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  • Lexica
    Lexica Member Posts: 259
    edited October 2019

    vampeyes, I'm curious about this, too. I had a negative MRI and bone scan, but the lower back/hip/spine area pain persists. That makes me feel better until I read about how many others have negative scans only for it to show up as mets months later. Is this back pain just the new normal? I hope so, I guess.

  • ucfknights
    ucfknights Member Posts: 102
    edited October 2019

    how did you ladies find your Mets?

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited October 2019

    ucfknights, my liver mets were found accidently when I had a CT to check for pulmonary embolism..trouble with shortness of breath.

    I did not have a PE, but DID have tumor emboli in lung arterioles which are not seen on chest xray, CT or MRI scans. A VQ scan confirmed it. That was a gift from my liver mets!

    I also had a T12 met, but I like to pretend it didn't exist.


  • Rosie24
    Rosie24 Member Posts: 1,046
    edited October 2019

    Ucfknights, I had a Ct scan ordered by my breast surgeon since I had at least one positive axillary node. I was set to start adjuvant chemo but with mets discovered I started Ibrance/Letrozole instead.

  • trinigirl50
    trinigirl50 Member Posts: 343
    edited October 2019

    vampeyes and lexica

    I had lower hip and back pain. in 2017 I attributed it to bursitis. I had bone scans etc I have osteoarthritis. I did all the things you're supposed to do. I eventually had a cortisone injection in my hip. It temporarily resolved things. My back and hip continued to hurt on a off (mostly on) for a year. I finally noticed that it had gone, what made the change for me was I had stopped sitting at my computer for most of the day. I knew sitting was part of the problem but it wasn't until I was actually away from the computer for nearly six months that I noticed the huge difference. I still get the occasional twinge, but the constant aches and pain has gone.


  • Lexica
    Lexica Member Posts: 259
    edited October 2019

    wow trinigirl - I suspected that might be an issue, but still. Thanks for the input. I'll put in a request for a standing desk...

  • Mallory35201
    Mallory35201 Member Posts: 12
    edited October 2019

    My mom had no MRI as of yet but Thursday doctor already put her on chemo pills and supposed to give her a shot ( forgot name)to help strengthen bones. She said they believe that’s what it is so as a precaution their just going to go ahead and prescribe it. I’m guessing they noticed something on previous PET scan but is it normal for a doctor to do that without a MRI. The doctor isn’t even sure what it is as my understanding

  • Simone80
    Simone80 Member Posts: 988
    edited October 2019

    Hi Mallory,

    I'm guessing they put her on ibrance with letrozole. The shot is probably xgeva. I don't think I've ever heard someone being labeled stage 4 without scans. However, I have also heard MOs are starting to prescribe ibrance to high risk patients. I'm not sure what to think.

  • vampeyes
    vampeyes Member Posts: 1,227
    edited October 2019

    Trinigirl, thank you for your response. It's nice to hear that it is likely the osteoarthritis and nothing more serious, the pain just seems to be getting worse no matter what I do to try to help relieve it. My feet and hands tingle, thankfully not all the time. I think maybe I best be calling the physiotherapist on Monday!

    Lexica - thank you for your response as well. It's nice to hear that I am not alone and if we are all feeling the same maybe it's nothing too serious.

    I can't tell you how much I appreciate this site since my diagnosis, I have made friends, found tips and tricks to dealing with the SEs of Tamoxifen and had wonderful women/men there to answer questions. Thank you to all. You are wonderful,

    HUGS to all.

  • mpv459
    mpv459 Member Posts: 114
    edited October 2019

    I was diagnosed in March 2019... I had a pet scan which showed clear except for my breast and nodes. April 1 I had SM of my right breast along with aux lymphnode dissection. I am stage 3 with 31 nodes removed and 14 had cancer. I had 4AC and 12Taxol. No mets symptoms, bloodwork good and lymphnodes okay to the exams. I went to see the radiologist and they ordered a pet scan. I have been so worried about what it might show. Can mets occur while you are in chemo after surgery?? Any thoughts would be welcome.

  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2019

    I have had a cough since the beginning of October, figured it was fall allergies. It hasn't gone away and seems to be worse. I have my check up Wednesday with MO and I always get a little squirrelly, but I'm officially worried now.

    Can anyone describe how mets to lungs was dxd or symptoms?

