Scans how often & what symptons do I watch for?

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sharebear
sharebear Member Posts: 332
Thought I was done with my taxotere today. Scheduling mixup. I have one more next week, what a bummer that was!

My Onc. said he would do chest x-ray, CT scan, and bone scan in 3 weeks and then I would have to see him every 3 months for at least 3 years and we'd see how often after that. I've had a bilateral mastectomy and complete hysterectomy. Since I'm BRCA1+ plus trip neg. he told me we would be vigilant about checking for bone, lung or liver mets. Before surgery I was clear. He also told me he was planning on staying in practice for the next 40 years and he plans on me staying around that long. So we could stay together the rest of our lives (We're both 44) In other words, I'll be seeing him in some form forever. He was also my Onc. 12 years ago when I was 32.

Also, without thinking about it everyday, since I'm no longer looking for lumps, what am I looking for? What does a liver, bone, or lung met feel like?

What has everybody's after care been in this trip neg world?

I knew what to do with breast cancer. What do I do while waiting for mets?

Sharon

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  • fd411
    fd411 Member Posts: 398
    edited September 2007
    Sharon,

    Some people don't have symptoms when they are diagnosed with mets. Personally, I think it's really important for us triple negs to get some kind of scan every so often.

    I started out with the every 3 months schedule after treatment. That lasted only 3 months.

    Then I had symptoms that I thought were radiation or truncal lymphedema related. So I went to the surgeon's office complaining of sharp pain in my shoulder blades, back and along the side of my rib cage when I took deep breaths, I had a rattling sound at the bottom of my diaphragm when I breathed, I had shortness of breath that my asthma meds wouldn't touch, but no wheezing. And I had the urge to cough, as if something was stuck somewhere. I though I had fluid build up somewhere or pneumonia from radiation. Turns out I have lung mets and mets other places in the chest area and pleural lining and the nodes in that area and stuff.

    I have skin mets too and at first I got these little bumps on my scar line. It turned into a dark raised rash and spread really quickly all over my breast. Then it started hurting, burning and itching like crazy.

    I did get lumps also with mets; in nodes on the non bc side under my arm and in the neck.

    So far, I've been getting scans everytime my symptoms get worse.

    Don't wait for mets; hopefully it'll never happen to you. Just enjoy being NED! I really enjoyed my brief dance with it

    Ferne
  • sharebear
    sharebear Member Posts: 332
    edited September 2007
    Thanks Ferne,

    I went 12 years w/o a worry. Back then they said if you didn't have a reoccurrence after 5 years you were curred. I didn't know the term trip neg or BRCA1+. I was later tagged with with BRCA1 and this year tagged trip neg. We now know so much more about the cancer that we didn't 12 years ago. I'm a very optimistic person. My Dr. tells me its part of why I do so well. I just had this feeling tonight that I use to know what I was fighting and all of the sudden I don't.

    I guess my mammograms have just been replaced with scans. Just a different type of test. The tests will be there forever just like the mammograms would have been if I still had my old breasts. I just worry because the mammograms did not pick up my tumors, I found them during my own self exams both times. I had the mammogram in October- clear. January - felt lump. In 3 months it was there. If I can't feel my lungs, liver or bones, how will I find it?

    Concerned,
    Sharon
  • fd411
    fd411 Member Posts: 398
    edited September 2007
    So after 12 years you had a recurrence?

    CT scans seem to work well in finding the problem areas for me. But my scans were only when I had symptoms.

    I'm thinking if scans are done at regular intervals, they might pick things up before you have symptoms. Problem is that lots of doctors don't like to do scans until you have symptoms. But it sounds like your onc wants to be proactive.

    Ferne
  • sharebear
    sharebear Member Posts: 332
    edited September 2007

    Yep. 12 years cancer free. My mammogram missed it in October but I felt it in January. They did another mammogram, ultrasound, biopsy and there it was. So after a bilateral with tram flap reconstruction. 4 dd of AC and now 11 of my 12 weekly taxotere, I'm almost done. I am only 44 years old so chances of mets some time in my future are pretty high. I guess I just have to put it behind me and let the drs. worry about the rest.

    Sharon

  • fd411
    fd411 Member Posts: 398
    edited September 2007

    Wow, 12  years is a long time cancer free!  Was that cancer triple neg as well? Hopefully it'll stay away forever this time.

    I'm 42 and didn't expect mets so soon after my initial treatment. It was quite a surprise. I figured it's come back someday maybe, but not 4 months out from treatment.

    Ferne 

  • Indigoblue
    Indigoblue Member Posts: 274
    edited September 2007

    The scans are a joke as far as I am concerned.  Your have nothing but a few treatments which are not even directed to the hormone negative dilemma.  No one , doctors, care or know anything about what it is we endure with subjective treatments, they have no idea what they are treating us for; so many dipictions and receptors, daily there is a new conception and daily another discovery the concept was ill-conceived.  So, we take these drugs, hoping we can last a few years...

     The diphead doctors have no idea what they are doing with injections of poison, dissecting our breasts and killing our cells.  Lies, viedotape and no compassion...

    '

    That is the dilemms of being treated as a hormone triple negative "I don't know what the hell to with you" is.

    Indi

  • Indigoblue
    Indigoblue Member Posts: 274
    edited September 2007

    I feel horrid, horrider, and horridererrrrrr, each day. Mamograms digital test sent a lovely note tellall that my breats were just fine.  I know there is a gigantic hematoma leftover, nodules, calcifications.  Is there a reason these radiotoidioots lie to us? 

    The slaways being lied to isyndrome, has been "enough".

    When was I enscribed as an idiot?

    Hey, stupid, ignorant 'K' female germ...

    Am I angry?? yes. lies, lies, lies, lies and more lies. so flipplin' sick from the stinkers who have the audacity to refer to themselves as "health providers" when is reality they are mostly "health liars and conartists who look upon the human species, particularly women. as nothing more than a spit on the sand on a beach about to be washed away by the waves and lost to the drams of the tide , moon and timel

    Indi....annoyhed

  • Indigoblue
    Indigoblue Member Posts: 274
    edited September 2007

    I want editing baclQ

  • Ovrtrainbo
    Ovrtrainbo Member Posts: 19
    edited September 2007

    Please help me.  I just finished Radiation today!  Stage IIA Triple Neg diag 12/13/06.  Had 12 total ACT and for the last three weeks I've been complaining of pain in shoulder and arm.  So my oncologist sent me for PT and the PT is not helping at all.  i finally told the doctor on Tuesday something is not right I have such a high threshold for pain and this pain is terrible.  So Next thursday I am having a PET Scan again, had a Bone Scan in Early August and it was negative, I will be having an MRI and CT Scan also.  Please give me all the words of wisdom and support you can.  Please email if you would like to ovrtrainbo@aol.com

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