Forming a treatment team?

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Northernflower
Northernflower Member Posts: 10
edited November 2015 in Just Diagnosed

Hi, I was diagnosed with ILC 2 weeks ago. As I understand it, the prognosis is as good as it can be (tumor is just over 1 cm, ER/PR positive, HER-2 negative, and no apparent lymph node involvement). I've been alternating between sheer terror and moments of relative calm. Mostly the terror thing. I can usually remain optimistic but am really struggling with this. I've been more or less unable to find the bright side, even though people keep telling me all the news so far is good. Working on it, but it is hard. Thank God I had a Xanax prescription, at least I've been able to get some sleep!

Anyway, I'm wondering if there are "rules" for forming a treatment team. I have talked with two surgeons, who both told me lumpectomy with radiation would be an option. Surgeon A was okay, but I really liked Surgeon B. After talking with her, I felt calmer and more myself than I had since I was diagnosed...which is worth a lot. I would like to go with her for the surgery. What I'm wondering about is, does that mean I have to use the radiologists and medical oncologists who are associated with her, or could I use the ones at the Surgeon A's practice?

The other people at Surgeon A's come very highly recommended to me—I know a number of people who were treated there, but none who were treated at Surgeon B's—and after all, I'm going to be seeing the radiologist and oncologist a lot more than the surgeon. (Surgeon A is highly recommended as well, but I would be much more comfortable with Surgeon B working on me.) Plus, I know the oncologists at Surgeon A's specialize in breast cancer, which is also worth a lot to me.

A friend recommended that I talk to a couple of medical oncologists after the complete pathology report comes back, which would seem to imply that I can go with whoever I want, but I didn't think to ask her. My husband seems to think I have to stick with all one practice.

So what's the deal?

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2015

    You don't have to stick with one practice if you don't want to. My only concern would be insurance. My insurance plan covers one local oncology practice but not the one based at my local regional hospital. That was fine with me. The covered oncology practice has four oncologists, and I could have gone to any one of them.

    You're lucky you found a surgeon you feel comfortable with. That's very important. Best wishes!

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  • Northernflower
    Northernflower Member Posts: 10
    edited November 2015

    Thank you Elaine, that's great to hear! My insurance does have both practices.

    Has anyone got feedback on how this kind of arrangement has worked out for them?

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  • Trvler
    Trvler Member Posts: 3,159
    edited November 2015

    You absolutely don't have to use all providers from one facility. I got a huge amount of pushback from my MO but I went out of state for my MX and DIEP. AFter my chemo was finished, I switched to another facility because I was sick of arguing with my MO about everything and I resented her trying to use fear to make me use HER BS at her facility. I was more than vindicated on many levels because her BS recommended LX and rads and I knew for many reasons that wasn't right for me and I was certain to have more surgeries had I done that since I ended up having more areas of cancer in the same breast. My BS and PS's did a fantastic job and she was shocked when she saw my range of motion after the surgery.

    Do check with your insurance first though, especially if you are in an HMO.

    Wishing you all the best with your treatment.

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  • Northernflower
    Northernflower Member Posts: 10
    edited November 2015

    Thank you so much. It's bewildering to the newbie, for sure, and it's helpful to hear from people with experience. May I ask how your ILC was found, and how the other areas were eventually found? I found the lump myself, and after the biopsy came back positive had MRI of both breasts. On MRI things look okay except for the spot I found, but I am of course worried that there's more than can be seen given the sneaky nature of ILC. Hoping that is not the case.

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  • Trvler
    Trvler Member Posts: 3,159
    edited November 2015

    I had my mammogram in 2013. I could feel radiating pain in my breast. They found nothing. It got worse and I went back in 2014 (mid year). My OB said 'It doesn't present like cancer'. But he still gave me an order for another mammogram and u/s. I sat on it for 6 months because of what he said. They did the u/s in Dec and told me they couldn't really see anything but they would do a biopsy to 'put my mind at ease'. They diagnosed me as 2.9 cm. Then I had an MRI which said it was 3.9 and 2 possible nodes. I asked many people for a referral to a BS and got the same name over and over. So I went to him. I had small breasts (B) and implants which I had had for 30 years. I figured they needed to come out because of the age. He recommended lx and rads. When I asked about the implants being compromised because of rads, he said it would be fine and if it wasn't, we could do another surgery to remove the scar tissue. Cont...

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  • Trvler
    Trvler Member Posts: 3,159
    edited November 2015

    Cont…I decided to go to another local huge teaching hospital to get a second opinion. That doctor wanted more imaging. ARound this time I was also starting to notice bee sting pains in another area of that same breast. She ordered a mammogram and u/s. The tech spent about 45 minutes on the ultrasound of that one same breast and recommended 2 more areas of biopsy. I thought, what's the point? I already have cancer. But the BS says their philosophy was one and done, whereas for sure that other surgeon would have subjected me to multiple surgeries. I understand why the original surgeon wanted to start with lx and rads….less invasive. But I think the breast implants were another factor he wasn't really considering and I would have been very disfigured taking out even a 2.9 cm lump from my small breasts. By the end, I think the cancers were over 4 cms. I had neoadjuvant chemo so I don't know for sure. But where you get your imaging and who your BS is matters.

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  • Trvler
    Trvler Member Posts: 3,159
    edited November 2015

    Sorry for the multiple posts. The longer the post on Bc.org, the slower it goes to correct and I type fast with a lot of mistakes so I have to go back. I wish they could fix that glitch.

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