If you are not Stage IV but have questions, you may post here
Comments
-
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.
-
how did you ladies find your Mets?
-
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.
-
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.
-
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.
-
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...
-
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
-
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.
-
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.
-
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.
-
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?
-
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 .
-
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.
-
Because it would imply that it is something quickly changing ?.. which cancer would not be ...
-
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?
-
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.
-
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?
-
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.
-
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.
-
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
-
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.
-
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
-
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.
-
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
-
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.
-
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.
-
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
-
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.
-
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
-
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
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team