Bone Mets Thread
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Thanks moth, emac877 and Snow-drop.... this is all helpful information. Oddly, the Medical Oncology side of the clinic I'm on doesn't seem to have a nurse navigator. I was offered one in my one foray into the breast cancer side when I asked if this wouldn't be more appropriate for my diagnosis. But the doctor she came with (whom she idolized) was so unbelievably condescending I scuttled back to my current MO who had done the diagnosis. At least I felt he listened to me....most of the time, and could be convinced he should listen more carefully, which actually he has.
Same day as my denial for the CT scan, I was offered "Oncology Care Coordination" by some company that seems to manage the paperwork for the insurance company. I was worried that this might just be a way of "streamlining" my cancer care so I get even less of it, but maybe it would be worth looking into. Oddly the letter is from the insurance company itself, assuring me this program is focused on helping me reach my goals....wish they'd tell the denial doctor that.
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Also, Snow-drop, sympathies with your decline in care. So aggravating and unnecessary, like we don't have enough on our minds.
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LGP - welcome to the message board. Sorry you have to be here, but it sounds like it was caught early so that's good. I started off with Ibrance, Letrozole and Xgeva. Now I traded Letrozole for Faslodex just recently. I like the idea of radiation to zap your bone met. I had radiation 6 months ago and it really helped.
Prairie sea - So great that you enjoyed your hiking trip! I also love the idea that your friends are getting together with you for a weekend of fun. That's great medicine. I wish your oncology team would fight for you for insurance coverage. My MO has said that if I wanted a second opinion or sign up for a study, he would send any records needed. You just might need to be a squeaky wheel.
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prairiesea - Its definitely time to start squeaking! Honestly, if your doctor won’t fight for a scan after all these months have passed, it may be time to shop doctors. I know that is easier said then done because I recently made a switch and it took months of mediocre care before I finally was motivated enough to make aswitch. But I’m so happy I made a switch. You deserve better care even if your insurance is the one being a pain in the arse. You deserve someone who will argue on your behalf for what is right. And if you can’t get a PET (some insurance won’t budge) then get a bone scan or CT. For what it’s worth, I was diagnosed 19 months ago and have had 7 PET scans - one every 3 months.
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I'm not doing okay, friends. I have just been especially teary today, and I realized that for the past couple weeks tears are always there, just beneath the surface. I'm going about my life as normal, mom, teacher, wife, daughter, etc working, hosting people, and all it takes is a question and I can feel myself welling up, on the verge of falling apart.
I've got an appointment with the psychiatrist with my cancer center, but I need to reschedule. Will try to see her soon.
My leg hurts, and I don't know if it's just strain from radiation or change in the bone shape or if this is the beginning of another metastasis. My pet showed slight activity on the femur with no correlating lesion on the ct. The MO thinks it's just inflammation, but who knows. What if the Fulvestrant and the Verzenio aren't working.
I'm scared. I have young kids, and I don't feel ready to say goodbye, and as much as I try to keep these thoughts at bay, I can't.
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Star2017 - I'm sorry you are not doing well. This disease can be a real roller coaster. Just when I think I've got myhead on straight, I'm suddenly consumed with worry or tears or both. Lately, I can feel my nerves bubbling dangerously close to the surface. Yesterday at my PET scan, after giving the admitting nurse my medical history, she said “boy, you've been through the wringer. I'm so sorry." A few kind, empathetic words and I almost lost it.
Please believe that if this beast of a disease is confined to your bones, you won't be saying goodbye anytime soon. I would reach out to your doctor's office and let them know about your new pain. New pain should always be reported. When was your last scan? Hugs.0 -
prairiesea - I second RKs advice. It seems like "oh well i can deal with this" and the switch is a pain to make, but once you do it? you wonder why you didn't do it sooner. I made switch even though it took four months of tapdancing around the idea and boy was I thankful especially as they were able to restart my Xgeva that the other hospital stopped due to Covid. Its a far better relationship and I don't have any nagging doubts about my treatment or if someone, anyone is actually looking out for my wellbeing. I think at Stage IV thats doubly true. Is there a small step you can make today to looking into switching doctors?
