• Just wondering....

    Asked by Roses4ever on Saturday, June 21, 2014

    Just wondering....

    How do you know if your breast cancer has spread? What symtoms or what tests do they do? I was diagnosed w/ BC last Oct. I've had a double mastectomy and 20 lymph nodes removed. 2 of which were positive. Stage 2b. I'm sure we all think about it returning, but on top of neuropathy my bones really ache bad. Is that any reason to be concerned? It seems like they should be doing tests or something to check. Thanks!

    24 Answers from the Community

    24 answers
    • Micki's Avatar
      Micki

      Hello,

      It is normal to fear recurrence of breast cancer after treatment ends. It is important to note your symptoms and questions and have a conversation with your oncologist about them. You can also ask your doctor to help you develop a survivorship care plan, which includes routine follow-up tests and consultations with the doctor so that he/she can periodically monitor your situation for recurrence. Here is more information for you from the ASCO (American Society of Clinical Oncology) patient website, cancer.net:
      http://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/follow-care-breast-cancer

      I hope this is helpful.

      All the best to you!

      over 5 years ago
    • KLC's Avatar
      KLC

      Hi Roses. I see that you are ER positive. . .are you on Tamoxefin?. . .that can cause bone pain . . .

      over 5 years ago
    • Roses4ever's Avatar
      Roses4ever

      No. I'm going to be on femara but haven't even started yet. I've had the lupron shot twice now but the pain was way before that. I'll be starting the femara next month. Thanks for asking.

      over 5 years ago
    • KLC's Avatar
      KLC

      Your profile journey isn't complete, so I can't see if you had chemo, but, I'm assuming yes since you say you have neuropathy. Note: some folks get residual bone pain from chemo (some up to two years after completion).

      over 5 years ago
    • Roses4ever's Avatar
      Roses4ever

      Still working on completing my profile..Yes I did 4 rounds of chemo and have severe neuropathy. Good to know it can also cause bone pain. My bones hurt so bad some feel like there broken. The doctor has put me on some meds so I'm feeling some relief. Just wondering how people know if it spread to there bones.

      over 5 years ago
    • KLC's Avatar
      KLC

      I think they do Pet scans. . .I was also diagnosed Stage 2B and had 3 positive lymph nodes with my sentinel biopsy (out of the 4 taken). . .they went back in and did an axillary dissection, took 17 more - all negative. In both our cases, there would be no reason to suspect it spread to the bones. If you feel strongly about being scanned though, speak to your Dr. Unfortunately after a cancer diagnosis every body ache makes you worried. . . .good luck Roses ! ! : )

      over 5 years ago
    • Roses4ever's Avatar
      Roses4ever

      Thank you so much KLC! It's been great talking to you!

      over 5 years ago
    • lilymadeline's Avatar
      lilymadeline

      You should be having your tumor markers checked every month at this point, at the most every 3 months. You should also be getting an MRI of your chest after treatment is completed and also probably every 6 to 12 months for the first few years and then every other year or so. A PET/CT will show any active cancers in other parts of your body so that is a great way to check to see if it pops up in any other areas as well. So yes you should be having follow up treatment because unfortunately breast cancer frequently comes back and it doesn't show any symptoms until it is stage IV- which is too late to cure but can be treated like a chronic illness. So again it is very important to be closely monitored if you had lymph node involvement. Talk with your oncologist about your follow up plan, but if your current oncologist but if he or she tells you not to worry about follow up- then immediately go to another oncologist!!! The problem is that insurance companies fight the doctors to get approval for many follow up exams and doctors get lazy so they just let it go rather than stay on the phone for hours during office hours when they need to see patients- who wants to wait on the phone for hours waiting for approval from an insurance company? The time needed is a terrible idea and unfortunately tragic for a few patients because again symptoms don't show up with BC until it is stage IV. If I were you I would seek treatment at a cancer center and not a community hospital, mainly because cancer centers have more clout and it is easier for an oncologist to get approval from an insurance company if he works at MD Anderson over a smaller community hospital- it is awful and not fair but it is what it is and cancer patients just have to do their best to be proactive and get the best treatment. Doctors are terribly overworked in general now, due to all the red tape and paperwork involved plus most have too many patients. So the most pushy patients usually get the best care because the others can simply fall through the cracks.
      But after my rant- to answer your question about the bone pain- that can be caused by hormone blockers ( take a couple of Aleve daily to help ) or it could be caused by chemo or other cancer drugs. Exercise daily and that will help! You have to push yourself at first but it really will help you with the bone pain. But you could get a PET/CT to eliminate any possibility of bone lesions. Although you probably are fine, it is the way to check it out. and Please talk this over with your oncologist! Write down all your questions and make sure that you get good understandable answers!!!! Good luck and God bless!!!

