Recurrence and now many questions.....

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wrsmith2x
wrsmith2x Member Posts: 410
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I have had a recurrence which as far we know at this time is local.  Once they do the BMX with axillary node removal then I will know about node involvement.  I have had a dry cough for months so naturally I am concerned about mets to the lungs.  I have already had a bone scan to rule out bone mets - clear - and the insurance company doesn't want to pay for the PET scan to rule out the rest.  My question for ladies with lung mets....what were your symptoms, if any? 

I am not that concerned about losing my breasts but worry about lymphadema (sp?) instead.  Can it be kept at bay?

I plan on TRAM reconstructive surgery at time of BMX......what's that like? 

Any and all info would be greatly appreciated!

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2011

    Hi wrsmith2x,

    So sorry to hear about your recurrence.

    You mention a concern about lymphedema; you may be interested in checking out the main Breastcancer.org site and the Lymphedema Side Effect page, as well as the larger Lymphedema section for lots of information about lymphedema, including tips to avoid lymphedema.

    Also, there's some good info on TRAM Flap reconstruction here: http://www.breastcancer.org/treatment/surgery/reconstruction/types/tram.jsp

    You're bound to get a ton of support and answers to your other questions here from the ladies shortly.

    Hope this helps!

    --The Mods

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  • ma111
    ma111 Member Posts: 1,376
    edited December 2011

    Sorry it came back for you. I have lymphedema, it's not that bad to deal with. All my nodes were taken, then they did high dose rads, so I was in for it.

    Lung mets; pain in ribs and or when breathing deeply, dry cough. However, the cough you have can also be allergies or something else. A ct or x-ray can pick up lung mets.

    I don't know much about tram flap to help you there, however, did they offer you a DIEP flap?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2011

    Well, wrsmith, bummer!Frown Looking forward with you to only good news from further tests. (Waiting sure rots!)

    I hear you on the fear of lymphedema and wanted to offer you some resources. Best plan of all is to get a referral from any doctor on your team for a pre-op visit with a well-trained lymphedema therapist. S/he will take baseline arm measurements for future reference, give you personalized risk reduction tips, teach you a gentle lymph massage you can use prophylactically to keep your lymph flowing, and possibly fit you for a compression sleeve and glove or gauntlet (fingerless glove) to use for exercise, travel, or any unusual activities. Here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Here are two other sites with reliable lymphedema information:

    http://www.lymphnet.org  (see their Position Papers on Risk Reduction, Exercise, Air Travel, and Breast Cancer/Lymphedema protocol.

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    Please feel welcome to join us "sisters of swell" on the Lymphedma board here at bc.org. Lots of friendly women there who are happy to help our bc sisters lower their risk for this condition. 

    Hugs, prayers,
    Binney

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  • asmd
    asmd Member Posts: 178
    edited December 2011

    Just because the ins co doesn't want to pay, doesn't mean they won't pay. No is often their first strategy. You might ask your MO to contact them-dr to dr. It's usually a lower level person making the rubber stamp decisions, but persistence can go a long way.

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited December 2011

    I am sorry to hear of the recurrence and wishing you the best of outcomes ((HUGS))

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  • AnneW
    AnneW Member Posts: 4,050
    edited December 2011

    Sorry to hear about a recurrence. I had a second primary a few years after the first...

    Would it be presumptuous of me to suggest a different recon that what you're planning? If you have a bilateral TRAM, you will completely lose your recuts muscle to the breasts. That's your six-pack muscle. Without that, you will end up with back pain and possible hernias. Back pain for certain.

    Perhaps your surgeon was recommending the muscle=sparing free TRAM? Less muscle is taken, but still you lose muscle.

    There's a really good book out by Kathy Stelig called "The Breast Reconstruction Guidebook" that you can get from Amazon. She lays out pros and cons of each type of surgery very objectively.

    Binney gave great advice about LE. Being proactive will help you alot!!

    I can't believe yuo are being denied the PET!!! I presume you've had a plain chest xray? The cough thing would freak me out, too!

    Best of luck as you wade through this mess. Where in NC are you from? That's my home state!

    Be well,

    Anne

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  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited January 2012

    I'm in Rocky Mount....east of Raleigh.  Thanks for the info on TRAM....I am still researching everything to ask in Chapel Hill on Wednesday.  Hope to have it all pinned down by the end of this week.....what surgery, when, how much time off woork, etc.

    I'll check out the book too.  Thanks!  Namaste'.

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2012

    Wishing and praying for ALL CLEAR, amen!

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  • Granuaile
    Granuaile Member Posts: 113
    edited January 2012

    Hi, WR. So sorry to hear about the recurrance. I had 21 nodes removed with my mastectomy on March 30, 28 proton beam rads which finished Dec. 1, and have no signs/symptoms of lymphadema, though I'm being monitored for any change. I will get fitted for a sleeve as I'll be visiting family in Ireland over the summer, but my PT (works with lymphadema patients) told me my greatest risk for the condition would be if I were overweight. (I'm not.) Anyway, I wish you the best, and I hope you can somewhat put your fear of lymphadema aside.

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