Boston area Oncologists– Metastatic

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susan_02143
susan_02143 Member Posts: 7,209
edited September 2019 in Stage IV/Metastatic Breast Cancer ONLY

It has been a long time since I logged onto bco.org. The last 18 months have been complicated and hard; leading me to retreat to my shell. It didn't help that my keyboard was cantankerous and wouldn't let me use the space bar!

In 2011, I was assigned to a new oncologist when mine became ill. Over time, I came to trust Dr. C implicitly. My trust in her has served me well. When she moved to the Dana Farber, I elected to follow her. Over the past few years, she has been a great advocate. I have never doubted that her medical advice and recommendations were made with my best interests in mind.

I have just learned that Dr. C will be leaving the Dana Farber and this time I can not follow her. I am crushed! I had thought, even planned, that she would be the one I finished this path with. Not in a million years did I imagine that I would have to "train" a new doctor. She is the last person on my medical team who remembers me as a healthy person with cancer instead of what I have become. She is the one who remembers my original oncologist. She remembers.... well it doesn't matter.

So, the Dana simply assigned me to someone with no discussion. In fact,I still haven't even received official notice that she is leaving! I am in no way wedded to Dana Farber. I am now looking for my next oncologist.

I need someone who isn't horrified by my slightly dark humor, has a creative/science balance in their approach to treatment, actually listens to what the patient says about how their body is feeling, and is truly in the room when they are in the room. I am willing to go most anywhere, but would probably prefer the Beth Israel, MGH or Dana Farber.

Do you think your oncologist might be right for me? I would love any and all input.

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  • Boston12
    Boston12 Member Posts: 22
    edited August 2019

    I go to MGH and have been very pleased with the care I've received there. I have three oncologists (MO, RO, and breast surgeon) and they've all been great. I'm currently on a clinical trial, and so I receive very careful, comprehensive follow up care. MGH has a comprehensive satellite site specifically for cancer care. I use both the main campus in Boston and the satellite site at Newton-Wellesley. I did chemo in Newton, radiation in Boston, and follow ups in both locations.

    I forgot to mention, they are very focused on caring for the whole person and I feel like they really know me.

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  • Daniel86
    Daniel86 Member Posts: 271
    edited August 2019

    Not related at all to your questions but I am happy to see you around.

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  • muska
    muska Member Posts: 1,195
    edited August 2019

    I understand your concerns but I think it might be best for you to stay at Dana Farber - for many reasons, access to trials including.

    Have you met your new oncologist? Why not meeting him/her before looking outside?

    I think over the years of DF follow-ups you might have heard a few names of wonderful specialists who work there. If you don't like your new oncologist you might switch to another specialist at the same DF.

    I had a great experience when I went to DF for a second opinion in 2013, if you want the name of the oncologist I saw at the time please send me a private message.

    Best.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2019

    Hi Muska,

    I am glad that you had a great experience at the Dana in 2013. What you probably don't know is that at the Dana, once you are in a particular doctor's practice, they really don't "allow" you to switch. The oncologist to whom I have been assigned specializes in primarily gyn cancers; not breast. This doctor is not doing any research, nor have they published any papers. Of all the CVs on their website, this would not have been one that would have sparked my interest at all.

    I need someone who has lots of experience with metastatic patients with breast cancer, which is why I am trying to gather some names of doctors who have treated people in this forum over a period of time.

    I have nothing against Dana Farber. It is a factory, but it is *my* factory. However, I am simply not wedded to it. What I need is an oncologist that I trust implicitly, both medically and emotionally.

    Thank you for your thoughts,

    *susan*

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  • KSkier
    KSkier Member Posts: 467
    edited August 2019

    I also have not signed into these pages since March. But when I did this week I was wondering which old "faces" I would see; including yours. Nice to see you here! I have been a patient at Dana Farber since 2009 and will gladly discuss the level of professionalism and compassion I receive from my oncologist there; who is also a researcher; as you can gather from the fact that I am lab rat. Please pm if you want names and answers to specific concerns.

    KS

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  • jobur
    jobur Member Posts: 726
    edited August 2019

    Susan,

    Sorry, no advice on mo's, but I was SO happy to see your username pop up this morning! Wish you all the best in finding a new doc (very sorry you are faced with this daunting task) and in all other things as well.

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  • pajim
    pajim Member Posts: 2,785
    edited August 2019

    Susan, I've been really worried about you and am so pleased to see you!!

    My DFCI Oncologist puts up with me (which takes a lot of doing because I come with the eyes of 15 other doctors on me), knows his biology (so he can talk with my husband) and is willing to think outside the box if I push him. Sense of humor is excellent. He definitely is acting in my best interests as he and I see them. If I want to work, his job is to keep me in my office chair as long as possible.

    Downside is sometimes I have to push him to pay attention, and he's a little too conservative for my taste. But if I push, he's good. Part of the reason is I'm an easy patient so he doesn't have to pay a lot of attention. And that I don't love being 'taken care of'. But when the chips are down he is there. Right there. His NP will do all the touchy feely so I see her if I need that. (every couple of months I make sure I see her).

    I've also seen a trialist at the MGH. Don't know him terribly well but he explained things well and he listened to me. I would be willing to see him again.

    Will PM you the names.

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  • Hudson32700
    Hudson32700 Member Posts: 8
    edited August 2019

    I wanted to say hi! It is me, formerly English Major 😀 I went to DFI for a 2nd opininion....so not really qualified to advise....just want to say good to “see” you

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  • lulubee
    lulubee Member Posts: 1,493
    edited September 2019

    SUSAN! HI! I'm SO glad to see you pop in. Been worried about you since January.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2019

    Hi All,

    Well, last week, before receiving my first week of cycle 21, I met the new oncologist, Dr. Susan. As you can imagine, she was running very late as she had, no doubt, a stream of anxious patients to meet. I was very pleased that she pays close attention, listens carefully, and asks insightful questions. There is potential here to develop a real relationship. I am delighted that we are not in "crisis" mode so that we have time to forge a common vocabulary and find our rhythm together. Back in the infusion room, I had my last session with my primary infusion nurse. She doesn't generally work on Wednesday but the Labor Day holiday changed up the schedule so she was onsite. She had already talked with Nurse Meaghan, someone that I have had in the past before Nurse Lynn took over my care, and I like her very much. Nurse Meaghan works a full shift on Wednesdays so will be available when I have the afternoon doctor appointments and the early morning infusion without doctor appointments.

    So, I am going to assume the best here. I am no longer having nightmares and anxiety. I plan to work diligently to make sure that Dr. Susan understands my priorities; so pressing ahead.

    Thanks for all the support!

    *susan*

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  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2019

    Susan,

    Glad to learn you're in good hands. Excelsior!

    Tina

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  • lulubee
    lulubee Member Posts: 1,493
    edited September 2019

    So relieved for you! Sounds like it's all working out.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited September 2019

    Everything sounds good!! Glad you are getting comfy with Dr. Susan, Susan.

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  • pajim
    pajim Member Posts: 2,785
    edited September 2019

    Excellent! I know Meaghan -- she's good.

    If you're in the house at the crack of dawn tomorrow I will see you. 7:45am R us. We could have breakfast between blood draw and infusion.

    I'm the one with the crutch.

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