CT/Bone scan results—talk me off the cliff

KMom57

ok. So I posted elsewhere last week that my MO said my staging CT and bone scan were clear. Bone scan just posted on the portal. It does say “No scintigraphic evidence of osseous metastatic disease.“ But it references a sclerotic lesion on sacrum and right iliac, and says there's no uptake there. That's where I've been having pain for about a year. The CT says “Bone windows demonstrate sclerotic lesion within the central sacrum can another sclerotic lesion in the right iliac bone which may represent bone islands. No additional lytic or blastic lesions are seen." Of course it is Saturday and I can't call my MO to talk me down or explain. I'm scared. Help?

EDIT TO aDD: In impressions it says “Sclerotic lesion central sacrum and right iliac bone most likelyrepresent bone islands. Correlate with nuclear medicine bone scan.

Sunshine99

Hi KMom, I'm sorry you got your report on a Saturday with no one in your MO's office to answer your questions.

My experience with the bone scan was that I had finished the scan and was seeing my MO. While I was checking out, they called me back down for another scan to take a closer look. There was some reference to sclerotic lesions but the word metastatic was used several times. I already knew about the mets, but this report identified some of the specific areas of mets. I'm hoping that because there is no mention of the word "metastatic" in your summary, they're not seeing mets. Let us know. Hoping for good results for you.

Anonymous

Bone islands are benign. Lytic or mixed lytic/sclerotic and they would be leaning towards a mets diagnosis. I had a large lytic lesion in a pelvic wing, along with other issues in my sacrum. The lytic lesion I believe was first picked up in the CT scan and correlated with the nuclear bone scan, with other lesions from L1 down. Lytic essentially means the bone has been eaten away and bone regrowth isn't happening. Sclerotic show bone has reformed, or something like a bone island will appear different on a scan to an osseous lesion based on where and how the bone has grown, and general shape. But since they have to report everything they see, and its better to be safe than sorry, that is why its reported. As Sunshine said, since you don't see the words like metastatic or lytic or osteoblastic in the report, they probably aren't seeing mets.

KMom57

Thank you both. Does this ever get easier? My cancer was missed on breast MRI so I guess I never trust imaging or radiologists anymore. Would bone island cause symptoms? And would it be there on a previous CT or MRI if that’s what it was? I had an ab/pelvic CT pre-diagnosis (2018 I think) to try to pin down chronic pain on thatside. I was told it showed nothing. I also had a lumbar MRI which only showed mild osteoarthritis changes.

Anonymous

I've long had back problems (as in 30 years worth) and finally blew out a disk in 2016, which gives me problems to this day. What happened last year on the other side started at first as a standard tortional injury to my sacroilliac I had done plenty of times before. What made it different, however, is that it slowly got worse over time and I was losing the ability to lift my right leg and walk over about four months. Thinking back, however, I had been having difficulty with a tight hip on that side for longer than that, so I suspect it had been growing for a while. Has your pain changed at all in the past year or remained relatively the same?

Bone islands are one of those things that are under 'incidental findings' on scans - like when they find a small lung nodule - and don't typically hurt and are usually left alone.

I just noticed that youve been on letrozole about a month longer than I have and not had chemo? Healing bone mets I believe show as sclerotic, but they also wouldn't be causing pain if they had healed. You may want to push to get to the bottom of this one way or another. Did they not scan you at diagnosis? Why did they start with hormonals and then surgery?

KMom57

They did a PET at diagnosis which was clear. But it was done at a different place, so it was not compared to this CT. They started with letrozole because my lobular was not acting as it should have on paper, and they were not certain it would be responsive to letrozole. With the very high ER/PR (99%) they were pretty sure I would have minimal response to chemo. AI was always going to be the big guns, so they wanted to make sure it worked. The idea as I understood it was that if they had done the surgery first, they would lose the ability to determine responsiveness of the tumor to the AI. We would effectively be shooting in the dark forever until it either recurred or didn't. So they started me on zolodex and letrozole, did a second biopsy at one month to see if the ki67 dropped below ten. It dropped to less than 1, indicating responsiveness. They then left me on it both in hopes they could save the nodes (they did not), and to see if the cancer would rebound and begin growing again as a certain (small) percentage apparently do after approximately 4-6 mos. The tumor stayed pretty stable, though clinically it appeared to be smaller. At surgery, the smaller satellite tumors were either gone (or just not looked for by the pathologist), the ki67 was higher than the rebiopsy but still below 10, (which makes me nervous honestly) so it was deemed not a failure, but in my eyes not a smashing success either. Incidentally, there was a lot of disagreement aboutthe right treatment plan in my case. Two different world class cancer centers with two different plans. I hope I made the right choice. I'm starting chemo shortly.

On the pain, back in late 2018, it was a lot worse. I couldn't even sleep on that side and it was tender. That settled down prior to my diagnosis, and has stayed pretty much the same since. Worries me because I was complaining for years that something was wrong on my left side in my arm and then in my nipple, and nothing showed. Feel afraid I might just be super aware of my body, and that this is another of the same situation.

Anonymous

Ah right - that is definitely a different approach. I am also highly ER/PR+, about the same as you, but when they were still talking surgery/chemo while waiting for the scans to come back it was going to be neoadjuvant ACT, surgery, rads even knowing the ER/PR status. But.. Im IDC so I wonder if that makes a difference. I just had my scans after 7 cycles and almost all my bone mets have either resolved completely or are almost there but the breast tumor itself hasn't changed on the scans. I couldn't believe it when I heard that because to me it sure looks different. It wont come out unless it becomes a massive sore or starts to grow again, at which point they would more likely radiate it.

Do let us know what your outcome was, and good luck on surgery!

KMom57

That's good news about your mets resolving. I know what you mean about the tumor. I was also shocked when they said mine wasn't shrinking on imaging because it sure looked different to me. Softer. Harder to find when I would look for it. Even the color of my breast skin was different. But then again, on u/s they originally said mine was 8 cm when you counted all the satellite lesions and it was 2.4 (the size of the main lesion which didn't change) on final path. Whether they just didn't look for the satellites or they were gone, I still don't know. Because of covid and other considerations, i did he surgery locally and the path here didn't look for the same things they would have at my NCI center.

On the approach, I don't think it was the IDC vs ILC. The other opinion I got from a second NCI center was ACT, surgery, rads, letrozole. As I struggled with the decision, my local MO told me that what I was experiencing first-hand was the huge ongoing controversy in the MO world about how to treat hormone positive breast cancers.

KBeee

KMom57, can you ask them to get your PET scan and compare it to your current scans? They should be able to share records to do that. Hoping you get more definitive answers and that all is benign.

KMom57

KBee, I was thinking the same thing. I also had a CT and MRI in 2018 pre-diagnosis to try to track down the cause of the pain. I’m going to try to get them all reread and compared i think. I’m scared to death because bone islands or lesions were never mentioned to me on any of those three scans.

KBeee

Hoping everything is benign. Waiting is SO hard. Thinking of you.

KMom57

Thank you. No response from the MO today. Hopefully he will call tomorrow.

KMom57

So the answer was that after comparison, the lesions did appear on the PET/CT at diagnosis, but they were probably not specifically mentioned because they did not light on the PET. They have not changed since October, so MO feels it's as certain as we can be without a biopsy that it is benign. He says it's not even something he feels we need to follow up on, but we will go back further on previous scans just for peace of mind if I want. He said even if we were to assume they were not benign, it's extremely unlikely they would be causing my pain on that side as they are very very tiny.

KBeee

Great news!!!