This waiting is the worst!

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ForHisGlory
ForHisGlory Member Posts: 64

I was being a good girl and got my routine mammogram late august. It had been 2 years so I wasn't that worried. I have very sore lumpy breast so I wasn't that surprised when they wanted me to come back. But when I went back for the follow up mammogram amd ultrasound, the behavior of the staff was my first clue. I felt like I was in a lifetime movie and I didn't like how that felt. Biopsy was recommended and scheduled for the following week. Imagine my surprise when the radiologist practically told me during the biopsy that it WAS going to be malignant! Not her fault because I asked point blank but i didn't expect her to tell me amything! That was 9/18. 9/21 the results were confitmed. IDC.  Went to the breast surgeon 9/23 and now we start the wait/decision process.  I think what bothers me is that it's not so cut amd dry! Tumor is 7mm, so that should make me stage 1. ER+ PR+ and HER test came back equivocal so they're running further tests. MRI is scheduled for next Monday because my breast tissue is EXTREMELY DENSE .What else could be lurking?? Genetic testing tomorrow. Wait a week to find out the HER test results. Should I get second opinion set up?? 

I am also a nurse who just accepted a promotion to unit manager of a very busy facility last week. I'm not so sure I can manage the stews of all these changes! What surgery? What treatment?  Tamoxifen scares me because my pms is horrid and I'm only 43. I have 8 children, 5 still at home. I know God is going to help me through this but any support /advice I can find on here is welcomed! Should I go ahead and choose the big sirgery? Sure scares me about the recovery but I wanna fight this hard! Can I just do some chemo amd no tamoxifen? ?

Thanks from a newly diagnosed, impatient, fretting mama!

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  • linzer
    linzer Member Posts: 164
    edited September 2014

    You are right, JH, waiting is the worst. I also found out from my radiologist. He just kept repeating, "I'm so sorry. I'm concerned." and so on. In hindsight, it helped prepare me as I did end up with a dx, but I also think that it could have caused a lot of unnecessary worry if I hadn't. Radiologists really need to think about what they are going to say if they deliver the news, and whether or not that is the time to do it. Anyway, I've managed my job quite well throughout treatment. Some have a rough time of it, but that is what leave is for. You will be able to do this. Make sure that you meet with an integrated team before making a decision to have surgery first, etc. If you would benefit from Her2+ drugs, such as Perjeta, you cannot get it after surgery. Go slow and steady and make sure that you make educated choices. Being a nurse will be helpful as you won't be as overwhelmed by the system. Your surgeon should be able to tell you what the stats are for the surgery piece. I had lumpectomy and will have rads. Hugs! Keep us updated :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    First, as always, the disclaimer:  I'm no doctor.  I can only comment on what I personally experienced, that has anything to do with your situation.

    As for chemo but no Tamoxifen: It can be impossible to know how you will react to these treatments. That's not the answer you want, I'm sure. But...I hated Tamoxifen (and Aromasin less so), but I could always work through it (though I had a desk job - BIG difference than your situations).  I mostly had hot flashes and bone pain. Yet my digestive system is extremely sensitive and I could NOT work after my chemo for several days, and continued to be miserable at my desk even after day 5.  Then again, it also depends on the type chemo you'd get, and whether your anti-emetics work better than mine. I actually quit chemo after first treatment. When I got a new oncologist, she said that in my situation, the hormonal therapy was more important than the chemo.  Was she right?  Who knows?  Is my situation like yours?  Who knows? Bottom line - look for a lot of information but hold your decisions until you get all the advice from all the doctors.

    As for dense breasts, MRI, and "what could be hiding"... I had one tumor that did not show up on mammogram, barely showed up on ultrasound, the ultrasound tech DID think it was something but the doc/radiologist did NOT--but she gave in and did a core biopsy. She sounded SO surprised when she said it was "a cancer"! She practically gasped. I had already decided on an MRI, so it didn't matter in my situation, but an MRI was performed anyway, the day before surgery so they could mark it properly.  Seemed like overkill to me but I knew nothing at that point and asked no questions.  They never told me, I found it on my report, that a 2nd primary tumor was found in that breast.  If I'd had a lumpectomy--it probably would have been left there.  So - definitely have the MRI - it can help with your decisions.

    As for hearing from it through your technician or radiologist, it's a tough call.  Others say they don't want to spend time sitting at home and wait and worry until they can get an appointment. Some want to have a loved one with them, others want to know asap.  If I remember correctly, I had mammogram, and I always get an ultrasound because I'd had a finding in my other breast that made me high risk.  The ultrasound tech was very obviously concerned, and sent me directly to the radiologist who used her own portable ultrasound. They argued. I was sent home to wait for 2 months, but went I came back it went FAST.  I may not remember it all correctly, but I think it was ultrasound on a Monday or Tuesday, biopsy on Thursday.  And the radiologist called me at me office first thing Monday morning at work -- my first call of the day was "it's a cancer!" She must have been going through all her reports because, when I got a copy, I saw they'd had the reports the Friday before.  Or maybe she wanted me to have one last fun weekend (which is silly because of course we're worried).  I'd personally rather hear it FAST.  I remember getting a heart ECHO because I developed a murmur during treatment.  When we were done, the tech said "I can't talk to you about what I find" (which I hear all the time, so I'm amazed so many of you had a technician tell you what they found).  I said "I know the drill, if it's bad news, there is usually a lot of "typing."  He said "And I didn't type anything at all."  He was telling me I was fine. Heehee. 

    As for it not being "cut and dried" - that's because you're now the patient and not the caregiver. Have you seen the older move, I think it's called "The Doctor" with William Hurt.  I think all medical students should have to watch it before they can get their credentials.  It's never cut and dry.  Looking back, we all talk about numbers.  For making decisions, we all talk about odds and numbers. But in our hearts and minds, we know there are no guarantees and we just have to take  leap of faith and do what we think is best. But nothing is perfect. When I quit chemo, I knew that, if I got a recurrence, I would never look back and worry that I'd decided incorrectly.  I made the best risk: benefit decision I could. I was 46, and a single Mom (8 kids?  Whoa!).

    So, hang in there, and best to you as you run this gauntlet.

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