When does mets show up? Months or years?

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I have read a lot in here now, and my understanding is that mets, if they come, take some time to develop, like years. Can it come in a few months??

I had a scan shortly after diagnosis, which was clear. I understand it is rare, but can mets present some months after with a tumor that was not all that aggressive? My doctors says it is very unlikely, and all of them addresses this to muscle tension and stress. Athough I will get a new scan because I have back pain, as they say mostly to put my mind at ease. 

But if not mets, has anyone experienced back pain due to the treatment, which has continued for months? How does arthritis feel? So stressed and really worried...at a bad place right now. 

Comments

  • pupmom
    pupmom Member Posts: 5,068
    edited March 2019

    Unfortunately there is no time frame. Some people were more than a decade out and they developed recurrences, including mets. You are recently diagnosed and your anxiety is still high (been there, done that). Try not to worry about things you can't control, and like your doctors say, the possibility of you having mets is extremely low. The anxiety and worry do get better with time! Soon you'll hardly think about cancer!

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited March 2019

    Your signature doesn't show your treatment. Most of the time, we get all kinds of side effects from treatment that cause pain. Estrogen inhibitors can cause joint pain. Chemo can cause neuropathy. etc, etc, etc.

    As for your question, the answer, unfortunately, is... months or years.

  • Moag
    Moag Member Posts: 12
    edited March 2019

    Thank you so much Pupmom . It is just so hard not to think about this when I have this back pain. I do work out, but still it is not disappearing. I am so frustrated and living in constant fear, this is like torture. My doctor think I might have fibromyalgia, I cling to that and it does make sense, I have had symtoms for this for many many years. Maybe my treatments has worsened it. 

    I have three kids I want to be here for, my youngest is only four. Sorry about such a negative thread, but right now I am in a bad place mentally. Has someone else had back pain that lasted a long time just after finishing treatment, that were not mets?

  • Summerspring
    Summerspring Member Posts: 37
    edited March 2019

    not saying this to be negative but my Mets showed up 9 months after end of treatment and 3 months after clear scans. I think I caught them early though since it is just in my lymphnodes. :( I’ve also had other pains that have been absolutely nothing. Always best to be vigilant I think. Also I am in the minority I believe.

  • Moag
    Moag Member Posts: 12
    edited March 2019

    Thanks Seachain and Summerspring. I haven`t written much here before, but think I managed to update the treatments. Yes, I am on Letrozole which I know can cause joint pain, so it can be an explanation. And I had my ovaries removed due to Brca2+ discovery. Maybe the estrogen deprivation is causing some problems.

    Summerspring, did you just have mets in lymph nodes in axilla? That is still considered regional mets right? Hope the best for all of you going foreward Hug

  • pupmom
    pupmom Member Posts: 5,068
    edited March 2019

    Moag, about a year after diagnosis, I developed excruciating pain in my thighs. Long story short, turned out I had hip necrosis and required two total hip replacements. Initially it was misdiagnosed as spinal problems, and I also had an unnecessary spinal fusion, UGH. My husband and I believe the necrosis was due to cancer treatments, but docs say no, and that the problem was from unknown source(s).

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited March 2019

    Moag, I have rapidly advancing osteoarthritis from the AIs, with a ton of issues because of it. I tried all three, they all gave me excruciating pain, the oncologist took me off of them after 4 years because of it. You should still push for an MRI, for peace of mind. Generally the rule is, pain that doesn't go away in two weeks warrants further exploration,especially pain that is consistent, doesn't come and go.

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2019

    First, never apologize for feeling like your posts are negative. This is the place to voice all of those fears and thoughts. We get it. If it was not for this safe place to vent, I am sometimes not sure where I'd be...definitely in a darker place.

    More than likely, the pain is related to arthritis or such, but you need answers, so push for them. Do keep us posted.

  • Summerspring
    Summerspring Member Posts: 37
    edited March 2019

    Hi moag, it is the intermammary nodes. A small one in the axillary. The lymphnodes lit up on the PET and the biopsy showed tnbc again. They told me metastatic breast cancer. :( I had stage 1, clear margins and no node involvement in November 2017. I’m still shocked.

  • BadLuck
    BadLuck Member Posts: 114
    edited March 2019

    I'm a bit confused about the meaning of mets. Never heard of it. I had early stage 1B, grade 1, tumor 3.6 cm but with the lines from the tumor a whopping 5.5 cm was cut out, had the rarest form of breast cancer but most easiest to cure they told me. Also told me no chemo required, had left breast lumpectomy, 16 days whole breast radiation, 2 lymph nodes removed. Margins were clear. Estrogen & progesterone intensive positive, her2- finished all the surgery & radiation by Oct 2018. Started hormone Anastrozole in Aug & my joint pain is crippling from it & I recently read an article from this blog about a link between Anastrozole & diabetes. My A1C shot up to 6.4 last month! Do I'm on my way to getting diabetes due to a hormone drug to keep me from getting cancer back. Yes, if your taking Anastrozole you are at higher risk of getting diabetes! My back & hips are in so much pain. My left breast still hurts. They won't give me a mammogram till this June. I hope that cancer Didn't spread. Still worried it spread

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2019

    For badluck, we use the term 'mets' as shorthand for metastases, meaning breast cancer that has spread to distant sites in the body - most commonly bone, lung, liver or brain. Some refer to it as stage IV.

