Bone Mets Thread
Comments
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Thank you, Joyner. I see a bone biopsy is different than a bone marrow biopsy. I'm confused on being in bone vs bone marrow. I will ask my doctor. You've had really great success in keeping it under control. I hope you get many more years.
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KBL: my bone mets were discovered by my PCP. I had seen my PCP because I was having trouble sleeping due to lower back pain. When I tried to sleep while lying on my back, it felt like I was on a porcupine. After about 45 mins, I had to get out of bed and sleep in a chair. This went one for almost a week. I have a history of back pain but this was different. It hurt in the back but pain also radiated to under ribs
I told my PCP that I was watching my ALP numbers going up and that they had just gotten above normal range in my last blood work tests
X-rays showed a disc compression in T12 vertebrae and stenosis in lumbar. PCP sent me for MRI of spine. I got the feared phone call— mets found all over my skeletal system. The compression fracture and stenosis was not cancer related. But, in thoracic spine (T8) was one of the most active bone mets.
I returned to MO. He ordered a lot of MRIs and a PET scan. He sent me to radiologist for palliative rads to thoracic spine. The bone met at T8 was close to the spinal canal and was pressing on a nerve bundle.
Since this MBC was a new diagnosis, I was scheduled for bone biopsy of a bone met in my pelvis. It was an area that they could get to easily. Biopsy was used to confirm bone mets were from my 2017 breast cancer dx.
Sorry you have been diagnosed MBC, too, but welcome to this group. There are so many knowledgeable and thoughtful people here to get great advice and information from.
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Hi, DodgersGirl. You and I have spoken in a different thread, but I’m still trying to make sense of all the crap I went through in 2013 and 2016 with them telling me I had multiple myeloma, which I didn’t, and then getting the BC diagnosis in May of 2019. I want to know if it’s been lurking since 2013. I just don’t know if I’ll ever know. I think it’s the difference between having the cancer for a few years vs. seven, with no treatment for six years because of misdiagnosis. I’m just stumped and will talk with my oncologist about having someone look at my pathology and old MRIs for a second opinion. I think it’s important to know if I’ve had this since then. On the MRI reports it said I had multiple 1cm small lesions on my spine.
Thank you for telling me your story.
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BevJen, The RO is not part of my team, I just went for a consult on my own, picked him out of the phone book- my MO was just planning to watch and wait- she has since said she's now recommended to a couple other patients to go check with an RO if there is something that can be done for minor progression on bone mets
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Cure-ious,
Thanks. Well, I got my MO involved in trying to determine who I should see (meaning who she would recommend). She has been trying to be helpful over the last couple of days. Turns out that she now thinks I should go and see my RO from my original diagnosis in 2003 and has communicated with her, although that RO does not do anything interventional if it's suggested. However, I love her -- I just didn't think she was the person who I would go and see bc she's not "housed" in the mother ship but in a suburban radiation facility. Anyway, I will call her on Monday and see if I can get on her dance card. I trust her implicitly -- she's terrific -- and if she thinks anything can be done, she will definitely refer me out to who can do that. So I'm feeling better about the whole bone thing.
I honestly think that most people, like me, probably assume that their MOs "read" their scans in addition to the reports that are issued -- I have seen evidence of that here on BCO when someone randomly mentions it. It's become very clear, though, that my MO doesn't do that, and I'm not sure how many really do. She fixates on the wording in the report, as she should, but can't really explain what different terms mean and their implications. I'm guessing this is true of many MOs. It's not necessarily their "fault" -- it's because modern medicine has each specialty in a bubble. From a patient's perspective, I think that's hard to deal with.
If anything, this has been another lesson to me in self-advocacy. It is so important for all of us.
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bevgen xgeva vs.Zometa. I've had both Xgeva along with 4 mos. of ful/ibr. Ibrance failed me and the Onc took me off of it.
He put me on monthly Zometa, a thirty minute drip. I've never had side effects from it. He didn't think Xgeva was working.
DO NOT let them put you put you on a 15 minute drip. That's bad news. At my ONN all bags are pre-set to thirty min. I've never had side effects from it. My Onc also mentioned that of the two of them Xgeva was the best
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BevJen- concerning if MO reads scans. Mine does not. She reads the radiologists typed report. Not the images. She told me that once. Of course, right now I am not too impressed with my MO on several counts.
