Bone Mets Thread
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delittkemann - you are not alone in this. We all understand and have been through these fears and the anxiety of waiting for results and then getting the results and going through even more emotions... of course we pray those are happy ones, but we all know we eventually face results that also leave us scared, sad, frantic etc. But you aren’t alone. We are here. We can hold your hand or hug you from a distance, share our experience, and offer advice. Your docs are there. They will get you through results and onto treatments that could really help. Count on family and friends to help get you through as well. They will want to help. Let them
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dlittkemann- In your pocket for your scans. IMO, no it doesn't get easier. The scanxiety is still there for me after 2 1/2 years stable. I go for scans tomorrow too. I always wonder if this will be the scan that shows progression. But, saying that, you got this. Whatever it shows, we are here for you. Bring your questions here and we will help answer them. Hugs.
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This is interesting...I have found that it does get easier for me. Maybe I'm just getting used to the stress of waiting and wondering, but I don't get as anxious as I did earlier on. My scans are every three months, and my next is in late June, next month. I know that ultimately, there will be a problem. Maybe I'm not very smart to not get as worked up...but I don't. And worrying doesn't change anything; it just makes you unhappy. Pulling for you, dlittkemann!
One thing which may or may not apply to others. I have my PET scans (the every 3 mo scans) at an HCA hospital. I have discovered that the radiologist posts the results on the hospital patient portal, sometimes in an obvious place and sometimes in a preliminary rough form in a less obvious place. Thus, I have been able for the past several scans to find the results on my own the day after the scan. My onc realizes this and will typically say, "I guess you've seen the results". Since so far, they've been stable, all has been well. If there is progression, I may freak on my own without interpretation from my onc........
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Joyner- I am happy for you that it is easier for you as time goes on. I guess I just think that the Ibrance must fail at some point. I am happy I have had a good run with Ibrance. And pray for more time on this treatment. I too look for at my results before I speak with my MO. I usually go to the Medical Records Dept at my hospital where I get my scans and sign a release for the records. They do not flow to the patient portal until the ordering doc releases them. Then when I see my MO she will say "I guess you have seen the results". She knows me. But I want to have my questions ready for her, not learning the results and having to think about it all on the fly.
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Thank you everyone for the kind words. Praying at least no change. I have to be here for my 5 year old for many years yet :-)
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Thanks so much (((hugs)))
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Also here rooting for you dlittkemann. I know scanxiety is challenging and I'm not sure it ever gets any easier.
I too am waiting to hear back on my latest scan. I had it on May 10th but my appointment with my MO is not until the 25th. Here in Canada, patient portals are new, at least in British Columbia. My health authority has launched a portal, results are supposed to be posted within 14 days but, lo and behold, mine are pending until May 26th. ??? I don't think anyone quite understands how our minds work and how the conspiracy theories can start building in the absence of information. The logical side of my brain knows that it means nothing... the irrational side of my brain is fearing the worst. Never gets easier...
Hope good news is in store for both of us!
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dlittkemann… how did you find your bone involvement?
Does anyone have a single bone lesion?
My CT and Bone scan came back with only one area on my 3rd rib (about where my mx scar is and the area that was radiated) of mild uptake and they want me now to do an MRI. I feel numb and can't believe this. I just finished chemo 3 months ago and had clear scans only 7 months ago, so I hope this is nothing to be concerned about, but I am having so much anxiety that I can't sleep or eat.
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Hi Berries
Hoping the uptake is just arthritis or something else less worrisome. They found mine on bone scan. Just a check up. Then said may be arthritis and then said mri to be sure. Unfortunately mine was not arthritis but praying yours is (((hugs))
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Also berries, one single mark or lesion has a much better prognosis overall. They treat w intent to cure And it has a name. There are threads on here discussing it. The spelling is ogliomestasis? Maybe I have that spelleding wrong
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I am less anxious now also- but, my TMs have been pretty accurate. The results don’t go to the portal. I get them next day at a visit. I will say that the worst was when the ibrance failed - I was so attached to that drug working longer that 20 months. Also as I have fewer obvious options It may get harder.
Dlinkeman- yes, many more years with your 5 year old
Berries- have you considered a little Ativan for your anxiety- it makes all the difference in the world. Tha kind of anxiety you have is quite unbearable.
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Berries - the MRI is essentially the tie-breaker here if the CT and bone scan are inconclusive/don't correlate. If its mets its mets, and it will be dealt with - really crappy luck but then they caught it very early with potential to sort that out. If its not mets then you get to go on with your life, but as Nkb says, you really may want to consider getting an anti-anxiety med regardless of the outcome.
Candy - Must be scan season - good luck in the can tomorrow and may your scans be ever in your favor!
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Sadie, HORRIBLE on having to wait so long for results! That's the worst part for me, so I was thrilled to do my Nancy Drew access to the early portal information before it was "officially" cleaned up and posted to the final patient portal. Good luck!! Please let us know asap.
Nkb, I so hated having to give up Ibrance. That was such an easy regimen for me....it almost made me think that I didn't really have MBC. That said, every day they seem to be making progress. If we can just hold on with a reasonable quality of life, they just might come up with a solution for us!
Candy...good luck with the scan. Let us know!
Hugs to all, especially you young ones just starting to tackle this. Once you get your head around this, it gets better. You can do it.
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I think the reason I am most scared about scan today is that I have had no pain. Zero. Until this week. Aches and tender lower back. So the pains worry me so much. Praying it’s not a bad thing.
