Topic: Bone Mets Thread

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jun 22, 2012 04:09AM - edited Oct 28, 2021 03:22PM by moderators

Posted on: Jun 22, 2012 04:09AM - edited Oct 28, 2021 03:22PM by moderators

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.

https://youtu.be/YpFfLrITfEI


Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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May 18, 2022 08:13PM gailmary wrote:

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

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- Dx 4/13/2017, Stage IV, metastasized to bone Radiation Therapy 5/24/2017 Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole)
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May 18, 2022 08:35PM moth wrote:

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.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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May 19, 2022 08:23AM rk2020 wrote:

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.

Surgery 5/1/2016 Lumpectomy (Right); Lymph node removal (Right): Sentinel Chemotherapy 6/20/2016 AC + T (Taxol) Radiation Therapy 9/1/2016 Whole breast: Right breast Hormonal Therapy 1/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/10/2020 Faslodex (fulvestrant) Targeted Therapy 3/28/2020 Ibrance (palbociclib) Radiation Therapy 2/22/2021 Other part Hormonal Therapy 9/1/2021 Arimidex (anastrozole) Targeted Therapy 9/1/2021 Verzenio Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External Radiation Therapy Whole breast: Breast, Lymph nodes Local Metastases Radiation therapy: Bone
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May 19, 2022 09:08AM candy-678 wrote:

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.

April 2021 first progression and flip ER-/PR+ now. Current treatment as of Sept 2021 is Lynparza, Lupron (been on since Nov 2017), and Xgeva (been on since Nov 2017). Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2017 Femara (letrozole) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Dx 4/2021, ER-/PR+, HER2- Targeted Therapy 9/1/2021 Lynparza (olaparib) Chemotherapy AC Surgery Lymph node removal; Mastectomy; Mastectomy (Left)
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May 19, 2022 09:10AM cowgal wrote:

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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May 19, 2022 10:06AM bevjen wrote:

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.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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May 19, 2022 10:44AM sunshine99 wrote:

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

my-sunny-side-up.com Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External Local Metastases 5/5/2020 Radiation therapy: Bone Radiation Therapy 5/12/2020 External Local Metastases 5/12/2020 Radiation therapy: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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May 19, 2022 11:58AM sf-cakes wrote:

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 ❤️

This is some bullshit. Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy; Mastectomy (Left) Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External Local Metastases 2/10/2021 Radiation therapy: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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May 19, 2022 01:56PM rk2020 wrote:

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.

Surgery 5/1/2016 Lumpectomy (Right); Lymph node removal (Right): Sentinel Chemotherapy 6/20/2016 AC + T (Taxol) Radiation Therapy 9/1/2016 Whole breast: Right breast Hormonal Therapy 1/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 3/10/2020 Faslodex (fulvestrant) Targeted Therapy 3/28/2020 Ibrance (palbociclib) Radiation Therapy 2/22/2021 Other part Hormonal Therapy 9/1/2021 Arimidex (anastrozole) Targeted Therapy 9/1/2021 Verzenio Chemotherapy AC + T (Taxol) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External Radiation Therapy Whole breast: Breast, Lymph nodes Local Metastases Radiation therapy: Bone
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May 19, 2022 08:59PM star2017 wrote:

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!

CURRENT: Stage IV since 2020, bone mets to rt hip, sacrum, femur, all treated with radiation. Taking Lynparza daily. Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Silicone implant Radiation Therapy 5/21/2018 Whole breast: Breast, Lymph nodes Surgery 10/24/2018 Reconstruction (Left): Silicone implant Hormonal Therapy 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External Hormonal Therapy Faslodex (fulvestrant) Local Metastases Radiation therapy: Bone

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