Bone Mets Thread
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@norah2024 - My oncologist says MRI is the gold standard for this sort of thing and why they like to use it in these cases. There's no way you are the only claustrophobic person who wants sedation. I've met or read about here, a number of people who like Sunnidays suggested, get lorazepam, and they are very pleased with it. I am mildly claustrophobic and usually just closing my eyes is enough, but I can totally understand it not being enough for everyone. My clinic offers headphones with music and sleep goggle type things (lavender scented for relaxation), and that can help to. Can't believe your doctor suggested sedation is only for kids. As Sunnidays mentioned, why not see if you can get some lorazepam. So sorry and hope you find a solution.
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Thank you so much for your thoughtfulness. You are an angels.
They gave me the support and reassurance that I’m not alone.
I was very anxious over the past few days while looking for a hospital to do an MRI with sedation, and it caused me a lot of stress and pressure.
As for using benzodiazepines, I have tried them before during a dental procedure, but they were not very effective for me.
I prefer something that keeps me unaware and still, but not as strong as general anesthesia.
The sedation they usually use for me is called (Propofol) and it works very well for me, even though I may wake up once or twice during the scan — they calm me down until the procedure is completed
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HiWishing everyone a Happy Thanksgiving, and I hope you all enjoy a peaceful and restful holiday.
This is a brief update on my situation since my last post.
I started CDK4/6 inhibitor treatment in August 2024 and completed 15 cycles. My CA 15-3 markers kept rising for months, only dropping for a short period before increasing again to 227 by October. Despite this, several PET/CT scans continued to show good response in the previously affected bone areas (tibia and L4).
Because of the mismatch between the rising markers and the scans, I had multiple MRIs (lumbar, thoracic, abdomen, chest, and pelvis) between May and October. None of them showed clear new lesions.
In October, I also had pneumonia and paused Kisqali, but the chest CT was normal.
Recently, I repeated a PET/CT instead of doing more MRIs. This scan showed three active lymph nodes (supraclavicular and mediastinal) and renewed activity in the tibia (SUV ~4).
My doctor now wants to perform a biopsy from either the tibia or one of the lymph nodes to check for mutations. If no mutation is found, he is considering switching me to Enhertu as a second-line treatment.
My question is: Why should Enhertu be the next step? I thought Enhertu is usually used in later lines, and if it fails, the next option may be chemotherapy.
Has anyone experienced something similar? I would appreciate your input, as this uncertainty has been very difficult since May.
Thank you
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@norah2024 I guess I'd wait until after the biopsy to see where you're at with future treatment possibilities. It seems some people do get pretty extended periods on ENhertu before progression, but there are lots of other options available depending on the vulnerabilities your cancer is exploiting. At least you now have an answer to the rising tumor markers and can move to something that works.
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Thank you for your response,
And indeed, all I can do now is wait for the biopsy results to know what type of cancer this new lesion is and what treatment options are available.
The doctor is also suggesting a gene mutation test and will offer treatment options if I have that mutation.
I’m hoping he can put me on other treatments in pill form instead of Enhertu, which is given intravenously.
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Hi everyone I have an update and some concerns that I would like input. The good news is that I am continuing now to be stable. Many lesions according to my last scan which was done in June 2025. Prior to that I was getting scan every 3 to 4 months plus MRIs when things popped up. My tumor markers are now in the normal range and thus far have been accurate. My oncologist is not doing any scans she said now until I have symptoms or my tumor markers rise. I am upset about this. She said that data is showing that it is not good to get to many PET scans . I literally begged her for one. She said no and then said if needed she would not hesitate. Unlike some other patients or even perhaps some of you here I would not mind getting scanned everyday. LOL. Is this normal when one is stable not to get scanned as much. I don't want anything to be missed. Remember they found my METs by accident. I went to ER for something else and CT scanned showed it. She has not in the past hesitated to order something but I want to stay ahead of everything. She just says tumor markers are good,blood work is good,and unless I have a new symptom she will not order one,or if my tumor markers start to rise. Please for those of you who are stable how many times do you get scanned. Is this new?
