Coordination between docs at different centers?

Options
sos1125
sos1125 Member Posts: 64
edited October 2015 in Just Diagnosed

I was recently diagnosed with IDC--received this news over the phone from a nurse at the local cancer center who immediately launched into a promo for the center's "multi-specialty cancer team." I just about fell over from the shock and didn't appreciate the marketing at that moment. I did meet with the team and was not impressed with the factory-like approach to treatment nor the rush to surgery at the local center. Not in denial here, I know surgery is required (lumpectomy followed by radiation therapy was recommended), but would just like to make treatment decisions from a place of knowledge rather than terror. I evidently have a grade 1 tumor about 7mm, and an MRI indicates nodes probably aren't involved. Got some genetic testing, but won't have those results for another 3 weeks. I figure if I make wise decisions now I may just come out the other side of this nightmare.

My local PCP will refer me to Dana-Farber Cancer Center, Cleveland Clinic or other center of choice for a second opinion. I am seriously thinking of having my surgery at one of those facilities. I have young kids and don't think I would be able to get the required 5 weeks of radiation therapy at the distant center, or chemo if that ends up being needed. I am wondering whether others have had their surgery at a major cancer center and then gone home to the local center to get follow-up care. Will the local doctors be willing and able to follow a treatment plan developed by others? I would be willing to visit the major center a couple of times a year, but I know I am going to have to rely on local docs for some of the treatment. Just hoping others can share how that worked for them. I know my PCP would be willing to work with the surgical oncologist from the major center, but don't know how well radiation therapy would work.

Thanks for any input.

Comments

  • Skittlegirl
    Skittlegirl Member Posts: 428
    edited October 2015

    I am staying local for my treatment. My cancer center also has the "multi-specialty team" thing. So earlier this month my surgeon was supposed to present my case at their monthly conference so that the other doctors not directly involved could give their feedback.

    The only thing I am planning on going to the big city for is the reconstruction. My surgeon is actually the one recommending going out of town for it.

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited October 2015

    SOS - I had surgery locally at a Mass General sattelite cancer center. I then went to Dana Farber for a second opinion after that, as my pathology had changed after my Lumpectomy. Kind of a complicated decision about chemo but Dana Farber got me out of it. I had radiation locally and I ended up being followed by both my MGH MO ( who was great ) and my DF MO ( whom is also awesome.) They don't always agree but I love hearing all angles. i am now in a DF clinical trial being administered at my local facility.No problem with everyone working together. These specialized facilities are used to giving second opinions and working with other hospitals.

    Good luck.



  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited October 2015

    ok, you have a really small, low-grade tumor. I also had a grade 1 tumor-- LOVE the word indolent!

    The fear is, you are young, and have many years ahead of you. But, most studies have found that your chances of never being bugged by this type of cancer again are the same as they are for us older women --over 90% of us are fine, forever.

    You can go for a big, fancy schmuck treatment center, but your recommendations are most likely to be exactly the same. This is a very standardized treatment. I would look for a doc who makes you feel safe, and taken care of -- you will be sEwing them for 5 years, so liking them helps. I went local, and honestly they see and successfully treat enough women with this diagnosis that they will take good care of you

    Hugs, hate that you have to do thid, but remember, if you must have IDC, this is the kind to have


  • marijen
    marijen Member Posts: 3,731
    edited September 2016

    very good advice

  • cider8
    cider8 Member Posts: 832
    edited October 2015

    for me, I went out of state for recon because there was very little local experience for DIEP. I really didn't talk to my local surgeon about it, I just went! But my MO and RO coordinated just fine. They didn't need to 'compete' about my care.

    It was when I got IBC that I needed to get to the experts for direction of my care. Once you get to rare and complex, a second opinion with experts, I think, is necessary. My local surgeon, and tumor board, was afraid about what to do. My MO wanted me to get expert opinions and she coordinated my care so I could get chemo at home. Due to my complex case I chose to have both surgery and radiation out of state.

    You can always get a second opinion to verify the local treatment plan. Your case does not appear complex. It's quite stressful traveling for care but you must trust your team. If you do not trust your local team then branch out. I have known other ladies whose docs refused to coordinate care. Also, my PCP has nothing to do with my cancer care---it's out of her range of expertise. My insurance doesn't require Dr referrals; I can self refer

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    Hi sos112, welcome to Breastcancer.org!

    We're sorry to have you here, but glad you found us! As you can already see, this Community is an incredibly welcoming, supportive and knowledgeable space, and we are all happy to be here for you. Please don't hesitate to contact us if you need help navigating the forums or have a questions.