    A mammogram will not detect this kind of disease but your doctor will ask about cough/shortness of breath, frequent headaches or dizziness and perhaps do blood tests to follow enzyme and calcium levels.

    Aromatase inhibitors can certainly have the side effects you mention plus increase cholesterol! I found tamoxifen much easier to tolerate. To minimize joint pain, the usual suggestion is to exercise which will also help keep diabetes away by controlling weight. I like to go in a warm water pool for my work outs...

  • Moag
    Moag Member Posts: 12
    edited March 2019

    KBeee and you all, thank you so much for answering. I read all the posts several times. 

    I keep it together as much as I can, but as you all know this ride is a long rollercoaster. I have been to several doctors and all are so confident this is due to musclular/joint issues, which I really have issues with. And I want to believe them of course. I did do a scan last summer, during my AC, and this was clear. Seems it is very unlikely I should have mets in my spine now considering what they call a "not so aggressive cancer". They say no, it doesn´t happen like this for me. KI score was 31, so I am not sure...And I do feel scared about having ILC, I think I have read too much and panicing. 

    The thing is I can get a new scan, but not MRI now since I have expander with metal. When they are replaced with the final implants, I can do that. The scan I can get now is the one where I must drink the radioactive stuff, I am a bit reluctant being brca2+. So many thoughts and frights. In a way I want to believe it is muscular and continue working out, using hot water etc, and continue the positive recovery path...

    Summerspring, I am not a doctor, but it seems to me you do NOT have what is considered mets to other parts of the body, when it is in intermammary node/axilla it is still considered local/regional disease. You need a bit more treatment, but this is curable! Hugs



  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited March 2019

    I had a macro-met in the sentinel node. 3 mm tumor. Still considered stage IIb.

  • gb2115
    gb2115 Member Posts: 1,894
    edited March 2019

    I also had a macro met node, not gonna lie, I worry cells snuck out and are dormant somewhere. Can't do a darn thing but take the tamoxifen.

  • SnowFlower100
    SnowFlower100 Member Posts: 5
    edited March 2019

    Hi Moag,

    I can totally understand your feeling as I am now experiencing the same. I was diagnosed in Dec last year and had my operation done 4 days after the diagnosis. Did a whole body bone scan after the surgery which was clear. I did not do chemo as my oncologist said it won't do me any good (Oncotype score 20). Right now I am in radiation treatment (4 weeks done, 3 more weeks to go). I have lower back pain since 2 weeks...never felt this kind of pain (maybe the anxiety has worsen it in my mind) before... I pushed for a lower back & pelvis MRI and will get the result next Monday. Now extremely frightened and nervous... I am still "new" to this Cancer fight and thus emotionally still vulnerable and sensitive to any little discomfort in my body.

    I think doing a new scan for your would put your mind in peace. And perhaps consulting helps with the anxiety. I hope it will turn out to be fine for all of us!

    Best,

    SnowFlower


  • Moag
    Moag Member Posts: 12
    edited March 2019

    I will get the bone scan in a few days. Hello extreme anxiety...again. But I guess I have no other choice than to tackle the beast, if anything is wrong it is better to know (I hope).  

    SnowFlower, all our treatments, meds etc has sure given our bodies a huge hit lately, most likely it has to do with that. So sorry for all of you out there dealing with all this And thank you so so much for the support.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited March 2019

    I was 6 years out, developed some major lower back pain. Waited about 2 weeks, didn’t go away. PCP and I thought Mets. He sent me for MRI. Turned out to be a lot of bad things, BUT NOT CANCER. Push for the mri, you will feel better knowing what is, or isn’t going on.

  • blah333
    blah333 Member Posts: 270
    edited March 2019

    Stress can cause back pain. I have some pain in ribs, but it is just inflammed cartilidge. Chondrosis. Even though I only had DCIS, I have had similar worry (or paranoia)

  • Moag
    Moag Member Posts: 12
    edited March 2019

    Hi all, 

    Just wanted to update that I have done a bone scan, and it was clean! Not sure what exactly causes my pain, but whatever it is I am feeling soooo relieved right now. Will continue to work out, do yoga, stretching etc and hopefully it will get better with time.

    Nice for all to know that long lasting back pain does not need to be mets.

  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited March 2019

    Congrats! So happy for you!!!

  • JaBoo
    JaBoo Member Posts: 520
    edited March 2019

    great news and thank you for sharing!! I hope your pain resolves with exercise soon 🌷🌷

    My friend, who had similar diagnosis as me but with more node involvement, had terrible back pain too... she couldn't even walk properly, was not able to sit... she was so worried! Fortunatelly her doctor made a scan soon and personally showed and explained her the results - absolutelly nothing there, not even a herniated disc. Apparently muscular causes. Her pain eased gradually and now she's a year without it. (and cancer-free too)

  • Moag
    Moag Member Posts: 12
    edited March 2019

    Thank you, my doctor mentioned something about the connective tissue. All doctors seems to agree it has to do with me being stressed out. I can certainly agree to that. It is just so hard to believe that my body has such a response to that, but I guess it is possible. Or it might be fibromyalgia, worsening of it after all treatments, as my primary doctor has indicated...well, whatever it is I am relieved.

    Wish good health going foreward for you all Medicating

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2019

    Great news on the clear scan!

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