Bone Mets limbo...

NancyHB · November 2016

I had a chest and pelvic CT back in May prior to my UMX and DIEP (second occurence of BC in five years). My local radiologist reads the scans and proclaims most things "all clear". UofM radiologist reads scans and reports "subcentimeter lucent lesions on L2 and L3" and "3-4mm sclerotic lesions on left iliac crest and femoral neck" and that metastasis should be considered and explored given my history. My MO says let's wait and rescan in three months to get through surgery, and see where we are.

CT last week, local radiologist has previous report from UofM but does not refer to it in his analysis. Once again gives me the "all clear", says bone windows show no signs of mets. My MO says we're done with scans, nothing to worry about. I'm not feeling confident, but who am I to question the radiologist?

Would you ask UofM for another second opinion read? I'm not panicked or even worried - I simply want clarification of what's been reported previously. It kinda leaves me hanging, ya know?

KBeee · November 2016

I would absolutely ask U of M to read the scans. Hoping they give the all clear too

barbe1958 · November 2016

Hmm, I've had the same findings in my CT's this year and no one has commented on them so I figures they were nothing to worry about. Why did the other place read your scan? I wonder if they are being more diligent for training purposes? (Is it a training facility at the University?)

NancyHB · November 2016

Hi Barbe - so you've had scans that indicate mets, but no one seems worried about them? That itself would worry me! My MO is really good about following up anytime he sees the "M" word on my reports, which is why I had this follow-up CT scan.

The previous report from UofM was not used as a teaching opportunity (although UM is a teaching hospital) - in fact, the radiologist who read my scan is not only an MD but a PhD, and well-respected within the BC center at the hospital. My CT was sent to UofM in preparation for my DIEP surgery (to graph the arteries and veins in my abdomen), and these were their "other" findings. Heck, they found a number of lesions in my liver and spleen and very specifically explained why they felt these to be benign cysts, so I trust that they're not just throwing stuff out randomly without explanation.

Luckily the report is very specific about the exact location and even the exact slide in the series, so this afternoon I pulled up the previous CT scan and located the lesions in question. I then pulled up the current CT scan and - lo and behold - same location, slightly larger lesions. Black holes around 6-7 mm on the sagittal view (from the side). I think, at this point, I'm going to take the new disk over to UofM and ask them for a second opinion. I'm not sure I have the answers I feel like I need.

barbe1958 · November 2016

Nancy, the report says "may or may not"....or "not convincing indication"....or "further imaging required". I'm already stage IV and right now we're focusing on a new finding in my lung since May and my brain. Bone mets would be the least of my problems right now.

I pray you come to a solid benign solution!!! You are not alone.

bevin · November 2016

HI NancyHB

I am glad you are seeking a second reading of your scans with the UofM. Some radiologists are better than others. Whether they graduated 1st in their class or last with a passing grade , they are still an MD .. so my point being, they can make mistakes and miss things. Some are better than others. Its good you are being your own patient advocate. . I hope it all gets sorted out. Wishing you health. Keep us posted

Hopeful82014 · November 2016

Nancy, just wanted to chime in and send some support - with fervent hope that these do not turn out to be metastases.

It's certainly an object lesson in the variability of readings and the wisdom of self-advocacy (to say nothing of second or third opinions).

Meow13 · November 2016

I was in excruciating pain on the weekend, back pain. Now after icing and seeing chiropractor I am pain free but a little sore. I have an MRI tomorrow. I would like to ask anyone with spine mets if they were in pain?

barbe1958 · November 2016

Meow does your chiropractor know you have cancer? I'm surprised he would treat you before you know if it's mets. He could do damage to weakened bones.

cive · November 2016

Nancy, I hope the U of M tells you good news, I think being your own self advocate is called for sometimes.

Meow, I have bone mets especially in my spine, but the pain I feel is more stiff muscles, that is helped with stretching, and sciatica.

NancyHB · November 2016

UofM won't do a read without a referral from one of their docs, so I contacted my PS and am waiting for a response. I'd be very surprised if he said no, so hopefully I can drop my disk off next week.

Thanks for the feedback and support. My biggest challenge is a philosophical difference of opinion with my MO about "when" mets should be determined and treated. He has stated no scans or treatment until symptoms appear (I'm reasonably asymptomatic right now, as my hip/back pain could be age- or exercise-related) so he won't advocate unless he feels it's necessary. And even with this scan, he feels the lesions are small enough that he wouldn't recommend treatment at this point anyway. I'm all about knowledge=power, and I can't do anything until I have a definitive answer one way or another. *rolling eyes*. At this point that's all I really want

barbe1958 · November 2016

Holy crap!!! Why not treat lesions when they're small enough to easily treat??? And if you have pain you aren't asymptomatic.

barbe1958 · November 2016

Checked my CT and I have sclerotic lesions. I wonder if it's the lucent ones UofM is worried about?

bevin · November 2016

Nanch HB - keep us posted . I hope your surgeon will refer the scans to be re- read. If not you can see your PCP perhaps. Good luck to you

NancyHB · November 2016

Quick update after a long day. Short answer - UofM will not be reading the CT scan. I couldn't get a referral from my PS to the radiologist - PS says that's my MO's responsibility (I get that), and my MO says "we're all good" so no referral. So I sit here with two reports and no resolution.

After an ugly cry, I called my local radiologist to set an appointment to discuss his report. He's on vacation this week (which explains why he didn't respond to my MO) but will be back on Monday, so I'll be calling him then. Maybe he can give me the answers I need.

NancyHB · November 2016

And thank you, everyone, for your kindness and support. I hate to feel like a whiner. I acknowledge my emotions are still a little raw after this new diagnosis and feeling fairly discarded by my MO for "survivorship" only 10 months after a second, TNBC dx. I'm seriously considering simply stopping appointments - I'm done wth treatment, my MO won't be seeing me anymore, there are no scans and no bloodwork......maybe it's just time to move on and hope for the best.

