Bone Mets Thread
Comments
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awesome plan Wendy!
NKB please share as many photos as you can - we can all experience Paris through you.
Thinking of you Z as you work through so much with your therapies in Japan and the stuff you've had to heal with at your home medical practice.
Mom, how did the appointment go. I'm sure there is a good plan to come for Dani. Always thinking of you.
Hugs to all on this Sunday
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Hi all,
I was having some numbness in my left temple and cheek bone so they did an MRI to see if there were bone mets pushing on a cranial nerve. Turns out I have mets in my skull which we didn't know before. However they are not pressing on my nerve which is the good news. The shocker though was that the radiologist referred to my 3/2016 MRI and compared my skull mets to that MRI and said they had progressed significantly. But guess what? That MRI was for an unrelated issue in 2016 and the report never mentioned mets! I was not diagnosed as Stage IV until July 2017 after breaking a vertebrae. I am completely stunned that they could have started treatment nearly 18 months ago if the person reading the MRI had noted the mets. Should I do something about that? Is there anything actually that can be done? I'm fuming but not sure where to go from here....Any advice would be welcomed!
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Maire67 thanks very much. It's good to have had your feedback on how that post reads to you. Sorry I haven't thanked you before this. I haven't been on this thread for a week or so.
I'm miles behind with reading all the posts so I apologise for not keeping up but I don't think I can catch up now so I'll send you all hugs.
I don't think this will be relevant to many of us but I just thought I'd throw it into the mix. My bone mets are everywhere, including the sternum and I find that area really painful still, a year out from my BMX so I was concerned in case it meant progression (I've turned into a progression freakaholic!) but I asked my husband about it. He's very useful, being a gynaecologist, as although it's not his field, he is a surgeon so understands the healing process and he explained that it's still because the nerves were severed at operation and the nerve endings are very exposed in that area. I understand about nerve regeneration but I hadn't thought of the nerve endings being sensitive. One of those things that are obvious once they're explained.
Love to everyone
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LA894 .....wow! No wonder you're fuming and wondering what you can do about it. I've tried to think of a reason why the radiologist who read the MRI didn't report the skull mets and I can't think of one except that if your MRI referral didn't mention the purpose of the MRI was to look for bone mets it was thought of as incidental or perhaps the radiologist didn't have a previous MRI to compare with and assumed the skull mets were already known. Neither explanation is anywhere near good enough.
I can offer you comfort in the way of your treatment, though, as I have bone mets from my femur to my skull, including many skull mets, my entire neck and shoulders, sternum, more than one in every rib, my entire spine and my hips and my treatment is Femara/Letrozole and Ibrance so I doubt very much whether your treatment needed to be different. That is, if the treatment your profile shows currently is the treatment you've been on since that MRI.
I hope that helps. I'm just sort of flying a kite because I don't know when you started on your current treatment but rest assured that it is the treatment of choice for bone mets with a diagnosis of ER+ PR+ HER2-
Hugs.......
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LA894-I don’t have any suggestions about what to do about this negligence, but I don’t think that just because he wasn’t looking for skull mets is an excuse. I had a ct for a sinus infection (way after mbc dx) and that radiologist saw skull mets. He included it in his report, which went to my pcp. PCP called me, very concerned. I told him I already knew.
I don’t have a solution, but you and your MO could discuss it.
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LA894,
I'd be pissed as hell! Come on, skull mets that were obviously there/?
As I've written b4, scans are only as good as the people who INTERPRET them. What if you had a mammo, and the dunce DID NOT point out that you had a 2 cm growth in your breast? And then you go back a year and a half later, and instead of being St I or II, it's St III or worse, metastasized?
You definitely need to bring this to someone's attention. The Tx would still be the same, but you would have gotten on top of it much faster.
I am disgusted along with you,
L
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LA894 ~ Similar to Kaption's experience, I have a friend whose MRI divulged a completely unknown aneurysm. I forget why he originally presented to the ER, but he was initially cleared and sent home, so it wasn't noticed on first look, which probably isn't uncommon if they are looking for something specific in a busy ER setting. But he was called a day or two later when a second radiologist reviewing his imaging spotted it. So yes, it does sound like if they were being thorough in your case, someone should have noticed it.
