I went to my regular appt yesterday and i knew i will get my script for my scans coming up in May . As I'm sitting in waiting room i was handed a script for a Bone scan along with my CT . I was very surprised and scared at the same time . She said it is routine to see how my bones are healing and of course to see if anything else is going on . My last Bone scan Jan'20 reveled all my Mets and that's how all this got started . I really think i have PTSD from that day and now i can't stop thinking and coming up with all these scenarios of why they want it .
I see on here that lots of you guys get Bone scans but is it routine or ones a year ?
I'm sorry if I'm being a Baby about it but my mind won't shot off and its driving me crazy . I have Scan anxiety anyways so this time will be even worse but i know i have to do it and i should just stop thinking about but i can't .
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Anitafazz
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I have extensive bone mets and get both a bone scan and a CT when I get scans. The bone scan is specifically for the bone mets. The CT is for mets in the visceral tissues e.g lungs, liver. A single PET/CT scan covers both but my insurance won’t approve it unless it’s needed after the bone scan/CT!
That makes sense . I got PET scan's for the first year and last time my insurance wouldn't pay for it and i just got CT scan. I guess that will be my new normal even thou i would rather just do the PET . It is amazing the tricks your brain can play with your thought process over something so minor . Like i said the Bone Scan set all this in motion and im so scared i will get bad news again .
Hello, I have MBC on my neck since July 2018 I did pet scan once and after that they are doing CT scan and MIR , thankfully I am stable my last scan was October of 2020 however at my last visit this month he told me to get Both CT and bone scan! I don’t know why? I have never done bone scan and I heard that it is a lengthy procedure so i don’t know what to do? Just get it or forget about it.
Zebra 2018 It is a pretty long process . You get injected with dye and you have to wait for like 2 hours then the scan is 30 min . I would get it because that scan saved my life . Im nervous about how i will feel laying there knowing how my life changes after the last one but i will put my big girl panties on and do what i got to do . I feel good so im hopeful that i will get good news and move forward . I think that combo will be happening more often . I hope we both can celebrate soon and enjoy the summer .
Thank you for your kind words . I'm getting better with each scan but this time I'm just a little overwhelmed because i wasn't prepared for it and i will have to take a whole day off work but that has its perks . I am going camping the weekend before my scan's so that will keep me busy . No matter how hard i try to be positive that day of diagnosis will be forever be imbedded in my brain . Sometimes it scares me how normal my life is and then you walk into that office and I'm a cancer patient again . I'm sure with time ill get better and so far i have no reason to complain because i have been blessed with clean scans .
Yes that's what I hate, going to hospital and being a patient. When I'm getting on with my life on the meds I can sort of forget about it, well most of the time! Xx
It’s funny but I got a call yesterday to schedule a bone scan for next Thursday. At my last visit in February, My Onc suggested adding Ibrance to my Arimidex or Faslodex alone as my tumor markers have steadily risen over the last year from 40 to 121. I had an MRI of the brain, head and neck and a ct scan in December that didn’t show progression but then the tms can pick up the growing cancer, depending on the person, before it shows. I asked if my insurance would be likely to approve a bone scan and he thought that was a good idea. Without this site and the way that I see the ladies on it negotiate their way through every hurdle that’s put in their way, I would never have suggested anything but just gone along with the program. My Onc did ask if I knew it was incurable and I was only able to nod. I wonder if I should tell him at my May appointment how I obsess about MBC. It’s hard at times to take a break about worrying what’s coming next. Sandra is right as usual and whatever is going on is what we’ll deal with. We went to our Bark and Garden today and bought lettuce, kale. Tomatoes and peppers ready to plant in the container beds. Now the sun is shining it’s easier to take pleasure in the day. I’m sure your camping trip will do you the world of good. I can’t wait to get the cover of our trailer and get away! Hope you had fun. Chris
Yes I remember being told it was incurable, but now I think ' hey, there are people who live with heart disease, diabetes and all sorts of conditions that are incurable. Mines just another one, if I can forget the C word. And medical science is constantly making new discoveries' . At least we've been given notice to make the most of our lives. I'm just frustrated that the pandemic has curtailed me! X
I agree totally and this helps me immensely. Three people I know have died since I became metastatic 3 years ago and they had diabetes and heart disease. People we know will die ahead of us; we just happen to know what we will die of.
Well I'll be pushing the boundaries as soon as I can. I'd rather go doing something adventurous than in a hospice, but who knows. It's not our choice, but how we live our life is. Keep positive! Carolynxx
Beryl, that is how I have been thinking about MBC, too, and my doctors encourage me to think this way. They all say because of new treatments that it is a chronic disease, and we can still have a quality and quantity of life. My daughter who is only 27 has been dealing with Crohn's Disease for 16 years and has Remicaid infusions very 6 weeks. There is no cure for Crohn's Disease. If she can stay strong enough to do this, so can I. I try to make each day count and not worry about a future I can't control.
