Bone Mets Thread
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hi SondraF!!! How are you my friend? Thanks for your support and love and laughter (and good fart joke humor!!)!! 💕💕💕
Was it Simone that mentioned they have ONJ now? Ugh!!😢 So sorry to hear that. Not the news you want to receive. Sounds like your current dentist is doing all the right things. Thank you for sharing your story with us. I am paranoid about ONJ and have ran to the dentist several times in a slight panic because I felt something odd.
Hugs to everyone
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Philly, I too have gotten some confusing scan results even after the PET! CT report two wks ago said new spots in liver - likely progression - not conclusive, recommend MRI. MRI report said "seen in 9/2018 report - likely hemangioma;" not conclusive, recommend PET for definitive answer. PET report said liver lit up with greatest SUV in four areas, but nothing shows on the accompanying CT. MO called last night after talking with radiologist who said something's lighting up, but there's no mass, so can't biopsy! MO wants to be proactive and restart me on Herceptin and add Tykerb just in case it's very early cancer cells that have not yet formed a mass assuming I'm still triple-positive. Then we'll rescan with PET in 6-8 wks., so we're not clear whether I've actually progressed or not. Big sigh.
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Bliss,
As I've posted before here, scans are sometimes inconclusive. I've had this situation with bone mets, not liver. Liver mets showed right up on an MRI with contrast. I just don't understand this -- how many radiologists have to read reports to get a definitive answer???
Good luck with your current plan. Hope it turns out to be nothing.
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Thanks, BevJen. Yes, my thoughts exactly...how many radiologists does it take. I have never run into such scan confusion since being dx over 4.5 yrs ago.
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it's just good old fashioned business...the more scans the more money...the American way...
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Just thought I would say Hi today. I read all your posts on here all the time. My next scans are in Feb- no date yet. And will include a bone scan with the routine CT scans -chest, abdomen. My last bone scan was Oct 2018 (wow, time flies). Showed uptake in spine, hips, and joints. But I have rheumatoid arthritis so.... I don't know how reliable the bone scan is for me, but my MO put in the order for one this time. We will see.
Hugs to all.
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Hey, Candy....it's always so good to see your name! Have you had other scans since the Oct '18 bone scan?
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Joyner- Hi. Yes. I have had CT's of chest, abdomen, and pelvis every 3 months throughout. Oct 2019 scan showed slight increase in liver met so we ordered a PET (only 2nd PET I have ever had). Did PET in Nov 2019 and it showed no uptake-- in liver met or in documented bone mets to the cervical and thoracic spine. The CT's always mention "sclerotic" lesions to the thoracic and lumbar spine. The PET I had on diagnosis in Sept 2017 stated "osseous" lesion in cervical spine. I wonder what they are really seeing with my arthritis condition. I even questioned my MO one time on IF I really have bone mets---she assured me that I am labeled bone metastasis and liver mets. (I had an 8 cm liver lesion and had a biopsy of the liver, so no question there) Seems each scan is so iffy on what the radiologist is really seeing. I am being treated locally (rural area) and not at a large cancer center, so I question if the rad is used to reading bone mets. I know my MO cannot read scans, because she said one time that she doesn't read the images but relies on the rad report. Scary. "Practicing" medicine as they say.
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Question for Joyner and group-
Concerning my above post, if I didn't have rheumatoid arthritis to confuse things, what would I expect this bone scan to look like if the meds are working on the cancer??? I mean, if the Ibrance/Letrozole combo is working on the cancer would the bone scan be blank, no uptake?? And if I see uptake does that mean the bone mets are active??----- I know the RA is confusing the picture.
Gosh, just so confusing with all the scans--- current CT's say "sclerotic" lesions, current PET says no uptake. We will see what bone scan says next month. Is the bone mets stable/gone?? And if the scans are all over the place for me with the RA, how do we see bone progression???
My mind just goes over and over it all.
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Candy,
Boy, if you get an answer to this one, I'm all ears. You may recall that I also have had confusing bone/PET/CT scans with respect to my bones -- some radiologists say sclerotic, some have no idea. I also was told arthritis when I had my first scans in years in 2018 -- they literally said: big toe, left foot; right hand; right hip; spine, etc. And now my MO is saying -- bones are difficult to read. Well, if the radiologists can't figure it out, how can we???
Good luck in getting an answer. I'd like one too.
Bev
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For what it's worth, I only get pet scans, and I only have bone mets. the reports sometimes note the sclerotic lesions on my spine, but if there's no uptake (no metabolic activity) I am considered NEAD. No uptake, no active disease. My MO says the sclerotic lesions are signs of healed or healing bone.