I recently read that in the UK they use a much simpler standard than we do to determine negligence, which has helped me to think about questions like yours. A review panel (vs. a jury) basically asks, would the majority of physicians in the same situation have done the same thing? So I guess you could show the imaging to another radiologist -- give him or her the exact same info' the original radiologist was given, and see what they would have reported. If the bone mets is obvious and called out, you may have a case. OTOH, if you were to pursue legal action, unless the mistake is so glaring, you may have a very hard time getting medical care in your area in the future, as many docs simply won't touch a patient with a hx of a legal action.
Anyway, I'm really sorry that happened to you, but glad you've found us now. Deanna
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Thank you Lita, Kaption, Deanna and Leapfrog! I find that I am rather numb since my diagnosis - not really feeling anything but going through all the motions as my treatment decisions are made. People marvel at my positive outlook but I think I am mostly in denial. I think I will start with the advice given here. Take comfort in that my treatment is consistent with what would have started earlier, talk to my medical oncologist about how this could happen, and embrace the fact that maybe this anger is a glimmer of my emotional self coming back to life. You ladies are awesome and really make a difference in the lives of those of us who lurk but perhaps don't post that much. Hugs to you all. **As a side note today is my youngest son's 18th birthday. So no more "children" in my house. Feeling the effects of that one too!
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After I get my scan I drop by a local hospital with super kind radiologist and ask him to bring my scans up on the monitor and show me the findings. One way to get a second opinion on the scan report... if you can find a guy like this. Radiologists don't get to talk to patients generally and I find them pretty chatty.
>Z<
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Oh boy is this exciting!
Researchers Develop New Strategy to Target Breast Cancer Metastasis in Bones
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Oh boy is this exciting!
Researchers Develop New Strategy to Target Breast Cancer Metastasis in Bones
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Jen, wow! Possibly a change to chemo as we know it if this can move forward and proves to work as they think it will.
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Wow !! Thanks Jen , when I see things like this I print it out and show it to my doc . This is awesome news !!!!!
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Hi everyone. Has anyone had a mixed response on their CT scans for their Bone Mets? My latest scan report indicates stable sclerotic mets ,but two lytic lesions have increased. Wondering if this means a change in chemo for me. Liver lesions were slightly reduced.
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Jen, thanks for sharing! VERY interesting news!
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Sounds like a very exciting breakthrough, Jen! Let's hope and pray it can be turned into an actual tx and not take 10 years to do so.
Andkeepgoing, I would question if possibly what is being called an increase in the lytic lesions is actually healing. The two (progression and healing) can appear very similar on a scan, from what I have experienced. I've also been told that mixed results -- if that's truly what you have (healing in some areas, worsening in others) may just need more time on a med -- especially if you've only been on your current regimen a short time, and in the absence of increasing TMs or pain. If absolutely determined to be progression, then a biopsy to figure out if it's different from the other areas in terms of receptors may be advisable.
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Has anyone ever been told that taking xgeva will alter the way your pet scan is read? My oncologist said that the pet would show progression, but only because of the xgeva shot. My CNS at work said this should not be the case and urges me to get a second opinion. Please advise!!
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LA894....you're very welcome. A word about denial....don't knock it. It's your mind's way of protecting you while you slowly process the news and it keeps you positive and in a relatively good place until you're ready to look it in the face. My diagnosis was exactly one year ago and, looking back, I was probably in and out of a state of denial until about three or four months ago. By that time, I'd come to terms with my disease and my treatment and what it means for me. Don't feel you have to force yourself to face up to anything emotionally till you're good and ready. Minds have a wonderful way of looking after us at times like this. When you receive a diagnosis like this, you go through the usual grieving process in a way.....shock, disbelief, denial, anger and eventually acceptance, not necessarily in that order and sometimes in a chaotic way. You might be feeling both angry and disbelieving at the same time or you might think you've finished with anger and think you've accepted what's happened, only to find you're angry again another day. Be kind to yourself, give yourself time and space and love.....lots and lots of love. Sending hugs and more love
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Hi girls I haven't been on here for a long time but I have just spent the last hour reading some of your posts . Very interesting news on that new chemo treatment for bone mets I really feel like stage IV Breast cancer is finally being heard in the scientific world and media. With Olivia Newton John getting a stage IV bone progression here in Aust it has been all over the news and magazines and women are starting to realise they you are never really 'cured' of BC even after 22 years . I had my tumour marker results given today and they have gone up to 55 from 33 from the last 11 months since diagnosis so I hope it's just a bit of an infection that I was getting. Has any one else had that happen?
