Bone Mets Thread
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hi grandmaof3 and welcome to the forum. There is a lot of information on this thread but at this point we don't know if any of this will pertain to you, hopefully it won't. It is difficult to live always with the fear of relapse but try to stay positive until the results of the x-rays don't come out you don't for sure what the problem is. I was on tamoxifen for two years before I relapsed, I was never on femara. In 2013 when the mets were found a doctor gave me 6 months to live and here I am.
I wouldn't say that metastatic disease is yet a "chronic" illness but it's definitely not the death sentence it used to be. There are lots of women on these boards that have lived 12, 15, 20 years with bone mets. So don't despair.
You are welcome to this forum but I don't have too many answers for you. Let me direct your attention to the thread: its called: If you are NOT stage IV but have questions please post here and its under the Stage IV forum.
Sending you hugs and prayers that you won't have to join us.
Aurora
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Gma3- X-rays are not how you would normally confirm a bone met suspicion. I would request a bone scan, cat or pet would be the best way. Although an X-ray did show lytic lesion in my pelvic area.
I was 18 years out and had an MRI due to sciatica and that MRI suggested that I get bone scan because it saw weighted signals-- just because I was 18 years out does not mean you have this. Think positive!! But get the correct testing done to make sure.
Carol
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Hi Grandmaof3-
Like Auroaya mentioned, we do have a thread for members who haven't been diagnosed as stage 4 but have questions or concerns. You can find that thread here: https://community.breastcancer.org/forum/8/topics/....
We hope all your concerns are for naught, and everything turns out to be fine! Please keep us posted!
The Mods
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grandmaof3, I am sorry for all you are going through. The "not knowing" is hard to take. I am sure you want to know, one way or the other, so you can get on with your life. You have received some good advice here. I hope that you have the scans you need and that you receive good news. I am only one year out from my original diagnosis - bone mets right from the start. Our stories are all different, but we are living with our disease. I hope that you do not have bone mets, but if you do, there are wonderful people here to support you.
Hugs from,
Lynne
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Thank you to everyone who replied to my post and for the advice and concern. I will try that other thread. Can someone tell me how to do the dx information that all of you have on your posts? Or is there another thread that addresses the tech stuff on here?
When I asked my doctor what he was looking for with the rib x-ray he said a fracture. I just know that when I had the bone scan 4 years ago all my back problems lit it up. I have 40 degree scoliosis, spinal stenosis, degenerative joint disease, herniated disc, bulging discs - it's just a train wreck of a back. So, it doesn't have to be bone mets that looks suspicious on a scan.
I am so glad to hear so many of you are doing well after your diagnosis.
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Lynne, love the new pic!! You look like a 30's girl!!!
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Lynne, I'd have to agree with Carol, love the new pic!
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I'm so far behind, I don't think I can catch up this time, so am just going to jump in and say, Happy Birthday, Wendy! I hope you've had a wonderful day with your family!
And I love all the new pix's! Beautiful family and adorable dog, Rachel! And you look great! And Lynne, you look so much like I've pictured you all along -- maybe just a tad bit younger, as others have said. And AnimalCrackers/Cathy, so nice to put your beautiful photo with your name!
Grandmaof3, welcome! I just answered one of your questions on the other thread. I was a month shy of 6 years from my original dx when re-dx'd. And I had multiple x-rays for severe rib pain that was misdiagnosed as pleurisy and costochondritis because those x-rays never showed my bone mets, which is why I don't believe x-rays are an adequate diagnostic tool for your situation. And I totally agree with Aurora about women now living longer with bone and other mets -- hopefully long enough to benefit from some major new txs in the near future.
I have a short addendum to the Bone Mets contact list I will try to get out over the weekend. If there are any other corrections or additions, please get them to me ASAP.
Have a great weekend, everyone. Cristina, thinking of you especially tonight. I'm wondering if you'd started a new regimen. I don't recall seeing anything about it. Will have to go back and see if I missed it when I was away. Also Patty -- please get to the UofA Medical Center. I don't know what they can do for you, but I know from experience there can be a significant difference in approach and care, and I want you to have the best, including pain mgmt. I was chatting w/my local onc's PA this week, and even she admitted that local care can be very lacking and confided that she goes to a major medical center for an ongoing need. So please, please make that appointment for a second opinion evaluation!
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HI all! Happy birthday, Wendy! Glad you got good answers here. Enjoy, enjoy, enjoy!
I saw the registrar earlier this week and briefly saw my MO (he popped his head in). The registrar was lovely. All my blood work is great, tumour markers rose from 22 to 24, but not worrisome as it's within the normal margin of error. So no scans unless I get new pain or symptoms. And see him again in 6 months. So, 3.5 years of stability.
I'm still behind with the thread, but sending hugs to all.
Terre
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KiwiCat. 3.5 years of stability is wonderful 👌So happy for you!
Babs
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Hi all!
Just a quick hello to all. Happy Birthday Wendy! I'll be in Vancouver later today, but not sure if I will have much spare time to meet up, but will let you know. We're staying in Coquitlam, so a long drive into W Broadway.
I'm sorry to be way behind on postings, too much thinking about this stupid trial & all the questions I need answers to. I've been trying to stay off the computer & out in the garden where I can clear my mind.
