If you are not Stage IV but have questions, you may post here
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Yes, they've only done DEXA scans so far. I have an appointment with my GP today and im going to ask her to order a nuclear bone scan. This will only be the second time I've seen her because I recently changed drs because my old one didn't seem to be interested in finding out what's going on. My new general practitioner is a lady, who's had a similar situation as mine and actually understands my concerns and is willing to order tests needed to get a specific dx. She just has to do tests in the correct order because of my insurance, but she is very concerned. I will update you on what I find out at my appointment today. My oncologist was the one who ordered the MRI on my breast yesterday but I asked for results to be sent to my new GP today so she can go ahead and give me results because my next appointment with my onco isn't until March. Thank you ladies so very much for your concern, replies, and advice. I truly appreciate it! I'll talk with you later today to let you know what I find out. Prayers much appreciated for what I'm facing
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Ahhhh! That explains some of the confusion! Good catch, Jen (the dexa vs. nuclear bone scan)! And thanks for clarifying further, TNMTNGAL. Your situation makes a lot more sense now. I'll be keeping fingers crossed that you get some answers and that none of them involve mets.
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@dlb823 Thank you! I just got home from my checkup with my new GP. I absolutely love her! She asked my concerns, which I told her, and she never questioned anything. She asked me what I wanted her to do. I told her I'd be more at ease if I had either a nuclear bone scan or a PET. She's ordering one. I'm not sure which yet. The lady at scheduling already called me on my way home to ask if I was still going to have the same insurance after January 1st so she can get the request going. I'll keep you updated as I find out more information. Thank you so much for your replies and concern! I pray each of you are well
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Hi friends! I need some answers please. I have a nuclear total body bone scan tomorrow. I get the injection in the morning at 8:00 and I go back at 11:00 for the scan. My question...what is the prep for this? Eat, drink, take meds as usual or what? The receptionist told me not to have anything after midnight including gum or brushing my teeth. But I looked up the prep for the procedure and it says do everything normal that I'd do any other morning so I'm very confused. Thank you in advance!!
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Happy new year!
I wonder what kind of chance it is that lesions in bone scan and MRI turn out not to be a met after other test (such as bone biopsy). Or anyone whose PET scan is negative but later turns out to have met after biopsy.
I had these three tests done due to hip pain. Bone scan shows abnormal uptake, MRI shows a lesion, but PET is completely negative. Not sure if PET is falsely negative or the MRI lesion is really not a met
Thank you.
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TNMTNGAL,I don remember having to fast for bone scan, I actually went to get lunch after injection before going back for the scan. For med, I think there are some requirements, I don't remember exactly, seems that you should not take supplements like Vitamin, calcium etc. the night before or the morning of.
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TNM - I'm assuming this is a nuclear bone scan? I was told nothing after midnight. Easier to be safe than sorry.
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TNMTNGAL, I don't believe there's any fasting required for a nuclear bone scan. I've actually been advised to go and get lunch between the injection and the bone scan.
If you are possibly having a CT or an MRI in between the nuclear injection and bone scan -- something I've often done -- they usually want your stomach empty for those scans. But then you can eat in that time frame after a CT and before the bone scan.
Crystal, what a frustrating situation! I would probably ask to have all 3 scans reread elsewhere for a second opinion on what's going on. Have they done blood work -- tumor markers, liver functions -- to see if any of those are elevated?
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Prep for my quarterly bone scans and Pelvic/chest CTs is always the same - no restrictions for the bone scan but I must fast for several hours before the CT. I have the nuclear injection at 7 am, start drinking the lovely barium contrast at 7:30 (don't let them fool you - the mocha tastes nothing like coffee 😊), CT at 8:30, then bone scan at 10. It's a great way to stack the appointments.
The first couple of times I grabbed coffee and breakfast in between the two procedures, only to learn my bowelsaren't particularly fond of the barium. Now I just sip a cup of coffee until the scan, then eat later when I'm home again.
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So...I just got out of the nuclear bone scan. I snuck a peek at the one of my hip/lumbar area. Is it normal for the top of your iliac crest and spine to be whiter than the rest of the bones on the scan? I appreciate any and all answers
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Glad the bone scan is done, TNMTNGAL! From my experience, it's impossible to judge from a quick peek or from a technician's attitude, which is another common thing -- the tech suddenly goes from chatty to all business-like, so we fear they've seen something ominous. I've seen a lot of white and been absolutely certain it was bad news -- made myself literally sick worrying about it -- only to find out everything was stable or improved. The area you're asking about is very bony, so I think would look quite densely white. However, it really is impossible to tell anything from quick peeks or descriptions of quick peeks.
Fingers crossed and totally hoping for only good news!
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Anyone here ever have high liver enzymes from tamoxifen. I asked in that thread also, just worry about liver mets since it has steadily risen to twice normal over the past year and if gets any higher, MO will order ultrasound of live
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TNMTNGAL, I'm not a radiologist, and you're definitely not crazy, although I can see how this going in circles with scans could make you crazy!
If I were you, I'd take a deep breath and just be very, very thankful the bone scan did not show mets. Give things a few days to settle down, and see what your caring primary doc suggests doing next. Clearly, everyone seems to agree something is amiss in your hip/back. The challenge will be finding an expert radiologist and/or ortho doc to put all the scan information together to sort out what's really going on. But for now, I am very thankful -- and I know you are -- to hear the word "normal."
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@dlb823 thank you so much for your response and support! Yes, now you see why I have such anxiety over the pain in my hip and back. My old dr sent me for MRI of my hip and back and the report said moderate degenerative changes in my back. The hip one said it was indicative of a torn psoas muscle so he referred me to my ortho. My ortho told me I didn't have a torn psoas muscle and he referred me to my neuro surgeon who did the discs in my neck and fusion a few years ago. He said it's not my back. Neuro surgeon wanted me to go to my ortho for further evaluation. So I just got run around in circles. No one can tell me exactly what is going on with either my back or hip. So I just don't know what to do. I'm so frustrated.