      over 5 years ago
    • Roses4ever's Avatar
      Roses4ever

      Lilymadaline, thank u so much for your great insight! I'm definitely going to ask for a follow up plan. I have great insurance too. I appreciate u taking the time to write me. Have a great night! God bless!!!

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      Lily just about said it ALL.....
      Make sure you start a nutritional Protocol to help the cause.
      We can be Part of the Team.
      Barry

      over 5 years ago
    • Carool's Avatar
      Carool

      After the initial treatment and the subsequent taking of Tamoxifen, etc., if ER-positive, there is NO other treatment to PREVENT metastasis. Therefore, there is no great urgency in finding a metastasis (although of course it's still better to know early and begin to try to treat it). Re breast cancer markers - I was told in December by my nurse practioner at Memorial Sloan-Kettering that they no longer do blood tests for breast cancer markers, as those tests have proven to be unreliable. Best to you -

      over 5 years ago
    • barryboomer's Avatar
      barryboomer

      There are Supplements like curcumin and Green Tea extract that stop angiogenesis. Check it out.
      Also Keep your blood sugars Normal ALL DAY....

      over 5 years ago
    • pugmom's Avatar
      pugmom

      I was stage II, IDC, SN neg in OR but pos on final. They took 4 nodes in OR, only SN pos. New study out of MD Anderson/Sloan Kettering showed it didnt make a diff in survivorship so they didnt go back in. I have a lot of discomfort in R axilla
      Treated at UCSF and they dont do scans anymore for recurrence. The radiation from CAT/PET scans is a huge amount. I have some bone pain as well and worry about recurrence but hope for the best

      over 5 years ago
    • jujuga's Avatar
      jujuga

      I had a hysterectomy to eliminate estrogen/progesterone production.

      over 5 years ago
    • Teresain's Avatar
      Teresain

      Good morning Roses! I'm not sure how sensitive it is, but I know a simple serum calcium level will show elevation with bone metastasis. Also might ask about a vitamin D level. Insurance shouldn't buck on these common tests. Praying for us all to have increasing freedom from fear!

      over 5 years ago
    • moreorless' Avatar
      moreorless

      We all have great insurance plans until we start to file claims for cancer. Then with Medicare tricare or VA it seems we have to keep on resubmitting claims or getting told that is not covered or it is experimental.

      over 5 years ago
    • Nonnie917's Avatar
      Nonnie917

      I am fighting my insurance company now on getting a breast MRI. It's been two years since my double mastectomy and they don't feel I need it that I should have a mammogram. I can't have a mammo because of the implants and DIEP surgery I had before the implants that failed. They are still there sewn to the chest wall and a mammo can pull them out. So the fight goes on. Stupid insurance companies. Who died and left them boss anyway? Makes me so mad. I don't have bone pain because I didn't have any treatment done since I was a stage 0 and had clean nodes and margins. So I am not much help there.

      over 5 years ago
    • baridirects' Avatar
      baridirects

      You've gotten some excellent advice here...I can share a bit of my story, which illustrates the value of consistent followup care.

      I was diagnosed with Stage IIIc Invasive Lobular cancer on the left in February 2013, and finished my primary treatment, including a double mastectomy without reconstruction, 6 rounds of chemo, and 36 external beam radiation treatments, right before Thanksgiving. Baseline scans and tumor markers were done at that time, and all was thought to be well - I was put on Tamoxfen and encouraged to live my life. I was due to start a new job in March of this year, and went around to see all of my doctors in preparation for that...part of those visits included a set of blood work, as I was about due for my quarterly followup at that time. I had no symptoms whatsoever. I soon received a call from my oncologist, saying that my CA 15-3 was elevated, and he felt that there was something occult going on. After being scanned from stem to stern, it was discovered that I had bone mets in my shoulder, my thoracic spine, and 3 of my ribs. My medications were immediately changed, and I'm happy to report that my tumor marker is on the way down.