Love to all, especially those having a tough time right now. Please be with me on Tuesday at my meeting. Have a good weekend, cheers, dee
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Happy Birthday Wendy!
Lynne - love your new avatar and certainly nice to "see you". How are you feeling after your kidney procedure?
Terre - Awesome news!
Dee, I will be with you on Tuesday.
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Wendy3 and Millandra - lytic lesions are the bone retreating from the cancer while sclerotic mets are bone building around the cancer to contain it. Lytic lesions are more aggressive because the cancer is growing too fast for bone building to contain it, so the bone just runs away. I don't know I would call sclerotic mets healing, because they also can cause problems especially in the spine, but they beat lytic every time.
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Dee-Ill be with you on Tuesday-holding your hand!
Babs0 -
Cive my lytic lesions are slow slow moving. When they heal they turn scerletic. So my MO says scerletic is healing for me. I actually have scerletic lesions that were found that I never knew about before my stage 4 was confirmed. . My CT scans and original cat scan in October 2015 showed them not even lighting up so my immune system took care of them before it failed. Working now on getting my immune system back some youth.
Carol
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Dee I will be with you too on Tuesday. What time Us Est would that be?
Carol
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thanks Babs & Linda, just heading out for the ferry. Always stressful, but especially today. Glad you''re with me. d
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Lynne- I got thinking. Does 50 girl mean you are in your 50 or born in the 50s? So I can clarify my post to you. If it is born in the 50s it should read 70s girl.
Hugs Carol
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Lynne love the new avatar you look great☺️
Thanks to all for the birthday wishes pretty quiet day spent with family, my favourite.
Grandmaof3. Love the name lucky you, welcome to the thread. You will find lots of caring lovely informed ladies here. Sending you big hugs.
Dee I'm with you also Tuesday try and not worry too much I know that's futile sometimes but do try. Keeping busy always helps me
Terre that's super awesome 3.5 down only twenty or thirty to go yeah for you. 🐱
Patty and Christina my thoughts are with you both along with everyone else enjoy your weekend ladies.
Wendy
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Happy Birthday, Wendy!
Lynne, I'm happy to see your beautiful pic.
Dee, I'm there with you, too.
Love,
Valerie
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Dee, add me to the list of friends crowding into your pocket on Tuesday! Oh, and I meant to pick up earlier on a comment you'd made a few days ago about being a barrel racer. My hubby's family has always been in and around rodeo, so I was delighted to see your comment. In fact, I thought of you and Amy when I saw this wonderful Deborah Copenhaver-Fellows bronze at a western art museum last weekend. It's called, She Rode Good Horses. Just thought you might enjoy seeing it.
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thanks Valerie, Deanna and Wendy! Sitting in the ferry line up, gawd so nervous. Never been this bad before, holey, moley.... I may have to take something.thx
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Hi Cive, there are sclerotic metastases and then there are lytic metastases that are now sclerotic.
I know it's all rather confusing...that's one reason why I needed to check with those ladies who have received the word that their lytic lesions are healed...to confirm the language.
In this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2938069/ is a description of the MD Anderson cancer response criteria, which describes a complete response to treatment as being "complete sclerotic fill-in of lytic lesions on XR or CT". It's in Table 2, and shows other terms like progression, stable, partial response...
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Terre, that's great! You're an inspiration to many of us here, particularly with your energy levels!
Hey, didn't you get jaw necrosis? I'd love to ask some questions.
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Happy birthday Wendy! I'll be with you on Tuesday Dee. Deanna, Millandra, 50s girl, Babs, Caryn, and more....the knowledge you all share here and on other threads is just awesome. I've been doing a lot more reading lately than posting and have been wanting to say that for a few days.
Hugs to all.
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Jennifer,
Thanks for the mention!
I am a bit overwhelmed by this thread, which moves sovery fast, but wish everyone the best with whatever life serves up. School's out and I'm catching up on house cleaning and sleep!
Caryn
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Terre, congrats on 3.5 years of stability! 2 points in tumor markers is nothing to worry about. I'm so happy for you and raising a glass to many more years of stability!
Dee, I'm definitely with you, holding your hand in spirit and sending all of my positive vibes.
Hugs to all, Annie
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Hi All
I wanted to share this with you. Last week my neurosurgeon gave me the go ahead to kayak, so after 2 years of not being able to do that, my friend and I went out this morning. I made it 45 min until my back said no more! I'm in the blue shirt. I actually got a little teary. You all understand that!
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Linda, what beautiful pictures and I can totally understand the getting teary part. You look amazing and I'm so happy you were able to do that! Dh has a kayak but I don't get out to do that with him. I hope you'll get to go again before the end of summer and that you're not in too much pain. Thanks for sharing the pics with us.
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Thanks for all the good wishes everyone. It means a lot.
Dee - I'll be with you on Wednesday here. Wed is your Tuesday, so don't worry!
Linda - kayaking! Awesome and epic!
Millandra - I'll message you.
I'm off to Wellington in about 2 hours. I somehow ended up being responsible for directing a photo shoot for the Kitten Inn calendar. I have no clue how I ended up in charge. At any rate, it's at a boxing gym; tough guys and cute kittens. Wish me luck!
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