Bone Mets Thread
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kbl, they are supposed to do those immunochemistry, IHC, etc.. in the specimen they took during biopsy, that should be included on the pathology report. That’s one reason we did an open biopsy instead of needle biopsy.
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@Believe60 - it means that you aren't definitive on the initial test, so they need to run a more specific one to determine the HER2+ status. This happened to me, and it turned out I was Her2- (2+ on FISH) but not enough for HER2+ (which would have required 3+ on the FISH test)
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anx789,
I had liver biopsy done in Aug. My in-house surgical pathology result was reported about 1 day later and included: Estrogen and Progesterone status with % of positivity plus primary antibody. Also Her2 by Immunohistochemistry and primary antibody was reported.
My specimen was then sent out to a different lab (Strata) for genetic testing. That result took about 2 weeks. I've never been shown these results even though I've asked twice. However, I was told the primary mutation which then determined my MO's recommended next treatment.
Regarding getting a 2nd opinion: This is my recent experience. I wanted a second opinion because I knew my treatment would change based on the biopsy and genetic testing and I was very anxious. I applied to Mayo in Rochester. They were very professional every step of the way. After they collected all my records which took some time, I had a one hour tele-visit about 2 weeks later. I opted for the tele-visit rather than in-person. The MO was thorough and answered my questions. I was also given the option of a follow-up visit about one month later. Getting this second opinion took many phone calls, and long waits on the phone were common, but I feel it was well worth my effort. If you'd like to learn more about the steps I took please let me know via PM.
I also sought a second opinion from Dana-Farber's Second Opinion on-line program. You pay up front $2400 and the intermediary company "Included Health" gets involved to collect records, get consents, gather a history by phone interview, etc, etc. I ran into snags with Included Health initially. These problems eventually got ironed out but I decided to cancel my Dana-Farber request and got a refund after I learned that Stanford University also has an online Second Opinion program for much less cost. Included Health is the same intermediary for Stanford. I have not yet completed this second opinion.
I didn't start my new treatment for about 1 month after the biopsy. My MO accepted this delay so I could get a second opinion and think things through, but about one month was her deadline for a decision and action.
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anx, I got a second opinion pathology report from Memorial Sloan Kettering for my first diagnosis. (Largely because my official diagnosis was so much worse than the biopsy had indicated). I think I made one call to MSK and the rest of the process was online. Got the slides sent from myhospital pathology dept. directly to an address/person MSK gave me. I was fortunate my insurance paid for the second opinion. But everyone I talked to was very helpful.
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anx sorry to hear if your bad news
I was diagnosed with Mets in most of my bones but wasn’t having to much of a proble
But woke up one day I could not get out of bed at all I could not stand I could not even sit up all I could do was lie there I was terrified. Then they sent me for radiation now I am just fine walking around feeling pretty normal I highly recommend radiation it worked wonders for me
Good luck 🥰 hugs to you
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Thank you for all the reply and words of encouragement. I had an open bone biopsy, (they did an incision). Now I’m concern that they spread the cancer more by doing open biopsy. Is this a legitimate concern?0
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No, that's not how cancer spreads.0
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I just wanted to welcome the new people and I'm sorry you find yourselves here but have found this to be an informative group. I agree with Parakeetsrule, don't try to come up with every question you might want to ask. I think initially I tried to do that and found that I was so focused on my questions it distracted me. It would have been easier to just go in with an open mind and listen. Lists are great too. Even now I keep a running list of questions between oncologist appointments. My memory isn't what it used to be and so I show up ready to listen but having a few pressing questions highlighted in case they don't get brought up by my MO. It might also be helpful to take someone with you as a second pair of ears. Many medical centers are now loosening the restrictions for visitors and if available, sometimes two minds and memories are better than one, especially in the beginning.
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I also keep a running list! And taking someone with you is also a great idea. They will think of things you won't and remember things you forget.0
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emac:
Thank you for the welcome to new members and to everyone for their contributions. Because of a technical issue that took a long time to resolve, I have only just been able to join this community although I have been reading posts since May of this year when my diagnosis progressed from IIA to IV in the blink of an eye. You have been my lifeline through some very dark days and I am so grateful for your stories, knowledge and compassion. I am er+/pr-/Her2- with mets to right pelvis and clivus. (The diagnosis after my posts is wrong and I can't seem to fix it. I have a met in a skull bone, not my brain.) At the end of June I had 5 rounds of SBRT to the skull and pelvis and have been taking Kisqali 400 mg and fulvestrant injections.
Today I have a bone scan and CT scans, and tomorrow a skull MRI to determine if the treatments are working. Please wish me luck.
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Eleanora, best wishes that everything goes smoothly with your scans/MRI today and tomorrow. Let us know about the results and if you have further questions. As they say in Mel's lving room, we're in your pocket providing support and virtual hugs.
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Thanks so much Jan! Sitting in the waiting area for the IV contrast injection. Your words are very welcome.
