Scared and having trouble feeling confident in my decisions

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JenRich
JenRich Member Posts: 13
edited November 2016 in Just Diagnosed

Recently diagnosed IDC, grade 2, 1.8 cm, er/pr both 95% positive, her 2 negative, Ki67 25%. Scheduled for lumpectomy and sentinel node dissection Nov 9. There's nothing that can be felt in the nodes or seen on ultrasound in them, and there was no lymphatic vessel invasion present from the path report. Can't see the oncologist until Nov 3rd. Of course I've done a ton of reading, and I'm very optimistic. I'm just wondering if I'm doing right thing about picking docs. I live 20 miles (45 minutes) from Houston and M.D. Anderson, one of the premiere cancer centers in the world, and I am going to the local oncologist and surgeon recommended by my gyno. My mom really wants me to go to M.D.Anderson. I feel like the convenience outweighs the rest... I have to keep working through this, and my hospital, radiation, and doctors are all about 5 minutes away. My thoughts are that this type of cancer is very common and very treatable, and that it doesn't necessarily need the premiere cancer center in the world. Any thoughts?

I am truly grateful to have found this forum. I love that the signatures show types and treatments. Everyone is different, but we all have something in common.

Comments

  • muska
    muska Member Posts: 1,195
    edited October 2016

    Hi Jenrich, there is nothing wrong with getting treatment closer to home. Once you have surgery and lymph node dissection you will get more info from the surgical pathology report that is more accurate than pre-surgery biopsy pathology.

    It's very good you are not scared and have the right attitude. Once you have the treatment plan - that will be after surgery - you might want to get a second opinion at MD Anderson. Despite being highly treatable at early stages breast cancer is a sneaky disease and the best shot at dealing with it successfully is usually the first one. You want to get the right treatment for your particular situation from the start.

    Good luck with your surgery and keep us posted!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Hi jenrich!

    Sorry you had to join us here. I chose to stay close to home rather than to go to a University Hospital, 30 minutes away. Comparing my treatment to that of others like me (stage 3, grade 3, triple positive), my treatment plan followed the parameters of the national guidelines, just as most of theirs did. I had access to the most recent targeted therapy for HER2+ cancer (Perjeta), and we altered my hormonal therapy plans after the SOFT study results came out. I guess if I had some comorbidities (bad heart, severe allergies, or anything that would diminish the effectiveness of my treatment plan), I would have sought a second opinion at the University Hospital. But, I work, have three school age children at home, and didn't plan to take off from work. So, it worked out for me. Best wishes!

  • JenRich
    JenRich Member Posts: 13
    edited October 2016

    Thanks muska. I appreciate the response and that seems reasonable to get a second opinion on the treatment plan. Did you get an oncotype dx test? My gyno sent blood for the gene testing, but I'm not sure how to request the oncotype test on the cancer tissue. I guess they would do that from the surgery or can they do it from the core biopsy sample? Seems like so much to learn so fast.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited October 2016

    Jenrich- It is always an option to get a second opinion whether you get it from MD Anderson or from any other major cancer center/hospital at any point in your journey. I know that where you are at at this point in diagnosis is one filled with anxiety and understand your desire to stay close to home for treatment. No matter what, your decision is a very personal one and will be the one that is the best for you. Please feel free to private message me.

  • JenRich
    JenRich Member Posts: 13
    edited October 2016

    Thanks Elaine Therese. It helps to have people who have been through it giving me their thoughts. Trying to take it one day at a time and not get too far ahead of myself.

  • etnasgrl
    etnasgrl Member Posts: 650
    edited October 2016

    I live roughly 50 miles from Houston and received my cancer care at MD Anderson. Obviously, the choice of where you receive your care is absolutely up to you, but I will tell you that I was in excellent hands at MD Anderson!
    The atmosphere was so warm and inviting, the nurses and techs were incredible and my oncologists were extremely knowledgeable. Every single question that I threw at them was answered very thoroughly. I was never rushed or made to feel like I was taking up too much of their time. As a matter of fact, my surgical oncologist called me after my lumpectomy to check on me, to see how I was feeling and if I needed anything. (This was over the weekend, on her free time!)
    The nurse navigator that I was assigned to was AMAZING! She checked in with my weekly to make sure I was doing okay, if I had any questions, or needed to schedule an appointment with my oncologists.
    In all honestly, I never received such good care anywhere else. When I was first diagnosed, I was given a complete run down of every option and had a TWO HOUR appointment with all three of my oncologists, (surgical, radiation, and medical), to make sure that everything was covered.

    If you are comfortable with the oncologist that you have and feel that you are getting the best possible care, than by all means stay where you are. But, if you are wondering about trying someplace else, I can not suggest MD Anderson enough! Also, remember, you will have a VERY LONG relationship with your oncologist. Even when everything is over, you will still need to see your oncologist for follow up appointments. In my opinion, I want my follow up to be done at the most cutting edge place.

  • jomako
    jomako Member Posts: 20
    edited October 2016

    Maybe you can do both. Very often, a large facility such as MD Anderson is accustomed to working with patients from out of town and coordinating care with local doctors for the convenience of its patients. It might be possible to get the best of both worlds - a cutting edge diagnosis and treatment plan that is coordinated with local facilities.

    I've benefited from coordinated care from the Cleveland Clinic and my father received care directed from Duke University while residing in Florida. It is very possible that something similar is available through MD Anderson - it certainly doesn't hurt to give them a call and explore the possibilities.

    Best wishes that you receive the most effective care possible.

  • JenRich
    JenRich Member Posts: 13
    edited November 2016

    Thank you all for your thoughts. My appointment with my oncologist is Thursday, so I'll see how I feel after that. I talked to friend of mine who is a doctor, and whose mom went through pancreatic cancer. She used MD Anderson for all her specialists, but was able to have them prescribe her ongoing therapies to more local providers. We'll see how it goes.

