If you are not Stage IV but have questions, you may post here

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  • Springflowers
    Springflowers Member Posts: 85
    edited May 2019

    Thank you, i am in Canada. The nearest NCI is in Buffalo New York (funny as i was typing this I saw a commercial for that center on the TV lol). I will discuss this with my doctor to see if my insurance would cover it if i went there. I googled the out of pocket cost and i read that it would around $5000, yikes i definitely can not afford that. It is a great idea and i will see what i can do.

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

    You're most welcome. One thing I learned as a USA patient - a free standing imaging center will have lower rates than a hospital based center. I found the site below that gives a quote of $2888 for a PET-CT at a center in Rochester, NY. Still steep but a savings of 2K. I do not know anything about this service but there's a number there to give them a call - here is the link:


    https://radiologyassist.com/ best of luck!

  • libby2002
    libby2002 Member Posts: 41
    edited June 2019

    I've been recently diagnosed with stage 2b hormone driven breast cancer. Last night I wet the bed. I am wondering if anyone has had this as a symptom of stage 4 breast cancer?

    Libby

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2019

    Did you by any chance recently start a new medication, perhaps for anxiety or insomnia connected with your recent diagnosis?

  • Sydney22
    Sydney22 Member Posts: 1
    edited June 2019

    What are the symptoms of metastatic bone cancer. I am having pain in my right hip that is going down my leg. The pain comes and goes. It is not there during the night but comes out of the blue during the day. Massage and chiro has not helped. The pain feels like dull throbbing pain.I took panadol osteo 2 weeks after the pain started and it went away for about a week. Now it's back again. I was diagnosed with ILC 10 years ago, stage 3.

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2019

    Sydney22 , welcome to Breastcancer.org. We're sorry you are here and worried again... but wanted to say you've come to the right place!

    You may want to post your question also in the more appropriate forum called: If you are not Stage IV but have questions, you may post here.

    Besides that, we encourage you to join other forums and threads to share your story, such as:

    ILC (Invasive Lobular Carcinoma)

    Stage III Breast Cancer

    Good luck! And please, keep us posted on how you're doing!

    The Mods

  • ucfknights
    ucfknights Member Posts: 102
    edited June 2019

    hey girls. I was wondering For my mom, after chemo they don’t do a CT or PET because no signs or symptoms. So, for those diagnosed with mets, did you have symptoms that led your DR get a scan? Thank you

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

    Here's my story: I was Stage IV de novo BUT the reason the mets were discovered is -- after my needle biopsies, my breast center did a breast MRI. The radiologist said she saw a lung nodule so I was sent for a PET/CT. No lung mets but I did have bone mets. If that MRI wasn't done, and then the subsequent PET, my mets would not have been discovered. I had no symptoms. I was initially thought to be Stage 2


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

    ucf, I was diagnosed denovo in Jan. I had axillary node involvement so my MO wanted ct and bone scans before starting treatment. I had a lung nodule and 2 liver Mets show up. No symptoms. I went straight to Ibrance & Letrozole. Best wishes to your mom

  • Elennnnna90
    Elennnnna90 Member Posts: 3
    edited June 2019

    Hello ladies! I would like to ask you how sharp is the pain from a bone Mets? The last ten days I feel a discomfort when I lie down but when I am falling asleep I have no disturbances (I mean it’s not the kind of the pain that wakes you up)

    I am 2 years out of chemo, I am on Tamoxifen and Lupron depots and last month I completed my breast reconstruction. I am turning 29 next month and it is the first time after my battle with BC that I feel confident and happy again.

    I am very afraid of this pressure I feel on my hip and really the only thing I am thinking is what will I do if my cancer has returned. It has became an obsession and last two days I am not sure if I feel this discomfort or my mind plays games and I am imagining it. I think that I am losing it 😞😞 I hadn’t been so hopeless for a long time..


  • Springflowers
    Springflowers Member Posts: 85
    edited June 2019

    Updated on my status. Breast MRI showed area of concern, I go in Thursday for ultrasound. Saw "pain" doctor today, he is MSK specialist. He said I am in good physical condition, no muscle or joint issues and said get a bone scan.

  • S3K5
    S3K5 Member Posts: 606
    edited June 2019

    Elennnnna90 , sorry to hear about your pain. It could be a side effect of Tamoxifen - I know I had severe joint pain on Tamoxifen plus Lupron also causes joint and muscle pain. Of course if your pain is constantly increasing, it is better to have a check up with your oncologist.

    My bone mets pain was bearable in the first 2-3 months so I thought it was just my drugs causing side effects. When it gradually started to get worse, I went to my doctor who referred me to the onco. A MRI followed by a biopsy confirmed the bone mets.

    If your pain is getting worse, a call to your doctor is not a bad idea. Better to be safe than sorry! Good luck!



  • shgraser
    shgraser Member Posts: 8
    edited June 2019

    My best friend was put on Afinitor and Exemestane about 3 months ago. She immediately developed pneumonitis and had to stop the meds for two weeks. Her counts were down during this as well. She took heavy doses of steroids to help combat the effects the pneumonitis was having on her lungs. She can't breathe and its horrible to see her like this. She's back on the meds now and was given two inhalers but they aren't helping. Does anyone know of anything she can do to relieve the symptoms she's having with breathing, coughing, etc.... She is also considering going to Tiajuana for treatment that is alternative to traditional meds. I am at a loss how to help her! She was on Ibrance for 3 years and she stopped responding to that treatment.

  • Flo80
    Flo80 Member Posts: 349
    edited July 2019

    Hi Ladies,

    I have been recently diagnosed with IDC and don’t know the stage yet. I asked my doctor for ct scan of chest,abdomen and pelvis that came clear. I had a bone scan today and while doing that they did the three dimensional picture and additional pics of my knee. The technologist told me that when doctor wants to know more they do it. I am scared to death that it might have gone to my bones

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

    Dear Flo, do you have pain or another reason to suspect bone mets?