    Gentle hugs,

    The Mods

  • Mamiya
    Mamiya Member Posts: 432
    edited October 2015

    I have IBC, which cider8 correctly pointed out, is rare and complex. But, even with rare and complex I have a team of doctors at a major cancer center who are more than happy to coordinate with a more local radiation oncologist so that when I have to go every single day for that treatment it won't be so bad. I do travel to another state for my weekly care right now though. So, given that you are facing a much more straightforward set of problems, I would think that you should definitely be able to coordinate care more locally, at a minimum the RO part of it that would require daily visits.


  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    Lenn13ka, thanks very much for this very helpful info. It makes sense that the docs from the large centers would be used to working with other facilities--great to hear that your experience has shown that this kind of collaboration can work. I figure if I do encounter some local ego that just won't work with the larger center I will just have to seek out somebody who is able to collaborate.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    Skittlegirl, thanks for this input. It has to help knowing that more than one doctor will provide input for your treatment.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    Thanks, ICanDoThis, I'm sure there are local docs who would be able to treat what appears, at least right now, to be a pretty straightforward case. I just wasn't at all happy with the factory-ish, un-holistic nature of my local center and would be happier in a center with a different mindset and access to latest treatment options. I figure I will get the best I can find to do the initial surgery and treatment plan and then hope like heck I can find local doctors to implement the plan.

    Thanks again for your help, I appreciate it.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    Cider8, thanks for this information, I am really, really hoping and praying all goes well with your care. Sounds to me as though you have a very good local team as they are thinking of your best interests and referring you to specialists when you need them. Best wishes for your continuing recovery.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    Notdoneyet, thanks for this info., that is exactly what I am hoping to do--get surgery and treatment plan at the large center, and then get the required radiation therapy at home. It sounds as though coordination of care between centers happens all the time, I am very relieved to hear that.

    Best wishes, hope all goes well with your treatment and that the weekly trips can end soon.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2015

    Mine originally was thought to be 7mm on ultrasound & core-needle biopsy, but after lumpectomy turned out to be 1.3cm. Still considered “small,” though until the surgery they were calling it “tiny.” Mine was grade 2 (moderately differentiated), but the mitotic score was 1, or slow-growing. Low oncotype score, ER+/PR+/HER2- profile, and my age (almost 65) made chemo inadvisable, and because of the location of the tumor I am even a candidate for partial-breast radiation (3 wks rather than 6).

    I went to a major university-hospital breast cancer center (North Shore Evanston Hospital Center for Breast Health and Kellogg Cancer Center) from the get-go, because it’s only 20 min. away and I’d been getting my screening mammos there for years. Nobody had to (or tried to) sell me on their team, but they are all wonderful and I am glad to be eligible for several trials and to reap the benefits of others that had taken place there. If I were you, I would go for the best in-network breast surgeon you could find--bearing in mind you will have to return for followup appointments; and a lumpectomy (the most likely scenario in your case) would be same-day surgery, with no hospital stay. So you might, if going to a distant hospital, arrange for a hotel room close by to stay overnight in order to give your family or friends who drove you a chance to rest. (You won’t be able to fly for a month afterward, so the hospital should be within driving distance). You can do radiation locally as long as your local hospital has the necessary equipment for the therapy deemed most appropriate for your cancer. In fact, you should do your radiation at a facility that wouldn’t require a long commute, as you’ll be going every day M-F for at least 3 if not 6 or 7 weeks. I lucked out because Evanston/Kellogg is close by and one-stop shopping. The only one of my doctors not part of North Shore Health is my FP/PCP--and North Shore sends him all my reports. In fact, they let him do my pre-op EKG and bloodwork. Chemo, if you need it (that’ll depend on your tumor’s cytology, node involvement and margins--and perhaps your youth), is usually every 3 wks or so, but your local hospital may be able to administer it after consulting with your med. onc.

  • marijen
    marijen Member Posts: 3,731
    edited October 2016

    Chisandy, what was the location of your tumor? I would like to have partial breast accelerated radiation too. I'm building my case :)

