Bone Mets Thread
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Hi everyone. I am glad that I found this site. I am also sad that we all have to be here because of this disease.
Little background, I went to my cancer specialist on summer of 2018 with soreness in my breast. The mammogram did not show anything, so as my bone scan. In 2019 summer My breast started to shed skin and my nipple started to sink. In my teen years I got Hodgkin and was treated for that. I thought it is the side effect of radiotherapy I received for my Hodgkin when I was young. In 2020 I went back to my doctor and expressed concern. The second mammogram showed two tumours. I did a biopsy and it was confirmed that it is cancer. He told me, don't worry, this is not a fast growing cancer and we just remove the breast tissue and it should be okay. I was referred to a specialist for breast cancer where she put me on Tamoxifen and started to plan for breast removal surgery. She also said she need to do a bone scan and CT. At the end of December, she told me that the cancer is in my ribs and spine. I just don't understand that how on earth in one year it can expand like this.The doctor is certainly sure that this is as a result of radiation therapy I received almost 33 years ago (my left chest has radiation burn and as a result my heart also got burned as result of radiation overlap).
The other problem is that I have severe heart disease with 2 calcified valves and inoperable coronary artery disease in addition to type 2 diabetes. I have been told that I have to get Lupron to stop production of testosterone in my body as the body can convert testosterone to estrogen. Also, they took me off Tamoxifen and put me on Ibrance 125mg and Letrozol 2.5mg. So I hope these medication give me few more years so I can take care of things properly. I know and understand that we all will die some day, I just didn't expect for my number come up so early.
The doctors told me that there is no need for surgery anymore as the damage is done and removing the breast will not change anything. So I am kind of puzzled as how this will effect my life and how much I should think about it. Adding lock down depression to this depressing situation makes it seriously tough to smile and pretend that I am okay. I am really not okay.
I hope if anyone can tell me what are my chances to pass 5 years? or maybe 10 year? or even it is possible to push the limit to 15 or more?
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hi Cushmape, sorry you find yourself here. I’m fairly new to this as well. Found out in July. The first couple months is very rough,, or at least it was with me. I just started to feel back to normal in December and it’s gotten better since. I don’t have answers for you as far as time, we are all so different as to the way the cancer effects our bodies. But there is a thread on here for stage4 long survivors. The treatment your on is standard. The ibrance and letrezole and lupron. If any of those don’t work out (if you have bad side effects ) there are other options. Stay strong. For me it got bad before it got better . There’s is also an Ibrance thread. Many of us also get Zometa infusion every 3 months so u might want to ask your MO. Hugs your way.
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Cushmape, we're so sorry that you have to be here, but we welcome you with open arms. I echo everything Hopfull said.
Have you considered getting a second opinion from a breast cancer specific oncologist?
Sending hugs-
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Hi everyone,
Thanks JoynerL, candy-678, BevJen, illimae, KBL, hopfull2, buttonsmachine, katrose, SF-Cakes (apologies if I missed anyone) for the warm welcome and encouragement.
Yes ER+. I've been on tamoxifen for ~ 5 years plus a quarterly injection, and this last year switched the tamoxifen to letrozole.
The doc will be starting me on fulvestrant and ribociclib (kisqali) sometime in the next week or two. He didn't say anything about any other scans.
"Everywhere" meaning the bone scan shows bone mets in multiple places. It "seems" to have accelerated(?) because back in Nov, I really didn't feel that much different. Regular aches from possibly the letrozole. But in December I thought I pulled a back, chest, and side ribs muscles, because after resting for 3 weeks, it went away. But then the back ribs got achy again after that. Then Doc wanted a bone scan when I mentioned it. It was just in January, the bone scan shows "many places". I haven't had a follow-up appointment with him to find out exactly where (but do I really want to know) and to ask for radiation(?) and other scans.
I hope I don't feel too sick with the new meds so that I can continue to work and take care of my kids.
But what can I tell my two teenagers (one younger, & one older teen). They both were pretty traumatized when I had my original diagnosis (stage 3) and I was in such a brain fog and not really there for them for about 2 years! This is actually the hardest part. :sadface:
Thanks again for all the support.
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cute00 — I to have bone Mets practically everywhere, even my skull. And I completely agree, like how did this happen. I felt ok one day , a bit achy now and then that I had only noticed about 3 weeks prior to diagnosis (July2020). I had radiation, I got very sick for about 2 months , think it was a mix of surgery (to debulk skull lesion ), radiation, and just my cancer being active. I also have kids (17 & 6). And it’s so hard, to be not completely there mentally due to feeling sick or to get them to understand without traumatizing them. Stay strong. You will get through this.
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Cute00....I'm on Kisqali/ letrozole combo. I had bone mets everywhere even skull. My tumor markers were 268 at the start and now recently 31😊 I 'm on box # 26 and can say I've kept my regular routine and rest when I'm a little more tired ( normally my week off I get tired) but am always on the go. I have an 11 year son who's a social butterfly & keeps me on my toes!!