    There may be osteoarthritis or something non-malignant going on with the knee and they are being careful to get good pix since this is a baseline scan. Don't jump to conclusions, you might injure an ankle or another joint!

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited July 2019

    Flo, I'm just stage 1, and I had every scan imaginable in the last year. It's all for future comparison. It was, however, interesting to find out just how widespread my arthritis is. No wonder I creak, crack, whine, and moan! My oncologist ordered a pre-op non-contrast CT scan, which found all kinds of nasty things, but none related to breast cancer. Just because you have breast cancer doesn't mean you won't have other crap going on, too.

  • stephaniegee
    stephaniegee Member Posts: 81
    edited July 2019

    hi all,

    I have some questions about my mom and I would just like to get some opinions. She is 65 years old originally diagnosed about 8 years ago. She had her first recurrence in her spine almost 2 years ago. One year later she had another met on her spine and now she has two more spots on her back, the original recurrence (which was operated on and radiated) is now progressing and she has a met on her jaw. She is currently taking Faslodex.

    Should she be doing more?

    What is a long term prognosis for someone like her?

    She has a lot of fatigue but generally doing OK

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

    Hi Stephanirgee, stage IV BC is unlike early in that it is not curable but can be controlled somewhat by the treatments given. Those treatments are selected by the oncologist with the view of giving the best quality of life while slowing down the progression of the disease.

    Your Mom sounds like she is doing very well and handling the side effects of the drugs. Even though you may feel that there is more she should be doing, what she is doing is a powerful treatment even though it is 'just two injections' per month. From what you say her se from this drug are minimal and that is a good thing.

    Be at peace, your Mom is doing everything she needs to in order to spend more time with you.

    Love n hugs. Chrissy

  • stephaniegee
    stephaniegee Member Posts: 81
    edited July 2019

    thank you, I appreciate the response. I guess my greatest concern is how quickly spots keep coming up but she has only been on the faslodex a month or so, so patience is key.


    My other question would be regarding if the pattern of the disease is hereditary. I also had breast cancer but I am a carrier of the brca gene mutation but my mother does Not. I inherited the gene from my father so I wonder if my cancer is hereditary from her (we are both ER/PR+)or from the gene and if her recurrence has any indication for myself, you know what I mean?

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

    Stephanirgee, I'm not a doctor so I can't tell you a definitive answer to your question........ I do understand what you mean. Having been stage IV myself for ten years I can tell you from experience that every persons cancer is individual which says that even though we were dx with the same sub type it doesn't mean that our cancer will follow the same path or respond to the same treatment.

    I fully understand why you ask the question but yours may never follow the same path as your Mom's......this is a question that only the fullness of time can answer.

    Faslodex is a good medication and has worked well for many so hopefully your Mom will get a good long time before further progression is found.

    Love n hugs. Chrissy

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

    Xgeva or Zometa are also given for bone mets. Is your mom on one of those

  • ucfknights
    ucfknights Member Posts: 102
    edited July 2019

    hi I’m wondering how most of you girls’ mets were found? Thanks

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2019

    ucf, I found a lump in my breast six days after an annual mammogram. It was biopsied and found to be malignant. After a number of different doctor appointments andprior to scheduling chemotherapy, my oncologist ordered a bone scan. She wanted a baseline scan to compare to any future scans. When it showed suspicious activity, she ordered a pet scan and it was determined there was bone metastases.


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

    Ucf, I went for my five year checkup, for which I was six months overdue, and while being examined I winced in pain so doc sent me for nuclear bone scan and whole body CT. When the report was given it was discovered I had bone Mets. I had a lot of pain prior to the scans which should have been an indicator for me.

  • Simone80
    Simone80 Member Posts: 988
    edited July 2019

    I still saw my Onc yearly even after 17 years from my initial BC. He didn't find anything during my checkup. 9 months later I found enlarged lymph node around my collar bone. A PET scan found the spots in my bones. I was in shock as I had no pain from the mets.

  • jensgotthis
    jensgotthis Member Posts: 937
    edited July 2019

    Stephanie, good idea mentioned above about Xgeva. Is mom only on Faslodex? Have they discussed adding Ibrance to it? It distrusts the cell cycle and is a bigger hammer in delaying progression

  • stephaniegee
    stephaniegee Member Posts: 81
    edited July 2019

    yes, just yesterday they prescribed Ibrance. The doctor first wanted to see if faslodex alone could work but her bloodwork has gotten worse and not better so he has added ibrance.

  • Bcky
    Bcky Member Posts: 167
    edited July 2019

    I am very worried. I had a seizure that woke me from sleep a few days ago. That day I also had a mild hallucination. I have spent allot of time in denial and trying to minimize what happened. Can anyone tell me what they know or have experienced with this. I need to call my oncologist. From what I have read tamoxifen can cause seizures and mild hallucinations after a few years. I have been on it almost 5 years. I am worried about mets to my brain.



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

    Hi Bcky, seizures and hallucinations are two very good reasons to notify your onc......they can be side effect or something else more drastic. It is important that your onc know about both so they can be investigated as soon as possible. Good luck.

    Love n hugs. Chrissy

  • ucfknights
    ucfknights Member Posts: 102
    edited July 2019

    2 more taxols!! With the loads of supplements and icing for the entire infusion and pre meds (about 3 hours) no neuropathy yet. BMX scheduled for aug 19. Super excited for this to be over for my mom but also super anxious and scared for her MRI prior to surgery. Any positive thoughts? I can't stop worrying that the chemo didn't kill all the cancer cells. She didn't have many SEs either which worries me

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