Bones, fractures, mets, osteoporosis, etc.

[LexieCat]

I didn't have it in front of me when I met with the oncologist last week, but I got a chance to read the report of my latest CT scan.  Among the findings in the report: "Comminuted displaced fracture is again seen in the medial right clavicle extending into the sternoclavicular joint. No significant callus formation is seen. Adjacent soft tissue thickening. Minor superior endplate compression fracture of T9, unchanged. New healing anterior right third through fifth rib fractures."

Per Google, "comminuted" fracture means broken into more than two pieces (hence, I suppose, my sensation of a rattling bag of bones in my collarbone). In addition to that new bit of info (knew it was broken, not that it was multiple pieces), this is the VERY first I'm reading about rib fractures--three of them, no less. I had NO pain in my ribs after the fall (though I did have a huge purple bruise covering the lower half of my breast).

So I sent a note to the doc, expressing concern that all of this was yet another indication of metastasis to those bones. I heard back from the NP, who said basically the same thing the oncologist did when I asked about the broken clavicle in general--not to worry, the systemic therapy should fix it, along with the bone-strengthening meds (they will be starting Zoledronic Acid in a couple of months when my Boniva--for osteoporosis--runs out).  She also said it could very well be due to the osteoporosis, itself, rather than the cancer.

I find it really weird that nobody seems more alarmed about potential bone mets. I know that *I* sure as heck want to know whether I have multiple bone metastases or just that one tiny lesion they found in my sacrum. They tell me there will be no PET scans unless there are signs the cancer has progressed.

I'm pretty sure that regardless of what my oncologist recommends when I'm done with the primary rounds of the triplet I'm gonna want to talk to a radiation oncologist about the bones, just to see if anything can/should be done.

Anyone have any experience/thoughts on this?

[LouT]

Lexie

Wow, I don't even know what to say.  I guess I can understand how a bone can be broken in a fall, but I'm surprised that you felt nothing.  From what you're saying; it seems that your ONC is not so concerned because he is betting on the treatments taking care of any bone mets that might (stressing might) be there.  I sure can understand your concern though.  I would be more comfortable having something like that either confirmed or proven not to be the case.  If this is really sticking with you then call and ask to speak to the ONC personally.  At least you may be able to get this settled in your own mind.  We deal with a lot going through this disease and the fewer unanswered questions we have the better we can navigate and survive the treatments.  Please keep us updated here.

Lou

[Rower Michelle]

I had bone mets on my right hip (no pain), ribs (one was fractured from the coughing fits) and scattered small lesions on my spine.  I was a little freaked about the spine.   My Integrative Oncologist thought I should have radiation on the spinal lesions. My oncologist was pretty nonchalant about the bone mets.  Said he was confident that the systemic therapy would knock out the mets and we added a Calcium and high dose of Vitamin D (10,000 units daily). 
 

Sure enough the bone mets were indeed gonzo after four months of treatment.   The reason we didn’t do radiation straight away is that sites can not generally receive radiation a second time.  In his opinion the wait and see approach was prudent.  
 

The team wasn’t even a little freaked about bone mets which always struck me as downright weird.   

[Jennedy]

I had mets to my right shoulder blade and it showed in the PET scan. I did get radiation on my shoulder while we were waiting for genetic test results. The pain was bad enough that I needed to buy front closing bras. I was told not to get a massage (even by my 6 year old granddaughter) because they were afraid it would break. 

I am getting Zometa infusions every 4 weeks and also take calcium and Vitamin D.

So, if you had a knees to neck PET scan at the beginning of all this, I think it would've shown. 

[LexieCat]

Thanks, Michelle,

I find that reassuring. And I was forgetting about trying to limit radiation to the sites. I've been on Boniva (along with supplemental calcium and D3) for over two years, for the osteoporosis. I might ask again whether, in view of the fractures, anyone (and I should probably include my primary, who was treating the osteoporosis) thinks we should start the zoledronic acid sooner rather than later (we were gonna finish my remaining three months' worth of Boniva before switching to the zoledronic acid). 

My mom, who died of metastatic breast cancer, broke her femur and died after a bad reaction to anesthesia (in connection with surgery to repair it) caused her to be on a ventilator the last few months of her life. So maybe that's why the idea of bone mets is particularly nerve-wracking for me. She died over 30 years ago, though, and so much has changed for the better in that time. 

Apart from looking into the change in meds, I'm gonna try to chill at least until we see how my next scan (after my final round of primary chemo/immunotherapy) looks. 

[LexieCat]

12 minutes ago, Jennedy said:

So, if you had a knees to neck PET scan at the beginning of all this, I think it would've shown. 

You're probably right. The only spot that lit up was the spot on the sacrum, which was too small to see on the CT--they had to look at it with an MRI to visualize it--and I've had zero pain from that, to date. Not that osteoporosis is anything to be happy about, but I'd rather have that than cancer in my bones.

[BridgetO]

Be aware that radiation can weaken bones, too.  After I had pelvic radiation for a gynecologic cancer I developed two insufficiency fractures from radiation. Fortunately, these were non-displaced and not painful. They appeared on routine surveillancc CTs. From what I read (Dr. Google!), these sacral fractures after radiation are not uncommon. Sometimes they cause pain and sometimes they don't. I didn't need any treatment, but it did cause me to worry about what other bones down there might break. I decided to give up splitting firewood because I was concerned about the impact.

I 'm not sure to what extent bones other than the sacrum are affected-- I didn't ask Dr Google about that.

Bridget O

[Sabacat]

You've had such good response to treatment that your oncologist is probably betting any potential bone mets will disappear soon.  No point in subjecting yourself to additional radiation unnecessarily.   That said, I am prone to freaking about stuff that they seem unconcerned about, so totally understand the feeling!

Susan 

[LexieCat]

I know, lol,

How can we do our JOBS if we don't know what to freak out about? Sheesh. We don't need more misdirected angst floating around in the atmosphere--especially these days!

[BridgetO]

Re: misdirected angst: Here's a question for all: how do you misdirect your angst? Me, I worry about my cat'. We have this semi- feral cat that lives on our front porch. He's been there for 16 years. He refuses to come inside.  He usually comes when called, to eat. If he doesn't and I can't find him for a few minutes, I get very anxious and imagine he's been run over by a car or eaten by a coyote or something. He always does show up though, usually soon. When on vacation (whatever that is!) I get worried that whoever is taking care of him won't feed him and he'll go hungry. There are always very relliable people, by the way. So for me it's cat angst. I guess it's better than worrying about recurrences?

[TJM]

I think oncologists are going to have to change tactics. 20 years ago you died within months of diagnosis. Today you have years. Thus,longterm side effects become more important. 

Peace 

Tom

[Tom Galli]

Lexie,

I can't recall. Have you had a PET scan. If so, was there any SUV uptake anywhere in or near your bones?

Stay the course.

Tom

[LexieCat]

9 hours ago, Tom Galli said:

I can't recall. Have you had a PET scan. If so, was there any SUV uptake anywhere in or near your bones?

Yes, immediately after the CT scan showing probable cancer in my LR lung (prior UL lobectomy), I had one. In addition to the tumor, numerous lymph nodes lit up, as well as a spot on the sacrum. That could not be visualized via CT--they had to order an MRI of pelvis, which showed a 7 mm lesion on sacrum. No uptake shown on any other bones.

[SamGirl50]

I HATE cancer!!

[TJM]

SamGirl.....I think you summed it up perfectly.