I did have rads for my chest/ovaries taken out/ rads to hip and lower back (lower backdue to sciatica painwhich led to mets dx) I really didn't think it was everywhere considering I had no signs anywhere else of pain!
Come on over to the kisqali thread. There are ladies there that have been on this combo longer than me and doing great😊
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I just found out from my oncologist that the STRATA testing from my bone biopsy couldn't be completed due to "insufficient tumor content-->unable to sequence". Rats, was hoping to have this information for future treatments.
Do any of you think getting another biopsy be worth it? Although I'm having stereotactic radiosurgery next week, so there's probably not enough time to do it anyway. Double rats!
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Cakes, I had never heard about STRATA testing. How did you find out about it? How did they harvest the cells for the test? I just read about it online. How does it compare with Foundation One testing?
I had SBRT to a periclavicular node this past November. It was a breeze...no side effects, no nothing, and it appears to have worked. Here's what my RO said after reviewing the recent PET (12 weeks after treatment):
Hi, Lynn!
Just looked at the scan and I'm really pleased! The node now looks much smaller and the metabolic activity is significantly less (now actually normal, in fact). This indicates a very good response to treatment. Results after radiation take time, and lymph nodes often do not disappear entirely. The normal capsule of the node will usually remain even after the cancer cells are dead. Think of it like a skeleton after the body decays. I think it looks great!
Let me know if I can help, and good luck!!
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Congratulations Joyner!
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Joyner, what a great message from your MO! So happy to hear!
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JoynerL, what great news! Hurrah!
And to answer your question about the STRATA genomic testing, my oncologist said she wanted to have it done on some of the tissue from my bone biopsy earlier this month. I didn't even know about it before she mentioned it, and I think it's similar to Foundation One. I do know it was kind of difficult to get the bone sample out during the biopsy (that was not a fun morning), so apparently they got enough to confirm it was cancer but not enough to do the additional testing.
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Thanks so much, Cakes. I'm having an MRI on Tuesday (my amateur scan reading may have failed me.....
) and meeting with my MO on Thursday. I'll ask her about the STRATA testing then.0 -
Great news Joyner!
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SF- cakes- I had STRATA testing of a bone biopsy. I had just progressed so lots of options to biopsy per the IR. They did it under twilight anesthesia with some sort of imaging guiding them and the test had plenty of cancer to look at. I am not sure how it compares to Foundation 1 although I am not sure they use foundation1 for bone biopsies- yes for tissue and blood. Anyway, it looked for all the usual mutations and MSI and TB , PI3K, ESR1 etc it might have taken about 3-4 weeks to get the results.
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Hello All,
I am feeling a little better this evening after:
Reading all the entries that verifies that life goes on after a stage IV dx, the kind support you shine on each other and cranking up the HEATED mattress pad made by Sunbeam. 🙂
Thank you
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Muralsky, I have the heated Sunbeam mattress pad, too. We have the dual control one and we crank it up to 5 about an hour before we get into bed. It's delightful. Our house is cold (well, for San Diego standards). Our bathroom is in the mid 50 degree range in the mornings and at night. We don't have a heater in our 1910 house except for a couple of space heaters and two fireplaces. We get by - just have to layer up in the winter.
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Thank you Nkb, and it sounds like there is additional genomic testing available via bloodwork (since my biopsy didn't get a large enough sample)? I completed the basic testing for genes like BRCA a while ago, my understanding is tests like STRATA go into much more detail. But I thought the sample had to come from the tumor itself.
Sunshine99, I may have to try the heated mattress pad too, maybe there's such a thing as a heated toilet seat?
Our bathroom feels freezing in the mornings! 0 -
There IS such a thing as a heated toilet seat. My aunt and uncle have a Japanese toilet in their laundry room for various reasons. Lemme tell you - while no one enjoyed the bidet functions, that heated seat was always on for winter family parties and it was AMAZING. Kohler has a heated seat with LED nightlight and soft close function that is only... $279!
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A heated toilet seat actually sounds lovely!
It was 0 degrees here last night in Pennsylvania, so anything warm is appreciated.
I just joined the forum and am still trying to figure out how to navigate on it. It was such a relief to see all the communication and support among others who have the same stage IV diagnosis.Right now, I am still in the initial “ Where’s Waldo” process. Off to a different oncologist due to something spotted on a brain MRI. Getting a CT scan to prep for some radiation to both hips. Finished my first round of Ibrance, which was very tolerable.
Wishing the best and brightest for you all, and Thank you once again.0 -
Welcome Muralsky, I'm new here, too - new to this whole world of MBC. In just a short time, the support I've felt from this community has given me a lot of hope.
SondraF, I'm headed to Kohler's website right now, if there was ever a time for such a luxury as a heated toilet seat, this is it!