  • Anotherone
    Anotherone Member Posts: 633
    edited October 2019

    persistent non productive cough which I felt was not coming from the throat . No pain or discomfort with it whatsoever otherwise - you know , like when you feel some rattle in your chest or burning sensation on coughing a lot. Spontaneous and every time in deep breath. Feeling as if I could not fill my lungs with air properly- not tightness or pain, just as if it was not getting to the bottom of the vessel where it should. Tachycardia- I checked my pulse at rest and it was almost 90 ! To compensate for underdelivery of oxygen I guess. I was getting breathless on exertion- could not finish a game of squash.

    If it is getting worse I doubt it is cancer. Good luck with your tests .

  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2019

    Thank you for your response. Why do you say of it seems worse it probably isn't mets? I see MO in the morning so I guess we will see what he thinks.

  • Anotherone
    Anotherone Member Posts: 633
    edited October 2019

    Because it would imply that it is something quickly changing ?.. which cancer would not be ...

  • Twinklemom
    Twinklemom Member Posts: 7
    edited October 2019

    I just finished treatment for my Stage 1 breast cancer at the end of May. I felt like things were starting to get back to normal, and even went to Mexico for 4 days with my husband. But since I've been back (about 2 weeks) I've had horrible headaches, been way more tired, and just generally out of sorts. I feel like I shouldn't worry about metastases so soon, or maybe at all because I was only Stage 1 with no node involvement, but I can't seem to help it. Should I be worried, or write it off as stress?

  • Anotherone
    Anotherone Member Posts: 633
    edited October 2019


    why should anyone ever be worried ?

    Make a plan of action (change lifestyle, see doctors or whatever else) , stick to it and do not worry in the meantime.

  • Artista928
    Artista928 Member Posts: 2,753
    edited October 2019

    Anyone stage 4 on regular Medicare? Wondering what the coverage is for pills and iv. If it doesn't cover some chemo meds, what do you do? Are you hosed?

  • flashlight
    flashlight Member Posts: 698
    edited October 2019

    Hi Twinklemom, You didn't have your history typed in. Are you on Tamoxifen or Letrozole? Did you have chemo or radiation? You might just be still recovering or feeling the side effects of the meds. Everyone worries from time to time. Exercise does help. Good luck to you.

  • Twinklemom
    Twinklemom Member Posts: 7
    edited October 2019

    Sorry, flashlight, I didn't get the info put into until after I posted the question. I'm on Tamoxifen and I had 16 rounds of chemo. I've felt better and thought most of the side effects were clearing up, but I guess it could just be a really crappy setback.

  • Mallory35201
    Mallory35201 Member Posts: 12
    edited November 2019

    Update,

    Mom got results and it was Bone Mets. Although I feel like I’ve already prepared for this news. I find myself extremely anxious. She sounds very optimistic and high in spirits and that give me hope. But it’s definitely hard being away from home, in college and working full time; and not being there with her. I’ve with through this entire process before when she was initially diagnosed with breast cancer- the therapy, not stressing about the thought of losing her. Now I find myself doing it yet again. Anyone with bone mets with any advice on what I should expect

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2019

    bone mets alone has a fairly good prognosis....treatment depends on her hormone and HER2 status...plus she will get a bone strengthener, either Xgeva or Zometa. Radiation can be done if there is pain, or large tumors, or sometimes is done to treat a single met.

    It is very manageable for many of us. For me, my life is going on as before except for those visits to the cancer center. Stay hopeful...I am sure your mom wants you to focus on your studies and to live your life.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2019

    Hi Mallory, take a deep breath, let it out slowly. Try to stress a little less if you can.

    My dx is bone Mets only and I was given a prognosis of 2 years, that was in 2009........roll on 10 years and I'm still bone Mets only and living a pretty normal life doing all the things I have always enjoyed doing.

    I know each of us is different but I just wanted to let you know that there are a lot of us bone mets only girls still here for a long time after dx.

    There are so many treatments available now compared to even ten years ago that help with living with metastatic cancer rather than dying from metastatic cancer.