On my pre treatment scan, I had more than just spine lesions but those are never mentioned at all. Which I did question at one point, and really didn't get an answer
PS its PET/CT that I get, so the CT sees the lesions and the PET detects the metabolic activity. As I understand it.
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I agree with Olma61 "if there's no uptake (no metabolic activity)" then they are healing sclerotic lesions on a pet scan. So my MO never orders anything else - only PET scans every 3-4 months.
I also see a nuerosurgeon who orders Spine MRI every 4 to 6 months, to ensure there are no lesions near the nerve ends that would cause complications due to impingement.
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Olma and S3K5- My insurance will only approve PET if there is a change in the CT. I had PET in 2017, denied one in 2018 due to "stable" on CT's. I had slight increase of the liver met on the CT in Oct 2019, so insurance agreed to PET in Nov to check things out.
BevJen- So right. This is all so confusing for seeing the bone mets. And then add rheumatoid arthritis to the mix.
Will be interesting to see bone scan results. PET showed no uptake. What will bone scan say?
I will report back with results.
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I had my first Kadcyla today. Twitching eye is back. Must be Herceptin. I got the results of the MRI after the Pet/CT scan 3 weeks earlier. New mets in the pelvic area and other femur. More radiation ahead. Spinal mets are sclerotic so that’s improvement. So mixed reviews . My mo who I’ve had for 14 years is leaving. Trying not to become alarmed. She has been wonderful to me and she knows me so well. I know the new MO. She’s experienced and I’m sure just fine.
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Jaylea I am new to this group and I saw your post regarding radiation for fractured sternum. I was wondering was there cancer where the sternum fractured? I just found out I have a fracture on spine. And I was told they could fill it with cement. My dr didnt mention anything about radiation as an option to heal fracture.
Thanks
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Candy, Bone scans definitely pick up arthritis. I was shocked to see mine - especially my shoulders
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It is important to note that the finding of arthritis on imaging does not necessarily correlate with symptoms i.e. the person may be entirely asymptomatic. My scan indicates moderate arthritis in my neck and spine and various other areas such as my sternoclavicular joint but I have no symptoms there whatsoever.
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Hey BevJen and Candy, I might can share some light on scan confusion and radiologist readings. I have been and xray and CT tech fir 25 years. Both of you are like me and have ILC. It grows different. It is extremely difficult to detect. Ovarian cancer is the same.
Imagine that scans can detect a lesion that is a centimeter in size ( just fir example purpose). So if a lesion is the size of a small pea and active the radiologist will see it and the scan will light it up. Now ILC grows differently. Its indian-file like. Imagine a piece of lace. Hold it up and see the light come thru the holes. Until that “lace” grows and layers on top of itself to the point of making a solid area with no holes that is as big as a pea it cannot be detectected.
I have been stable withbone mets or so I thougjt until they picked up a narrowing in my colon in 1 area. However biopsies from the entire colon tested positive for ILC mets. I can stare at my scan all day long and I only see it in the one area but its in the whole thing. Hydro was noted in my kidney. Ive had a stent which failed and now have a Nephrostomy tube. I cant see cancer on my ureter but we know its there squeezing my ureter closed.
I feel angry like yall. I started Xeloda to try and battle it but how will I know if it works? It wont show up on scans till it becomes solid. My bloodwork and tumor markers have been normal this entire time.
I just wanted to share what I have learned in the last 8 years of having ILC. It sucks. And the radiologist are just as frustrated about it too. And like I said there are other cancers that do it too like ovarian.
Praying for newer technology that helps us.
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Good to see you again, Melanie. It's unfortunate that we meet again here. I can see you've been through a lot. I am also a rad tech in the cardiac cath lab and interventional radiology. I have mets to sternum, pelvis, 3 thoracic, and 2 lumbar vertebrae. I also have metastasis to multiple mediastinal lymph nodes. I still work full time and am on call every other weekend and weekday. Are you still working?
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Melmcbee and Dutchiris,
Mel, thanks for that very vivid explanation.
To both of you, since you are both rad techs --Is there a more ideal way of visualizing ILC, then? At one point, a well known doc at MDA told me that a PET scan was the best, but sometimes insurance will not cover those except in certain circumstances. Is there a more high-powered CT process that's better or some other modality?
My TMs do shift, so I have that, but it is so unnerving not to be able to see ILC on scans. It just seems to amazing to me, in this day and age where we have so much progress in technology, that there isn't another way to visualize these mets.