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dlittkemann...I wish you the best possible outcome. We all know the fear you are feeling. But we are here for you.
berries, candy and sadie...wishing you all stable results.
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Thank you so much!!! Wishing everyone positive scan results. Appreciate all the nice words. My appt isn’t until 7:15 tonight.
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dlittkemann…will be sending you a prayer for positive results on your scan. x
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dittkemann, add my prayers to the others for good results. For me, it did get easier until this last time when they found progression. My onc usually sends me an email with the results before our appointment since she knows I don't wait well, but this last time the nurse set a time the next day for her to call me. I knew something was up! I am still waiting on what the next med will be, so for now I wait and try not to be too anxious. She is more concerned about the liver progression than the bone met progression, but I have both. Ibrance and I had a good run for four years, but for now I wait...
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Just got off the monthly phone call with the oncology dept (not the MO, another doctor in the practice so to speak), and after I explained what was going on with my lower back in the mornings and the ongoing problems with the left (non-cancer) side, she noted that my last CT reading recommended a follow-up spinal MRI for the area (which hadn't been mentioned to me previously). So next month I get two rides!
I'm assuming this is some sort of correlative exercise as they did two full-spine MRIs already last November before radiation to the right SI joint, but I suspect this will be pelvis/lower back specific. Finally. The ongoing confusion of the right and left side cancer vs non-cancer really doesn't help, along with my overall crappy lower back that was showing degeneration, stenosis, and facet/SI joint inflammation even before cancer.
Anyone else have a CT + MRI combo at some point? At least I can take a nap in the MRI if I have to do both on the same day.
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HI everyone!
My CT scan is next week. Anxious, count me in. Usually takes 2 weeks for results but my MO days they are going faster these days because so much elective imaging is on hold during the corona crisis.
I'm learning a lot about bones and wannt to chime in and say that I've had lesions pop up, then heal, for years. And am still "saving" radiation for when I have more pain (since I guess there is a limit to how much you can do). Anyhow, had no idea that bones have such an active metabolism, breaking down and renewing themselves all the time. (including your jaw by the way, so no skipping the dentist!)
had an IV drip of a med that is supposed to lower my calcium for at least 3-5 days at a time. Also some good old prednisone to perk me up and help me with appetite.
SondraF, never done a bone MRI but several "scints" (sp?) My MO is mumbling about a bone marrow biopsy (eek).
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arolsson, bone marrow biopsies are far scarier to think about than they are to have. I've had two, and they were not difficult procedures at all. They put you out, similar to having a colonoscopy, and you're just not aware of anything. Thinking about it is the worst.
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arolsson, I had one bone marrow biopsy many years ago while I was in the hospital. It wasn't pleasant but getting the results changed my treatment plan. I'm sure it's much better now. I had a bone biopsy last year and it was a breeze . I had Valium or something like that. My biggest complaint was the doctor who was young didn't share my sense of humor. Waiting is the worst. I have a PET/ CT June 10 . I too have testanxiety Even though I had an MRI 2 month for digestive problem. Hang in there. We have all been there. It's nerve racking. You can get through this. Sending prayers and hugs to you and everyone here. Joyner You were the first person who welcomed me here. Thinking of you and sending prayers. Celebrating 3 years with MB🥴. I thought I'd be gone in 3 months but treatments keep evolving.
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Maire, we old girls "ain't going anywhere" anytime soon!! Hugs and a happy Memorial Day to all-
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thanks JoynerL and Maire67! that makes me feel better. Myself about 2.5 years into MBC, a goal was to see my daughter graduate and though corona has robbed me of that joy, I am still here. But if the next treatmetn (if there is one) doesn't improve my liver, bones or quality of life--well we will cross that bridge when we come to it. happyweekend all!
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Hi Joyner,
Thanks for the good wishes. I'm thrilled to report that my scan shows stable. Phew!
As I said in an earlier post, it never really gets easy to wait for those scan results. For one thing, I had early progression which makes me a bit jumpy for sure. I'm also at a place where Faslodex is a bit “past it" in terms of its typical duration of response. So... looking over my shoulder a bit.
But today? All good. Hoping all those waiting have similar results
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How sweet it is!! Great scan results, it never gets old...
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Hi, has anyone ever had a bone skull met? If so, do they grow fast? Do they cause headaches? Any info. would be appreciated.
Thanks - Suzy
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Sadie.....HOORAY!!!!! Such great news! Enjoy another blissful period of "reprieve"!
Curious, so good to hear your voice!
And Suzy, I don't have any experience to share, but wow...you've been successfully fighting this for 23 year! Denny, we have another very long-time survivor in our midsts. Good luck with your question and your situation.
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Thanks Cure-ious (love the image - ha) and Joyner.
Suzy, I have mets on my c spine and skull base. They were discovered last year (one of the reasons I worried about Faslodex failing) but we don’t know how long I’ve had them as they don’t typically scan there. No headaches in my case but some occasional numbness on the right side of my face. Not bad or consistent enough to warrant radiation...yet.
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Sadie- Interesting. I have had occasional numbness to the left side of my face for about a year. We first thought TIA (mini stroke). But a second opinion neuro consult says not TIA due to happening multiple times and no other deficits-- speech, arm or leg involvement, or worsening, just the facial numbness. When I was diagnosed MBC in 2017 the PET showed osseous lesion at C2. Another PET in 2019 showed no uptake. But wondering if the facial numbness could be somehow due to the mets in the C spine. Have to file this info away.
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