    Thanks.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2015

    Marijen, my tumor was in the 10 o'clock position (lateral, upper). The reason I'm a candidate for partial RT is because I'm only at stage IA (clean margins, neg. nodes), the tumor was 1.3cm, grade 2 (but mitotic score 1, or slow-growing). low oncotype score (16); and besides being the same hormonal profile as yours, I’m nearly 65. At stage III, grade 3, you may have a more aggressive tumor and with lymph nodes involved, probably a suspicion of micromets in your breast beyond the tumor cavity. Did you get Femara yet? (If you did, neoadjuvantly since your lumpectomy’s not till next week and the tumor shrank, maybe the Femara took care of any micromets). But in your case whole-breast might give you a better, albeit temporarily uncomfortable, overall outcome.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    ChiSandy, thanks very much for this information. I am fortunate in that my health insurance allows me to go "out of network." I will end up paying significantly more for whatever out-of-network care I get, but I really feel it's worth it to get the best care on the front end. I do have a question for you: How did you feel after the radiation therapy? I am considering getting my RT at University of Michigan Cancer Center that's about a 2.5-hour drive from me, figuring for the greater expertise that would likely be there I could handle 5 hours of driving a day for 6 weeks. Not too sure that is practical, I may just have to find a local (or at least closer) radiology oncologist that could carry out the treatment plan. My tumor is (supposedly) grade 1 and about same location as yours, maybe I can also get the partial RT, sure hope so.

    Thanks again for your helpful information, hope you treatment continues to go well--sounds as though you are getting excellent care, which certainly would help to reduce anxiety level.

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited October 2015

    Radiation does leave you very fatigued, SOS. I was very lucky in that my son and his family live 20 minutes from the two-hours-away NAICC facility where I had my surgery, and where my onc and a couple of other docs are located. I stayed with the kids and went home weekends and once or twice during the week. This worked out fine.

    My suggestion would be to meet with an RO or two closer to home, then, if you decide the faraway hospital is where you want to go, do so, but be prepared to stay in the area one or two nights/week (more if it snows!). Also remember that where you start is where you'll finish. There is so much preparation, and mathmatics, and physics, and interdepartmental meetings and so forth in setting up a radiation therapy plan that switching facilities midstream is almost never done. Also a big no-no is stopping in the middle of treatment as that leaves any errant cells untreated and precludes you from having rads to that area in the future. Pretty much all your other treatments and providers and facilities are flip-floppable, but rads is really a commitment.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    BrooksideVT, thanks very much for your advice. This makes so much sense. As I was thinking about the 5-hour round-trip drive to the U-M Center, it did occur to me that weather could be a huge factor, and I also have kids to consider. I am going to at least initially focus on finding a local RO, seems like that would be possible and would likely take a lot of stress out of the weeks-long therapy process. I understand where once the radiation treatments get rolling, you need to finish the process for best possible results.

    Thanks again for making this clearer to me, I appreciate it.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited October 2015

    sos, I haven’t started my treatment yet--having my simulation session this afternoon. But the accelerated partial-breast protocol, despite delivering higher doses than the 33-session, does cause less fatigue because of the fewer number of sessions--and fatigue usually sets in at about the 3-or-4-wk mark. The difference is that with the shorter protocol, you’ll be done by the time fatigue (if any) hits, and by then you’ll already be on the mend; with the longer protocol you have fatigue through the last 2 to 3 weeks of treatment.

    If your treatment can be done closer to home acc. to the protocols set by the RO at U. Mich, and with the same kind of equipment by equally-skilled techs, no reason for you to have to drive all the way to Ann Arbor & back every day for3- 6 weeks.

  • JellyShoes
    JellyShoes Member Posts: 68
    edited October 2015

    I went to Dana-Farber from the beginning for my stage 1 ILC. My MO and surgeon were both affiliated with them.

    For radiation, they specifically recommended two different ROs at facilities closer to my house. So instead of driving 1:15 each way a day, I only had to drive about 30 minutes each way.

    I finished rads at the end of September, and I was really happy with being able to do it close to my house, and with the radiation oncologist that Dana Farber recommended.

    It sounds like you're focusing on finding a local RO. Hopefully your regional cancer center can help you find one that's really good. Once I got the recommendations from Dana Farber, I set up consults with both centers closer to my house, and picked the one that I felt fit me the best. Hopefully you can do something similar.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    ChiSandy, thanks for this information. I am definitely going to check out the accelerated partial-breast protocol if it looks as though I may be a candidate for that. I am planning to go to Dana-Farber Cancer Institute for second opinion and probably the surgery portion of my treatment. If they think this will work, I hope to have their RO design the treatment and then hopefully work with somebody local to actually deliver it.

    Hoping all goes well with your treatment, hopefully you are on the home stretch.

  • sos1125
    sos1125 Member Posts: 64
    edited October 2015

    JellyShoes, it's really great to know that Dana-Farber may actually be able to recommend local facilities to do the RO part of my treatment. I admit I find the radiation therapy part of the treatment really scary, but I know that will most likely be required.

    Thanks very much for passing on this info., I appreciate it.

Categories