Thanks.
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Dutchiris, I worked up to 1-3-2020. I have multiple bone mets in spine pelvis and ribs. The kidneey thing took me out. I was fine until they put stent in. I worked 2 weeks in pain and then they decided that if I still had hydro the following week it would be replaced with a Nephrostomy tube. So Im out for a while and hope the chemo kills the cancer around my ureter and hoping it will open up so I can get rid of tube. Good to hear from you I hope you are doing well.
Bev Jen, none of my bone lesions show up on bone scan. Petscan and CT picks them up. Colon didn’t show up on petscan nor did my kidney stuff. I discussed it with several radiologists and they are as defeated as we are about it. As of right now symptoms are your friend for detection and biopsies are the only true way to know for sure. Oh as a side note someone said something about arthritis and if Im not mistaken I think it has a lower suv number on petscan then cancer does. It has different uptake values. Hopefully something new will be invented to detect ILC earlier before it layers up. Bles
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Meimcbee- Great explanation !!! I put ILC in my profile because my breast biopsy (from mastectomy) said "IDC with Lobular features" and my breast surgeon said "Lobular breast cancer". The "Lobular features" always seemed an odd way to say it and I have wondered about that before. I have never asked my current MO---MO at time of diagnosis moved from the area.
So in my case with the "Lobular features" and the rheumatoid arthritis, it will be hard to see bone mets worsening with the CT's or bone scans??
My MO looks at the liver met for growth to see if progression. No growth, or lite up area on PET, in regard to the liver then I am "stable". We do TM's, but MO says inaccurate for me because there was a steady increase over 4 months but no uptake on PET. Growth in bone though???? Or elsewhere????
All so confusing. And do the docs really know?
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Meimcbee- The "symptoms" get me though. I have constant pain in the spine and hips, but is that the RA? I was on RA meds before the cancer and we stopped them at diagnosis of the cancer. I have asked rheumy about restarting and he says No since most of those drugs lower the immune system also. And my White counts are low now from the Ibrance. So is the pain RA or cancer???????
And how do you know if cancer spreads to other areas if PET is clear? I kind of breathe a sigh of relief when PET is clear. But is it lurking elsewhere like in your case? How did you find yours in the colon--symptoms? Symptoms with the urinary issues?
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Candy my bone mets were discovered by CT. They were small too. Mri said it was definitely mets. Bone mets are easier to see on CT but none of them have showed up on bonescan. Which is crazy. Ct showed that my ascending colon was narrowed and a tumor couldnt be excluded so they did a colonoscopy. My gi doctor said oh its colotis breast cancer doesn’t go to colon. I said biopsy multiple areas of colon cause ILC does go to gi tract. He was shocked when he called to tell me it was in the whole colon. He said it all looked normal except that ascending area. The CT also showed hydro in left kidney but there wasnt a stone seen so urology here I come. I wasnt having pain there so it was a good catch by radiologist. So get the scans cause its better than nothing. B
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Wow meimcbee. So no bowel or urinary symptoms? Rad saw issues on scans and follow up done that found cancer. Well we do CT's of chest, abdomen, and pelvis every 3 months on me. And this bone scan is #2- Oct 2018 and now. So maybe if there is an issue the scans will see it then. One can only pray that nothing is missed.
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Jjzn, welcome. Yes, I have mets to sternum, one of my first met locations. I don't know if the crack was due to a growing met or just an overall weakening of the area. MO did send images to surgeon for review, but surgeon said rads were the better option. I also have spine mets and what's referred to as a wedge fracture on one of the thoracic mets. Since it doesn't cause any pain, I haven't done anything about it. But MO did say cement was an option for that area should it start to cause me pain. I don't know what the factors are that determine rads vs.surgery, but maybe someone else can chime in.
Melanie, agree with you, ILC in particular sucks. Sending up prayers that Xeloda knocks everything back to get that tube out. Hugs from JL
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Candy yes I will always continue the scans. Bl
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had my bone biopsy today. Now awaiting the results. Feel beat up tonight procedure wasn’t difficult. Guess it’s tiring spending time at the hos
Thoracic spine mets hurt so bad over the weekend that I called RO Monday. He put me on steroids. Between steroids and continuing daily rads to thoracic spine, pain is much better today.
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Jaylea
Thanks for the info. That is definately something I will check on.
Can someone explain what ILC means?
Thanks
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It stands for Invasive Lobular Cancer.
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