nodes inflamed after full double mastectomy and hysterectomy

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jujuga
jujuga Member Posts: 4
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I had idc pr+ and er+ diagnosed last Oct only 1 cm due to full family history b of breast cancer I decided on full mastectomy and hysterectomy not a lumpectomy.  I had expanders placed at time of mastectomy.  There was no nodal involvement.  No chemo and no radiation was recommended.  Pet showed nothing but one small cancer site. I've had a ct scan of my chest due to another problem.  It's showed two enlarged nodes and a cyst in my axilla.  Now I have to get expanders out and test the nodes again.I'm scared  cancer is back and so are the doctors.  I'm afraid of chemo because it killed my brother.  It caused kidney failure.  I'm not sure what to do now if it is cancer.  

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2014

    jujuga, welcome to Breastcancer.org. We're sorry that you're dealing with this worry. When will you have your next test to know for sure about a diagnosis and what treatment may be ahead for you?

    Until you hear from other members about their experiences, you may want to read more about treatment options at the main Breastcancer.org site, or here on the discussion boards. 

    • The Mods

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  • Basia
    Basia Member Posts: 790
    edited May 2014

    I am so sorry you are going thru this. What is the next step? Are they going to biopsy the nodes? I felt the same way you do about not wanting chemo because of the way my dad reacted to chemo for pancreatic cancer.  But the chemo they give for BC is not nearly as harsh as what he had to endure.  I went thru it 4 years ago with 3 year old twins, it sucks but you will get thru it.  For all you know, chemo may not be recommended and this may not be a recurrence.  Hang in there.  When do you see your next doctor.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited May 2014

    ...i am just not sure why they have to take the expanders out? i had some nodes that were inflamed a couple months ago, and they just explained that the rest of the nodes are working harder to do the job of the ones taken out...i am so sorry that you are having this problem, and, i was wondering, are you taking tamoxifen or arimidex or anything?

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  • jujuga
    jujuga Member Posts: 4
    edited May 2014

    I ended up in the hospital for 7 days.  The issue was sycope or passing out.  No understanding as to why that happened.  But this makes matters so much worse since I'm no longer able to drive.   I'm home now and have surgery next Friday 2 days from now to take the expanders out and take out what the found.   Expanders contain metal which is not allowing them to do an mri or pet scan.  I'm exhausted and get out of breath doing nothing but walk. My biggest problem is getting to doctor now.  I'd just moved to my new house one day before my mastectomy and know no one.  Feel isolated and alone now more than ever

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited May 2014

    I am so sorry to hear that jujuga. i am not sure, but i think the american cancer society has a ride program for people who are alone and cannot drive, or maybe you can call the treatment center you go to, they may have a nurse navigator than could hook you up? oh i didnt know that you couldnt do mri's and scans with tissue expanders. i am glad you are home fromt he hospital, and hope they find out soon what the problem is for you, so they can fix you.. best to you, and a gentle hug.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited May 2014

    jujuga, so sorry to hear that you've had such problems. 

    I don't know what may be causing your syncope,  but isn't that a Nasty feeling?  I had that and they thought it was due to my diabetes. Nope. It was a right bundle branch block. They only found it after I went down at work. I had stress tests and wore a Holter diagnostic heart m on it or for 48 hours and nothing showed. Syncope is hard to dx. I ended up with a pacemaker so no MRI for me!  I am glad they will do those other tests for you. 

    Please take a deep breath. You will be able to handle whatever happens.  I'm betting that it is not cancer but if it should be it sounds like you have a great team. Waiting is always the hardest thing we do. So hang in there. Kathec is right. Call the AMC for help or If your hospital could have a Nurse Navigator or they may have a Social Worker who could perhaps help. 

    Hugs and Much love. 

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  • bluepearl
    bluepearl Member Posts: 961
    edited May 2014

    Shriners often have volunteers to drive you to and from appointments. Phone hospital social programs or even ask your doctor. NO ONE should do this alone. Can you find a breast cancer support group...even to phone? Some gals will even come over to visit. Please consider. Do not do this alone if can possibly avoid doing so!!!

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