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leapfrog,
You and I have a very similar dx. I am currently NED on tamoxifen. Crazy I know,but it is true. My MO want to take my file to the tumor board and discuss surgery. I don’t want a dmx, but will do it,if they believe that it will give me more progression free survival. This really is a never ending rollercoaster ride 🎢.
I hope everyone has a great painfree,meltdown free,scanxiety free Thursday!
Love to all. Chelle.
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Thanks dlb, I forgot about the potential healing process. It’s been about 3 1/2 years since there has been any increase on my bones, so have conveniently forgotten about that aspect. I will just have to be patient until Monday to see what my onc wants to do. Hopefully, just put me back on an every 4-week Zometa schedule instead of every 3 months.
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Hi Delvzy, you will probably receive a number of responses from the members on this board saying their tumour markers have gone up and down, and jump all around. I don’t know what treatment you are on; however, some of the hormonals and especially the chemos can cause tumour markers to increase at odd times. For me, tumour markers means the LFTs [ALP, AST, ALT] and LDH. Plus some of the CBC numbers. We tried the CEA/CA numbers when I was rediagnosed; however, they showed as being in the normal range. So, of no use for me. The reason I am mentioning this, is that some of my chemos have caused my LFTs to increase, yet the chemo was still working. The chemo was stressing my liver. Then the LFTs would decrease at the next round of tests. Also, I read some reports online that strenuous or prolonged exercise can increase LFT numbers. Same with the LDH numbers, as it measures tissue damage resulting from injuries/disease/ infections. I stubbed my toe really hard once (walked into a 10 pound dumbbell which I forgot was on the floor, actually thought I had broken my toe, as I heard a crack or a pop, but thankfully did not) and sure enough, my LD number three days later was about 50 points higher than the previous test.
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andkeepgoing thanks so much for your response . I am on Femara/letrozole only some of the other treatments are just finishing trial period her in Aust which is frustrating and annoying . Sometimes I wonder if I could go to America or Canada for some of the latest treatments.
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Jen i keep reading that link.
Guys I'm posting the same in the liver thread so be warned! sorry
Every day I think, we think can't get much worse, and then it does.
The Intervention Radiologist seemed smart (he does not look it, don't judge by the cover..) and caring. He was extremely concerned, he said and showed it to me on the screen, D did not want to be in the room, he showed how the tumors took 50% of the liver, pretty much the whole right lobe, the left is not so bad comparingly. First to the bottom line, he called the Hospital and cancelled some of the ppl he had on schedule for Monday, and told the assistant THIS is urgent and get her in. He said there is still a very small window, if it gets worse no one is gonna wanna do it.
The procedure: Let's say, Monday, it would be something like an angiogram, to make sure that no physical aberration would interrupt the process, and that there is no pathway to the lungs ( so this radiation does not get into the lungs)etc... if she is approved, then they would order this treatment from Syrtex in Australia, it is specially dosaged (my word) to the person, and it is time sensitive, in other words, it should be arriving about a week after the order, and they will call exactly what time she has to be there, then they insert this high radiation thingy, he explained but i can't relate back, and she is "suppose" to go home the same day. BUT she cannot be near the children for at least 3 days.
So of course she is very upset about that, her life is really being turned upside down. My SIL said he will tell the kids they are going away for 3 days and I'd move in, yes, but they are middle of the school year, they won't like it, they will smell a rat.
I asked IR do we have an option? He said no. Life would be much shorter. This monster needs to be stopped. The liver metabolized the chemo, and if she will need chemo of some kind, if it won't do the job there is no need for the chemo.
