When is it "official"??

JEA16

Hello! It's been a while.

A recent spine mri for back pain showed a couple small new lesions, which was followed up with a PET scan a little over a week ago. According to the PET report, there are two spots in my pelvis which "are highly suspicious for osseous metastases", in addition to "questionable findings" in my left hilar region (both of which were not on the last PET scan a year ago). Bone biopsy was done yesterday on the pelvic lesion, so we're still waiting on the pathology.

While I'm pretty sure I understand where this is all heading, my head is spinning and I'm not sure what to think. I thought about heading over to check out the Bone Mets thread, but then wasn't sure if it was a bit premature for that.

Sorry, I don't even really know what i'm asking here, to be honest. I suppose I'll know what this is soon enough, but maybe I'm just looking for people with similar experiences to help me prepare myself in the meantime? Does everyone have a biopsy to confirm mets, or would the scans be confirmation enough?

Thank you all in advance!

berries

It wont be official until you get the biopsy results in... in the meantime, I will pray for you that it is benign findings and just damage from chemo or arthritic changes. I'm actually going through something very similar right now and so scared, but keeping hopeful that they are just bone changes (as I am only 4 months out from AC/T chemo). Anyhow, please keep us posted and keep positive until you get those results.

Keep us posted! Sending you love xo

illimae

Biopsy makes it official. Scans can show a lot but not everything. I had 1 biopsy proven bone met and 2 suspected/presumed but after 3.5 years of treatment, a trial radiologist stated that the 2 aren’t mets, so I’m back to my original 1. Good luck 🙂

berries

illimae how did they rule out the 2 suspected ones?

illimae

berries, Great question but I’m not sure, I was driving with the hubs when I got the call and didn’t ask. I assume that having the same radiologist review years of scans back to back allowed him to see things in a different light, rather that having different radiologists interpretations of scans every 3-6 months. But I will ask and report back if anyone is interested.

JEA16

Thanks, ladies!! That's pretty much what I was thinking. I think I just needed to check-in with reality for a moment.

berries

I'm so sorry you're going through something similar. I hope you get answers soon, and that yours is benign as well! xo

@illimae

How long did it take to get the results from your bone biopsy? I know it can take a little while longer for the results on the bones, but of course each minute feels like an eternity as I wait. Also, I'd be interested in how they ruled out your suspected mets as well if you ever get that information.

thanks again!!

illimae

JEA, once they saw the bone scan, I was told I’d be treated as stage IV but I think the bone biopsy and results were done the following week. FYI, don’t google bone biopsy, I lost my mind for nothing, it wasn’t bad, just some pressure.

kar123

Just chiming in. I just got some bloodwork back. We've been watching my ALP Levels creep up slightly. I have a new onc and I feel like she is paranoid about every single thing, so I've been holding off on scans. It did have a bone scan show a tiny spot on a rib, but I remembered having had an injury there. (nothing confirmed). This latest round of tests showed I'm just a tenth of a point over normal for WBC, Calcium, and while still slightly higher than normal my ALP came down.. The test also showed signs of anemia. Dr. Google has told me this is not good. It will be 10years from diagnosis on June 14th. My birthday was June 3rd. I was diagnosed at 40 and here I am at 50, so happy a few days ago and now I'm frozen in fear just like I was at diagnosis.

berries

I'm so sorry you're going through this, kar... do you have any pain? Its amazing you are 10 years out and that alone should be celebrated. I pray for clear results and peace of mind for you!

GiGiL

I am right there with you girls. I am 9 years out and was feeling pretty fit. I did some heavy lifting which caused rib pain that wouldn't improve for about a month. My husband is an MD so he did a CT scan and found a broken rib. The CT also showed some spots on random vertebrae. That CT sent me to an Oncologist. Now I am scheduled for a mammo and ultrasound and also PET scan. I am frightened and my mind is running overtime. The Onco ran blood tests and everything looks perfect except the cancer marker is elevated. Ugh! How does one get through the waiting and worrying? I have always done meditation, it it isn't cutting it this time. ❤️

DebJenx2

I'm here to ladies core biopsy is back and after 14 yrs NED it's looking like a right side mastectomy, with limp nodes. MRI and bone scan in my immediate furture. None however will happen before my 58th birthday which is the 9th.

Moderators

Dear DebJenx2,

Welcome to the BCO community. We are sorry that you find yourself here with these new findings after 14 years NED. We are glad that you reached out to our members and we hope that you will find support and helpful information here that will guide you along the way. Please keep us posted on what you continue to learn and when your surgery and tests are scheduled. Please let us know if we can be a help to you as you navigate your way around the boards.

The Mods

illimae

berries and anyone interested, I heard back about the suspected right scapula met that I was recently told is not actually cancer. The doc said his radiologists reviewed CT and bone scans for the past 3 years and the scapula appears on the bone scan but not the CT every time, therefore they are confident that it is something benign, not cancer.

GiGiL

That is good news! I am very happy for you.

berries

great news!!

MinusTwo

Illimae - FANTASTIC news. Thanks for sharing the scapula issue is benign !!!

JEA16

Hey there! Good news - preliminary results from ilium biopsy don't show cancer. So that's great! But I guess I'm not totally able to relax just yet. Since there were a few spots on the scan looking like mets they are working to decide the next steps, which will likely include a chest CT and thyroid biopsy to start (I also have a new thyroid nodule that wasn't on my ultrasound this past Nov which was also avid on the PET scan and is highly suspicious on u/s). I wish I could fully celebrate, but I'm still holding my breath over here.

thanks for the support, ladies!

LillyIsHere

Hi Ladies, here I am worried for my thyroid. In beginning of May I noticed a thickness of my neck, the opposite side of BC. I had a blood test and my TSH from normal a year ago has moved to Hypo levels. Also, a noticed a nodule and the ultrasound last week did show a nodule. Now I am back to my PCP and waiting for her to direct me where to go. Also, my right ear is starting to hurt as well. Can it be cancer in thyroid? I am so worried. Any of you has any similar experience? Any suggestions?

Thank you ladies!

KBeee

JEA16, hoping you get firm answers soon and that all is benign. Sorry for this extended time of uncertainty which is so hard.