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Muralsky,,,, welcome,,, sorry your here, but nice to have a forum like this. You definitely not alone.
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Hi, I'm new here too and scared I have bone Mets.
3 days ago I started having what felt like a crick in my neck, yesterday was more severe and today was unbearable pain and hurts to even barely move my head.
From what I read in an article on here, said bone Mets pain can be very sudden. Does anyone have bone Mets specifically to the neck? I plan to notify my MO in the am. Also having some slight bowel incontinence, which I read could be spine related. Joint pain from Aromasin also, so I don't know how to determine if that's from that or Mets. So scared.
if my onc tells me to come in, should I demand scans? Normally he says notify him when you have 2 weeks of symptoms... This neck pain isn't anywhere near two weeks, but dang it's excruciating! It's not an injury.I'm not supposed to see him until April but I don't want to wait that long.
Any input is welcome. Thank you all and God Bless you
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I have the heated toilet seat and the sunbeam mattress pad- wonderful. mine is a toto- DH dying to have one since visiting Japan where they are common. When we lost power recently- no heated toilet seat for a few hours- was a shock. also gas fireplace is wonderful-
SF Cakes- the problem with biopsies from bone is de-calcifying them can cause problems and the Strata does it a different way I think.
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Margo, what you're going through is so normal when you've been fairly recently diagnosed and treated. Everything seems to be screaming, "It's BACK!" I think that you should go to see your MO right away, if for no other reason than to get some peace of mind. I'm betting that your issues are entirely unrelated, but you need to know.
Sending hugs-
-Lynn
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On this toilet thing....I went into a Ferguson plumbing showroom recently to pick out a sink. As I was innocently walking through the displays, all of a sudden, and with no warning, the toilet I was passing opened its lid! I almost jumped out of my skin, and the receptionist, who was within view, almost keeled over laughing. She said that one of her little pleasures in life was seeing reactions when that toilet opened as people approached....so funny! THEN, I went into the ladies' room, and the one there also did its thing with the lid (and some welcoming lights), AND it was heated! Heaven!
They do carry one of those Japanese jobs that did everything but complete your business for you. It was vastly expensive, as I recall. Not in my future....:)
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Margo53, do not wait, call your oncologist right away. I waited and paid dearly.
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Hi Trail, thanks for sharing. I'm encouraged by your words and look forward to improvements. I'll have to find out the # of markers and if I'll be getting any radiation. Yeah, I'm actually not that achy today at all. Strange.
It looks like I'll be on Kisqali and Fulvesvant(sp?), not sure about letrozole now. I'll find out later this week. But I'll check out the thread. Thanks for letting me know.
Best wishes
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Hi hopfull2, thank you for your encouraging words.
Everyone here is so supportive of each other.
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Hi all,
I was first diagnosed with BC back in 2011. I have been having back pain lately and as I've thought about it more, definitely rib and hip pain off and on for a lot longer but was too busy with work to really realize the extent of it. I am trying to fight my way into an oncologist but I've just moved to a new state unfortunately and am being hit with all kinds of roadblocks (e.g. go to a PCP first, etc.).
For anyone that had pain prior to bone met diagnosis, was the onset of pain sudden? My back pain started off and on about 3 weeks ago but is constant and really bad now. This seems fast but now when I piece together the other stuff, maybe not so.
Megan
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hi there,
i hope you dont have bone mets, but you should get checked out. maybe go to a pcp and let them order xrays/mri, blood work, tumor markers. you definitely have a history and deserve to be evaluated. hopefully it will not be bone mets.
i had back pain for several years- was told it was spinal stenosis. went for 3 mri's each about 18 months apart. the first two just showed spinal stenosis. then in march 2019 was diagnosed with my third breast cancer - (first two in 2001). and my back pain was horrible. but the pain doctor i was seeing kept telling me there was no need for another mri cause i had one 18 months earlier and it wont show anything, i reminded him that i was just diagnosed with breast cancer and the pain was worse than ever and i was waking up with horrible pain at night and in fact a few nights i would wake up and think that this is what bone mets must feel like, but he wouldnt order the mri. anyway after the breast cancer diagnosis, went back to my old breast oncologist and she immediately ordered an mri and there were bone mets all thruout my vertebrae. honestly i wonder what the mri showed 18 months earlier, but am afraid to ask to have it re-read, because it is what it is and i cant do anything about it except be upset that i wasnt being treated earlier. would have prevented alot of pain. not sure i answered your question, but i would say that my pain got worse over a period of about 2 months, even before i knew about the new breast cancer. it didnt even occur to me that it was bone mets, till i started waking up at night wondering if it was bone mets, cause the pain was so bad.
in any event, there are lots of treatments for the pain, including radiation and then of course treatment for the mets themselves, hormone therapy if the tumor is ER/PR +, but again hoping it's not bone mets.
good luck and keep us posted.
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