Bone Mets Thread
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For those wishing to learn more about bone strengtheners and keeping your bones healthy, I want to share these two LBBC videos. I’ve shared them in the past but with an ever changing audience, I thought it might be time to share again. The first is by Dr Adam Brufsky. He gets a bit technical in the beginning and talks fast but I assure you that it’s worth the time to listen. https://youtu.be/8AmoeY9ohoY
The second is by Dr Weilbaecher. She can talk a little too slow for me so I change the playback speed to 1.25. You just can’t make me happy. 😂 https://youtu.be/YpFfLrITfEI
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rk2020 - Thanks for these links. I think I will take a look at them.
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Candy: As a follow up with my MO on St Pattys Day, she reaffirmed it’s ok to take Xgeva every 6 months. MO feels it’s important to keep bones strong but also not becoming too brittle. She described as a balancing act as long as my bone mets are inactive or stable disease.
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Thanks Tinkerbell for reporting back. I was getting scans every 3 months so we did the Xgeva shot every other time thus every 6 months. Now we moved my scans to every 4 months. So to keep me from having to go to the cancer center just for the injection every 6 months we are going to give me the Xgeva every 4 months during scan time. Funny how our doctors can change Xgeva timing - monthly, every 3 months, 4 months, or 6 months.
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Had my T8 bone biopsy yesterday. Thanks to many of you who told me that your experience wasn't too bad. It helped a lot. My biggest problem was of course anxiety. They took me a little early but when they got wind of how freaked out I was they suggested that we could re-schedule with a full anesthesia rather than the "twilight" sleep they were planning to use. Well, it had already been TWO months since they saw all this spread in the ER, and this was the first available date to get this biopsy done, so I told them to just go ahead and we'd see how things went. They added some Ativan that they hadn't planned on, and combined with everything else they gave me, it worked and I really wasn't in pain. Just felt like I was in a weird dream where I couldn't sort out who was there and just what was happening. Unlike what they say, I do remember it.
Now I know where T8 is on me at least. I'd been looking at all these anatomy charts online and different ones put T8 in somewhat different places. It probably is a bit different for everyone like so much of anatomy is. I had wondered if some pain spots I had were from T8, but could quite get a handle on where T8 actually was on my back, but now I know.
I'm just concerned that it has taken them so long from the "discovery" of all this spread to actually doing something about it. I have a follow-up with the oncologist on the 12th to go over whatever pathology results show up in the next couple of weeks, and then she can decide what the treatment plan will be. That will make close to THREE months from them being aware of this new spread to actually doing something about it. Does that sound odd or fairly routine to the rest of you? I know that a couple of weeks or even a month or so doesn't really make a difference with this, but when I'm looking at almost three months before any new chemo starts, I get a bit worried that this has all just continued to spread, and I don't understand why there wasn't something initially at least they could have done to tamp it down until they got all this additional data.
Is this routine or the "new normal" post Covid way, or am I being dismissed as "well it probably really won't matter in the end anyway since it's stage 4" kind of thing. Any thought much appreciated as always.
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threetree - I can’t even imagine after all this waiting you’ve already done to wait another almost 2 weeks to get your diagnosis. Where do you live? My experience was so different. I had a suspicious ER visit on Sunday Feb 23 2020. By that Friday the 28th I was scheduled to see an oncologist (new to me) at Moffitt in Tampa. The PET scan was the following Wednesday, blood work and bone biopsy on Friday and my first treatment was on Wednesday March 11. That was just 17 days after that fateful ER visit and it seemed to me to be an ETERNITY. I can empathize with your anxiety. Then I had a series of appointments with an orthopedic oncologist and had a femur rod placed on March 24. That was a month after my ER visit. And all of this was during a very confusing time as hospitals had to deal with the first time ever restricting surgeries and visitors.
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RK2020 - Thanks very much, and good to know your thoughts. I think your experience was around the time Covid started, and my recent troubles have been during the time it's been "calming down" a bit and that might make a difference.