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Well, I also don't think it makes them bad MOs, just that its helpful for us to know what they are and are not experts at, and that there can be other people out there who we may also want to consult when it comes to radiation
Some approaches combine immunotherapy with radiation, and an MO may not be familiar with those trials
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Cure-ious,
I think that actually interventional radiologists know a lot more about combining immunotherapy and radiation than either MOs or radiation oncologists.
No, I don't think that it makes an MO bad not to be able to read the actual scans. There's only so much knowledge that a brain can hold! But I do think that the big cancer centers should aim to coordinate a bit more among the relevant departments who could be dealing with folks like us. What is the point of going to a big center if, as a patient, you are not aware of or able to take advantage of the various specialties that could potentially help you?
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I'm not sure my MO looks at scans and maybe just reads reports, but if something is unclear to her or she thinks odd, she will call the radiologist for clarification, so she can better explain it to me.
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I don't believe that my MO reads the scan herself, either, though I assume that her understanding is more in-depth than mine. On the other hand, I feel as though I'm ready to sit for my "boards" in radiology at this point, after studying results, with Google at hand, for 3 1/2 yrs since BMC diagnosis!
KBL, when my chest CT scan, for something entirely unrelated, showed multiple sclerotic mets, my PCP immediately said that the scan made it appear that I had either lymphoma, multiple myeloma, or MBC and that the latter was likely because of my history of BC. I had the bone biopsy immediately, and MBC was diagnosed right away. I don't understand, either, why your docs didn't pursue your situation further at your first suspicious scan.
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Good to know that other MO's cannot/do not read the scan images either.
BevJen- I agree. If you get your care at a large center that offers various disciplines, then you want coordination so you can take part in what they offer. Someone to coordinate and let you know what is offered. Like you said, otherwise not integrative care.
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JoynerL, thank you for the information. What does a bone biopsy entail? It's easy to have an endoscopy biopsy. I've had three, and there was no pain with any of them. The bone marrow biopsy was more painful. I was talking with my husband tonight. I'm so frustrated with scans. They show me nothing, not even the cancer in my stomach. How am I supposed to know if it's spreading? If I hadn't had the weight loss and early satiety, I still wouldn't know it was in my stomach. Is my only option going to be to have biopsies? That will suck. My tumor markers have been up and down monthly, but they've gone up two months in a row, which is a first since starting treatment. I will be having them tested tomorrow.
We stopped after MM was not present. It's been four years since my last MRI of my pelvis, which seems to be where they saw what they saw. They haven't mentioned one thing about lesions on my spine from any of the three CT scans. Nothing has ever shown in a PET. I don't know where to go from here. I want to live a long time, but how will I know if Ibrance and Letrozole are working when scans don't tell me if it's spreading?
I will be asking my doc tomorrow where do we go from here? I need to know if things are working. It's so frustrating.
Thank you, again, for taking the time to answer
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KBL,
I'm jumping in here for just a moment. I'm sure if others who have lobular see this, they will also jump in.
This is the curse (if that's the word) of lobular. When I was originally diagnosed, I had had a "clear" mammo less than 6 months before. I had had LCIS prior, and so I faithfully saw a breast surgeon every 6 months (this was in 2003). I called her out 5 mos. out and said that my breast was hard and my nipple was retracting. She got me in. They did another mammo, which didn't really show much, and then did a breast MRI (which at that time was very new and required jumping through hoops to get covered.) Okay, they thought they had a handle on it. Thought is was not that big. Thought no lymph node involvement. Terribly wrong on both counts. Stage IIIC.
Second time: 2006. Found during a routine gyn exam.
Third time: starting in 2018, tumor rise. Nothing on CT, bone scan, PET -- for a YEAR. This is the sneakiness of lobular.
There is a radiologist in NY named Ulaner. Look him up. He has written a lot about scans for lobular. He generally recommends PET, I think, but some lobular cancer isn't PET avid, so it won't show up.
I now have a CT done every 3 months. I also see an interventional radiologist who orders an MRI of my liver/abdomen every three months. So that's the imaging that I'm working with. Even with that, they don't really know what they are seeing.