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@jen1 This doesn't seem right to me at all. I have a nuclear bone scan and a CT scan every 3-4 months, and that is the standard of care here in the US. I don't get this. Tumor markers are not always reliable. Can you seek a second opinion at a major cancer center?
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My oncologist is pulling back on the frequency of scans since my tumor markers have been reliable. If they go up or I have symptoms, she orders a scan. I do get my brain MRI every 3 months. I’m good with that plan.
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Hello everyone,
Here is an update on my situation:
I recently had a PET scan which showed progression in my right tibia (again) and in three lymph nodes.
I saw my oncologist today, and we reviewed the PET scan together. He explained the treatment options again, but before choosing the next line of therapy, he wants me to have a biopsy and genetic testing.
I then met with the radiologist who will perform the biopsy. He said the biopsy will be taken from the right supraclavicular lymph node. However, he mentioned that this area is sensitive and technically challenging because of a nearby artery and vein.
This made me very hesitant, and I’m unsure what to do.
I asked whether a biopsy could be taken from the tibia instead, but he said they need an area with enough soft tissue, not just bone.
I also asked my oncologist about being without treatment while waiting for the biopsy and genomic testing, which could take up to a month. He said we could potentially start one of two treatments that can be used regardless of mutation status: Enhertu
or Exemestane + Everolimus.
What would you advise? Has anyone gone through a supraclavicular lymph node biopsy before?
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Hi @norah2024
so, I haven’t had the biopsy you are about to undergo, but I have been off meds for almost 2 months last year with no noticeable change to my tumour markers or PET scan.
I have been on Everolimus and Exemestane for the past year (plus Xgeva) and they have worked really well. I have had zero side effects and have been on the highest dose. Unfortunately they have ceased to work for me, so on to something new. Not sure yet what that is. Waiting on results from a liver biopsy.
I have mets on my spine, but my doctor was hesitant to biopsy as he said bone biopsied can be painful and they don’t always get a good sample.
Anyhow, don’t know if any of that helps, but hope it all goes well. Hugs.
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Thank you so much for sharing your experience — it really helps.
It’s reassuring to hear that you were off treatment for almost two months without any significant changes in your markers or PET scan. That definitely eases some of my anxiety about waiting for the biopsy and genomic testing.
I’m also glad to hear that Exemestane + Everolimus worked so well for you and with zero side effects. It gives me hope, since this is one of the options my oncologist mentioned while waiting for results.
Your point about bone biopsies is also helpful — my radiologist said the same thing, that they can be painful and sometimes don’t provide a good sample, which is why they prefer the supraclavicular node.
I’m seeing my oncologist again today to discuss the possibility of not doing the biopsy, because I’m really worried about the risks of the procedure. I want to hear his opinion about skipping it, and I will also ask him to prescribe one of the new treatments instead.
Thank you again for taking the time to reply. I truly appreciate it. Sending hugs back to you. 🤍
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Hi Norah, I was dx as mbc 11/2019 from a superclavical lymph node biopsy. It was ultrasound guided for the reasons you mentioned - close to a large artery and veins. The ultrasound is how they worked around the artery and veins and they were able to get the tissue for the biopsy without any damage . I'm not sure if your onc mentioned an ultrasound guided biopsy so I wanted to share my experience.
Hope your meeting goes well today !1 -
@sprilgirl1 @rstogether
Thank you for your cooperation and for responding to my post — I truly appreciate it.
Here is the latest update on my medical situation:
I went to my oncologist today to discuss the biopsy and the new treatment plan. After I expressed my concerns about the risks of doing a biopsy in the right supraclavicular node, my oncologist called the radiologist to discuss it. The radiologist said that because the area is sensitive and the node is small, he wouldn’t be able to obtain the number of cores the oncologist requested (he asked for at least three cores). Instead, he could only perform a fine-needle biopsy, which would not be sufficient for genetic testing.