I go to Fred Hutch Cancer Center that is affiliated with the UW (University of Washington). To date they have been a very highly regarded place, so I had assumed I was in good hands. These days I'm beginning to wonder though. I had finished most all of my initial treatment by the time Covid started and I was real glad about it, especially when I read how newly diagnosed people were getting put way off for long periods of time for all aspects of their treatment. I have to assume that these people know what they are doing and that the delays I've experienced so far must be in some sort of "window of time" that is considered allowable, but I am still very worried that the cancer is doing nothing but spreading for months while they find schedule time. I'm also concerned that perhaps they are no longer as concerned about you if you are stage 4. None of them have said anything about the delay being OK or abnormal. No mention of it, no apologies if it is due to short staffing and post Covid problems. The oncologist did note that her follow-up date was set due to the up to two weeks it could take to get all of the pathology results back. My initial diagnosis biopsy was back in 3*5 days, and I thought that was a long time to wait. I'm just crossing my fingers that they know what they are doing. Thanks for letting me know how it went for you.
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threetree - I can’t imagine that these delays could be related to stage 4 dx. You are probably in very good hands but I fear the emotional toll all of this waiting is taking on you. It’s not fair and should be taken into consideration. I’ve had 5 biopsies and have never waited more than 3 days for results. One time I had a biopsy just before Memorial Day weekend and my doctor called me over the weekend to tell me that it was benign because she didn’t want me stressing and ruining my long weekend. Bless her heart. Since then, I haven’t found a doctor quite that compassionate but jeez Louise these docs have to realize while this may just be another day at work for them, this is our LIFE and mental health on the line. Hang tough. At this point, you have no other choice.
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What a really nice doctor you had to call you over the week-end. The original breast surgeon I had would do things like that and he was just amazing, but retired when Covid hit. I still miss him terribly. Most are not like that. I did luck out in the provider category yesterday though. The nurse who checked me in was one in a million. He was just a jewel. Patient, kind, and went way out of his way to explain what he was doing and would be doing. He never seemed rushed and made me feel like I was all he had to focus on for the next hour or two. When I started to cry he was very sympathetic and just told me to take all the time I would need, asked if I needed to talk, etc. He was in communication with the radiology team and let them know in advance, any and all of my issues. Likewise he would tell me who there he had spoken with and how they should be aware of this, that, and the other thing. A nurse who deserves more than a nurse of the ear award - maybe the decade!
The radiologist too was a rare gem. She was the equivalent of the nurse who checked me in when it came to gentleness, kindness, patience, understanding, and explaining everything. She did not seem the least bit rushed either and stated that we could take all the time we needed to discuss everything we needed to. She'd make a great PCP and I go to her in a heart beat, but she's "just a radiologist" at the hospital. I've met many like that in the ER and these other departments and wonder, "why can't you be my regular doctor?"
It sounds like what you went through with all your biopsies (5 - yikes!) you had pretty much the exact same routine I did, but your procedures and appointments were just scheduled so much closer together. That's what I would have expected.
They are telling me that with all of the tests and staining that has to be done on the sample, it will take at least a week for the main results to come in, and can take an additional week for some of the other results to follow.
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Threetree - I agree with RK2020, I don't think this is you getting brushed off because of stage 4. I am down in Southern Oregon. UW and OHSU, you're right, both are regarded as the go-to academic centers for care but I think everyone is struggling, even the big dogs. I do think there is a distinct difference in care pre and post Covid. I have the unpopular opinion that hospitals and healthcare had bad staffing and burnout issues before Covid. The pandemic just pulled back the curtain and put it in the media. I can't speak to Washington but here we are struggling here with the fall out of people leaving the medical field, or at least the patient care part of it, due to burnout combined with a whole host of people who left due to vaccine requirements. The mass exodus is compounded by an inadequate and inefficient process of training and recruiting new people in technology, nursing, phlebotomy, all of it. So staffing is an ongoing issue. There is also an onslaught of long covid patients and those dealing with the results of delayed treatments so there is a flood of people seeking ongoing care and still a flood of new patients seeking care. Here it takes 4-6 months to get in to see a specialist and a good month to get in to see my primary care doc most of the time. Nothing happens quickly, unfortunately even cancer diagnosis treatments are delayed. That has changed since I was diagnosed.