So I feel your pain. But there is no answer really for us. Sometimes this just shows up as an incidental finding, as what happened with you before. I would just say to read as widely as you can, report any and all symptoms, etc.
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Thank you, BevJen. I know I'm jumping the gun a bit since I've only been on this treatment for a year, but I so want to be ahead of the curve. It's just one of those things for us that because it's lobular, it doesn't work that way. I think my issue with all of it is that it's not even in my breasts, and I was diagnosed Stage IV out of the gate. I had beat myself up because I hadn't gotten a mammogram in about five years. Made no difference. They still say there's nothing there. I really appreciate your response. I will keep a close eye on symptoms and look up Ulaner.
I am still very interested in this thread, as I can see what others felt when it went to their bones.
Edited to add: Yesterday you had told me t look up Rachel Jankowitz, and today you said to look up Gary Ulaner. I just found an LBCA seminar where both of them speak. I am going to watch it tomorrow. What a coincidence.
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KBL, I have read that some (many or most?) people are asymptomatic with bone mets, but I had intense and sudden back pain in July 2019, and I think that intensity was related to a compression fracture at my T10 vertebra. The pain was worse at night, probably from the pressure when lying in bed. An x-ray showed unspecific abnormality at T10, and subsequent bone scan showed multiple areas "highly suspicious for bony metastases." A month later, I had severe pain in many different places in my back, and it sometimes radiated around to my front right ribs. In October, an MRI showed extensive spinal metastases, and CT showed similar lesions in my pelvis. Breast MRI and subsequent biopsy led to my ILC diagnosis. My breast lesions had not been detected on a mammogram or ultrasound 5 months earlier.
Today, my back discomfort is a tiny fraction of what it was. I believe this is the result of my targeted radiotherapy and the Ibrance/letrozole treatment.
I am curious about how common or uncommon my experience is -- that is, whether pain led to the discovery of bone mets for other ILC people.
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KBL,
They are both known names in lobular. The problem is that most MOs haven't seen that many cases of lobular.
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JodyJ, wow, that sounds so painful. I’m so glad they were able to figure it out and that your back is feeling better. Thank you for sharing your experience with me. I like to hear the stories of how people found out it was lobular because it gives me understanding to know I’m not alone in my feelings.
I’ve had back pain since a car accident in 2013, which is why they did the MRIs.
BevJen, I will definitely watch the video today. I am so appreciative you told me to look them up. Thank you. I’ll ask my MO today how many patients they’re treating with ILC.0 -
KBL, I'm going to PM you the medical details from the report of my bone marrow biopsy procedure. I found the idea of the bone biopsy frightening but that ultimately the procedure itself was not painful. I'm unsure whether you need this or not, as you appear to have had a bone marrow biopsy, too, which both of mine were. I'll send anyway, just in case.
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Thank you, Joyner. I messaged you back.
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Hi KBL - I, too, had a bone biopsy, but not a bone MARROW biopsy. When they were prepping me, they said it was for a bone marrow biopsy, but I said that I thought that it was a biopsy on the lesion on L4 or L5. They checked and said I was right. (Glad I said something!)
Anyway, the procedure was they started an IV on me, I was taken to the CT scanner room and I laid face down on the table. They sort of strapped my arms (loosely) above my head so that they wouldn't fall off during the procedure. They did the CT scan and then the nurse said, "Here's your party juice" and that's the last thing I remember. They called it "conscious sedation". I woke up in recovery and was there for about 30 minutes, I think. Then I got dressed and they walked me out to where my husband was waiting in the car and that was it. I don't remember any discomfort during or afterwards - maybe a little swelling around the spot where they did the biopsy.
The scheduler referred to it as "interventional radiology". (All I could think of was the scene in "Finding Nemo" where the sharks call out "Intervention!!!" on one of the other sharks.) All in all, it was pretty much a non-event. I hope yours goes as well.
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Hi, Sunshine99. I don't know what the difference is between a bone marrow biopsy and a bone biopsy, so I think I'm going to start finding that out. If you have any information on the difference, that would be great.