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Big ((hugs)) to you Star2017. I wonder if there is some pain med you can take to sort of control that. I think if the pain would subside, it would calm you. Looks like you haven't been on Verzenio very long so there is still time for it work very well. It also sounds like you are super busy - is there any way you can delegate some of your must-do's and cut back on the things that don't have to be done? Maybe carve out some relaxing time for yourself and some extra time doing fun things with the kids? I hope you can get in with the therapist soon; I am sure that would help.
I have cried more times at the cancer center than anyplace else. I just look around at the people, and feel sorry for myself and I cry over that. Or I cry when they tell me something isn't true that I had believed all along. I think they are going to add a kleenex surcharge.
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Prairiesea / SomdraF - Good point with sometimes having to take baby steps to find a new doctor. I asked for recommendations on BCO as well as a couple of other pages I follow on Facebook. I collected that data and it sat for awhile until I was again motivated to make the next step. Then I started internet researching facilities in my area. I had to decide how far I was willing to drive and how much care I could get locally. I’ve now got a second opinion facility/doctor chosen in the event I need one. Finding a doc locally proved more difficult. Out of desperation, I contacted a local highly rated breast surgeon and asked the office who this doctor recommends for oncologists. They gave me three names. A little internet research and I had finally chosen my new doctor. I called her office immediately and within a week, they had obtained all my records from various facilities and I had my first appointment. I’m very glad I made the switch.
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Thanks, GoKale and RK2020. Your kind words help ease some of my fears.
I had a PET in September. The main tumor site showed significantly reduced activity (uptake to around 4) and there was the new site of activity (also around 4) that did not have a correlating lesion. My super direct MO was not concerned. I see my ortho oncologist next week.
I like working, and honestly I wonder if I'm having a hard time because I'm home today.
I do lose energy by the afternoon and can't really stay up to finish work. You guys reminded me that I need to schedule my PT. Maybe that will help with pain. I really love the PT I see. She's the one who listened to me talk about my hip pain last spring and realized it could be something more serious (that was after several months of other doctors dismissing my concerns).
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Star2017 - Some good PT can work wonders. Last winter I had terrible knee pain which I thought was being caused from a screw in my femur rod. As it turns out, the screw pain started me favoring the leg. Then I had an inflammatory reaction after radiation which caused me to favor that leg more. Before I knew it, I couldn’t use that leg to sit in a chair, use the toilet etc. I was caught in a downward spiral. The less I used that leg, the worse it got. My ortho oncologist noticed that my VMO muscle on the “offending” leg was basically gone. Some good PT targeted at strengthening my VMO muscle fixed my pain COMPLETELY. It was shocking how weak that muscle was when the exercise required me to use only that muscle. It was also amazing how quickly I regained the strength. Thank God for PT!! Good luck sweetie
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So glad the PT made such a difference for you RK2020! That's truly amazing. I've just scheduled to get in to see mine in a couple weeks.
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I'm so sorry to hear you are feeling down Star. I agree with RK that this can be a roller coaster. On top of that you are doing so much in your multi-dimensional life. I really identify with this....though I am older and could retire, there are dimensions of my occupational mission I want to complete, even moreso since my diagnosis. I hope you find ways to address your pain and the care to make possible to do the things you want.
Thanks also for your encouragement to pursue better care RK and SondraF. Amazingly while I was pondering this got a call from Cancer Center to schedule my PET CT. I expressed my surprise and explained the denial, and they said it had since been approved. So I guess for the present my doctor has seemed to leap in, and I have an appointment for a scan Tuesday. This is good, because changing would not be easy. I live in a small city and go to the one Cancer Center in town. I would need to change insurance companies to be able to go elsewhere, and cannot do that until my employer's next benefit choice period next summer. I will think about this in the meantime, but hopefully this change indicates that the oncology folks are for the moment on my side.
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Star, I am so proud of you that you have an appt for the psychiatrist. Please do reschedule for as soon as you can. You are going through difficulty and meds can help. I definitely needed antianxiety meds and eventually an antidepressant. Neither alter my personality, I still feel emotions but they do not overwhelm me.