I was diagnosed on the cusp of everything going bonkers and once my mets were discovered everything happened fast. I began limping on my right hip in October of 2019 after spending most of 2018 with an initial cancer diagnosis and treatment. I thought I had pulled a goin muscle of had a labral tear so I kept icing and heating and stretching and went to the ER and urgent care a few times between October and November. I contacted my oncologist right after Thanksgiving when I was still having issues with no answers. She ordered an MRI December 3rd and I had a metastatic diagnosis December 6th of 2019. I was scheduled for a biopsy and a rod placement to my right femoral neck and femur December 30th and by the second week of January I was back in the office starting Verzenio and Faslodex. So between diagnosis and treatment it was said and done within a month but that was the tail end of 2019 and first month of 2020.
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I agree that medical staff is often overworked and overwhelmed. There was a nursing shortage BEFORE Covid. Now it’s worse. Sad. I have had some amazing nurses and techs over the years. Interesting is that I’ve had a harder time finding the right doc. And because I’ve moved several times since my initial diagnosis, I’ve got more experience with docs than some of us. Gone are the days I could spend an hour with a doctor. They just don’t have that kind of time. Although I must say that I do really like my clinical trial oncologist but once I'm off the trial, I will lose her.
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smallmoments....and others,
You mentioned in a previous post that you have skull mets. Did your skull mets cause any pain? If yes, please describe. What treatment did you received for the skull mets? If anyone else has had skull mets I'd be interested in your comments. I just started having pain in the temporal area above my right ear. I can move or shift my scalp skin with no pain, but pressing or tapping on the skull bone over a small area above my right ear is tender. And at times I have a subtle pain even without tapping on the spot.
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Emac877 and Rk2020 - Yes I've noticed a big difference in the medical places since Covid - both in personnel and procedures. So Oregon's got the same stuff going on, huh? Like you say Emac, "Even the big dogs." I have to say I was pretty surprised a month or two ago when I saw that US News Medical Facility rankings now put Fred Hutch at something like 27th in the country! I'm not so sure they are what they used to be. I was diagnosed in late 2018 and got most of my treatment in 2019, then in the early part of 2020 Covid hit. Such a big difference between now and then. I'm glad that I at least got that initial diagnosis stuff taken care of before Covid. I would have hated to have been real newbie during 2020-2021!
Wendy - Real sorry to hear of your latest troubles. Sounds like one of those things that could be serious, but then again, nothing really at all. It is allergy season now and I know pollen can do all sorts of things in our heads, including causing weird pains. Fingers crossed that this is just some passing thing and no big deal!
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hey y’all! I was diagnosed in 2020 with stage 1 triple positive bc. I am now 44 years old and having some pain in my spine, joints, and sometimes upper body including shoulders and middle back. I had a double mastectomy, chemo, finished with herceptin and Have been ok tamoxifen two and a half years. I do have implants and have not felt anything unusual, that is unless they flip🤪😂. I am getting 6 month checkups but no bloodwork or scans. They just feel under my arms and ask me if anything hurts...Of course, things change and I often have aches and pains. However, they have said if it comes and does not to worry, just if it comes, stays and gets worse... thoughts or suggestions?
Ps if this is not the right place, please let me know where to post. Thank you and I will pray for those of you whose stories I have read!
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cdw2020 - Knowing what I know now, if you have pain I would insist on a scan. In your case, a CT paired with a bone scan or a PET. Better safe then sorry. You are your best advocate. Insist on a scan. It will put your mind to rest and that alone is worth it. Although not every doctor runs tumor markers, I would ask for CA27.29 and CA15-3. After stage 2 treatments, my MO ran these tests along with a CBC and CMP every 6 months. I don't see any harm running any of these tests. Good luck.
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Can anyone please tell me how their bone Mets were discovered. Do they cause bone pain or other symptoms. My lower right side of my back keeps bothering me. I know if I go to the doctor I’ll be scanned. I’m so stressed and my dad died last week.
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In 2021, my bone biopsy took a week to come in. The hospital said their policy was to give results in person. I've been happy with the hospital and the team, so I went along with it. Everything otherwise has been good. A week later I had confirmation that the cancer had spread to the bone.