I'm not having any other biopsies right now, but I am set up for an MRI. I'll see if the insurance company will cover it. I've had three MRIs, 2013, 2015, and 2016, all say suspicious for metastatic cancer, but since they thought it was Multiple Myeloma, I didn't go any further once that came out negative. Now that I have the breast cancer diagnosis, I'm going to dig deeper if this one says the same or the lesions have grown in size. I want to know what they are.
Thank you.
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Hi KBL,
I wanted to chime in to say that, even thought I have not been diagnosed with ILC, I completely understand your frustration with scans. I think we tend to feel that these scan are 100% effective at tracking our disease but it appears that it is often not the case. In my case, bone scans are completely useless despite the fact that I have extensive sclerotic mets throughout my body. It seems I need a CT to pick it up. My personal suspicion is that it's a function of my slower growing cancer - I'm not sure a PET would be more helpful. I also suspect there may be a lobular element to my cancer as mine seems to have a propensity for membranes. I had early progression in my gut around the capsule of the liver which was described as "thickening" - found after I started experiencing pain.
My MO's approach is to consider not only the scans but also symptoms. He acts quickly if I have any new durable pain, ordering new scans, including an MRI when we were concerned about possible progression to the brachial plexis.
Hi post too quickly - I meant to add that I do feel the challenges of getting a complete picture from scans has been one of my greatest challenges since my stage IV diagnosis. I often feel like a hypochondriac - a huge departure for me as I never went to the doctor before. Now, every twinge puts me on high alert. The lack of clarity with scans means that I don't completely trust the outcome. And I don't really know what to wish for when I am dealing with some unexplained symptom that is causing me grief but could be just my aging body or ??? Hard to put cancer out of my mind given this...
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Update on radiation treatment to T11: the treatment was relatively easy and uneventful. I was nervous and with the mask on, I felt like I was breathing too strongly but my RO was pleased.
I felt no pain during the treatment but was warned I could have some pain later, which I do have. Ibuprofen dulls the pain and I am managing well. One down and one to go
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Hi, Sadiesservant. Thank you for responding. I have to say some of you have been dealing with this disease for such a long time, and I give great kudos to you all. I can’t even imagine.
If the cancer has been there since 2013 and I haven’t treated it, I’m a little glad I didn’t know. I’m not sure if that makes sense.
It’s making me feel better that I’m not alone in my feelings. I totally understand the feeling like a hypochondriac. I feel like every time I go in, I ask for something different. I think it’s a good thing because we are fighting to stay here and want to be a part of our own care.
I hope your treatment continues to work and you have no more progression. I really appreciate you telling me your story. It really helps.
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KDL, I (thankfully) don't know what a bone marrow biopsy is like, except that I've heard that they can be painful. Here's hoping neither of us will need one!
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Sunshine, a bone biopsy is not painful. You are sedated much as you are for a colonoscopy. The patient won't feel anything and won't remember much of anything. It's mentally alarming, but in fact, it wasn't bad. I've had two.
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Sunshine99, I had a bone marrow biopsy in 2016. It really wasn't that bad. I had some minor pain for a few days after. I was actually sedated. Some have just some kind of local and are awake.
JoynerL and I were writing at the same time. LO0 -
Good to know! The bone biopsy really was quite easy. I had one oncologist tell me when he was treating me for polycythemia (high red cell count) tell me, "You seem like a nice lady and I don't want to do a bone marrow biopsy on you." We never really resolved the high red cell count issue, but since it wasn't causing me any problems, he said I didn't need to keep seeing him. He was a really nice man.
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KBL- I have had a bone marrow biopsy and a bone biopsy. The bone marrow was an outpatient, local anesthetic, a large bore needle is jammed into my hip while I was lying on my stomach and marrow is extracted. This was how my bone mets were diagnosed. ( I presented with fatigue, anemia and other blood tests were off- leading my MO to think that I had a bone marrow issue- it could have been lymphoma, leukemia , MDS or breast cancer) it was breast cancer. This was followed by a PET and Tumor Markers which both confirmed the bone mets.
The bone biopsy was as others above have said- conscious sensation and they chose a bone that PET scan said was active- front of my hip so I was on my back- It was done in an outpatient surgery room using CT or fluoroscopy to guide the biopsy. I felt the pressure and slight discomfort- was in recovery with nausea for about 30 minutes- got an anti nausea shot and then went home. This biopsy was done to check for mutations.
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