If you are not Stage IV but have questions, you may post here
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Stacybee, when I went in for my BMX/DIEP surgery, my hemoglobin was 15. Right after surgery it dropped to 7.5. It has taken 19 months for it to reach 12.4. My Red blood cells are right in the middle range but my hematocrit is at the bottom of the range. Chemo and rads can leave you anemic. Supplements, supplements, supplements!!! Fatigue can be an issue but your AI might be contributing to the fatigue. Remember it is sweeping out the last drop of estrogen in your body
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I have a question for the stage 4 ladies and don't know where to post it. I am close with a family who just lost their young sister/daughter to metastatic breast cancer. People want to do something so they are searching for a charity to donate to. Is there a group that is truly searching for a cure that spends donations wisely? Any suggestions? Thanks.
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Hi RowWell, I'm sorry about the loss of your friend. Donating to a charity is a great way to honor her. Metavivor spends 100% of donations on research grants for metastatic breast cancer and is the charity that most of us recommend - https://www.metavivor.org/about-us/
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Thank you so much Lori.
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Of course, and without pressure, Breastcancer.org is also a nonprofit, and we rely on in-kind donations from those who we have helped
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Yes, sorry Mods! I didn't intentionally mean to leave BCO out, it's been a tremendous help to so many of us!
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duly noted!
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Hi,
My mom recently went through breast cancer and had radiation ect, After a recent check up and because of her complaining of back pain doctors now believe the cancer has spread to her back. Going through the entire Breast Cancer process was extremely hard for, especially as a college student. Looking on google and searching on the topic has extremely terrified me and I would appreciate any information or personal experiences you guys have had.
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Hi Mallory,
I hope it turns out that her cancer has not come back. Take a deep breath. One thing I do not recommend is googling on stage 4 stats. Those numbers are so outdated and many women are living much longer with the disease now. This site has a wealth of helpful information. There are also a lot of Good books out there. If her cancer has come back, find a good cancer center that provides full cancer support (alternative care, pain management, etc). They will coordinate all that which takes a lot of the stress off of you and your family.
Btw. I had bone mets, I am now NED ( no evidence of disease) after 8 months of ibrance and letrozole.
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what were your signs and symptoms for Mets? My mom found a lump on her lower back left side (it's like on muscle not the touching the spine at all) but she had a lipoma/cyst about 10 years ago and it's in the same spot bc you can see the incision where they took it out She has no back pain or any pain at all.
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ucfknights,
I did not have any pain. I had a enlarged lymph node in my neck which started the whole testing process. The bone Mets (hip, tailbone, rib) showed up on a PET scan. I know some of the other women have had pain with their bone mets.
Maybe her cyst is growing back, I've heard of that happening. Anyway, I would have a doc check it out just to be safe.
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has there been any cases where someone had a lump in their lower back region and had spinal mets? Would i check with her MO for this concern
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Mallory, first thing one doctor told me was to not go on Google and scare myself. Find one or two trusted sites where you find reliable, trustworthy medical information and don’t keep digging on the internet.
There are treatments even if her cancer spread. Simone said take a deep breath. I agree. One step at a time. I was diagnosed with bone mets to hip, rib and scapula almost nine years ago. Many of us frame this as living with metastases, not dying from it.
My son entered college the first year I was diagnosed. Please take care of your college work. Help your mom when you can but it’s okay to take care of yourself, too. Take this one day at a time. If she gets a diagnosis that requires further treatment, take it one step, one day at a time.
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Mallory,
I have a lipoma in my lower back just as you have described. I also have mets to bones but the lipoma is noncancerous. So it is possible that it's benign. A biopsy will tell her for sure. See if hee PCP or MO can order one.
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Laine, how did you find your bone Mets
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Thank you, I’ll let her know and hopefully that’s what it is. Praying
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Mallory,
An ER doctor told me he thought I had mets due to spots that showed on my spine during an x-ray. I went for a bone scan and it was found to be Osteoarthritis, hopefully that is all it is for your mom too.
HUGS
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Hello again everyone,
I have general question but it may link to recurrence issues. I had left UMX in 11/2016, chemo and rads ended on 01/31/2017. So far I feel great going to the gym 5 times a week. The last mammogram I had on the right breast was June 2018 and in April 2019 full breast US. The radiologist insisted that I need to do another mammogram even though the one in June 2018 showed my right breast was too dense to show anything. Hence, I always follow up with US. I think the mammogram was too much radiation plus they can't find anything anyway. My BS talked to me and I asked what is the chances of me getting cancer. He said 89% mammogram will stay the same and 12% DCIS calcification since US does not pick up calcification. So far I have not done mammo but lately I started to feel a little fullness of the right breast light discomfort sporadically. Should I go ahead with the mammogram or the MRI which I also consider the latter one. Thank you all for any inputs.
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I have likely asked this before, but my spine (cervical and thoracic) seem to be getting worse for pain. I wonder if it's a SE from Tamoxifen, but my ONC didn't seem to care to discuss the SEs it's been giving me. My bone scan last year started osteoarthritis, but I worry it could be misdiagnosed. I am tired of the pain. I do massage therapy, tylenol, Advil when it's really bad, THC oil, stretching videos. I have changed my diet to remove as much wheat, beans, bad sugar as possible. Added certain vitamins that help with joint pain - they helped with my wrist and hands, but the spine still hurts. Am I worried over nothing? Thanks to all for reading.
Hugs
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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.
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how did you ladies find your Mets?
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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.
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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.
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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.
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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...
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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
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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.
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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.
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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.
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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?
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