feeling lost...don't know where I am, but do I want to know?

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octogirl
octogirl Member Posts: 2,804
edited August 2015 in Diagnosed and Waiting for Test Results

Thanks to all of you for any help you can provide. Here is what I know so far: got back from a lovely vacation in late May, felt a lump on my right breast right below the nipple. Went to my GP 6/1, referred for a diagnostic mammogram, had that and ultrasound at a breast imaging center, they asked me to come back for biopsy. Biopsy was yesterday, and the radiologist called me this afternoon to tell me it was bc. I am fairly sure from their reaction that both my GP and the radiologist suspected cancer as soon as they saw the lump (they both commented on the changes to the area around my nipple next to where it is located being 'concerning'.)

However, the radiologist said that they aren't sure from biopsy result what type it is (ductal or lobular, hope I got that right, as I said, I am lost)...that so far he can't see any lymph node involvement (they had done extensive ultra sound look at the nodes)...he said nothing about stage and it never occurred to me ask...he also said that he wasn't sure I'd be a candidate for breast conserving surgery because of the location near the nipple...(he implied nipple needs to go).

anyway, he called my GP and got a referral to a breast surgeon (apparently referral has to come from the GP for insurance purposes) and told me surgeon's office would call me. They called the same day, and I have an apt with surgeon July 2, and that the surgeon wants a MRI, which she (surgeon) ordered but which needs insurance approval. They expect MRI will be scheduled for next week with results available to surgeon when we meet.

all of this seems to be taking longer than it should. but I am not sure I want to know if there is more I should do or think about in the meantime, to be honest, as I am overwhelmed...and google is not my friend here. To complicate matters, I live in a semi-rural area and all of these providers except my GP are a good hours drive away. Which leads to me wonder: since I have to drive anyway, should I forget about the surgeon in the bigger but still not huge city and go straight to the world famous university medical school 2.5 hours away?

and then there is the part of me that just wants to forget the entire thing for a few more days....I am stressed about telling anyone about this, other than hubby. I've only been able to bring myself to talk to him and one girlfriend...

any advice on questions to ask, either of the docs or of myself, or steps I can take in the two (!) weeks before I see the surgeon, would be much appreciated!

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited June 2015

    Hi octogirl,

    Check out the Just Diagnosed forum but first take a deep breath, you will get through this, I think I would look at both medical facilities, see which doctors you prefer, what they recommend for treatment and go from there. Take someone with you to your appointments, take notes, get copies of all test results and don't feel pressured by anyone. Make your own choices, because only you has to live with them

    I hope you get more replies.

    best wishes

    Ali

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2015

    octogirl, sorry you found yourself here. Good idea to stay off of Google. The DX itself can be very over-whelming. You really won't have a full picture until they do more tests, surgery, etc. My advice would be to take someone with you, who is able to take notes or to record your up-coming Dr visits. Meanwhile, try to stay busy, get copies of your medical records as you go and breathe!:)

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited June 2015

    bump

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  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited June 2015

    I love Your idea I kept a journal, grateful in the front and

     all about appts in the back. I helped me a lot cause I was

    alone.  Kept paperwork from Dr in there too. and I am going

    to be think good thoughts and praying for You.

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

    Hi octogir, welcome to Breastcancer.org. We're so sorry for what brings you here, it's such a scary time, but we're so glad you've found us.

    Besides the wise advise, information, support and encouragement you'll find here in the boards, there is a special article in the main Breastcancer.org site designed for those just diagnosed. It's called Breast Cancer 101, and hopefully will help you sort through all of the information on our site to find what is more relevant to you right now like understanding your diagnosis, questions to ask your doctor, etc.

    We hope this helps. Let us know how you're doing.