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good luck Eleanora! I hope it all went smoothly today
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eleanora (I love your name, by the way), if you get a nuclear med and a CT scan the same day, ask the tech who gives you the nuc med injection to leave the IV line in. They'll tape it into place and then the CT techs don't have to stick you again. They'll remove it after they give you the contrast injection. There's no point in getting stuck twice, right? You're probably through with the CT scan by now, so the advice is probably too late, but I just wanted to share my experience. I hope you hear the results of your scan quickly.
(((hugs)))
Carol
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Carol that is a great tip. I had a brain MRI recently and have a horrible time with people finding my veins and any time I can get a two fer one I jump at that.
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Looking for some perspective from members on this thread. Last month I developed a rash on the left side of my stomach that itched like crazy but was not painful. The NP at my PCP said it looked like shingles. The unusual thing is I always heard shingles was painful, but the rash I had was not. I was given a cortisone shot and the rash is almost cleared up.
During that time, I got blood work done. My old onc never did the CA15-3 tumor marker test, but my new one does. The CA 15-3 test for bc was slightly elevated this time altho still very much in normal range. I am not sure what to make of it. I wonder if the shingles rash affected it, or if the shingles somehow showed up due to progression. That probably doesn't even make sense but that's where my mind goes. I even sort of question if I really had shingles since it presented a little differently than what others seem to get altho it's certainly possible it was just a mild case.
The rest of my blood work was very normal, nothing amiss at all. In general I feel fine altho it feels like I pulled a groin muscle (after a very active and fun week) and the NP said it might be an issue with my hip. She gave me a week of steroids to take for inflammation and said to get an xray if there was no improvement. I'm not in pain at all but I am babying my left leg. The issue makes me wonder if there's progression in the hip. Or just a pulled groin muscle?
My next scans are later this month and I kinda want to wait till then to see what's revealed then rather than get an xray now. I'm doing normal activity, housework, going to the store, but cut out anything strenuous for now.
What would you make of this? I've been on the oral chemo Xeloda for 2 1/2 years.
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Re: scans and iv’s. I get the bone scan and ct scan the same day, and after getting the iv placed and bone scan injection , the tech always leaves the iv in so I can go right to the ct scan. It’s a routine topic of conversation, where they’ll say, “I see you’re getting a ct scan also, and we can leave this iv in for that procedure.” The people doing the CT scans appreciate it because it’s one less procedure they have to do before the test, so it’s a time saver for them, and us as well. Then the CT tech removes the iv.
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Every time they couple the CT and bone scan so they only poke me once. It's very nice to only have to have the IV in for an hour tops!
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Divine, many of us wonder about all the new things that come up, myself included but I’ve found that the simplest answer really is usually true. The fact that the cortisone shot is clearing up the rash that it is a lucky case of painless shingles.
As for the muscle, I wouldn’t be concerned yet. It’s best to rest and medicate if needed. My muscle issue usually resolve in lass than a week, when they don’t, I’ve had my GP get a X-ray and once I had to go as far as physical therapy to finally fix it. Good luck.
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Devine- I have had groin pulls a few times- sometimes I can correlate it with some exercise I overdo. they can take awhile to heal if it is a groin pull, if just a minor strain can be resolved quickly.
my mind goes there with new symptoms also.
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I call him the panic parrot, the bird on my shoulder that squawks about every new ache.
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eleanora, wishing you good scans. I’m glad you were finally able to post to this thread so that we can support you.
mkestrel, I have a panic parrot too. Thanks for sharing that. With my autoimmune problems, I have lots of aches and pains and before I had my scans, it was hard not to think about having progression and needing to go on chemo again.
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divinemrsm, I don’t have enough experience with my bone mets to provide any advice, but I wanted to mention that I had a rash as well. Mine was mostly on my back and it looked like random scratch marks, almost like “flagellate erythema”, which can be a side effect of chemo. Once I also had a small patch on my upper thigh. I thought it might be shingles as well, but I didn’t have any blisters or open sores. My MO didn’t think it was chemo related, and suggested that it could have been a related to my Covid vaccine. I also had the Shingrix shots earlier this year, so I suppose that I might have had a reactionto some component that they used in making the vaccine. Although the vaccines don’t have any “live” virus, there’s still potential for a skin reaction for some people.
Since cortisone cream took care of the itching and burning, I wasn’t too worried, but it was concerning initially because my right breast had been itchy before I was diagnosed with BC and I had ignored it thinking that it was “just an itch”.
Even though the rash could have been from the Covid vaccine, all my doctors still recommended that I get my 5th shot and the flu vaccine.