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My bone mets were found when I discovered a firm lump on my lower spine while doing floor exercises. I was Stage 1A at the time. The lump was not painful. Saw my Primary MD - had x-ray of spine - diagnosed probable cancer - referred back to oncology. Had full body bone scan - mets seen in: lumbar spine, hip bones (trochanters), illiac crest, sacrum, ribs, sternum - diagnosis changed to Stage 4. I get Zometa infusions at intervals. Have occasional pain in ribs and hips, but the pain does not last and has not required pain meds. My MO says the Zometa helps to control bone pain. I have never been offered radiation treatment for my bone mets. My bone mets were stable for about 3 years on Verzenio and Letrozole...then Ibrance and Letrozole. Scans showed bone progression late last fall during failed treatment with Everolimus and Fulvestrant.
My condolences on the passing for your father. Give yourself time to grieve.
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aisy, I really had no symptoms of bone mets. I found a lump in the breast and as the testing went on, the mets were discovered. I understand how someone who’s been diagnosed with bc can think the worst when feeling certain aches and pains. I know I do it. However, there could be so many reasons for your back to be hurting. It doesn’t mean bone mets. You may have been overdoing things without realizing it. It could be a symptom of stress caused by the recent loss of your father. Have you taken any over the counter pain relievers like Aleve? Also, I find lidocane patches to be helpful, as well as rest and sometimes light stretching exercises. I’m not minimizing your pain, but you could try a few remedies to see if they help. If, after several weeks you still feel pain, please see your doctor. Carrying the worry around about what’s causing the pain can be worse than the actual knowing.
I want to add that you have my condolences on the passing of your father. Many hugs to you.
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Thanks everyone.
Divine you are right I have been under stress and I want to thank you for your condolences. I’ll get my back checked out when I get back from my dad’s funeral. I have to travel to the other side of Australia for it with my six big kids. Airfares are ridiculous at the moment too.
Hugs back to you Divine xx
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ausykaren - First I want to say how very sorry I am that you recently lost your father. It's a hard thing to have to go through. It will be 10 years this month since I lost my father, but I still grieve terribly sometimes. It definitely gets better and the waves of grief get farther and farther apart, but it seems like it will always be there in some way.
Second, I am so sorry to hear about your back issue, and honestly I wouldn't ignore it. Last November, I started having some lower right sided back pain. It would actually move around a little bit and at times, it was bilateral. Well it got to be pretty concerning one day and I was actually concerned that it could be a kidney infection, because the pain was right over the location of one's kidneys. I went to the ER and they did a CT scan (no contrast) and essentially found nothing and like others had told me before, they said it was likely strained muscles, and they added that I was dehydrated to, so they gave me an IV for rehydration and then put some painkiller meds in it too. (I had also told them that since it was getting close to Christmas I had been receiving more packages in the mail and had been carrying more heavy things and thought it might just have been muscle strain from all of that.)
In late January, I had an inexplicable bout of breathlessness after a walk that seemed very unusual - so much so that I again went to the ER. As usual, I fully expected to have all the tests and then be told that I was just dehydrated or something, anxious, and likely pulled some muscles or whatever. Well, that time they came in and said how very sorry they were to have to tell me, but that the CT (with contrast this time) was showing that the cancer was in my ribs and sternum. They said in those cases it was usually in the spine too, so they arranged for an MRI and that indeed did show cancer in my spine. Needless to say, I was absolutely devastated and remain so. My history was something like yours. In November 2018, I was diagnosed with a 5.5 cm IDC, ER/PR+, HER-, left sided tumor; stage 3B, grade 2. After my ER experience, the oncologist ordered another full CT with contrast, bone scan, and a bone biopsy of a spot on my spine. The CT and bone scan confirmed everything they had seen in the ER and now I am waiting for the bone biopsy results (just had it on Thursday). Once those results are in (they say it will take 1-2 weeks) the oncologist will set me up with a now stage 4 treatment plan of nothing but drugs for the rest of my life.