As much as I am a huge advocate for doing things for our own personal benefit, what I realized after taking the meds is I began to have better relationships with my loved ones because I was not always on the edge. So the meds help both me and my family.
To me, it sounds like you are trying too hard to keep up a normal outward appearance. Ask yourself why you feel the need to cover all the bases. How good are you at receiving help from others? Are you able to say no to things you don't want to do or are you doing things so others aren't disappointed in you?
You've had a life changing diagnosis.
Do not minimize it.Feel all the feelings. Take care of yourself more. That may mean leaving others to fend for their very capable selves. Ask for help more often. I'm learning that my loved ones actually benefit when I am making sure my needs are met and when I choose to pamper myself from time to time.
I wish you the very best.0 -
prairiesea, so glad it was approved. Some scans are always denied at first. Then doc has to get on the phone and do the tap dance, and then they approve it. This has happened to me more times than not. I’m used to it now. I hope things are stable.
Star, I’m sorry you’re having a rough time. Hugs from here.
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KBL, good to know about the tap dancing! your onc would call the insurance or you asked him to do that?
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star2017 - you aren't alone in those feelings, I'm so sorry you are struggling. I have struggled too. I'm a nurse and still working. I agree, I tend to do worse emotionally on my non-work days. I think just not having the distraction is hard for me emotionally even though my job is hard on me physically. I see my job as therapy for my mind in all of this. I second what Divine says. I had to really redefine priorities and tell myself it was okay to stop when I needed to rest. I'm single with no kids so I don' t have those added pressures. I added Wellbutrin to my med list for the depression and also because there is some research linking it with cancer related fatigue. I didn't think it helped a lot until I stopped taking it and realized how much it did help me. I still cry and I still have strong emotions, which I think is totally normal in all of this, but it's easier to find my way back from it.
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Snow-drop, they do it. There is a go between with the insurance company. My doc orders the testing, they deny it, my doc calls and gives them what they need, and then they approve it. I won’t have to do that any longer because I’m now on Medicare. Hopefully things will be more smooth. I don’t get FDG PET scans any longer because they don’t see my cancer
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Hi all, I just had a quick question -- sorry, all of this is so new and I'm so overwhelmed. Did anyone have Next Generation Sequencing that revealed an ESR1 (or other) mutation? My oncologist is concerned about this....which doesn't put my mind at ease, because it rules out several drugs that otherwise might be effective in keeping the cancer at bay (at least for a while). I won't know genetic results for several more weeks.
She also suggested that my switch from PR+ (original tumor) to PR- (metastatic) indicated a more aggressive biology. She implied that I should prepare for the idea that I have 2-3 years left. I am extremely grateful for the time I've had since my original diagnosis, and I'll happily take any time I have remaining -- but I also wasn't ready to hear this hard truth. Nobody is.
I'm not even sure what I'm asking...I guess just if anybody has had a mutation that resulted in different treatment than an AI?
Thank you for the support, information and connection. It means the world to me. I cried a river yesterday.
Lisa
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we have a thread on ngs sequencing which might give you some leads
https://community.breastcancer.org/forum/8/topics/...
Also the clinical trials thread- esr1 mutations have been mentioned there very recently
https://community.breastcancer.org/forum/8/topics/...
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LGP1111, I hadn't heard about the PR- being more aggressive. I was PR+ the first time and am now PR-. When I look at the stats of many of the MBC women, it seems like a lot of us were PR+ but are now PR-.
Does anyone else want to chime in?
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thanks KBL, I am happy for you that you don’t have to be worry about insurance things anymore.
Moth, happy thanksgiving weekend:)good to see your posts, how is your arm?
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Sunshine, I was originally dx’d as ER+ at 90% and PR+ at 40%. My MBC dx is ER+ at 40% and PR+ at 90%. It’s just weird how things switch.
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To backtrack to prairiesea’s and other comments about insurance denials - in four years of treatment, with two different oncology practices, I’ve never had to call the insurance company myself and fight for scans or treatment approval. Nor was I ever denied a scan my doctor wanted me to have. Not because my insurance is so great but because the doctors office staffhandles that.
