when and how to test for progression?

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fishtown
fishtown Member Posts: 2

Hi and thanks for all the information here a truly remarkable and compassionate place.

I have been a lurker here since my wife (48) was diagnosed as stage 3 ilc 3 years ago. Bilateral mastectomy, chemo and rads. Now tamoxifen.

One thing that has been bugging me is how do they know its "only stage 3" when there were absolutely no tests to look past the stage 3 diagnosis?  once they found the cancer in 4 nodes they pronounced her stage 3 and said she would get the max tx. Not one test since. She is a patient at dana farber, so I never worried about her level of care but recently it seems her vitality is being sapped, has a little cough, nausea, headaches, pretty bad thigh and hip pain on the right side, fractured rib from a minor fall, seems like kind of a long list. She has as many days of feeling poorly as feeling good. Is it tamoxifen side effects? is it progression? Depression? Her onc doesn't seem concerned, but I guess I am. Looking back her onc steered us away from scans prior to chemo because he didnt think we would learn anything conclusive from them but would start a grim game of "whack a mole" biopsying every little dot on the scans. As frustrating as it is I think he was right at the time.

What should we do? How do you know when to do more testing?

Thanks

Fishtown

Comments

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

    Hi Fishtown, and welcome to Breastcancer.org! We're sorry that this reason brought you here, but glad you found us.

    Sure you'll get helpful responses from other members here but in the meantime we wanted to give you a warm welcome, and also some links to other forums and topics that you may find interesting, such as:

    We hope this helps!

    The Mods

  • everyminute
    everyminute Member Posts: 1,805
    edited September 2014

    Chances are  - if your wife were stage 4 at diagnosis, you would know that by now.  

    The "rule" in the cancer world is any symptom that lasts more than 2 weeks AND gets worse and not better....should be discussed with your oncologist.  I had tailbone pain for almost a year - but it never got worse and went away when I stopped trying to do Vsits in yoga.  

    I am a runner - marathons and ultras - and I get out of bed in am hobbling due to arimidex ... by the time I get to put on my shoes I have usually loosened up and I do try to take the first few miles slower.  When I am taking a break from running - due to injury  - my joints are very sore and I feel worse. If your wife is not exercising already, try adding that - it is amazing how much even brisk walking or biking (not necessarily running) helps.

    Her oncologist will likely do some scans if your wife is consistently feeling unwell or in pain that continues and gets worse.  

    Good luck!

  • mary625
    mary625 Member Posts: 1,056
    edited September 2014

    I find it very surprising that she did not get scans at diagnosis.  I did.  

  • ppplocke
    ppplocke Member Posts: 44
    edited September 2014

    An initial staging scan, usually PET scan, should have been done. That is sop where I live. Then you know and everything later is compared to that initial scan. I have never heard of anyone given chemo without such a scan. I'm in Texas. Maybe we do it differently here?

  • Kathleen26
    Kathleen26 Member Posts: 210
    edited September 2014

    I too am a little surprised that staging at Dana Farber did not include some scans.  It seems to me that if there WAS metastatic disease present to any degree, that could be conclusively found.  I understand what he's saying about things that are not conclusive, but stage IV tx plans start off differently than stage III, so I would think they would want to have a good idea that MBC was not present. 

    I had a chest x-ray, PET/CT, and a bone scan to see if I was already stage IV.   Ruling that out made me stage IIIC, and determined the tx plan.  Within the first year after finishing all my tx, hip and sacral pain that was later attributed to Arimidex resulted in another bone scan, and some lung nodules seen on the initial PET/CT were followed for another year with additional CT scans (none were every biopsied) until they finally resolved on their own.   Was that overkill compared to what your wife's onc thinks?   Perhaps it was.  Vigilence itself, although it made me feel better that the doctor was looking into my every ache and pain, is not going to prevent me from dying of breast cancer.

    General pain that moves around, and especially if it's in the joints could be a possible Tamoxifen issue.   Fractured ribs are fairly common after radiation.   My understanding is that metastatic disease pain is generally very specifically in a certain place and doesn't move around, and once experienced does not come and go.   I too highly recommend stepping up the exercise if she is not already active; it helped me tremendously.   If she has a pain or a cough or other specific issue that lasts for 2 weeks or more, her onc should be investigating it though, and ruling out MBC.   If he's not responsive to her, and she's unhappy about it, maybe she needs a different onc.  There are a number of different philosophies for how best to follow this disease, so why not have a doctor that follows one that fits what makes you both comfortable.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    I had a pet/ct, a breast MRI, a brain MRI for sure and maybe more at diagnosis time.   I'm not sure the oncologist's philosophy in not doing those scans.  One reason for doing them is to have a baseline for later comparison and the reason for the brain MRI is to rule out brain mets which are treated differently.  There may be advantages in not doing them, although I can't think of any.  Maybe to avoid scaring you to death. 

  • clariceak
    clariceak Member Posts: 752
    edited September 2014

    I was Stage IIIc at dx, and was sent for an pet scan and maybe a MRI to rule out progression.  Honestly, I felt like my onc was surprised I wasn't Stage IV considering the inter mammary node, vascular invasion and size of the tumor.

    Kathleen is correct.  Any symptoms which last longer than two weeks and worsen should be checked out.  Persistent and progressive are the key words.  

    I see my onc twice a year (after 5 years) and have labs done which include tumor markers at those visits.

    What type of follow up care is she receiving?

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

    Alexgram - the downside as explained to me with scans is the amount of radiation in the contrast for the scans. I have had many more scans than the average patient because I insisted on them and got some peace of mind, if only for the time being.  Kathleen has some good advice about the exercise benefits for pretty much everybody.  take care all

  • fishtown
    fishtown Member Posts: 2
    edited July 2015

    Sorry for the single post hit and run, and thanks for all your input.

    It turns out that she was rejecting her implant on the irradiated side causing all kinds of weird and disturbing symptoms. It was removed, she improved and scans performed. They came back clean.

    So far so good.

    Thanks again.

  • Momine
    Momine Member Posts: 7,859
    edited July 2015

    Fishtown, thanks for posting and so glad to hear that there was a good ending to the story.

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