If you are not Stage IV but have questions, you may post here

I'm tnbc

my primary symptom was cough that didn't go away; but it was winter and everyone had a lingering cough...after 8 weeks tho my gp sent me for a chest xray and the rest is history. I had a very large lung met.

Tenderness below right ribs. I have an above the counter bowl sink and used to lean on it to get close to the mirror to apply make up as I'm really near sighted. I remember having to adjust so as not to press the edge of the sink under my right ribs due to discomfort. Those were my liver mets.

Fatigue - wouldn't have seen it as a symptom on its own (I had good reason to be tired as I was in a very intensive degree program) but with the other things it made me concerned

Unexplained weight loss - mine was minor. Didn't gain weight over Xmas, was just slowly losing

Hi Bookworm,

I can't say with any certainty why he likes CT. I think, in part, it's a function of access as PET scans were harder to get here until recently. I also feel that CT is a good tool when cancer may be a bit more indolent. Mine seems to be a slow moving beast that doesn't show up well in bone scans and, I suspect, might not show up on PET either. Despite this, he now uses a combination of bone scans and CT to track my disease, bringing out MRI if he is worried about something brewing that he wants a closer look of.

Ultimately, while I agree that we need to be our own advocates I also feel strongly that we need to have some faith in our physicians. Treating this disease is as much art as science and oncologists get a feel for their preferred modality. They see things when others do not and also can avoid blowing some blip out of proportion. Most importantly, at least in Canada, there is no set formula for scanning or follow up unless there is cause for concern.

I agree Moth, plus they are more expensive and require radioactive material that has a very short half life. Where I live in regional Australia they can only schedule so many per day as the material has to be transported and can’t be stored for any great length of time.

MikaMika,

I think the timing of scans is best discussed between you and your MO. Yes, lobular is sneaky, and that's a valid point (I also have lobular). However, it's also generally more slow growing, and perhaps that's why your MO is hesitant to scan. I have no experience with Lupron, but I do have experience with both Tamoxifen and Femara, and they can cause some significant SEs. I had both back pain and pretty severe ankle/foot pain on Femara, and they were both SEs.

You mention both CT and bone scans. They are two different types of tests. If you've had one and not the other, perhaps you could raise that with your MO if the pain continues.

I'd keep on top of it, and if you are that concerned, I'd contact your MO and ask for scanning.

How will I know if the lesion in my head is malignant or benign if they cannot biopsy. My MO said it's a bad place to biopsy unless they drill a hole in my forehead above my eye. She said they won't biopsy due to risk it might be a hemangioma. I guess I am just not wanting to wait the 3 months to check it for growth. I am not very good at waiting. I am thinking if its mets I could be using my time more wisely like not working 40 hour weeks. I am selfish, impatient, frustrated, most of all, lonely because I suck at being a friend therefore I have none.

anyone have a soft tissue mass show up in superior anterior mediastinum? CT scan mentioned maybe a lymph node and has not changed much from the PET scan last year...the mass was not even recorded on that scan by the radiologist.

Talk to your Oncologist and primary about Bone scan. My oncologist ordered when AI Rx'd to get baseline sincec AI known to thin bones. I don't know how they differentiate between "regular" bone loss from aging and accelerated from AI. Statistics? Risks from radiation? Is it an appropriate tool for monitoring or should it be limited to 1/2yrs or longer?

Confusing scans /interpretations of scans. I posted this on the Ibrance page as well since that is the drug I am taking. Oncologist today said that the CT last week showed overall improvement since the scan in April. Sounded good until she hedged when I asked about the size, saying that size wasn't as important as the overall picture, since the radiologist might not look at the exact same area. And she had to look harder at the results to find the size. So Sept 2019 2.5, Jan 2020 (can't find record), April 2020 7mm, Aug 2020 1.9 - sounds like it increased by 2.5X. Has anyone else ever been told that "size" isn't the main thing to look at? Is there "much" variation with the CT scanner and rediologist interpretation? Scans in April and August same facility, scans in Sept and Jan at two different facilities. I thought they were more precise. Scared about what might really be going on and the value of scans.

Miles,

I started having symptoms of brain mets when I started Xeloda in March of this year (daily headaches, nausea, lightheadedness). MO ordered a brain MRI because I am stage 3c TBNC with symptoms of brain Mets. The MRI showed no brain mets. MO thinks that I am having a rare SE to Xeloda. Hopefully, your MRI comes out clean. It’s really scary to face possible mets so I think it is reasonable to want your family to know and to support you. Be kind to yourself and give yourself a break from feeling guilty.

Miles - hugs. I hope the MRI comes out clean. It is not selfish to tell friends/loved ones your fears and concerns, even if they cannot change the situation. I think holding it in builds stress which does not help anyone. I definitley keep things inside and do not tell people I should tell. Everything I read tells me how important community and support are.

SondraF,

Thank you for taking the time to reply! Keeping my fingers crossed it all works out. I was pretty okay until the doctor called and said we need to do a scan!

I want to thank you ladies for your feedback. The doctor ordered a PET scan and then wants me to come to his office to go over all the results at one time. I’m they said it is nothing bad, but wanted to examine the test with me to explain things. Hope y’all are all doing well.

Miles, are you on a laptop or phone or ipad and browser or app?? It's different on every platform it seems but I can try to help you

Miles - sending a Private Message PM might be different on differt devices and different browsers, but if I click on the person's name in a message, it takes me to where I have the option of sending that person a PM.

hi Miles

No wonder you are tired with these symptoms going on. I guess we all have moments when we want to stop trying. Those pass and we then feel different and then we have them again - I think it is normal..