Bitter much? Yes, please. *sigh*

Meow13 · November 2016

Hi everyone, I am sitting here with a glass of wine. NO mets found just 3 disks that are slightly bulging. I have just slight pain in back. No need for surgery just continue with chiropractor therapy. I'll be swimming in less than 2 weeks. Can't wait to get back in the pool.

I hate cancer with a passion. It has taken my friends and put me thru so much. I feel like all I can do is pray and give to research.

Meow13 · November 2016

Oh I forgot to say my chiropractor is very sensitive to breast cancer his wife is stage 4. He admitted to me the treatments seem worse than the disease. His wife has the same mo I have, he tells me do what the mo says if you want to live. Did I say I hate this cancer?

KBeee · November 2016

Nancy, can you request a second opinion from a MO at U of M?

barbe1958 · November 2016

Nancy how the heck do you get an appointment with a radiologist? I get it about say syanaro to your MO. Mine didn't even recommend steroids for my pneumonitis which I find out is the only thing that will help me! In fact he didn't even discuss the CT findings and I told him I was so SOB that I was going to have my DH call an ambulance one day. I only found out when my PCP gave me a copy of the CT and I read it myself. Now I'll have to go back and get my PCP to give me a script.

It's like if we're not in active treatment they don't want anything to do with us. But I'm in treatment for the rest of my life and I'd like to learn to trust him!

Let us know what the radiologist says. We're here for you so rant away!!!!

LisaAlissa · November 2016

Sounds like you need a new MO. Make an appointment with one at the UofMi. When you're making the appointment, tell them about the scans you have, the findings of the UofMi radiologist and your unhappiness with your local follow-up care. (Maybe your PS could suggest a MO there?)

At any rate, ask if they'd like to review the two scans you have before your initial appointment or if they want to see you first.

My very best wishes to you,

LisaAlissa

barbe1958 · November 2016

Meow, glad to hear you are clear!!! Now to get Nancy a straight answer.

NancyHB · November 2016

Meow - so very glad to hear your MRI was clear of cancer (sorry about the bulging discs, though - back pain still sucks). Swimming sounds wonderful - do you do this regularly? I'd love to swim more, the water is gentle and feels therapeutic and it's quite the workout!

I hate cancer too!

NancyHB · November 2016

KBeee and Lisa, I mentioned getting a second opinion at UofM to everyone I spoke with, and got pretty much the same answer - no need for a second opinion, and MO likely wouldn't see me because I've already completed treatment. PS's nurse even used the word "cured" in conversation (I get that they're not oncologists so I didn't say anything...) It was a good idea, though.

Barbe, I didn't know I could actually speak with the radiologist until my gf explained she'd gotten an appointment with a different doc/same practice after finding a broken rib (Stage III ILC) on CT. The doc spent a great deal of time explaining what he saw and why it wasn't mets. I'm hoping my radiologist will allow me to make an appointment to do the same. I'm up for a good discussion about the discordance between the two reads!

barbe1958 · November 2016

Nancy I hope you get the appointment and a clear answer. Please keep us posted.

bevin · November 2016

Barbe - most radiologists will call you back and explain their reading of the reports and answer questions, if you ask them to. I have never had one not return my call, and actually it was the radiologist who called me with the confirmation of findings of BC from the hospital I go to.

Nancy- I hope you get answers. Good luck to you.

KBeee · November 2016

first time around, I got a second opinion from an MO at a major medical center 6 months after finishing chemo. Just tell them you have questions about symptoms,your long term treatment and monitoring.

barbe1958 · November 2016

We never talk to the radiologists in Canada...

barbe1958 · November 2016

We talk to RO's though, of course.

NancyHB · November 2016

Good morning! Finally connected with my radiologist yesterday; we spoke on the phone on my drive home from work, and he was very patient and informative. I explained my concerns about the discordance between the two reports from the two institutions. He pulled up the scan from May and said, "I don't see any lucencies on your L2 or L3." I told him exactly what series and slide number, and he said, "Oh, I'm looking at a different series...you know there are seven series here...okay, here's the slide, and yes, I see the lesions. In fact, there are lesions on your L4 and L5, too."

What? Apparently in his report he reviewed a different series (same scan) than UofM did.

He then compared this series with a series I originally had completed in February, and says the lesions weren't there in February, so he thought these new ones must be an "artifact" from the machine. I then explain I had yet another CT in July (prior to DIEP) at UofM, and the report mentioned the lesions were still present but unchanged from the May scan. Two different machines at two different institutions, so whatever's there are not artifacts.

He acknowledges the lesions are evident on that scan in May, and he says they concern him - except he simply doesn't see the lesions on my current scan. They're no longer there. He says he can't explain why they were there in May and July, but not now, but says that sometimes chemo creates lesions, and then once you stop chemo they go away (that doesn't make sense to me, but whatever).

We discussed the sclerotic lesions on my hip, he says those are bone islands. He pulled up a CT from 2014 and says they were there back then, too, and remain unchanged, so he feels they're not sclerotic.

And that's where I am right now. He doesn't recommend any follow-up scans - "there's nothing there anymore." I don't know that I believe that but there's really nothing more I can do, so I'm going to let it go until I have symptoms otherwise.

barbe1958 · November 2016

Holy cow, what a bunch of info there! To find out there is different series a radiologist could look at in the same CT is concerning. You can see why there are different interpretations. Bone islands are pretty common, I know that. Otherwise it all sounds good. Was he the one with the concern in the first place or the one that said all is fine?

How do YOU feel about this?

Bone Mets limbo...

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