Hope your itch resolves and doesn’t come back. ((Hugs))
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Good morning ladies. I come over and read once in awhile and chime in when I can be helpful. I was Dx with bone mets in 2020. I have been on Lexapro since then. The past six months my CA27-29 has been creeping up. When I was diagnosed my marker was 178, and it went down to 68, then 99, then 112 and now 138. My other labs are all normal. I have been active with little lasting pain. I had an appointment with my oncologist two days ago and she now wants to switch me to Faslodex and Ibrance. I asked her about other med options and she got quite defensive. I think she might have been having a bad day, but her entire attitude was so discouraging. I was planning to leave on vacation for a month and she seemed insistent I start the loading doses immediately. She stated things might spread elsewhere in that time. My latest scans actually show mostly blasticlesions in all of my long bones and spine. The only area of concern is my left iliac crest. I suspect I was dealing with this spread long before it was diagnosed. My question is, if a person wanted to get a second opinion, where would the best place be? I like to do things as naturally as possible, but I will take the treatments advised. Are there any oncologists that just treat breast cancer? Mine is a general oncologist. I would appreciate any advice or impressions you might have, Thanks, GiGi
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gigil - there are indeed breast-specific oncologists, and even MBC-specific oncologists, but they tend to be located at the big NCI centers. Are you near one (im assuming you are in the US though!)?
https://www.cancer.gov/research/infrastructure/can...
Some ladies also have their treatment planned by a main oncologist at one of those and then a local center will carry out the plan. You would get a much wider range of input into your treatment and better awareness of specific trials with a breast-specific oncologist. A general is fine up to a point... now you need a partner onc you can trust and discuss issues and concerns.
Some places like MSK, Dana Farber and MD Anderson have second opinion services where you send your info and they send back their thoughts. Your MOs plan, however, is pretty much standard first line for MBC with AI failure.
There is a fulvestrant thread around somewhere where ladies talk about things like loading doses and the like.
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Thank you, everyone, for your responses to my post. They are greatly appreciated. Illimae, your words were very calming to me. It's good advice to assume the simplest answer is usually true.
I had sent a photo of the rash to my onc and her nurse said it wasn't Xeloda related. And it is just about gone. My inner thigh is still causing some aches and my lower back is now, too, even tho I've been taking it easy. So not sure what's going on. Still want to give it a few more days to see if there's any improvement.
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Sondraf thank you so much for your response and the information you shared. I will be studying it carefully and hopefully gain some insight. I will definitely look into the second opinion option. I just don’t want to leave a stone unturned.
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divinemrsm, I also had a non-painful, non-itchy rash that was diagnosed as shingles. That was back when I was Stage 3 and undergoing chemo. I had been hospitalized due to low WBC and had a newborn plus older children at home. It was a stressful time, so not shocking I'd develop shingles, but again, it didn't feel like the painful Shingles I'd always heard of. I started the antiviral for shingles and it cleared without incident. Who knows if it was the real deal.
Perhaps related, I developed hive-like bumps when undergoing radiation. The theory is I'm allergic to the radiation tattoos. For my latest round of radiation, they gave me a different type of tattoo (a different dye, less noticeable). No hives.
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mocogram, cyathea, el tigre, sunshine99:
Thank you so much for the kind words and support. It was truly helpful. Sunshine, the scan tech did exactly what you suggested, so I only had one "stick" . Very much appreciated by my small veins.
Sorry to take so long to respond, but some results weren't available until yesterday afternoon and then there was the longer than usual meeting with the MO, as she had a fellow shadowing her and I was asked if I would mind speaking with the fellow first. I was assured that it would not shorten the time I had with the actual MO, so I was fine with it.
I think it was mostly good news, but will summarize here and would welcome your input.
CT scan (chest, abdomen, pelvis) was clear- no enlarged lymph nodes or organ lesions, but did note the pelvic lesion which has been radiated as well as 3 very small inactive sclerotic bone lesions on the right 7th rib, sternum and L5, which were described "not as progression, but as evidence of successful treatment". Opinion was "stable metastatic disease".
Bone scan did not show any tracer uptake in the 3 small areas, just confirmed my scan from 3 months ago, with increased tracer uptake still noted in the right pelvis and clivus (areas which received SBRT in June), as well as in the calvarium. Concerned that there is still increased uptake in the pelvis, clivus and calvarium, but have an appointment with the RO next Thursday and hope that he will tell me that's normal.
Head/Brain MRI was clear but for the clivus, and noted that there was no lesion or concerning marrow signals in the calvarium, despite the increased tracer uptake. MO thinks it may be an "artifact" although I'm worried that it's a shoe that's dropping really slowly.
There were a number of errors in the reports which were evident even to me. (Scariest one was the Brain MRI report which stated "Lesions detected" when there weren't!) I pointed them out to my MO and they have been corrected, but I am thinking I should get a second opinion, in case there were errors I couldn't possibly know since I don't review the scans. I don't know where to look for a second opinion but will check into MSK. Would love other suggestions.
I would also appreciate advice on how to handle this with my current providers. My RO, with whom I meet next week to discuss the SBRT areas, is the Director of Radiology for the Institute. I don't know whether I should discuss the scan reports with him. Any thoughts?
Sorry for posting the equivalent of a mini Dickens novel!
Eleanora
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gigil - You don’t say what treatment you are on now but if you were taking an AI, it is pretty common to try a SERD (Fulvestrant) as a next step. I was on Fulvestrant/Ibrance for 17 months so if you can verbalize why switching to Fulvestrant concerns you, myself or other ladies on this forum may be able to help. Hugs.
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