Hello, I totally understand the constant thinking of cancer. I was diagnosed with MBC in June 2920 and was literally thinking g about it all day long for months. I finally went to a counselor who helped me so much. She told me to set aside a worry time each day. However much time I needed. She said at this time scream, cry, hit the pillow, etc. and then when I’m done go about my day. If a worry thought comes my way she said tell your mind not now and deal with it during worry time. This has really really helped me.
I was diagnosed last year and I've had three to check progress. I have bone and CT scans. At the beginning I had a liver scan but they didn't seem to think there was an issue there so I've had no more of those yet. So I just see it as reassurance that everything's being checked. Take care, Carolyn x
I get the bone scan every time I get a CT scan, it takes up most of my day to do both. I've been lucky enough that I can have the injections back-to-back, and don't need to go around with a catheter or get stuck twice in the same day. I then have lunch (CT scans require fasting) and hang around the hospital until my actual bone scan. I've always felt positive about them, they are reassurance that my cancer is under control. And if it's not, I want to know so the doctor can change my meds. It took an attitude adjustment, but I'm with Beryl in thinking of cancer as a "chronic" illness, rather than a "terminal" one. After all, Life is a "terminal disease!"
I have. CT scan every 3 months and a bone scan every 6 months. It is normal protocol at my cancer center.I understand your scan anxiety. I experience it every scan!
First of all, I will pray that you get good news from your bone scan and CT scan. It is scary to go for those tests and you are not being a baby. I was terrified the first time I had these scans, plus an MRI and a bone biopsy. I am a hard stick, so it always took 2 tries to get the IV in and the tests were all done on separate days, so that meant several trips to the hospital. My last scan was just a PET scan, which was much easier, but still scary.
I hope you are able to find something you enjoy doing before the scans so you can focus on something positive. I know from experience that it is hard to shut your mind off to scary thoughts, but hope you will find a way to do that. In the meantime, sending you some hugs, prayers and positive vibes.
Like you I am a hard stick....I just wanted to tell this story to help people realize how wonderful ports can be....I had weekly chemo my first time around 25 years ago, and they didn’t give me a port until one day it took THIRTEEN TRIES to get the line in. I actually felt worse for the nurses than for me....they were so concerned and frustrated...they are real heroes. I still am a challenge (and it’s worse because they can only use my poor beleaguered (sp?) right arm) but recently haven’t had to endure more than 4 sticks before they are successful.
Hi Anitafazz! At least for now... I have quarterly scans: CT and bone. Earlier on (diagnosed de novo in July 2020), they did PET scans. I preferred those because it seemed to me to be more exact about what is cancer and what is not (i.e., healing instead)... since it lights up. I don't have a lot of faith in my current provider (and will switch to Johns Hopkins as soon as I can, insurance-wise), and my CT and bone scan reports seem awfully vague. But, in my last two quarterly CT/bone scans (first week in January and first week in April)... they reportedly can/could determine that there is "no evidence of progression." My second/current oncologist said, when I asked about why we are not doing PETs anymore, that the CT/bone scans are less expensive than PETs and offer the same information for surveillance purposes, and also expose us to less radiation.
Biggest downfall of bone scans is the wait. After your tracer injection, you don't have the actual scan for 3-4 hours afterward. As I have some transportation issues, this means I have to sit around at the facility rather than being able to go home or run errands, etc. in between. And, for some reason my healthcare provider can't seem to schedule my CT for the same day and the wait the period in-between tracer injection/bone scan. To my understanding, there is no medical reason for this. And, again, I will be leaving Kaiser Permanente as soon as I can... for a host of reasons.
So sorry you are feeling this way. A lot of us have scan anxieties. Every three months I get a chest, abdomen and pelvis CT and a whole body bone scan. I only have Mets in my left lung so my Onc screens everything to make sure nothing has changed/progressed. I would be more concerned if they weren’t doing a bone scan. How would they track your progress? Take a deep breath and be thankful that they want to see what’s going on. Personally I’m happy to get any diagnostic test they want to give me. Not knowing something Is amiss is worse than having scans to deal with any issues and celebrate when there aren’t any! Wishing you peace as you continue on this journey.
Thanks ladies for all the kind words . I haven't been able to read all your messages till today . My scans are Tue morning so pray for me . I'm ok and trying not to think about it to much this weekend . Glad we are going camping and the weather is finally cooperating . Will keep you guys updated with my results .
I really don't know what i would do without you guys since a lot of people just don't understand how i feel .
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