recurrence in the skin after a mastectomy
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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.
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Follow up MRI for the left hip is scheduled for Wednesday. Still no one has addressed the huge mistake of confusing left and right on my bone scan. Very frustrating.
This thing on my left hip was deemed a bone island on a full body CT in June 2017 and never addressed again.
I had s bone scan in September 2018 that showed NOTHING. I was still on chemo (Xeloda) then. Finished chemo end of October.
Now I find out the long forgotten left hip lesion had increased uptake on a bone scan 6 months after a clean bone scan and 5 months after finishing chemo.
And it also lit up on a PET-CT.
So it was deemed a bone island 2 years ago and never followed up on. Now the description of it on the PET report is not a bone island but a lucent lesion with a sclerotic rim.
Andit didn’t light up 6 months ago but now it’s lighting up. So what is it?
I’ve really lost faith in the radiology department.
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I had a radiologist with my last MRI report it as the wrong side. It took me (and my BS) multiple phone calls and emails to get it corrected. I was livid. I would ask to not be charged for this MRI, nda not have your insurance charged, since it is a result of their error.
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KBee, thanks. I mentioned to them that I hope my insurance wasn't charged for this repeat MRI on the correct side because in the future they might deny me a test based on how much money my healthcare has already cost them.
As for the skin issue that was my initial reason for creating this thread, my oncologist wants to do a biopsy. My radiation oncologist didn't think a biopsy was needed and asked me to check with my surgeon. So I sent my surgeon a message with a picture of the area via my patient portal and now of course my surgeon is saying he doesn't know what it is and wants me to come in. Ugh.
As for the other stuff, I'll just cross post here what I just wrote on my other thread:
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.
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I'm also currently concerned about skin mets. I had 4 reddish spots surface near my mastectomy scar. That area started to feel a little itchy as they were forming, which drew my attention. I didn't think much of the first one, but now with 3 more, I'm very, very concerned. I see the doctor this week. I have a sense I'll be getting a CT scan and punch biopsy. I don't think I'd be comfortable not getting a biopsy. For those who did have skin mets, what did the doctors tell you as far as treatment, etc.
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Hi BT39, after punch biopsy of the nodules had to have surgical biopsy. Not enough cells to confirm HER. Hoping that the cancer had morphed to HER+. Unfortunately no. The surgeon effectively took all three nodules. It took a long time for the wound to heal (have had rads twice to the area). I now have new Mets on scar edge. I have been referred to specialist surgeon for Deip Flap to replace skin on chest wall. Yet to meet Specialist. Not sure about more surgery but I am told skin Mets can be difficult to manage. Good luck. Helen.0
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BT39, if they biopsy your skin and confirm that it's breast cancer, they usually do a PET and other scans first to look for any evidence of distant metastasis before deciding on further treatment. This is a good thing, because you don't want to go through extensive local treatments unnecessarily.
If everything looks good on the PET scan, treatment for a local/regional recurrence in the skin is usually some combination of surgery, chemo, radiation, and hormone medicine again. Some people also try Ibrance or a similar drug.
I'm sorry you're in this situation, I hope you have benign results.
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Pesky904, any updates?
Im 5 years out and just noticed a color change and sensitivity on one spot of each breast. I have an tele-health appointment but dont what to ask for as far as imaging....
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Last year when this all happened they said the redness was just the way the skin healed after the mastectomy.
As far as the mix up with the right hip/left hip lesion, they never figured out what the lesion in my left hip is and now I have bruising on the skin there and worsening pain and have a chest/abdomen/pelvic CT coming up on Friday.
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pesky904
I asked because I have some pain in two specific areas on each breast that are sensitive to touch, and painful. I really hate worrying but here I am...
I hope your imaging goes well, sending positive vibes and thoughts your way.
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I hear you, I hope you can be seen soon. I can’t speak to breast pain because I had a double mastectomy in late 2017 and still have virtno feeling in the entire area.
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Jinx27, Did you have your appointment? How'd it go
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