    The Mods

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  • tgtg
    tgtg Member Posts: 266
    edited June 2015

    Hi, octogirl--Yes, you do want to know more, because once you do,an action plan will follow and having that plan for treatment will actually help ease your worry, as many (even most) of us learned. Right now, with some information but not a whole lot, you are in a limbo of sorts, but that unsettling limbo experience ended for me once I knew how and when we were going to get rid of "that sucker" in my body,

    As for your surgeon referral, be sure to ask how many breast cancers he/she has worked on (yearly and over his/her whole career) and how many the hospital does a year. Experience really counts! If the closest doctor and/or hospital aren't very experienced or have a less than sterling record, then do look into the larger facility and staff further away, asking the same 2 questions. All other things being equal, there is one big difference between a community hospital and a big teaching hospital besides size, and that is the personal factor. At a teaching hospital there is always the chance that your surgery will be performed not by the surgeon you saw but by one of his residents--i.e., an "apprentice" surgeon under his surveillance--while in a community hospital the surgeon you saw will do your surgery and follow up with you personally. Another factor to consider is the complexity of your particular case: if your tumor presents special characteristics that make it difficult to deal with, then the larger teaching hospital might be the better choice, since folks there are sure to be up on the current research. (Given my stage 1, slow-moving tumor that could easily be excised in a lumpectomy, I chose the local surgeon and community hospital rather than one of the many respected teaching hospitals downtown in Philadelphia--but both my breast surgeon and radiation oncologist were products of the U Penn Med School and did fellowships at Memorial Sloan Kettering, so I had the best of both worlds.)

    Whatever you decide, be assured that you will feel better once you know the full story about your tumor and your treatment plan. The first plan may change a bit after the surgical pathology comes back (the biopsy pathology is not as complete as the surgical one), but that change is all for the good, and another step toward healing. Stay calm (I found long walks very helpful both physically and mentally), and know that you will get through this. Sending good thoughts your way, Trudi ,

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  • octogirl
    octogirl Member Posts: 2,804
    edited June 2015

    hello Trudi, mods, and all of you: thanks for the replies and support, much appreciated. I do want to know, of course, it is just that I was feeling so lost....today is better. I had a pity party last night and ate a pint of Ben and Jerry's but realized I can't afford to do that every night... :-)

    I am in an unusual position in that I work for a large research university, but am two to three hours drive from the medical school location....but have the option to go there if I want. My insurance pretty much lets me choose, it is fairly top of the line, very fortunate there. I went through a completely unrelated medical issue six months ago, and for that I found the drive to the world class experts to be worthwhile, as no one locally was really sure what was going on (and actually it took months to even get a diagnosis)....but for this my gut is telling me to stay local, and a part of me actually feels a bit guilty about that! I feel I should take advantage of awareness of the latest research, but I am not feeling like making the drive all the time, if that makes sense. That said, even the 'local' option is an hour drive away...

    In any case, your points about experience vs teaching aspect of the research unit are helpful. The bs I've been referred to does exclusively breast surgery and has many years of experience, and would do the surgery herself, so that part seems reassuring. I will add my questions about number of surgeries she has done, and number at hospital, to what I ask her at the apt.

    I've decided to spend the weekend hiking in the mountains near where I live, with hubby, and just try and relax. So far so good on that: I actually found myself singing while cooking dinner tonight! Then Monday am I start in on making calls and gathering information so that I am ready for the apt I have with the bs, and so that I can be more sure of my decision if I choose to stay with her. I've already made a file to keep everything together, which is an excellent reminder/suggestion.

    Thanks again.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2015

    Octogirl, enjoy your hiking this weekend.

    I was going thru what you are going thru 6 years ago. I kept it pretty simple. I had a really good breast surgeon who I liked tremendously. The only thing I did to prepare for the initial visit with her was to take a tape recorder...of course I asked her if it was ok and she was fine with it. This took a lot of pressure off of me. And thank goodness they told me to stay off the internet which I did.

    Six years ago I had no idea how I would make it through all of this. But I did...and it helped so much that I really liked my surgeon, the oncologist and the radiologist. I found my oncologist through having a second opinion.

    You will find tremendous support here.

    Liz

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  • octogirl
    octogirl Member Posts: 2,804
    edited June 2015

    Hi Cowgirl... I really did have a great weekend. We hiked an area off the internets, so no temptation to look up stuff that would just scare the *()*%)# out of me ......Unfortunately, with Monday, anxiety returns, but I've decided to take small steps of making a few phone calls and doing some research on docs. So far, I have to say that I love the way the bs staff has responded to questions. (as opposed to the MRI staff, but that's a topic for another post...)

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2015

    Small steps.....excellent!!!

    glad you have a good time hiking.

