New here, still waiting on a plan

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1step
1step Member Posts: 110
edited January 2016 in Just Diagnosed

I was diagnosed middle of November. The holidays and insurance policies (I have a marketplace HMO, so January 1st means needing new referrals) have slowed creating a plan to a crawl. Frustration really hit on Thursday when I was supposed to see my surgeon to go over the latest test results (molecular imaging to further clarify breastMRI results). I also needed to discuss whether or not I need a LN biopsy (oncologist recommends, but I get the impression the surgeon thinks it's unnecessary), and looking for her opinion for a recommendation for a new oncologist.

I'm really struggling with sleeping regularly. I usually fall asleep easily but wake throughout the night. Then I eventually crash for an entire day which tends to make living a normal life difficult. I'm an active person and I hate not feeling capable of maintaining my normal schedule and I dread what is yet to come.

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  • BethL
    BethL Member Posts: 286
    edited January 2016

    1step - so sorry you're dealing with delays on top of breast cancer. Waiting is so hard, one of the hardest parts of the process. I'm not an expert, but I'm pretty sure with a 1 cm idc tumor, you would need a sentinel lymph node biopsy to see if there is cancer in the nodes. That would determine stage and would possibly determine your treatment plan. My first cancer 10 yrs ago was dcis with small microinvasion idc and I had it done then. This time the idc was 7mm, and I had it again. I'm sure others will speak up soon to give you more info.

    What happened Thursday? Did they cancel the appt? Thankfully breast cancer usually doesn't grow so fast that you can't take time to research and educate yourself, but 2 months is a long time to wait. I was diagnosed the end of August and didnt have surgery until dec. 4th. That was hard but I had already had my idc removed through an excisional biopsy so I wasn't too worried. For your own sanity, it's good to at least know what to expect.

    Hang in there, keep on your docs and keep coming here.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Hi 1step,

    Welcome to this warm and compassionate community!

    Sorry to hear you've been having to wait to get a plan in place for your treatment, and are understandably frustrated.

    As Beth mentioned above, keep at your doctors and don't be afraid to ask questions!

    We're here for you!

    Big hugs

    from the Moderators.

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  • 1step
    1step Member Posts: 110
    edited January 2016

    Thanks for your supportive words. Yes, my appointment on Thursday had to be cancelled until my referral can be renewed. My surgeon did suggest a lumpectomy with sentinel lymph node biopsy as long as nothing was seen on MRI to change that. The molecular scan that she ordered was to clarify what was seen on the MRI in both breasts. I'm worried know, that what was to be a 'simple' lumpectomy may now become a double mastectomy. And I'm so tired of being tired all the time.

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  • Kiks1
    Kiks1 Member Posts: 254
    edited January 2016

    1step, I think Bethl has given some good advice there. I found my lump the weekend before Thanksgiving, was able to see the   GP on Monday and as soon as she wrote the order, I called every mammography center within a 50 mile radius to get the soonest appointment( I was worried because of the holidays). I ended getting in that day, had a biopsy the day before Thanksgiving and was given dx on Nov. 30. The nurse navigator at the imaging breast center assembled an oncologist, surgeon, and radiology oncologist for me to meet the following Monday. In between, I was scheduled for the breast mri. I wanted to get things going, in part,  because I knew I would have to change insurance and also because of holiday schedules.

    Looks like you already have some tests done. Like Bethl mention, I would do a SNB just for peace of mind and to get accurate staging and treatment. 

    I was a wreck ( not that I am not now, but definitely much better) right after I was diagnosed. The onc. finally prescribed xanax that helped take the edge off through my initial phase. It was really hard to function and getting to work on time ( never been late) was the hardest part. Unfortunately, anxiety takes a hugh toll on us and I am sure it accounts for a lot of our tiredness. But it does get better like everyone says.

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  • 1step
    1step Member Posts: 110
    edited January 2016

    I knew I liked my surgeon for a reason. She called me today to find out if I had received my results. I explained what happened with the referral and she gave me results over the phone. The scan showed there was no cancer present other than the original tumor. I also asked her about the lymph node aspirate ordered by the oncologist. She reaffirmed what I had presumed. No need to do an extra procedure. She will plan on doing an ultrasound of the lymph nodes at my next appointment and will plan on removing any lymph nodes that are enlarged as part of the sentinel lymph node biopsy. she also recommended I talk to my PCP to possibly start anti-depression meds. Thanks again for all the support.

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  • Kiks1
    Kiks1 Member Posts: 254
    edited January 2016

    Good news and don't worry about the SNB. It was a painless procedure for me and many others. I think worrying about it was   the worst part.

    Xanax helped get me through the dark days but do be careful, I am dealing with withdrawal symptoms right now. I only took .5mg every night for about a month. Use as needed but as sparingly as possible.

    Wishing you the best.

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