Scanxiety and accuracy of scans
Hi all,
I am right now having tremendous scanxiety about two scans I had on Tuesday. One was a nuclear bone scan, the other was a CT scan. They were supposed to reveal progress (or progression) after 3 months of Fulvestrant and 300 mg of daily Verzenio.
- I never had a bone scan before. The stupid technician came in after it was done asking if I had dental work done. I said no, and asked why. She said they saw a couple of "spots" in mandible which usually relate to dental work. So now I'm terrified that I have progression since the PET scan in November didn't show that. How accurate are bone scans?
- Do you think that it's too early to tell anything, really, given I've been in tx for 3 months and this is somewhat like comparing apples to oranges? (PET vs. CT/Bone)
- I couldn't get another PET paid for by BCBS since they said there wasn't any bone involvement shown from the PET in Nov. That is why we had to do these scans instead of a PET.
- If progression, would tx be changed to something more severe? I am tolerating tx now just fine and am scared if tx had to be changed quality of life would really change.
Mostly I'm so scared from what the tech said (she should have kept her mouth shut since she's not a radiologist and should have just let oncologist share any info, good or bad); I am in the throes of a PSTD attack till Tuesday when I go to Mayo for monthly tx and get the scan results from MO. I emailed Mayo and complained about the tech's comment.
Claire in AZ
PS If I'm progressing I can say goodbye to adopting a dog. See my previous discussion thread. :(
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Hi Claireinaz,
I am so sorry for what you are experiencing. I too have much scaniety and have a scan on Monday. I have the Dr appointment for results on Thursday. The tech you saw was totally unprofessional! I don’t know about bone scan validity. I hope when you see your dr on Tuesday you get answers and positive results. In the meantime, I hope that you can breathe. One step, one moment at a time. Have you tried the Calm ap? The daily calm meditation works for me (usually). I know that it is soooo much to deal with. I am sending you lots of positive energy and hugs. I will keep my fingers crossed for that future pup!
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Hi Claire,
I can only address your first question. Given your PTSD the tech should not have said anything to you during the imaging. However, when I had a bone scan I had to fill in a pre-procedure questionnaire which asked about dental work, osteomyelitis, osteoporosis, arthritis and any bone related abnormality which had shown up on other imaging of which I was aware (costochondral calcification, clavicular bone island and femoral myositis ossificans in my case.) This is because all of these areas light up on a bone scan just like mets do and the information helps the radiologist interpret the scan.
My breast cancer was actually diagnosed by an oral surgeon two and a half years after a callback and two subsequent clear mammograms. After a molar extraction I had terrible jaw pain and swelling with no abscess which didn't respond to antibiotics. The area was biopsied and it turned out to be gram negative osteomyelitis for which I needed a month of IV antibiotics. I thought negative for malignancy was good news but the oral surgeon told me that these infections only occur in those with cancer or positive for HIV. My HIV test was negative and a diagnostic mammogram finally showed suspicious calcifications (the 3.2 cm tumor was hidden by radial scars.) Mets in the mandible are rare and a treatable bone infection is much more likely. If you don't have symptoms hopefully it is nothing significant.
As far as a dog goes, having a plan for a good back-up home makes it possible. After my husband smashed his elbow falling on ice his horse went to the farrier's sister and had a wonderful rest of its life being ridden by teenagers. If anything happens to my daughter we (or my son) get her cat and one of her friends will take her dog. Pets are so emotionally helpful it is worth making potential emergency arrangements to be able to adopt them.
Hopefully someone else will answer your other questions and no progression will be seen.
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The rad tech should not have mentioned anything as she/he is not a radiologist. Your other questions are best answered by your mo as no one can give you answers to a situation which is not confirmed and may never occur! I know this has been very difficult for you but try to hang on until your appointment and remember that it is the radiologist’s report that counts, not a tech’s comment.
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Last week I had a CT scan of my chest, etc. because I have something on my eye. Radiologist report says I have “highly suspicious nodules in my lungs”. My regular oncologist doesn’t agree 100% . Yesterday I went to see an ocular oncologist. I was diagnosed with metastatic breast cancer in my eye! I’m shocked. Has anyone heard of that?
I have a PET scan next week. I feel like I’m starting to go through scaniety.
I'm at the beginning of my journey starting to tell friends now that my kids know. I’ll be looking forward to reading about your journeys too.0 -
Hi @wndctgl,
While rare, it is possible for breast cancer to metastasize to the eye. External beam radiotherapy is one of the ways it is treated, for others there can be some surgery involved. We've had a few members mention having been diagnosed with mets to the eye before. Has your ocular oncologist or regular MO said anything about how they want to proceed?