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Dear All,
How do you determine cm size to list on profile? My BS, after MRI Gave me 3 numbers and they are huge compared to anyone's anywhere in this sight I can find. I am a wreck and didn't think to ask him today why he gave me 3 numbers. He said size of baseball. Please, if any of you can private message me, i would appreciate it.
Waiting for today's biopsy to see if invasive, which he highlysuspects after talking to RO. Mastectomy (how do u abbreviate? ) for sure after chemo,
Terrified.
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Hi CENOK2017 - Mine was over 6 cm. Aggressive, huge and Grade 3. I'm not that far out from diagnosis, but am doing well.
There are women on here - who had larger...they don't post very often - because they are doing well. :-)
The beginning of this - is the most frightening part!!!
((((Hugs)))
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@dlb823, thank you so much for your suggestions. I sentthe three scans this morning for a second opinion. For blood test, my Onc does not really believe in tumor marker, plus I was DCIS microinvasion, he never tested my tumor marker. I will see what the second opinion is and decide the next step. I heard that PET sometimes can be false negative, so may need to prepare for bone biopsy.
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@dlb823They're putting me on Arimidex/Anestrazole?? Side effects you may have had on this please? I'm debating actually taking it. Thank you in advance
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TNMTNGAL, with a grade 3 bc, I wouldn’t refuse Anastrazole. I did — went the natural route — and ended up with a metastatic recurrence 6 years after my original dx. So from personal experience, I would say to at least try the Anastrazole. You can always stop it if you have more severe SEs than most, but usually the worst SEs are achy joints and vaginal dryness from the lack of estrogen — both things that can be remedied or greatly improved with complementary things.
Of course taking any med is a decision we each have to make for ourselves, but I can say without doubt I wish I hadn’t been so against doing an A/I because I might not be in the situation I’m In nowif I’d listened to my conventional docs who all tried to persuade me.
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Hi. I was having hip pain this summer, and my oncologist ordered a bone scan in late Sept. The hip was clear, but "something" lit up in the skull bones behind my sinuses, deep inside my head. A CT scan confirmed that there was an area of concern, so I was sent to an ENT doctor to see about the possibility of a biopsy. He said, in effect, no way, literally the most inaccessible part of the body. So my oncologist waited three months and did another CT scan in late Dec. Area of concern was still there, but showed no growth at all. My oncologist says he doesn't know if it is cancer or not. He says it looks like cancer, but it is not acting like cancer. The plan is another three month wait and another CT scan in April. I am grateful "it" is not growing, but the waiting is hard, and I feel that this pattern might go on indefinitely. Is it typical for it to take a long time to get a stage IV diagnosis (not that I want one), or is my case just odd?
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Fallprincess, I'm wondering if a brain MRI would give any more indepth picture of that area of concern? Not sure why, but brain MRIs do seem to be the imaging of choice to rule out brain mets. A wait and see approach for an area that's inaccessible is really about all you can do, short of chemo to see if it makes a difference. But why risk chemo SEs if whatever is there is benign?
As far as taking a long time to get a diagnosis, I would say your situation is a bit different. One thing you might consider is getting an opinion from a neurosurgeon -- not just an ENT. And I don't know where you're being treated, but if it's not at a major cancer center, having a radiologist at one of those who specializes in reading brain scans might yield a different opinion, just because they deal with far more brain imaging than a more local facility. So I would consider a second opinion on your imaging from a facility like those listed here (assuming you're not already being seen at one) while you wait and see. https://www.cancer.gov/research/nci-role/cancer-ce...
Hope this helps. Keep us posted! Hugs, Deanna
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Thank you so much, Deanna. I so appreciate your perspective! I am being treated locally, but there is a major cancer center nearby.
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Hi All: I started a clinical trial for Stage 2 er+hr-, it is Afintor&Leterozle. I was just wondering what kind of side effects to expect and when will they start. It seems to have raised my sugar way high (I'm a diabetic) so I don't know if I can even stay on the trial. I was trying to find anyone stage 2 who were on the same meds but no luck.
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Cindysmom, I believe that’s a relatively new combo/trial. Is the one you’re doing Phase 3? Assuming it is, have you seen the results from Phase 2? SEs should be outlined within those results, or you can look up each med individually to see potential SEs for each one. Letrozole is a common aromotese inhibitor. For most women, joint pain and vaginal dryness are fairly common. Afinitor SEs will probably be dose related, and I’m just going to make a guess that the Afinitor dose for this trial combo may be lower than the dose used in other approved combos, so very hard to predict.
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Thanks for your response, yes this a phase 3 trial. I've been on Letrozole since May 2017 and don't have too many side effects some worsening stiffness in hands and feet. I did read the side effects for Afinitor (started Dec2017) but the only thing I seem to have is raised gulcose numbers. Was wondering if any of the side effects build up over time ie (fatigue and mouth sores are the main se) or maybe I got the placebo instead. In which case I better figure out what else could be effecting sugar levels!
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Cindysmom, maybe rather than asking about the trial per se, you could start a new topic asking about experience with Afinitor, and maybe specifically ask about the blood sugar concern. Just an idea, as I don’t think enough women are on that specific trial to get responses
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Cindysmom ~ Just looked this up for you, and hyperglycemia is definitely a listed SE. https://www.rxlist.com/afinitor-drug.htm#side_effects
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dlb823- I appreciate your suggestions and maybe different wording would get more responses. I'll definitely read the website you provided. Once again,Thank You!
Claudia0
