How did you find out you had a recurrence?

Deblc
Deblc Member Posts: 479
edited July 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi Ladies, I am finishing up the last of treatment (radiation) and will be continuing herceptin until February of next year. My MO says that she will not do any follow up tests apart from yearly mammograms, unless I "have symptoms". This is very scary to me, as how am I to know exactly what are symptoms???!!! For instance, right now I am having intermittent pain in my remaining (right) breast, and don't know if this is port pain, or cancer pain or what it is.  My question is, how do you know when to ask for tests? How did you find out that you had a recurrence?  Did you have regular follow up scans after treatment, and if so, what scans did you do. Thanks!

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  • april485
    april485 Member Posts: 3,257
    edited July 2014

    Just bumping this thread up so hopefully someone who has had a recurrence can respond! Best to you Deblc!

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  • NancyD
    NancyD Member Posts: 3,562
    edited July 2014

    Follow the two-week rule: if any pain or out-of-the-ordinary occurrence lasts more than two weeks, see your doctor. 

    I might add, also look at your reports for areas that might be of a concern, or that can be ruled out now. For example, my PET/CT scans and subsequent bone scans for bone density have all mentioned the arthritic degeneration in certain areas of my body. I know where they are and I don't jump to a cancer-conclusion when they act up.

    If you were Stage 2 or 3, I would expect at least there to be some blood work done regularly. But even as a Stage 3 patient, that is all that I have done yearly. No scans on a regular basis.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2014

    My sister has regular scans. She has ILC, I have IDC. Hers tends to travel - mine does not. She had a MX- I had a lumpectomy. She is on Arimidex; I take Tamoxifen. I had 33 RADS - she had no treatments. Point being tumor markers, scans, MRIs depend on your BC and your ONC. 

    As for recurrences- good question. All of us have the fear factor for that. My ONC said if I have persistent pain for weeks to come see her not my regular doctor. Thing is some things like joint pain is a result of the meds we are taking so you are never quite sure. Issues with your breasts are a different story. When in doubt, go. Insurance companies are all over scans, etc and unless the ONC orders them, and sometimes not even then, they won't pay for them.

    I don't want them - just gives me something else to worry about. Besides ONC said I don't need them. 

    Diane 

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  • Deblc
    Deblc Member Posts: 479
    edited July 2014

    Thanks April for bumping, and ladies for responding. I also posted this question in the Stage IV threads, and as always, have received such good information 

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  • Basia
    Basia Member Posts: 790
    edited July 2014

    I found my recurrence on my own.  I felt something in the scar tissue and went to my PS and MO they both told me it was scar tissue, but something just didn't seem right to me so I went to my BS and she said it was scar tissue but because I was so concerned she needle biopsied it in her office just so that I can have peace of mine, turned out to be another tumor.  My point is you know your body better than anyone else. If something doesn't feel right, you have to be aggressive in pursuing an answer.  Don't wait for your doctors to determine something is wrong.  Listen to your inner voice, it knows a lot.

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  • Lcozad
    Lcozad Member Posts: 1
    edited July 2014

    Hi all. I was just diagnosed with Recurrence with Mets on the 18th. I am almost 2 years out from original diagnosis. Right now still getting the tests and ground work done to formulate a game plan. As to how I found out? A knot showed up on my forehead about a month ago. At first I thought it was a mosquito bite, until it got bigger and harder. Evidentially, knots like this are common in BC recurrence. I had a CT done to check out the knot and my ONC also asked for a chest/abdomen scan as I had reconstruction revision surgery scheduled for Sept - due to migrating implants. The results of the scan show node involvement, bone mets, and additional masses. I have a PET scan scheduled for Wed. Just praying things aren't as bad as they seem right now. All we can do is take things one day at a time.

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  • Deblc
    Deblc Member Posts: 479
    edited July 2014

    Dear Lcozad...so sorry to hear this. This was very enlightening to me as I never knew this could be a symptom. Sending prayers your way. This damn disease !!!!!!!

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