Going back to the AM, long long visit with new RO, she could not believe the amount of mets. Damaging ones at that. The orbital area, is in danger of causing visual loss it's that bad, nerves on the lateral is causing numbness, her shoulders, other lesions that are pushing into the skin on the chest, and much to her concern the thoracic she is very scared what she will find when she sees the MRI specific to the spinal area that she is ordering, she is afraid she will see dangerous compression. NOW, this girl was being cared for by top docs in top Hospital. I have an email i just reviewed from June, RO telling me she reviewed THE REPORTS, and it's stable. No it was not stable, and she did not bother looking at the images herself, i think, because this is a train wreck it did not happen overnight. I can't even, because i'll explode. How could they? New RO says you can't just treat little pieces always, you gotta look at the big picture. Conservative is not always good. And then I ask you, they know the situation, just do it damn it, what are they protecting her for 20yrs down the road, she told them this hurts this hurts, and they kept saying systemic systemic, of course you can't do every bone, BUT her pictures are horrible.
So new RO says oh this urgent, so i called her in the PM, and i told her you told us this is urgent, but IR is saying the liver is urgent. So she said liver is MORE urgent. She'd give her a break of one day after the Y90 and then she'd start her on extensive daily Rads for up to 3 weeks. Mind you, IR told me that after Y90 there will be great fatigue. I asked him what kind of fatigue, he showed me like the sleeping kind! So hmmm how are we gonna drag her to Rads....I don't know.
Grannax does any of this ring a bell for you? Did you go through the same steps? Was it very tiring after. I wish we could all hear from more ppl that went through it.
I asked how many he has done? He said about 150 p/year. The truth is from what he says, we don't have the luxury of waiting for appointments to get other ppl and delay this. And the other Rads are being held back because of this.
She is taking the Neratinib it's causing abdominal pain, i hope she could tolerate it.
Yes, my friends, honestly it's unthinkable.0 -
I'm so sorry Momallthetime poor Dani this breaks my heart that she can't catch a break. I think sometimes doctors don't pay as close attention as they should maybe because we are stage four idk. I confronted my onc about this and she told me no you are the top of my concern because you are stage four I call a big fat bullshit on that one. She has on occasion told me on the phone my liver was clean then next appointment it's oops not wtf. Sad that it's not just going through this awful disease we have to learn about cancer , medication, scans etc. To be our best advocates, it's good Dani has you by her side remember to take care of yourself as well. I sure hope things get better with this treatment😘
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Mom, I cannot find any words right now. I know the pain and worry you are feeling. It does sound like the IR knows the best course to take right now. It does make sense to give the liver treatment top priority. Concentrate on that and try to put aside the anger you have for the doctors who have let you and Dani down in so many ways.Your strength and concentration will be better spent in helping Dani through the procedures she has coming up for her liver. I am glad that Dani has you by her side through all this. I am lifting you both up in prayer. I join Wendy in reminding you to take care of yourself. I know this is overwhelming for you.
Hugs from, Lynne
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Mom- unthinkable is right. I am hoping for a miracle for Dani. I’m glad you will be with the children during this.
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Mom- You and Dani are always in my thoughts and prayers. Sounds like the radiologist is determined to make this work! Finally someone with some compassion and 🏀 ⚽️.
Hoping Dani feels well through the tx. She is such a trooper!
Bless you Mom,you are an amazing woman and mother! And you deserve a huge blessing!
Love Chelle
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Thanks dlb, I had the same question as Keepgoing’s, and you response is helpful.
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Mom - been trying to keep up with everyone. Sadly just too much going on with everyone it is hard to think straight anymore. So I apologize for not chining in sooner.
You are an amazing mother and your daughter Dani is an incredible fighter. How she endures all of this in her body is mind blowing.
I've been in a particulary foul mood these days so I have been careful about posting. But my sentiment lately is "THIS IS SO FUCKING UNFAIR" - "WHERE'S THE CURE????"" No one deserves this.
Best I lay low as I tend to curse.
Everyone - I think of you all everyday. I worry about us all and try to keep my head up and my mind focused. There will be a cure, there will be a cure. There must be a cure.
(((((HUGS))))) to all!
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