Bone Mets Thread
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Hello all,
I have (for now) a single bone lesion in my left sacrum, which causes mild, occasional discomfort. I've been on Letrozole/Ibrance for several months and had two scans indicating the lesion is stable. My oncologist referred me to a radiation oncologist, who said SBRT was an option. However, in her professional opinion, there is a lack of overwhelming evidence in favor of SBRT. The message I got was: It might slow it down, it might not. Also, there are risks of fracture, nerve damage, etc. My question is: If you were offered SBRT, did you go forward with it? And are you glad you did? Did you have any complications?
Thanks so much for sharing your personal experience.
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I did - they just did my L4 (which was the only lesion growing at the time) and threw in the L3 "for free" as part of the mapping which wasn't causing problems but could in the future. Two years ago my L5 and nasty sacral met,which WAS causing big problems, were also done.
The benefit of radiating lesions that may be not currently growing is that it can lower the overall tumor burden and possibly stop issues before they happen between scans. My L4 met grew very quick out of a "stable" scan and I had no pain. Rather than waiting for a drug to deal with it, it was better to get it done and out of the way.
We have a number of ladies on here who have solitary mets they zapped and continue to be clean as a whistle years down the line on I/L. It may cause fracture, but if it were me I would take that chance for one met. I mean, it can fracture without radiation too, think of it that way. Ive never had any nerve damage, though obviously we are all different as to size and location of mets. I did have mild gastro issues with the sacral radiation, but just for a day or two.
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lgp1111 - I was not a candidate for SBRT because my bone lesion was too large (over 7 cm). However, I did get a targeted radiation to my lone bone met and it was more intense then the chest wall radiation I had received for my lower stage cancer in 2010. The RO did a more targeted/intense radiation plan then she would have normally given because of the possibility of me being an oligmetastatic and seeing this as an opportunity to get the cancer before it went somewhere else. Mine was in my collarbone. The RO should be able to tell you what possible risks you could get from radiation in that area. I lost a bit of arm mobility in my shoulder. I might have been able to get some of that back with PT done earlier but it happened right at the start of the COVID pandemic. I am glad I did it as the next scan done a couple of months after I completed radiation showed that I was NEAD! I have been NEAD since July 2020 (getting ready to go over recent scans this week with my MO and praying to GOD that I continue at that status. I am on Ibrance/Faslodex/XGEVA.
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I had numerous bone mets and became NED after my first six months of Taxol, H&P. Then the met in my spine at L1 woke up and my MO referred me to an RO. Insurance would not cover SBRT but EBRT was possible so we did it. I have been NED ever since. The EBRT was three years ago this month. I had no complications of any kind from the radiation. My RO told me, because I asked, that the met that was radiated would be less likely to become active again after being zapped
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I had hip/sacrum/femur mets. I only asked about SBRT for the femur, and while they considered it, they decided the fact that it's weight bearing, SBRT is not a good option. Every met we're aware of has been radiated. The smaller (sacrum, femur) mets are no longer active. The larger hip met has very low-level decreasing activity (there's a small fracture there too that may be causing activity in the scans).
The sacrum radiation hasn't bothered me really at all. The combo of cancer and radiation to the hip and femur have led to stiffness (being in early menopause doesn't help!), but it's all manageable as long as I keep moving.
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I think especially to the sacrum - its so weight bearing down there and more difficult to "shore up" like a femur or a hip or even a vertebrae where they can throw in some hardware, replace completely, or stuff in some cement. And what you don't want to happen is to end up in a situation where you are in a lot of pain and then cannot walk or move comfortably to exercise. Get ahead of it before it gets ahead of you!
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I had radiation 2ce while on I/F. The first time was targeted to the hip joint (acetabulum). I got another year out of I/F. The next was SBRT to the iliac crest. But I continued to progress in other areas so I moved to AA.
I wasn't aware there was controversy over SBRT? I was thinking it was just the new and improved version? It was so much easier, really a non-event except that i had to go in fot treatment.
Star2017 - did they say why SBRT was not good for a weight bearing joint?
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I think I’ve commented on my radiation treatments recently but will circle back given the conversation. I’ve had five separate treatments for bone met related pain since being diagnosed as metastatic in late 2016. It’s hard to remember the order of treatments now but I believe the first treatment was due to sudden onset of severe sciatica after progression on Arimidex. It was ridiculous in that I could barely stand in the morning, going to the bathroom was an adventure. One zap of the lumbar spine took care of the issue. Then, despite everything appearing to be stable, I later needed a zap to my right hip (I was having trouble walking) and then my sacrum. I have extensive bone mets which seem to progress slightly in spots.