    I have come to realize that somehow, in my head, I've been believing that it's not really cancer unless I have to get chemo... or unless I have to have a mastectomy. Did anyone else go through that kind of thinking?

    Jen

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    I chose more local surgeons (PS & BS) and MO over a major cancer center in a larger city. However, both my surgeons and oncologist specialize specifically in breast cancer - that was very important to me as I was getting a bilateral mastectomy. As far as treatment... for early stage especially, they are all going to follow the same protocol for the most part.

    I don't have any experience with radiation, but I would assume that you would want a highly experienced/trained RO in that case as well. If you are happy with your local medical team then it makes sense to me to want to stay closer to home.

    I also sometimes "forget" I had "cancer" because I didn't go through chemotherapy. Even with the mastectomy, it was fairly straight forward and I had no complications so it was easier to not feel like I was "sick" or fighting some dreadful ailment. It's a little bit surreal really. Only when I go for my oncologist check up, and see the other patients in the waiting room, and have the nurse always start her questioning with "are you in any pain right now"..does the "c" word sink in and I remember the seriousness of it all. It's been 6 years though and all is good. (knock on wood!) Hope your experience is as smooth as possible. :)

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited November 2016

    After I was diagnosed I ended up getting a second opinion from the NCI - designated cancer center about an hour from my home. (I also went to multiple plastic surgeons before surgery.) I stuck with my local doctors because they were very qualified, spent a lot more time with me, and recommended the same treatments as the other cancer center. Actually, the NCI cancer center oncologist told me that if I had only had the right-side 1cm tumor he wouldn't have even ordered an Oncotype test, because he would have considered it unnecessary. I found that interesting (and not in a good way), considering how many women here had 1cm or less tumors and learned whether they should have chemo from the Oncotype. Needless to say, I'm very happy that I stayed with my local doctors. I was also not impressed with the feel of the NCI cancer center. It was VERY large and industrial-seeming. My local hospital and doctors made sure I was comfortable with all treatments and I couldn't have asked for better care.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2016

    JenRich, I will be 9 years out this spring from almost exactly the same diagnosis. It is really cancer, you do need to treat it, but if your local doctors are competent, and you feel safe, I would go with that.
    I went to a large NCI hospital, and the feeling of being on an assembly line that the staff didn't care about was oppressive. I am pretty sure today that I would have done as well scooping the damned thing out with a tablespoon.
    The standards for treatment of early-stage breast cancer are quite clear and well tested. If your docs handle a lot of these cases you will do great.

    Do what works best for your life

  • labelle
    labelle Member Posts: 721
    edited November 2016

    I did both. Went to a university breast cancer center (100+ miles) for my surgery and oncology care, but did RADS locally. I needed to work and the day to day nature of RADS dictated that I stay closer to home for that part of my treatment.

    Follow up care with my OC at the cancer center is just twice a year. Once you are done with active treatment, distance isn't that big of a deal. My feeling was I'd only get one chance to get it all surgically, and I wanted a surgeon I knew had lots of experience with BC. Because I had a lumpectomy, I needed a surgeon that I was confident would get it all the first time around (I so did not want a second surgery) and who was experienced with doing SNBs and would also be able to give me a cosmetically acceptable result. In the end, I decided in order to feel confident in finding a surgeon able to do all these things I would need to go to a breast center-and my GP recommended I do so rather than use a local surgeon. She said that is what she would do.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    I got my initial tx recommendation from a more local oncologist who came highly recommended by my medical friends at Mayo Clinic and other hospitals; I took that rec to MD Anderson, three hours south of me, and they confirmed they'd do the same type and course of tx. So that gave me confidence to stick with my more local oncologist.

    But had they recommended something else, and if I researched it and found good evidence for that course of tx I would have driven every other week for chemo to MD Anderson and not thought about distance or time at all. That's how much I wanted the best treatment I could get.

  • JenRich
    JenRich Member Posts: 13
    edited November 2016

    Hi all! I'm back. Thanks so much for all the feedback and support. I had my lumpectomy a week ago and got mixed news back today. 0/1 lymph node involved, and really great margins around the 2.2 cm IDC.... BUT... they (pathology) found two spots of DCIS that couldn't be seen on the MRI. From what I can tell from the surgeon and the report, one was associated with the lump, and the other, was "incidental", and the margin around that was only .6 mm. So it's called "multi-focal" DCIS. Surgeon won't say what will be suggested, but possibly:

    -more lumpectomy to get bigger margin around that incidental DCIS, or

    -mastectomy because they don't know how much DCIS is there, and where it is, or

    -just go ahead with whole breast radiation as we had originally planned, since the DCIS is small, and should be gotten with the radiation

    I won't see my oncologist until 12/01. Does anyone have experience with this type of diagnosis? What did you do?

    I'm going ahead with getting an appointment set up for MDAnderson Cancer Center to see what they would suggest. This forum helped me make some decisions about when/if I would get a second opinion, and go to the cancer center. Thanks everyone!

    Jennifer

  • Trvler
    Trvler Member Posts: 3,159
    edited November 2016

    I am curious why they removed a node when they didn't think it was +.

  • JenRich
    JenRich Member Posts: 13
    edited November 2016

    Hi Allison (trvler). I'm not sure who you are directing your comment to, but if it's me, it's pretty standard for Invasive Ductal Carcinoma, to remove the sentinal node(s) and test them to see if it has spread. Am I misunderstanding the question?

    Jen

  • beebs2704
    beebs2704 Member Posts: 128
    edited November 2016

    It is a standard practice to do a sentinel node(s) removal with a lumpectomy.

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