This website discusses how to spot an eye metastasis and treatment for it:
Scanxiety is always so difficult leading up to the scans, and directly after as you await the results. Please let us know once you get additional information. We'll be holding you in our thoughts. ❤️
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For wndctgl, you may get more responses in a separate post since your eye mets are a bit unusual. My current scanxiety issue is from an MRI done on Friday, right before the weekend. My oncologist almost always phones me to discuss results and suggest our next step however this time that didn’t happen. It is not an “all clear” situation…
In the past when she was on vacation, the department head was substituting but since I had an appointment already set up right after her return no pertinent comments were offered by that person. I hope my doctor wasn’t on a job interview (having finished her fellowship just a few years ago). An MD with a PhD she received a $100K grant for research…
Claireinaz, with Blue Cross denying another PET, you can appeal their decision. I went up against them 3 times and was successful in getting imaging done although it was delayed. Remember, one of the ways insurance companies profit is by refusing coverage. I used the radiologist’s report to support my claim regarding follow up & won. Don’t give up!
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vlnrph-I'm thinking of appealing, but if this bone scan shows anything then BCBS will have to pay for one regardless. It is so unnerving to have to wait for a call back, and esp. when it happened quickly every time before; I hope it is because they just didn't do it this time for some unknown reason (family emergency, etc.) and nothing to do with prognosis.
wndctgl, I have refrained from telling everyone and I found out in Nov. I have only told "need to know): my only child, immediate fam (sibs) and my boss and one colleague who is a friend, and I've told a few of my girlfriends that I see every week to hike with. I don't want to have to talk about c all the time, and with more knowing, more will just see me and ask about it, forgetting I have more than just cancer in my life. Not telling everyone lets me have a normal world too, without cancer.
casey714, I use Calm all the time :) I meditate daily using that app and another, more for IBS and it works; Calm sleep stories are wonderful); I have a good therapist, I'm on Lexapro, have Xanax on hand, and get daily strenuous exercise. I have had GAD since I was a teen and was only recently dx with PTSD (3 years ago). There isn't much to relieve the fear that happens after each scan, and this one is particularly important to me because I feel it will show if I'm responding to the meds I'm taking now. I'll be crushed if there is progression in spite of that. To me it means it's aggressive in spite of the belief that ILC is slower growing and that the pathology showed it's lower grade 2…and the PET in Dec didn't show any mandible involvement; that perhaps this mandible thing is due to the Prolia I took for two years; all these stories we tell ourselves to keep going in the grip of fear.
If there is growth, how scared should I be? I know, stupid question.
If there is growth I'll have to put dog adoption on hold because I'll be driving back and forth to Phoenix (a 3 hour 1 way trip from where I live). Right now it's snowing here, so time to go out and shovel about 5 inches of snow from the driveway! I welcome the task, actually.
I'm just sad, scared, hopeless. My MO isn't very warm and friendly, so I dread seeing her anyway on Tues regardless.
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Hi wndctgl
My mets were diagnosed from the lesion in the eye, so this is not unusual, however the lesion was gone once the systemic treatment was started, so the probability is that no separate treatment to the eye may be needed once your treatment starts
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what is a systemic treatment? Ocular oncologist said if I had chemo for other metastasis- which I don’t know PET scan is next week. he felt the eye mass would desintegrate. Is that what you mean?
I have been reading and reading. I think the most profound piece I read was that Mets don’t go away like my initial BC. It means I’ll be on something the rest of my life. That the quality of my life will change. I’m not prepared for this. . I am thankful there are all of you out there to help me on my journey.0 -
wndgrl, I can hear the anxiety and fear in your post. Hang in there. I got lots of help by posting at the "just dx with recurrence" in the Living with Metastatic Disease. I think it's true that we will be on some kind of tx for the rest of our lives.
I consider it kind of like getting tx for diabetes—it just becomes part of how we live. You're just beginning on the journey; I think once they biopsy or figure out what the nature of the met is, then they get the tx in place and you at least know how to save yourself. But mets have to be regularly monitored to keep them stable or shrink them. I know how you feel; I'm still in shock and I have known I have extensive mets since Nov. Because I had no real symptoms other than some bladder urgency and I felt so wonderful otherwise, and still do mostly (other than extreme anxiety that comes and goes) I am having a hard time believing this is happening to me.
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