recurrence after stage III TNBC?
Comments
-
Call first thing in the morning. The squeaky wheel gets results first.
0 -
Could not agree more KBeee!
0 -
Pesky - you must have an MRI. My tumor was not seen on ultrasound and the only reason there was follow up is because two nodes showed up on the mammogram. Dense breasts is my problem.
0 -
Gussy, I have reconstructed breasts, so no dense breast issues anymore, but I used to have very dense breasts.
I had an MRI with contrast on January 10. All the report on my patient portal says is that there was thin rim enhancement on the left side (where I feel a spot of pain) that is likely from the implant, and no suspicious areas on the right side (where at the time there was a small lump that my oncologist noted was between the rib and the implant). In short, they didn't see anything on the MRI. And I doubt my insurance will pay for another one, especially if the ultrasound and bone scan from Wednesday don't show anything deemed suspicious.
Almost a month after the breast MRI, on February 9, I saw my oncologist's NP because I felt the lump was getting bigger and I also had some new lumpiness in my underarm. She felt the lump and said it almost feels like it's coming from the rib. But she still wrote in her notes that it was likely post-surgical changes from my exchange surgery on November 29. She was not at all concerned about the underarm lumpiness.
0 -
Just got my results from my oncologist's NP. There was an area increased uptake on my right hip and the radiologist wasn't sure about it, so they are ordering an MRI. She's going to schedule it and let me know.
The area where I feel pain in my ribs and shoulder all looked fine. I have some spots in my legs and feet that look like arthritis. (Arthritis? I'm 44 and was always fit and healthy pre-cancer and now I have arthritic changes in my legs and feet? WTH, that's a huge bummer.) But if they can tell those are arthritic then I'm guessing the area on the right hip doesn't look like arthritis.
They said the ultrasound looked like postsurgical changes and we will follow up on that at my next oncology follow up in April.
They didn't seem too worried about the right hip, so I'm not sure if I should be.
0 -
I hope the MRI gets to the bottom of this. Can arthritis result from chemo?
Any kind of "itis" is inflammation. Would there be any point in taking some curcumin & fish oil and seeing if it brings down pain/inflammation? Curcumin is also very good against cancer... fantastic for inflammation. I think it's what got rid of my aches and pains.
0 -
It's funny that I have arthritis in my legs and feet, because I have zero aches and pains there but lots of pain in my left shoulder and ribs and yet nothing showed up there.
I'm curious as to what the right hip could be. I'm also glad they said the lump in the breast didn't look malignant so was due to postsurgical changes, but I still hate that it's even there.
0 -
I also get the feeling she was nervous to tell me about the bone scan. She started by asking how we were all doing after my mom's death. Then talked very positively about the ultrasound, almost as if she was setting the stage for the news about the bone scan. She didn't sound confident. She was also vague about what exactly the report said so I hope I get to read the actual report myself soon. They usually release all test results to the patient portal within a few days.
0 -
Hoping hte MRI of the hip is benign.
0 -
Thanks KBee
0 -
if it’s not arthritis and I have never had a fracture or a break and I don’t have a bone infection, does anyone have any other ideas of what it could be?
Everything I read says a bone scan hotspot could be arthritis, infection, a fracture or break, cancer, or osteonecrosis caused by decreased blood flow to the area. Those are the only things I have seen listed as possible bone scan findings.
0 -
Lots of scans pick up things that aren't cancer. I had three PET scans that all picked up something on my left hip (femoral neck). My MO sent me to get an MRI and CT scan. She said if they could find it on the MRI, she'd biopsy it. But, neither the MRI nor the CT scan found anything on my left hip. She just treated it as a false positive.
0 -
Ugh. I hate when one test to see something and then another test doesn’t. Or vice versus. It doesn’t do much to ease our minds.
0 -
No kidding. I wish they were more definitive!
0 -
does anyone have experience with having an area of increased uptake on a bone scan that was then not seen on an MRI?
Like could there have been a reason that the radiotracer collected in my hip even though there was no increased metabolic activity in that bone?
Or is there any reason there could be increased metabolic activity in a bone one day and then not onanother day?
0 -
I'm so frustrated. They scheduled my MRI for Monday, March 4. That seems so far away. Does that mean they're really not concerned about it being metastasis, or just that even if it is metastasis, an extra week isn't going to make a difference?
0 -
When I go to schedule an MRI they are usually booked out by at least 30 days. The only time I get in sooner is if the dr is pushing it. So 2 weeks isn’t too bad even though I know the scanxiety is high. I’d say try not to read too much into it. Sounds like they just got you the soonest they could without it being an emergency
0 -
It means neither. Never try to read into things. It will drive you batty with no good that can come of it. I know waiting is excruciating. Try to stay distracted and ask for anti anxiety meds if you need them to get you through a few weeks.
