Bone scan after reconstruction

JMouse, yes, please keep me posted!

vlnrph, I couldn't wait to eat after the test, lol! The only thing I thought was odd was that they started the scan only about 25 minutes after injecting the stuff, so I wonder if that was enough time. I do have concerns about false positives. I have lots of lumps in my reconstructed cancer side. They have so far called them "surgical changes." I also have rib and lower back pain but nothing ever showed up on bone scan except for some inflammation in the right femur (which will probably light up on this PET as well).

I started the Livestrong program at the local YMCA so I've been working out again so now your post about your bowing arm lighting up has me thinking I might have some stuff light up just from the strength training I've started doing recently.

As far as brain mets, I have had dizziness but no headaches, and I'm not concerned about brain mets at all, but my onc still thought we should check. But I've heard it's nearly impossible to see brain mets on a PET because, as you said, the whole brain lights up anyway.

I posted this on my other thread too, but I'm pasting here as it's relevant:

OMG, I am so frustrated right now. I am at THE top cancer center in the country. What I'm about to describe is completely unacceptable incompetence.

I had a full bone scan in March that saw something on my right femur. I commented to my docs - TWICE - that that was odd because it's my left hip that sometimes bothers me AND there was an indeterminate lesion on my original staging CT scan back in 2017 (same cancer center, different oncologist). Back then, my original oncologist opted not to scan further because I was triple negative and she said it wouldn't change her course of treatment no matter what. She also said she was pretty positive it was a benign bone island. So I was staged 3a and that was that.

Went for my PET scan on Monday and was told I lit up on the left side. I again reminded them that there had been something there at my initial diagnosis in June 2017. They said they wanted to follow up with an MRI of the left hip. Again, I JUST had an MRI of the right hip last month because it supposedly had increased uptake on the bone scan. The MRI of the right hip noted some inflammation of the adjacent muscle but absolutely nothing in or near the bone.

I felt like my oncologist was acting different. She was repeatedly petting my arm as she talked to me (she's usually very detached), seemed a little nervous and it felt like she was being more vague than normal. (Although she also actually said out loud that she would have scanned the left side back in 2017 and it would likely have changed how she had treated me. She directly contradicted my original oncologist, which was weird, because usually doctors back each other up no matter what.)

I asked for a copy of my PET report. They were really weird about it, saying the oncologist had to sign off on releasing it (which is not true. I ALWAYS get copies of my report released to my patient portal and they've never hesitated to give me a hard copy when I've asked for it.)

I just went on my portal to see if my oncologist had updated the notes from my appointment. She had actually copy/pasted part of the PET report, which says that last month on my bone scan, an indeterminate lesion with increased uptake was ERRONEOUSLY reported to be on the right side when in fact it was on the left.

HOW does a mistake like that get made at this level? How does a radiologist at a top cancer center mix up left from right? And clearly my oncologist did not look at the actual images but just took the radiologist's word, otherwise she would have picked up on the fact that they were looking at the slides backwards or something.

This also changes the news I received. I was under the impression my left femur lit up on the PET scan but since I thought it had not shown up at all on the previous bone scan, I figured it was almost 100% sure it's benign. Because I read that bone islands don't have uptake on a bone scan and that's often how they differentiate them from a possible bone met. But now I know there was increased uptake in this area on the bone scan AND again on the PET.

I'm frustrated that they made this mistake, that I took time to have a completely unnecessary right hip MRI and now have to have one on the left, and that they are not being forthcoming and owning their mistake.

Thank you for this info, JMouse.

I’m not sure what I’ll do and just want to get the MRI of the correct hip done first. It’s incomprehensible to me that no one caught this error.

Not to mention, cancer has destroyed me financially, I’m barely meeting my bills with my freelance income and I lost an entire day’s work to have an MRI done on the wrong hip and now have to lose another day’s pay to get the correct hip scanned.

So the MRI of the CORRECT hip, the left one, said "not stereotypical of a benign lesion" but also "no aggressive imaging characteristics." So vague!

I take it to mean "We have NO idea what it is, let's kick the can down the road and rescan in a few months."

So I didn't even see my oncologist to get the results. I saw her PA. And I really kind of lit into her. I told her how frustrated I was to feel that I can't trust the radiologists who are looking at my scans. I asked her why this lesion lit up in March bone scan and May PET but didn't light up on my Sept bone scan when I was on chemo. I made her pull up all the images of all the scans.

Lo and behold, she and I both, with our untrained eyes, saw it on my September scan. But it wasn't even noted. It was a very faint uptake, but it was clearly there. And it was in the same exact spot as on the March scan, where it was brighter and very visible. (For background, I was on chemo in Sept - Xeloda - and in March had been off chemo for over 5 months.)

I told her I didn't know which would be worse, that the radiologist in September just didn't notice the spot, or that he saw it and didn't bother to note it.

Then I made her pull up the March 2019 bone scan (where the lesion was incorrectly noted as on the right instead of the left) and the March 2019 MRI of the right hip. Right there on the screen in front of my eyes was a big red "L" right next to the lesion on the bone scan. I asked her how in the heck the radiologist could have compared my MRI to that bone scan and not noticed that it said "L" when the lesion was noted to be on the right.