I next had an issue with numbness and tingling in my right arm/hand. MRI didn’t show progression but I was having some facial numbness and, for the first time, they flagged skull mets and mets to my cervical spine. Apparently this is unusual (although I have certainly heard from many here who have skull mets) so they don’t typically scan for them - bone scans are useless for me so they didn’t show up. We took a wait and see approach given potential complications but about a year later I started getting severe headaches. Five sessions of rads to the base of my skull and upper c-spine resolved the issue. Now, last week, I finished five sessions to my c-spine/thoracic spine as a new lesion was impinging the nerves causing significant right shoulder pain and numbness of my right arm. I’m still recovering with no signs of improvement yet but I think there is quite a bit of inflammation from the treatment, despite the steroids. It can take several weeks to see results so I am trying to be patient, hoping there isn’t any permanent nerve damage.
I’ve never had SBRT. My understanding from my RO is that it would not have been appropriate in my case as it is very high intensity with the potential to cause significant collateral damage in delicate areas like the spine. Instead my RO chose a more targeted beam delivered over multiple sessions.
Wish me luck on recovery. I’m desperate to get off of the steroids - so sleep deprived! (And tired of the nasty taste. Yuck!) I tried to taper back but had to increase the dose again as the numbness was getting worse and there was a bit of breakthrough pain. I may try to dial it back again on Thursday. Here’s hoping.
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perky2020, the issue with my femur met is that it grew right on the edge of my last radiation field, so I think the combo of it being weigh-bearing and potentially weakened by past radiation led them to decide that traditional radiation would be best. In the Pet scan that followed there was no activity on that site any more.
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I did not have sbrt. But a few years later am experiencing some effects from the radiation I did have. Radiation makes me nervous but probably won't refuse treatment but will have to trust Dr's recommendations next time.
.I'm confused.. Are there times with progression that just radiation is used and you can stay on current treatment? How can that be?
Gailmary
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Gailmary, yes, I had radiation twice for oligoprogressions & stayed on current treatment. The reason for this is that my other spots were either stable or responding. The tumors we grow are often not all the same - they're all evolving and changing. So you can treat some with systemic, and whackamole some that are not responding with rads.
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I need to vent. I know nobody has the answers I’m seeking here but I need to vent. Even scream a little. I plan on calling my MO this morning to discuss.
I am nowhere near NEAD and never have been. I've had 8 PET scans and several MRIs but this time my insurance denied my PET. So I had a CT of chest and abdomen and a nuclear bone scan. I read the results last night and they are meaningless in my situation. I KNOW I have a lot of mets. What I need to know is if they are progressing, shrinking etc. I changed meds and this was to be my first scan on my new tx plan and I need to know if Xeloda is working or not. I don't know if it's because of changing technologies or a lazy radiologist or both. Above and beyond my old spots, my last PET showed new spots on 6 bones and 4 on liver (a subsequent MRI showed 6 on liver). The CT specifically mentioned 3 vertebrae and only one was common with the PET. It also mentioned "multiple small lesions on almost every vertebrae". The bone scan was even more vague. It said "scattered lesions throughout axial skeleton mostly in thoracic spine and bony pelvis". Well, we were also trying to figure out if the left ass pain I'm having is from cancer or my femur rod but that description didn't help. The bone scan also picked up right humerus and right femur. Is that because I have my arms raised during PET and it didn't pick up my humerus or is it new progression? Comparing apples to oranges is very difficult. And I'm also used to getting an SUV number for each lesion so that I can understand how active the lesion is. If the T11 vertebra mentioned in both my last PET and this CT is getting hotter that is really important. That poor vertebrae can't take much more. It's been through hell and even radiation didn't work well on it. But if it’s less active, that’s great. But I can’t decipher that from a CT or bone scan. Only a PET can do that.The CT showed 2 spots in my liver. Can I believe that my drug is working? I'd like to since my liver enzymes are improving but comparing apples to oranges leaves me with doubts. After all, even the MRI picked up more then the PET.
I'm so frustrated that I cried last night and I haven't cried for myself in a long, long time. I've cried for others but not for myself. I don't get scanxiety as I always think that knowledge is power and even if the news is bad (and it often is in my case), it gives me a tool to help fight back. So here I am crying again as I type this because I'm so dang frustrated. My husband is right. We will talk to the doctor and get this straightened out and the important thing is that I've been feeling better and together we can face whatever comes at us. But I'm still sad.
