Advice Please

ColleenS80

hello ladies,

I was diagnosed Friday with IDC. Tumor is grade 1, 1.3cm. Don’t know about hormone or gene results yet.

I’m meeting with a surgeon today. I was surprised the first apt wasn’t with an oncologist. Is it normal for the surgeon to come first? How will she make any decisions if more tests haven’t been done to determine if the cancer is in my lymph nodes (they tested but got a bad sample so we still don’t know) or if it’s in other places etc.? I’d love some feedback. Thank you!

Anonymous

Hi there, sorry you have to join us, but you'll find lots of good support and comfort here!

My surgeon did my lumpectomy and at that time the basic pathology was also done. The path reports were sent to the surgeon, who I met with the next day, and he reviewed the results (cursory, he wasnt an oncology surgeon, so whatever a surgeon says to you--mine shared some info that wasn't actually completely right, so remember the first report is often suspect) with me. Then he recommended an oncologist, had his office person send my records to the oncologist, and boom, I was out of the gate, running on the track of more specific dxes, tx ops, tests etc.

The complete tumor pathology takes longer than the initial "it is, or isn't cancer; this is the grade, this is the size, + nodes etc." I didn't find out about my ER/PR+ status and all the rest till I saw my own MO about 2 weeks after the lumpectomy and meet with the surgeon that did it.

Claire in AZ

ColleenS80

thanks for the input! My doctor seemed to think they would recommend mastectomy due to my age (38 yesterday). But if they’re going to do something so extreme, I’d really like to find out if there's anything to worry about in my other breast first. That way if they’re going to do it they can just do it all at once. I may be jumping ahead but I hate the idea of mastectomy surgery, THEN, oh wait there’s more gotta do a whole other surgery. Ugh

bluepearl

Is there such a thing as a grade 1 triple negative? Given a grade 1 I think you will do well. Other factors, of course, will come into it but it is a small tumour. Wishing you all the best markers!!!! (((HUGS))))

EastcoastTS

Colleen:

So sorry you are here but glad you found this site. It's wonderful for support, ETC.

I also met with the surgeon first, then they scheduled oncologist and radiation. If you seek a second opinion, they may schedule all at the same time but still you may meet with the surgeon first.

Hang in there. Ask any and all questions.

ColleenS80

thanks ladies!!

Tell me about second opinions. Should I get one from both surgeon and oncologist? Do I ask the first doctor or callon my own?

Anonymous

I had my husband calling for second opinions from MD Anderson. I did meet with an oncologist there after I met with the oncologist that my surgeon recommended. It turned out the protocol for tx was the same from both so I went with the doc that was more convenient. I also asked friends who worked at hospitals in the area their opinions on both surgeon and oncologist (the more local ones) and got feedback from them.

When I finally decided to go with BMX/recon (a year after chemo) I again went to MD Anderson and interviewed a surgeon. Turns out he had less experience than my local surgeon and Plastic surgeon, so I went with them. But I was glad I went to the trouble of a second opinion.

The hardest part it seemed was getting copies of my reports, pathologies etc, all on disk from my local hospital, and then mail them to MD Anderson. They needed them before they would see me.

Angel2

hi there, I'm new to this forum and would love some advice. I was diagnosed with Breast Cancer (Invasive Ductal Carcinoma) back in 2014 after a biopsy on some calcifications seen on Mamo. I had to have lumpectomy and a month radiation. When they done testament on what the took out it showed I have extensive LCIS and ADH. Today I had a Mamo and U/S and the Mamo picked up on a lump which I can feel. The ultra sound didn't. I was told the lump is a lipoma. Nothing to worry about! I have mixed feelings about this because of my previous diagnoses. Can anyone tell me whether I should be checked again for ADH? or would it have all been taken out with my lumpectomy back in 2014? I'm nervous this is something more. Should I consider a mastectomy. I'd love to hear other peoples views on this. Thank you❤️

ColleenS80

just saw the surgeon. Found out I’m hormone positive, but also HER2 positive.

She wants me to take herceptin (sp?) for 12 weeks I think before surgery. I asked about second opinions. She said she would be more than happy to send me to another doctor to get one. She also said after I asked though that this is pretty much the standard approach to treating in this case (my age, tumor type, HER2 positive).

I’m stumped. I don’t want to be irresponsible about getting a second opinion, but if it’s pretty much treated the same way across the board, I don’t know that it will matter.

Dare2bhappy

I think this is still on topic for second opinions. i was diagnosed with an IDC on 12/15/17 and got a second opinion from one of the other major medical facilities in my region. Because it was right before the holidays, I met with the surgeon from one group and then an oncologist from my second opinion group. On 1/3/18 I finally met with my second opinion surgeon, after this facility did their own extensive series of mammograms and ultrasounds. Her initial recommendation was same as first, lumpectomy with radiation but she(unlike first surgeon) said she could not spare the nipple as my cancer abutted it. However, they sent me for another stereotactic biopsy of another suspicious spot which turned out to be DCIS in the back of the breast, changing my diagnosis to multicentric breast cancer with a recommendation of a mastectomy. I am trying to decide to do one or both. Anyway, weird that I could have had a lumpectomy with radiation at a fine facility and still had a cancer waiting in back. So claireinaz, can you direct me to information about how to get a second (or third) opinion from MD Anderson. Colleen80, my nurse friends said any respectable doctor would be fine with second opinions, so I asked around about who my friends (and their friends) recommended. In my case, I called but then had records shared. Grade 1 is great, but I understand there is still so much unknown. I'm telling myself (and you) for once, don't be afraid to make waves, ask questions, and do whatever you need to do to be informed and make the best possible decision based on the data you have available (because there may not be one "right" answer). Good luck!

Anonymous

Colleen,

This thread (on bco) might help with your HER2+ questions.

https://community.breastcancer.org/forum/80

This link will help to navigate the second op at MD Anderson for the other poster that asked. (sorry can't access the original post right now!).

https://www.mdanderson.org/for-physicians/refer-a-...

Lula73

I’ll chime in on 2nd opinions- some breast surgeons only work with certain plastic surgeons. Knowing the type of recon you want to go with (implants or natural tissue) is important when it comes to this. Also do you prefer immediate recon at the time of MX or delayed. Or do you prefer going flat. Even if going flat you should make sure your breast surgeon will work with your plastic surgeon-the plastic surgeon will do the prettying up of the incisions the BS makes.

OCDAmy

Colleen, I was at a large NCI Cancer center and pleased with my team. I did not get a second opinion.

ColleenS80

thanks for the thoughts and advice ladies. I have a lot to think about

EastcoastTS

For those asking, I found getting a second opinion to be fairly easy to set up. I'd already had BS appt with local surgeon. Called MD Anderson -- they asked lots of questions. Gave them info about where scans, etc., were. I believe my nurse navigator at original facility that diagnosed helped get scans to MDA. Which was nice. I may have taken something with me as well. Cannot quite recall.

They set up all appts for me at one time. BS, PS, MO, radiation oncologist. Liked them so much that I went there for surgery.