Just off the top of my head, I would say take some time to grieve your father, and then in the not too distant future go get a scan and just be prepared to hear the news one way or the other. So often it is just pulled muscles or something, but there's just no way we can know without those scans. I will say that they don't seem to be in a big rush to get me some new treatment, so I think you could probably easily take another week or two to deal with the loss of your father without compromising your health (I am no expert or doctor of course.) Obviously, you have to do what is comfortable and works for you. This is really a lot to deal with all at once and my hear goes out to you. I hope something of what I've written here will be of some help and wish you all the best. Fingers crossed that your back issue is just anxiety or a pulled muscle or something!
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Thanks threetree. You’re right it is hard losing a parent.
I’m very sorry that you have bone Mets to deal with. I read that there are some good drugs on the horizon. I hope they become a reality and no one has to deal with breast cancer again. Hugs to you.
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Ausykaren, I'm sorry to hear about your dad. I would go see your doctor – either your MO or your PCP. I actually did have pain with my bone mets. However, it was a lump in my armpit which led to a biopsy which led to the Stage IV diagnosis. I'd make that appointment for your peace of mind.
(((hugs)))
Carol
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My stage 2B cancer was in my left side and I had lymphedema on that side from all the treatments/surgeries. Nine years later, my lymphedema was getting worse in my collarbone area and my collarbone hurt. My oncologist sent me in for a bone biopsy and that is how my mets were discovered. It ended up being 2 lymph nodes and a > 7cm tumor on my collarbone.
I would tell your MO what is going on. Hopefully, it isn't a tumor. It could be just aging or sideeffects from some of these harsh drugs we are on but always best to get it checked out with your oncologist
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I would ask for a CT scan if the pain is persistent, during covid I did not want to go to the hospital so I went to my local doctor who despite my previous breast cancer diagnoses, said it was bursitis or early arthritis and told me cancer could not come back like that, eventually, I phone the oncologist and got an appointment and got diagnosed by CT and bone scan, I got an apology from the local doctors, now it turned the local doctor had this man who had been diagnosed with cancer as a child and had half of one leg removed he had huge anxiety as an adult and was in and out of the local doctors every week looking to be referred for a scan as he was convinced the cancer was back despite in his case he was cured and the sort of childhood cancer he had does not return, so I can kind of see what was going on, doesn't make it right though.
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On nursing staff, my oldest daughter is a nurse for 20 years and had a very senior nursing job, she would not get into college today to do nursing as the academic requirement for entry to nursing has increased hugely and that's part of the problem.
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weninwi -- i just saw your post re. skull mets. I don't know if i could differentiate between skull mets pain and SE's due to treatment (I was on Ibrance which apparently causes headaches according to one of my nurse practitioners). My headaches were always fleeting, sometimes on top of my head and sometimes on the temples (in my case, this was sometimes caused by tension in the neck or jaw). I always report headaches (along with other pain) to my team. The only time they were concerned was when the pain was consistent (even though it was on and off) for over a week. I had a brain MRI which was clear.
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I’m so sorry about your dad & dealing with this. My bone Mets were discovered due to persistent upper back pain. My old oncologist near Seattle said usually lower back pain is worrisome. Did some PT, did not go away, saw a new oncologist in Orange County. She said let’s do some baseline scans since no scans after my initial treatments. Tumor markers were in low range, Vit D levels still low but improving. Insurance refused pet scan so got CT & bone scans. Mets to hips, maybe spine. Since then yes to spine. Doc saying spine might have been missed by old doc….thought it was degeneration...mri to make sure. MRI found bigger area in hip so all got radiated. Spine rads soon. Hope to stabilize with xeloda soon. Good news is that they were found early so small areas to blast & 3-5 sessions only.Would not have gotten scans if no back pain. I hope yours turn out to be nothing.
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Thanks mamacure,
Will deal with my back when I get home from my dad’s funeral.
Hugs
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Bone mets caused a pleural effusion. Not breathing is what sent me in to see the doc. After about 6 drains, they put in a drain I could do myself. It worked. The fluid kept going down and the lung filled in the space. I'm taking Ibrance and Letrozole which seem to be keeping things at bay.
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