceptable. Finding margins that are not clear isn't my issue here (though it is always frustrating to hear that); it is the under staffing and lack of clear communication by the doctor.

The surgeon also should never be telling a patient that they will not need chemotherapy. That is for the medical oncologist to determine. He/she is the expert there. I have seen many people with small, node negative tumors turn out to have a high oncotype and need chemo. She definitely deserves answers and explanations.

Anonymous

Thank you everyone for your input! I shared it with my sister and she's feeling less stressed, though not totally stress-free, which all we cancer patients understand.

Her doctor, who is still away, emailed her a letter of apology and sent her the Pathology report. The report, like mine, is way over out heads. The doctor said they will need to take more tissue, but won't need any localization.

Does anyone know what the statement about localization means?

buttonsmachine

If you and your sister are not already at one, get an opinion from an NCI designated cancer center.

Long story, but this kind of situation can get tricky. Not getting clear margins can happen, but I'm concerned that they aren't being thorough.

DiagnosisDisruption

My educated guess: Margins weren't clear. If her first lumpectomy required a wire localization, the second one won't have to have wire localization. I had to have a second surgery. My surgeon warned me about the slim chance. I think it was because she tried to take out as little as possible and there was still cancer within 1 millimeter of the removed part. We (the surgeon and I) knew there wasn't any more cancer, but we did it again three weeks later and the whole thing was benign.

I am also near Seattle, at SCCA Evergreen.

Anonymous

The only NCI-designated Cancer Center is the Seattle Cancer Care Alliance. I've read people in these forums complain about it and, for what they are worth, online reviews are not exactly stellar. Feel like a rock and a hard place.

Ingerp

I needed a re-excision after my first lumpectomy and read at the time that it’s very common—like 25% of the time. They are trying to minimize the amount of tissue they take out. This time I told my BS to go big. I really did. I figured taking a little more out was better than having to go back in (which, BTW, isn’t a big deal but delays the whole process about a month)

ksusan

I know many people who have had very positive experiences at SCCA. No place will be perfect, and online reviews tend to emphasize bad experiences. The best strategy is probably to meet with them yourself to evaluate whether it's a good fit.

JaBoo

I had to go for reexcission, they said there were too close margins, under 1mm. It happens fairly often here too.

Chemotherapy or not - that is somethimg to discuss with an oncologist, not the surgeon...

JaBoo

I had to go for reexcission, they said there were too close margins, under 1mm. It happens fairly often here too.

Chemotherapy or not - that is somethimg to discuss with an oncologist, not the surgeon...

Anonymous

JaBoo, Thank you! Very good advice, which I will share with my sister.

Summer2016

As KBeee said, My surgeon made the mistake of telling me I would not have to have Chemo! Also, had I not been on this forum reading experiences my oncologist would not have ordered an Oncotype test.

I had to ask him to order it. He told me that I was node negative and my tumor was small that he would if I insisted order the test. So, I insisted. And he was Shocked that Onco came back 26. 

He then said he would order Mamaprint as he was sure it would be Low Risk. Once again he was Shocked that it came back High Risk Luminal B.-------I then had 2 other opinions and went elsewhere for treatment.

Anonymous

Summer2016, that's kind of scary. Shows you have to look after your own treatment and check what the doctor says. I'm glad you switched!

Do you happen to know if an Oncotype test if beneficial for someone who is triple negative?

As buttonsmachine wrote, I'm concerned if they aren't being thorough. Besides the fiasco with the pathology report, on the day of her surgery, they told her to come to the hospital early morning. She had to wait about 12 hours before they actually took her in for surgery.

KBeee

oncotype is not used with triple negative because triple negative is almost always treated with Chemotherapy since hormonal therapy is not an option for systemic control. Oncotype, andvthe other tests are for ER+, HER2 - tumor

Anonymous

Thank you KBeee . That's what I suspected after trying to decifer the info a bit more.

Luckynumber47

viewfinder, do you know where your sister went for her surgery? I went to Swedish and they treated me very well. You can pm me and I'll give you the name of my dr.

Lucky

Anonymous

My sister had her second surgery yesterday. The surgeon said she was very please with what she saw (or is it, didn't see). She should have her pathology report in 4 days. Thanks again to everyone for sharing information and your support.