The doctor then suggested another area: the subcarinal lymph node. However, accessing that area is difficult, requires general anesthesia, and is similar to a small surgical procedure — and there is no guarantee they would obtain enough tissue. Because of the risks and the uncertainty of success, I refused to proceed with that option.
I then suggested starting treatment with Everolimus and Exemestane, and he agreed to this new treatment plan. He explained all the side effects of this medication and asked me to start it for 10 days, then do blood tests: cholesterol, kidney and liver function, and a complete blood count. After one month, I will check the tumor markers to monitor them. If the treatment goes well, I will continue it for three months until the next PET scan.
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I had a bone biopsy in 2022, and it confirmed the met was the same as my original breast cancer, but not much other info. Bone biopsies don't generally provide enough testable tissue. I was given conscious sedation, so the procedure wasn't painful for me, and the test area had a minor dull ache for about a week. Since I continue to have only bone mets, my MO suggested a liquid biopsy at my next blood draw, just to see if anything else pops up. Don't know if that would be an option for you. Sounds as though you're doing an excellent job analyzing your options and making good choices.
So cheered by your experience of having no progression despite being off of treatment for two months. I am in the middle of a similar situation. I have been off of Kisqali for 3 weeks in July and currently off for 5 weeks and will likely not be back on it for another few weeks due to significant antibiotic treatment for persistent diverticulitis. My scans 3 weeks ago showed a tiny rib met "lighting up" and that was quickly radiated. My CEA level went from 5.0 to 9.2, and my MO thinks it was a combination of the rib met and the GI inflammation, which can also elevate CEA levels. Hope the liver biopsy leads to an effective and easy treatment.
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Thank you @eleanora
You are truly amazing people in this forum.
I get answers to my questions very quickly, and you don’t know how much this makes a difference in my understanding of my treatment and my condition, especially when I see real people sharing their experiences with such detail and offering advice with such sincerity.
As for taking breaks from the medication, this did happen to me when I got pneumonia and had to stop the treatment for almost a month.
But I don’t think the progression I have now was caused by that, because my markers had been rising significantly for months, and my doctor and I were searching all over my body for the source of that rise.
And now, after finishing this whirlwind of tests and the decision about the new treatment, I am currently in another whirlwind—trying to find the new medication at an affordable price, since I don’t have insurance and I pay all expenses out of pocket.
Thank you all, and I wish you a joyful holiday season.🎄❄️
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After 8 years being diagnosed with ILC and being treated with Arimidex and stopping it after 5 years, I developed severe back pain and a Dr. sent me to get MRI, sent to My oncologist and got PET scan last Thursday. Results show my cancer metastasis to my ribs, spine and sacrum. My oncologist put me on Tamoxifen and gave me Dilaudid for pain as I am in intense pain when I stand more then 2 minutes. Does Tamoxifen help kill the cancer? And the pain? I’m a newbie and didn’t realize it could spread to another area. I guess I am naive, but I want to fight this with all my might. Has anyone else had this? Thank you❤️🙏
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@xsuzx It sounds like your at the beginning of this stage IV journey. Really sorry about the pain you are experiencing but hopefully your treatment can get it under control or you can have radiation treatment to those areas. I don't know all the specifics of your case, but you might want to ask for a biopsy to see what kind of cancer you're dealing with and if there have been any changes since your original diagnosis. And you should ask if a CDK4 inhibitor (ie. Kisqali or Ibrance) should be added to the Tamoxifen, since that is what most HR+ folks are taking these days and it's really been extending people's lives. Tamoxifen is a great drug, but at this point, you might need more. Are you seeing an oncologist with expertise in breast cancer at a major cancer center? I'd recommend that you do.
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thanks. Yes…..I am 3 days into this new diagnosis. My oncologist specializes in breast cancer and other cancers. He did mention a bone marrow test and possibly radiation to help with pain if the Tamoxifen doesn’t work. I’ll mention it all when I see him 12/23 and mention CDK inhibitors. I was just in shock Friday that I wasn’t in worse shape like I thought and that I will be here for Christmas. I was scared to death. Thank you.