    Love n hugs. Chrissy

  • Houston2016
    Houston2016 Member Posts: 317
    edited November 2019

    Hi Everyone,

    It's been 01/31/2017 that I finished treatment for cancer. I've been diagnosed with bone loss in 2018, been taking Anastrozole since 11/2016. Also, I had DX degenerative disk for 20 years. I try to exercise and take calcium, Vitamin D but recently, I felt the tissue along my spine in upper back feeling knotted. At the same time my hips feeling weird, not pain. Could this be results of bone loss or bone Mets. Is there anyway to help with bone loss? Thanks for your inputs.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2019

    Hi Houston, it is possible that what you are feeling could likely be related to bone loss due to taking Anastrozole and having a history . Anastrozole can also cause bone loss. Taking Vit D is great added to your exercise but I think I would be approaching my doc and asking for a bone scan to rule out Mets and a DEXA scan to get exactly what your bone loss is. Once these are done you would know for sure and your doc would probably add Xgeva (Denosomab) an injection or Zometa, an infusion. Both these drugs are prescribed for bone density.

    Good luck.

    Love n hugs. Chrissy

  • Simone80
    Simone80 Member Posts: 988
    edited November 2019

    Hi Houston,

    Asking for a bone scan is a good suggestion. I had 3 bone mets (ribs, hip, and lower back). I had no pain, only aches once in awhile.

  • Houston2016
    Houston2016 Member Posts: 317
    edited November 2019

    Thanks everyone for your inputs. I'm scheduled to see the spine Dr and want to do spine, hip and lower back MRI. My onco did order bone scan but I'm hesitate due to radiation. Is the MRI more clear and pick up other diseases as well better than bone scan? Thanks again.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2019

    Houston, glad to hear you have an appointment and an MRI scheduled. I know radiation is high with a bone scan but having one as a base line is recommended and they are excellent at picking up bone Mets.

    Good luck with it all and please let us know your results. I'll keep everything crossed that all is well.

    Love n hugs. Chrissy

  • PNWBookLover
    PNWBookLover Member Posts: 3
    edited November 2019

    Can fractures from bone mets heal without treatment? I had been having really bad pain in my left side (opposite of my initial bc), so I had an x-ray (nothing showed up) and a CT scan. The CT scan showed a fracture on my left third rib AND fractures on my right first and second rib. I have not had any trauma; not had any kind of coughing, etc., that might break a rib. I had a CT scan in February, and there was a suspicious spot in my right first rib that was too small to diagnose - but now, just months later, the CT scan report says it shows progression.

    So, this is where it gets weird(er): I next had a pet scan that indicated some uptake of the tracer (2.4) but not at a rate that would confirm mets (3.0). And, the pain in my left rib is much milder. But still, how in the world could it be anything other than mets? [Note: my MO wants to wait two months and scan again, and in the meantime, I'm getting a second opinion at OHSU in Portland.] Also, I'm still in my 40s and recently had a bone density scan that was fine, so I don't think it's osteoporosis.

    Any ideas or similar experiences would be great! Thanks so much.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2019

    Hi PNWBooklover. It is possible for Mets to ribs to spontaneously break if the met has broken through the bone surface and it does take any trauma to do that......just the action of getting out of bed will be enough. Yes, the pain level will be enough to tell you of the break but ribs do heal. You would need some rads to those particular ribs in order to lessen the cancer load in order for that to happen.

    What treatment are you on right now and for how long? That's an important part of your present puzzle. Also, have you had a DEXA scan which will show your bone density. Also, have you had any bone strengthening treatment? Also another part of your puzzle.

    I know it's really difficult to have to wait two more months for another scan but hopefully that will give a bit more of a definitive answer.

    Please let me know how you get on.

    Love n hugs. Chrissy


  • Maryjv
    Maryjv Member Posts: 306
    edited November 2019

    hi all, this is my first post since my diagnosis of invasive ductal carcinoma on11/22...I still have so much unknown...pathology is not back...have an apt 12/5 with Oncologist where I will have more answers...I had ct scans, bone scans, genetic testing and am waiting for breast MRI. I felt a lump on my right breast in the shower 10/14 and the rest has just been a blur. I feel like I am a bystander in this thing called life and this is just starting. I am trying to stay positive but I have been experiencing bad shoulder pain, now lower back pain and a recent cracked tooth. I am 34 yrs I have about and have a 7 yr old daughter. Everyone keeps saying I caught it early burn with all these aches I’m feeling some hopelessness🙏 Reaching out for support

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