0 -
If you are not too far from the hospital or imaging center, you can try to get on the cancellation list. It might help to call the MRI center and let them know you can come in on the drop of a hat (if you can). Sometimes a sympathetic person in scheduling can squeeze you in. I know they leave some gaps for emergencies (like accidents). I am a squeaky wheel type. I would call, be extremely nice, and say you are very concerned and if there is any earlier window you would love to get in faster.
0 -
Thanks for the replies. The problem is I'm trying to schedule some freelance work, while in the process of job hunting, looking for a place to live, trying to handle issues from my mother's sudden death 2 weeks ago and a whole ton of other issues (see my thread about whether stress can play a role in recurrence, lol).
So I can't really go in at the drop of a hat, unfortunately, as my life is falling apart around me. I need a set time so I can plan the rest of my schedule around it. They scheduled my MRI for the new breast lump the next day, so I somehow just assumed that something like a positive bone scan would warrant a much faster scheduling.
Does anyone else feel that when you were initially diagnosed, they wanted to schedule everything asap and had a sense of urgency, but as time went on the urgency completely faded?
I'm guessing my oncologist's NP put the order in and didn't write "urgent" because this is not an initial diagnosis but a possible metastasis, so the scheduler just slotted me in whenever she had an available spot that was most convenient for the people doing the MRI.
Do they just feel that if it's mets, it's probably been there a while already and so it doesn't matter so much if there's a few weeks delay in starting to treat it?
0 -
Pesky sorry to hear you have so much shit being thrown your way. I hope you get some light and good news soon! What I’ve seen done with me is depending on the location of the spot. I have brain mets so anything new is ordered stat. For the lungs or anywhere else it’s normal speed unless there is something going on that requires immediate attention. I do feel like with mets the discovery of new mets isn’t treated asa big deal like with initial diagnosis.
0 -
Thanks, Parrynd1! I hope so too!
With me, this isn’t the discovery of new mets, but the discovery of possibly having developed mets after finishing treatment. So it’s the initial discovery of possible mets and you’d think there would be more urgency.
I don’t know much about how bone mets progress though so maybe it’s not known to have rapid progression and since they don’t even know if it’s mets, they’re not willing to screw up the MRI folks’ schedule by trying to get me in fast.
I did also have a question about arthritis, if anyone happens to know. I had a bone scan on 9/21/18 that showed no arthritis at all. Now just over 4 months later they’re saying I had several areas that showed arthritis. Does it really develop that fast? I don’t evenhave any pain at all where I supposedly have arthritis (both legs, left foot).
0 -
I'm dismayed to see they are literally only MRI-ing my right hip. If there is a questionable spot on the bone scan, wouldn't they want to view other areas on MRI to see if there was anything too small to be caught by the bone scan?
0 -
With me they only look t the spots they see unless I have symptoms somewhere else. Even then I have to push a bit and complain of the pain/twitching/whatever it is for 2 weeks. My MO tells me anything lasting over 2 weeks to let her know about.
0 -
Interesting. I have had pain in my lower back and tailbone for well over a month. But since nothing was seen on bone scan, they're not checking it on the MRI. Nor are they double checking the spots that are noted as arthritis. They're are just zeroing in on this one particular spot on my right hip.
0 -
I would think that the Hip MRI would include that whole pelvic area, but maybe I am wrong...? I thought the "divisions" between various MRI's are perpendicular to your spine. Meaning, a hip MRI would include both your hips, and whatever was in between them. Am I wrong about that?
Seems like it would be worth getting that checked too-- so if it isn't part of the hip MRI already, start griping NOW so it gets included!!
0 -
Oh, I was actually hoping that was the case, that the MRI would include other areas even though they are only investigating one particular spot on the right hip.
0 -
Call the imaging center and ask, to make sure. If not, I'd push for it.
0 -
The imaging center can only scan what's ordered, but when they examine the images, they will typically note any other areas of concern that happen to be seen.
If spots on your tailbone are too small to be seen on the bone scan, they typically are too small to cause symptoms. Usually bone metastases only cause symptoms when they get pretty large. They typically are not going to examine arthritis, because the spot shows up on the surface of the bone, not the inside of the bone, and most people with bone scans have some degree of arthritis show up.
0 -
Thanks, KBee. From what I'm reading, an MRI of the hip will include the entirety of the pelvis so that they can see if the problem seen on the hip is being caused by any other nearby structures.
0