Both offices have handled all pre-authorizations, peer to peer conferences and whatever other hoops the insurance company required and that was with no input from me and I usually don’t even know what’s happening- to the point that one of my Perjeta infusions did not get paid for almost a year, the bill was going to my old address so I did not know...and I never heard a word about it! Finally, the insurance paid earlier this year and I got a letter about it from my insurer at my correct address. Doctors office never said a word, just kept treating me and billing dept handled it.
So, my point is - you deserve better. We should not have to be concerned about getting insurance approvals. That’s what the doctors office staff is for. If the doctor is providing standard of care treatment, they should be making the case to the insurance company.
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Lisa, Your MO seems not to be on top of things. First, PR-negative, it often happens in metastatic cancers, and there have been some data suggesting these cancers can be endocrine resistant and so not respond for long to anti-estrogen therapies. The thinking there is that because the PR gene can be turned on by the estrogen receptor, when it is not expressed it must mean that the cancer is not very estrogen-dependent. However, the PR gene can get shut off by other proteins even when ER is plenty active, and so its expression may have no significance. My mets were PR-negative and I was prepared to be endocrine-resistant, but it turns out I'm in year six of endocrine therapy... It really depends much more on a what other things are going on to drive the cancer.
Second, the ESR1 mutation is super-important, but not in the way she suggests that it takes you out of contention for endocrine therapy. It means you need to use endocrine therapy that is available in clinical trials and not rely on faslodex and Ibrance for your treatment. There are multiple options you can look at - for example lasofoxifene is a tamoxifen-like drug that inhibits ESR1 mutant (and non-mutant) cancers. Most all of the SERDs act on ESR1 mutant cancers, and AlabamaDee is on a trial with a drug called ARV-471 that may be the strongest of them all, for sure works on ESR1 mutants. It is not that having this mutation hurts your odds, it just means you need to pick the right medicine. They used to say the worst MBC subype is Her2-positive, until they got the appropriate meds, and now they say it will be the first one for which there will be a cure. So yep you need to get a second opinion, hopefully someplace where they have excellent trials, and prepare to live way longer than 2-3 years...
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Cure-ious, thank you for the additional information on the PR- stuff.
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Thank you Cure-ious!
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Does anybody else have mets to the spine with cord compression and had to have surgery, hardware? Cancer took over an entire vertebra and so they removed the whole thing, replaced with a cage of cement and railroad tracks, fused T4 to T8. That was March this year. I was very numb from my diaphragm to my toes and barely walking before surgery. I have gotten much better but still not normal, no matter how much therapy I do. My toes are still numb and I walk like a puppet, sensation still a little off from ribs down.. They are ordering followup MRI to see if anything is still compressing and to see whatever keeps hurting on one side. I'm thinking annoyed nerve and hardware hurts, not more mets hopefully. I can't stretch out and touch my toes or it cramps. Its not the same as the other much worse cramps from the thoracic myelopathy. Those have gotten better. I know my back can't bend normally and maybe there's just certain moves I can't do. Swimming sets it off too. Anyway its a lot to deal with, finding out stage 4 plus suddenly being disabled.
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DivineMrsM --I've been thinking a lot about your question. Why I feel like I need to keep up the appearance of normal. It's tricky because most of the time I don't. I don't really do anything I don't want to do or don't feel up to, but I also am more stubborn about being able to do the things I want because well, what's the point of being alive, otherwise?
[Edited for privacy]
I don't know if I'm struggling now with increased pain and stiffness because I'm back at work full time, because we moved, because my body is still healing and needs PT, or because there is something more going on. The pain is weird. It's the worst when I first get up from sitting or lying down. Once I'm walking around for a while, I don't really feel it.
emac877 -- I totally agree with you about the therapy aspect. It helps to be out of the house. It helps to interact with different people. It helps to have a purpose. And in teaching great literature, I always find something that touches me deeply as a struggle through MBC. One of the characters in a book I teach says that growing old is a privilege, and man, that truth hit hard.
MKestral -- I don't have any insight, but I hope someone else can chime in. I hope the pain eases soon.
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