      While there is no evidence to suggest that finding mets "early" has any effect on the mortality statistics, I feel extremely fortunate that my progression was caught before I had any pain, and while the extention of the metastatic disease was still relatively limited. If it hadn't been for the proactivity on both my side and my oncologist's, it would have potentially been another 3 or 4 months before we discovered the problem, during which time I would have been on medication that was ineffectual in my case.

      I am with Barry - this must be a team effort, with you committing to do all you can to support and enhance your oncologist's treatments. Make sure you understand what the ongoing plan will be - how often you will be checked for blood levels, how often you will be scanned, and how often you will be seeing your oncologist. In addition, make sure you are aware of what symptoms of metastatic disease you should be aware of, so you can monitor yourself. Above all, don't be afraid to ask questions if you are unsure - that's what your health care team is there for.

      Namaste,
      Christine

      over 5 years ago
    • glam's Avatar
      glam

      ask your doctor the best method to keep you checked....here with me what they do are scans and blood tests every three months (I am stage IV B survivor)...when I reach the two years cancer free they will move to every 6 months exams....wishing you all the best...God bless you and continue blessing all of us

      about 5 years ago
    • dianalynn's Avatar
      dianalynn

      The best way to be certain is a pet scan. Sending healing vibes your way!

      about 5 years ago
    • Roses4ever's Avatar
      Roses4ever

      Baridiects, Thank you so much for sharing your story with me! Now I'm for sure going to ask about a follow up plan especially since I have a new onc now who listens to me.
      I just joined this board 2 days ago and I already feel so connected and loved. Thank you all for your replys. You guys are great!!! God bless!

      about 5 years ago
    • Connieguth's Avatar
      Connieguth

      I was originally diagnosed in 2009 and went through chemo and radiation. No tests were done to find recurrence. Walking became difficult for me. My knees and hips felt like they were grinding on each other. I have a long history of knee replacements in my family and talked to my regular family doc about this and she told me to get a x-Ray of my knees and they found bone mets. That was in August 2013. When they did the PET scan they found my left arm was high risk for fracture and I was scheduled for surgery and they put a rod in my arm. Currently they are watching my hip and thigh but I'm being treated with zometa to strengthen my bones. I've had my ovaries removed and am also taking aramidex and get a faslodex injection once a month to eliminate estrogen. Now they check tumor markers monthly which are slowly dropping. I also have liver mets.

      about 5 years ago
    • MeggiOhio's Avatar
      MeggiOhio

      Dear Roses~

      My doc does CA blood tests and bone scans. I am 24 years out from my original Stage IV dx, and 8 out from my unrelated 2nd dx (Stage 1). I've been followed quarterly for the entire 24 years, and have had bone pain and neuropathy from chemo, but most recently from shingles. My immediate fear when I had the new pain was that I'd had a recurrence, but it was "only" shingles.

      Best of health to you.

      about 5 years ago
    • walkingon's Avatar
      walkingon

      The best news for you is that you have a "new onc who listens to me." Reading these answers, you probably see that there is a very diverse approach to looking for mets. My health system believes no scans or tumor markers or other regular tests beyond 4-6 month follow up physical exams are necessary (unless you are already Stage 4) unless and until you have symptoms -- because nothing prevents metastases and finding them a few months early (before symptoms) does not improve survival. Extra testing has emotional and dollar costs -- and extra x-rays aren't good for you either. That said, my wonderful onc very carefully explained what "symptoms" -- shortness of breath, worsening bone pain, persistent dry cough, etc. are worrisome and positively insisted I call him with any concerns at all. I found his caring attitude to be the very best therapy for anxiety,, and I am certain has made me more relaxed about recurrence. I know that if I have worrisome symptoms he will explore them with me -- and I worry far less because of it! No additional testing could give me that peace of mind.

      about 5 years ago

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