The PA, without hesitating, responded, "Well, if she was just looking really quick..."

Seriously???? Um...I don't want any radiologist "just looking really quick" at my scans!

The PA said the radiologist compared this MRI of the left hip to all the scans they have, going back to the full body staging CT I had in June 2017. (I had that one scan prior to treatment in June 2017 and then no further scans until September 2018.)

She noted the lesion is "virtually unchanged over 2 years." Even though it seems it's gotten a tiny bit bigger according to the measurements she noted.

I guess they're saying it hasn't really grown over two years. But I was on chemotherapy for almost 20 months of those 2 years! And now I'm off chemo and here it is lighting up on scans.

Plus the initial CT scan noted it as a bone island. It doesn't even have the characteristics of a bone island.

I told the PA that I texted my sister in law the second I got off the table at my pet scan and the text timestamp was 11:33 a.m. I looked at the PET scan and the report was dictated by the radiologist at...11:33 AM. So he couldn't have looked at it for more than 60 seconds.

There were other things in my various scans that we saw that were not noted on my reports. My entire chest/rib area is noted as "post-surgical changes." But there are things on the scans that I now think they just looked at quickly and deemed to be due to post-surgical changes.

So the gist is they really have no idea what it is on my left femur. It doesn't have the characteristics of a typical benign bone lesion, but apparently doesn't appear "aggressive," which I assume means it's not growing or causing bone destruction. But it wasn't even noted on my September scan and who knows what else they didn't note. I really feel like I want another set of eyes on all my scans.

So now I get to wait probably another 6 months and have it scanned again. It's truly never ending.

Thanks for the responses!

I really can't do much about any of it. Since they re-scanned the correct (left side) femur and can't seem to determine exactly what the lesion is, they are basically doing nothing unless I complain of pain (which I recently seem to have pain and can't tell now if it's just a "placebo effect" now that I know something is there).

The MRI report said the lesion is "not stereotypical of any benign lesion" but also doesn't exhibit any "aggressive imaging features." Which is I guess a nice way of saying they have no idea what it is.

To my mind, there's a chance it could have been a met and it started to heal when I was on chemo. It is a central lucency with a sclerotic rim, which to my understanding is what a healing bone met would look like.

Thank you, JMouse! I have my 3 month follow up with my oncologist next week but she isn't planning on doing any follow up imaging since the MRI was just done at the end of May. So she will wait until my next 3 month follow up in November. So I get another 3 months of waiting to see if this is anything. I feel as cancer survivors, we often have to live in 3- 6 month increments and it really kind of stinks.

If I had severe pain, I would push for having a repeat scan now. But I figure if it was a met that started growing again because I've been off chemo for 9 months now, I would probably have more consistent and severe pain. I don't want unnecessary scans. I just wish they hadn't messed up initially so I could have a little more confidence in the results of the last scan.

I’m so sorry to hear about your husband. Funny you should say that because my left shin has been killing me. Also my left foot. I figure probably arthritis since chemo has aged my body.

I’m done with treatment so I guess from here we just have to go by symptoms. My lower back has hurt and sort of radiated down the left hip for months now though and the only thing that lit up on the pet scan was whatever this is on my left proximal femur.

The last MRI report said possibly a chondromyxoid fibroma. But those are pretty rare, usually found in adolescence and are usually larger than whatever I have. Seems like an awfully strange coincidence if I have a rare benign bone tumor and breast cancer. But who knows.

I also was told cancer rarely shows up below the knee or elbow.

Saw my oncologist yesterday and she is referring me to orthopedics. She still feels very sure the lesion is benign, but now is saying it will probably have to be removed (because of where it's located on the femur). She said it so casually, as if major hip surgery isn't going to completely disrupt my already rock bottom falling apart life - good grief.

My sister in law was at the appointment with me and asked how we can know for sure it's not a healed met or a met that's growing again. Oncologist was evasive and just repeated that the MRI report didn't show any aggressive features. She said the referral to Ortho will probably result in them doing a more complete set of scans.

I pointed out that the lesion was there on my September 2018 bone scan and wasn't even noted by the radiologist. She said something that alarmed me. She said sometimes when they go into the scan with a mindset of looking for mets, they tend to dismiss anything that doesn't look like a met. I restated my feeling that if it's in my body, I think the radiologist should be noting it and I don't want a radiologist who doesn't know me making those kind of calls. She nodded but I'm not sure how much she really "heard" me. This is a world class cancer institute and to hear that it's just kind of accepted that the radiologists will decide not to even mention a finding if they don't feel it's worrisome or related to cancer is just disturbing.

My alkaline phosphatase is back to the very top of the normal range (136), but normal for the first time in a year. So that's good. Does anyone know if you can have bone mets with a normal alk phos level?

Well, I have been referred to orthopedic oncology for whatever this lesion on my femur is. My oncologist had said I would need to see an ortho and it would probably have to be removed, so I tried to make an appointment locally with an ortho, but now all of a sudden they're saying I have to be seen specifically by orthopedic oncology and they've booked me an appointment at Dana Farber for Monday.

Hopefully they will have reviewed my most recent bone scans, PET scan and MRI before my appointment and have some ideas of what the lesion is and what needs to be done next.