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RK2020- I am sorry this is happening to you. Yes, comparing apples to oranges is not good, especially with the first scan after starting a new treatment. For me, bone scans are worthless. I have so much arthritis (RA and osteo) that the bone scan cannot differentiate between them and cancer lesions. Just hot spots all over, even the big toe!!! No not cancer of big toe, I am sure. But we cannot measure progression of the bones that way--- in my opinion. I used to have CT's only. They said 2 liver mets. Then a new MO said to do MRI's of the liver. That they are better. My first MRI of liver said 4 lesions. Now we do MRI's of liver to monitor size of the 4 and see if any more crop up (have not yet). I have only had 3 PET's thru all this. I mentioned to the new MO about comparing SUV to SUV and she said it does not work that way???? Made sense to me to see if the areas are getting more active. But I am not the doctor.
I would definitely say to discuss your concerns with your MO. Tell him/her that you are confused about comparing the various scans and that you want to know if the new med is working. That going forward you need to know that whatever scan plan you have will be beneficial to monitor for progression. Maybe your MO can see some things you are not seeing by reading the reports only. Maybe your MO can have a discussion with the radiologist about what they are seeing.
Keep us informed. Hugs.
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rk2020 - That is all very frustrating and I can completely understand how upset you are about this! Definitely talk to your MO about this. I agree that knowledge is power and that you need to know where you stand so you know if treatment is working.
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rk2020,
I originally had PETs with my metastatic diagnosis. Then I switched docs and she does CTs. I think the conventional wisdom is that the CTs are the better test. Yes, they don't give us a "number" to look at. But they apparently give a better picture of what's going on.
As far as the bone scan goes, those were useless exercises for me. I have a lot of arthritis and that's what kept showing up. For quite a while, they didn't even report mets -- then, all of a sudden, they reported mets in my spine. Doc said it was because bone determinations are "difficult." I've also come to learn that my MO doesn't like to question the radiologists, even though my scans are read by different people each time. I was able to get my MO to call the radiologist once, but his info was pretty useless. And try getting their phone numbers to talk to them personally -- in my neck of the woods, pretty impossible.
I think your MO will be able to give you a learned decision as to whether or not there is progression. My guess is that he/she will keep you on current treatment and go by how you are feeling until your next CT.
Good luck.
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rk, I'm so sorry. Comparing apples to oranges seems worthless. I feel your frustration. I think that sometimes our MOs just don't get it. We want ANSWERS! Is it or is it not progression? Why are they sometimes concerned with spots and sometimes not concerned? It's frustrating, frightening, and sometimes just anger-inducing.
We get it here - we understand. Vent when you need to. Talk to your MO. I hope that helps. Let us know what he/she says.
(((hugs)))
Carol
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RK, what a frustrating situation, argh! I would be crying, too. Hate the insurance companies making decisions about what scan they'll pay for, vs what is needed. I agree with what Sunshine said, we want some answers, dammit! I hope your MO is helpful when you meet with them. I'm going to go outside and let out a big loud "ARGH!!" on your behalf. Sending you ❤️
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Thanks for all the support. I needed some friendly ears this morning. I’m meeting with my MO on Monday to discuss next steps and emotionally I’m doing much better now. It is what it is. I just have to be a strong advocate for myself and move forward from here.
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RK2020, I'm so sorry to hear you're going through this. How frustrating. I'm glad you're seeing the MO on Monday. Hopefully you can get some clarity. Can you get an MRI? Would that be useful? That's what helped confirm my progression when they weren't sure from other scans.
Bevjen, my CT scans haven't shown two small sites of metastasis, but the PET has. It's strange how these scans work so differently for each of us!
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RK, I hope your Mon appt with your MO explains what’s really going on. And I hope the next steps don’t bring big changes, if any. My recent lumbar mri had little useful info, by luckily I also had a ct that gave a whole lot of details. Unfortunately it showed new spine mets above the lumbar region.
I couldn’t get my chemo Mon due to low platelets, 93 yikes. But I did get my first Zometa infusion with fluids. I had been warned about side effects and they sure showed up. 101 fever on Tues and Weds, sleeping a ton, body aches. Claritin and Advil/Tylenol helped but I still feel like I’m dragging. I had an MO appt yesterday and although my morning temp was 99 and I took Advil it was 101 at the appt. I’m surprised they didn’t send me home. Even though the doc assumed it was the Zometa, he wanted to rule out a blood or port infection so I was sent to the lab for counts (platelets back to 225, yay) and cultures. I’ll hear the results tomorrow. Hoping for nothing serious.
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rk, I too am sorry to hear of your frustration. I would be one that wants detsils. I've become quite the crybaby and I dont apologize for it. I'll be anxious to hear what your doc says. Best of luck. That advocating for yourself isn't always easy.
I know my doc reads the scans himself and he's confident he knows better cause he has a huge 5 foot screen with the latest technology to examine them by. Ugh. I have to wonder how carefully he would compare when there are many to look at.