    Liz

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited June 2015

    I also live in a semi rural area and made this same decision, 12/14. I opted in the end (because I didn't have lobular, but ductal cancer which I believe is simpler) for the more local hospital because there are follow up appts to consider, checking the scars, monitoring and removing the drains, and I had just moved to a new town, lived alone, and couldn't imagine how I would get myself 3 hrs ea way for these follow up appointments. I could have stayed in a hotel for the two weeks or so post surgery, but it seemed a very gruesome and lonely choice. I wanted my own bed. I had already decided against reconstruction as well. I realized that though it is major surgery (bmx in my case) it's not neurosurgery. I interviewed the local surgeon exactly as the poster suggested above. Asked about his experience with SLNB, and considered that the local/regional hospital had a new wing and all rooms are now private. I got good care there.

    It's s tough decision with a lot of components. In the end, if you get at least two surgical opinions, and consider all of the details, you will know in your gut what is right for you. Best of luck and a gentle hug. I'm so sorry you're here.

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  • Chi-Kat
    Chi-Kat Member Posts: 5
    edited June 2015

    Hi -

    I am new-ish to this site and the BC world, but since I just went through a kinda/sorta similar decision-making process, I thought I'd share. In my case, both surgeons I considered were close by (I'm in Chicago), but one was at a larger hospital and was more "famous", if that makes any sense. The other BS was also a breast surgeon (that's all she does), but less well known even though she is also very experienced. I ended up choosing the smaller-hospital BS, for pretty much the same reasons mentioned: as far as major surgeries go, this surgery and treatment plan is going to be pretty much the same at both places, especially if you have a "common" cancer type (as I do) that both places have seen a ton of times before. I also decided that for all the testing, chemo, radiation, follow-up appointments, etc., it was logistically easier for me to go to the smaller hospital. My philosophy was that I could always switch later if need be -- not that switching would be easy or would be something I'd do lightly, but it helps to know that it's not impossible to switch later if you want.

    I'm glad to hear that you had a chance to get some fresh air and exercise this past weekend - I cannot wait until I feel well enough post-op to do the same!!

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  • slv58
    slv58 Member Posts: 1,216
    edited June 2015

    Octogirl, I'm sorry you find yourself here- we have all been where you are and as everyone has mentioned this is the most difficult stage. Once you have a treatment plan, you will feel empowered and will be able to move forward with a sense of calm and positivity.

    I was in a very similar situation when choosing which hospital but the decision was easy. Hospital one was an hour drive, community hospital. The hospital I chose was 2.5 hours away but large well known teaching hospital. My mother passed of BC when she was 45 and left a 15 year old and 6 year old daughters missing their mom. I had to do everything I possibly could to be here for my kids- the first time. This is not implying that I thought my community hospital was less, but for some reason I felt the teaching hospital would have more experienced doctors and latest strategies. As it turns out I have an extremely rare breast cancer- metaplastic and feel good about my initial decision.

    It sounds like you may be leaning towards a mastectomy because of possible nipple involvement. If you are thinking about reconstruction may I suggest considering diep. I had no idea that such a process existed and was thrilled to learn after my recurrence that I was a candidate for it. They use your own fat from abdomen and micro surgery to attach to your rib which leaves you with a breast mound made from your own fat- no silicone. Larger hospitals usually have plastic surgeons skilled in this surgery where community hospitals may not- just something to consider in your decision.

    You have found a wonderful sight for support and information. Everyone here understands what you are going through and it's always a safe place to vent or express when others in your life don't really get it.

    Hugs xxx

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  • Andrews1of5
    Andrews1of5 Member Posts: 1
    edited August 2015

    Hello Octogirl,

    I was recently diagnosed with breast cancer (7/30/15). My bs ordered an MRI last week and on Friday learned that they found two more tumors in the same breast and a tumor on my liver. Bs has ordered a PET/CT to check out the liver. Waiting for the insurance to approve the procedure then I go in to discuss my options for surgery. I don't even know what the PET/CT is. Bs has already referred me to an oncologist - my first appointment is later this week.

    I too feel very overwhelmed. This is all moving so fast and so slow at the same time. Due to extensive cancer history in the family I've opted to do the genetic testing. It will be another two weeks before that comes back, but I've already decided to talk to my surgeon about BMX. I was told there was only one tumor and within two weeks they found two more on that same breast. I don't want to have anxiety in the back of my mind wondering if/when something will show up in the other breast. The genetic results may be helpful for my sister and daughter.

    You are not alone.

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