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@xsuzx It's so hard to imagine and so stressful when you're first diagnosed. But we are in a world of new treatments that are extending our lives for years. There is hope.
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This is the latest update on my condition:
The most recent PET scan showed disease progression and recurrence in the same tibia. The scan also showed uptake in that area as well as in three other lymph nodes.
My doctor decided to change my current treatment (Kisqali and Faslodex) and gave me several possible treatment options and scenarios. He said everything depends on the biopsy. He wanted to perform a biopsy to obtain enough tissue for genetic testing.
After consulting the radiologist, it was confirmed that the areas showing progression cannot provide enough tissue for a proper biopsy — they cannot obtain three cores as my doctor requested. They can only perform a fine needle aspiration, which would provide cells only, just enough to determine the type of the new cancer.
Because it is difficult to reach a suitable area for a proper biopsy, I refused to undergo it.
So my doctor decided to change my treatment to Afinitor + Exemestane.
Now I am moving to a new treatment and I don’t know how my body will react to it. This worries me, because I was able to tolerate Kisqali for a year and three months without major issues, aside from the continuous stomach pain.
I am not fully convinced about changing the treatment, because my doctor previously told me that if progression appears only in the bones, we could give radiotherapy and continue the same treatment. I don’t understand why he is pushing me to change it now — he is worried about the rising tumor markers.
I also cannot risk continuing alone on the same treatment and fear further progression.
I remained stuck in this confusion and lack of conviction, but I will start the new treatment and see what happens.
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@xsuzx Tamoxifen for pain?? That really surprises me as I had to get off of Tamoxifen after 2 years due to pain and uterine lining buildup (switched to Arimidex 4 years, also had to get off due to joint pain). I am just popping in to reassure you that radiation for pain is MAGICAL!!!!! I had it daily for two weeks in February for severe neck and sacral pain - and felt so much better. Immediately better for sacral, and the neck treatment (pinched nerve pain that radiated around to sternum) took the full six months to feel completely better. I am on Faslodex injections now versus Tamoxifen/Arimidex. I hope you get pain relief soon!!
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thank you. The Tamoxifen is to kill the cancer and my oncologist said it will help with pain. He did mention possible radiation if pain does not stop. It’s only been 4 days now. Arimidex made my joints hurt which is why I was happy when I was taken off it after 5 years. I was good for about 4 years until this. I am on Dilaudid for pain which I am feeling relief from finally. Encouraging that radiation took your pain away. I will talk to my Dr. the 23rd about it as I don’t want to be on pain medication forever. Thank you. And Happy Holidays.
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@norah2024 I suppose the suggestion of a treatment change may also be due to progression in the lymph nodes, yes? I hope you have a successful run on the new treatment, but I can understand why you might find this whole thing really scary. I would too.
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I’m not sure or convinced by what the doctor is saying — that the progression in the lymph nodes is due to cancer progression.
I had pneumonia a month ago, and there are studies showing that it’s very likely for lymph nodes to become inflamed, especially the ones in the neck area and the mediastinal bone, because of pneumonia.
I’m really not convinced by the current diagnosis, nor by stopping my previous treatment.
I feel that I could have still benefited from it for a few more months.
But I can’t make such a decision on my own.
I don’t fully believe that the doctor is suggesting Enhertu and trying to convince me it’s the best second-line treatment for me.
I know Enhertu is powerful and effective, but I’m not convinced that I need it right now.
I was the one who insisted on finding an alternative instead of Enhertu, and that’s why he suggested this new treatment.
I don’t know if I’m acting correctly or if my doubts are justified, but this is how I feel — and I’m not comfortable at all with changing the treatment this way.
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so this is all getting quite real for me now. Dr called for me to make appointment with Pain management Dr. and radiation consult. I just made my appointments. They did a genetic testing blood test last week. And I am on my tamoxifen. Still taking pain meds ( Dilaudid) every 6 hours. I guess this wild ride is beginning.
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@xsuzx That wild ride can sure feel like a bucking bronco at times, but hopefully it will settle down into a peaceful mare in the field soon.
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