Gailmary
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Dang Rosie you’ve been through the wringer with SE. I described my first Zometa infusion has hideous but as bad as it was, it was only about 14 hours of hell. Intense but short. I was SO unprepared for any SE because I started the same day she suggested the drug to minimize my long travel time. There was no time for research. After several mishaps in my care, I thanked that MO by firing her. Anyway, I’ve now got 9 infusions under my belt but I still have to get IV fluids and slow the infusion rate to 40 minutes. I no longer take Claritan as it didn’t help me. I tried one infusion last summer without hydration. Nope. Not doing that again.
Gailmary- I used to have an MO who read my scans and would show me the visuals too but unfortunately I moved from that state so he’s no longer my doc. I wish my new MO was proficient in reading scans. She told me at my last visit that if my scans come back and don’t enough information, she has no problem either asking for a second read or ordering a PET or MRI (depending on what we feel is best). I’ll be interested to hear her take on Monday. I probably believe my liver results but I definitely need to understand if my bones are progressing or not. If I’m getting mixed results from xeloda, what’s next?
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Thanks RK. My Zometa was ordered for 30 min plus fluids and the nurse did a bunch of calculations aloud and said, 15 min will be fine for Zometa, 30 min for fluids. Little did I know it made a big difference. I’ll be speaking up next time
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Rosie, I don't remember if I posted this before. My first Zometa infusion was the hardest with SEs. The second one was a little better and after that I had no real SEs other than fatigue and maybe a bit of a fever. In March of this year, my MO changed my Zometa frequency from monthly to quarterly. I'll have my next infusion on June 22. I wonder if I'll have any SEs after being off for a few months. Hmmm. I hope not. I hope your future infusions get better for you. I'd certainly speak up and tell the nurse how awful your SEs were (no harm in exaggerating if you need to get your point across!)
Carol
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Thanks for responding Sunshine/Carol. I’m 6 days out from my infusion and still needing Tylenol to bring down the fever. With no meds, I was 102 this am. I’m really glad to hear your SEs lessened each time. I’m due for chemo on Monday and hope I can get it
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Hello, all,
We have organized a new meet-up for people age 45 and under with a metastatic breast cancer diagnosis and wanted to let you know in case you would be interested in participating if this meet-up description applies to you. The meet-up will be run by Julie Kramer, who had a metastatic diagnosis of sarcoma in her 20s.
Under 45 w/ Metastatic Breast Cancer
When: Thursdays at 1pm, ET (first meetup is May 26, 2022 1:00 PM Eastern Time (US and Canada)
Register in advance for this meeting: https://breastcancer-org.zoom.us/meeting/register/...
We hope to see you next Thursday, and please share with others who may be interested in being part.
-- The Mods
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Oh Rosie - you shouldn’t be suffering like this 6 days out. I’m assuming you will discuss your reaction with your MO. Your MO may suggest switching to Xgeva. Read up on it just in case. I’ll include some videos in case you are interested. Both are excellent and worth the time investment. The Dr in the first video talks super fast and the second video slow. I actually increased the playback speed to 1.25. You can’t increase the playback speed if you cast the video to a TV. It only works on devices
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sharware, is the saline solution to flush out the r extra calcium? My latest blood work showed my calcium was a little high.
Sunnidays, great question! I am curious to know this too!
This may be a little too personal but for those with extensive bone Mets, do you still have an active sex life? I am afraid to break something considering it is in my pelvis too. But I hate that this is another thing we have been robbed of. I should have had more sex my 20’s and 30’s instead of being a good girl! Ha! So manyregrets…..
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I'm late to the discussion on this but I agree RK2020, you have every right to be frustrated. I used to get PET scan every year but when my old MO retired my new one does a bone scan and a CT every 3-4 months and sometimes an MRI if there is clarification needed. It's hard to keep up on progression with so many different benefits and limitations of each technology. Bone scans frustrate me. They don't differentiate between arthritis, fractures or mets well. I have a large spot in my right tibia that was assumed to be a met because it showed up on a bone scan but on biopsy it was an area of osteonecrosis. I hope your MO has answers for you. They sometimes have pull with the insurance company if they are willing to call and negotiate the issue.
Rosie I'm sorry you hare having such a hard time on Zometa. It seems weird to me that a nurse would arbitrarily run it faster than ordered without a consult to pharmacy or the MO. I'm not sure what the scope is on that. It may be safe in theory but it doesn't take in to account the body's reaction. I would not be afraid to speak up. I hope you feel better soon. I have fewer side effects with Xgeva but it is more expensive. My insurance finally covered it because it's so hard to find a viable vein on me my MO went to bat with them over it. She wasn't going to put in a port just for Zometa infusions but we had to do several infusions and document the multiple IV attempts first to make a case for the switch.
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