Bone Mets Thread
Comments
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Deanna,
I agree about continuing to search for an answer to my walking issue, particularly since this is not the expertise of either of the docs I have seen so far. (The orth doc I saw just does knees, not backs.)
Regarding scans, I asked my MO which kind of scan I had would be getting to determine progression going forward. She deferred to the radiologists who read the scans and they told her MRI would be best for me. From my results during initial testing it does seem that bone scan, CT, and MRI all can show different areas/amounts of activity, so it makes sense to stick with one type when looking for changes as you said. I just wonder if any type of scan is generally superior in showing bone mets and progression.
As to the cost, I'm sure it is different in different locations. At the small town non-profit hospital where I had mine done, the bone scan was $1300, the CTs around $2000, and the MRIs were about $4000 for each area. That was just the scan, not the radiology report or various other charges. (I apparently have too much time on my hands today, cuz I actually pulled my EOBs and looked this up!)
As far as the scans being subjective, that scares the crap out of me. This is the same radiology group that was reading my mammograms every 6 months but didn't see a 1.5cm tumor. But maybe I am being too hard on them?
Hope I am not beating the scan subject to death, but they do seem to be so important to us. At least in their capacity to keep us up nights!
Regards,
Jo
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Thank you all for your informative posts! I'm learning a lot. Still on the fence about who/when to tell. As many of you pointed out, it permamently alters the way people view/speak and act around you. All immediate family knows now and two bosses at work know. I know my m-I-l is anxious to tell her side of the family, aunts and cousins and my mother is anxious to tell her close friends (a lot).
With our close friends, since my kids are so young still (10&14), once we tell some of the parents at the school, it will get around to my casual friends, those I don't mind knowing and those I'd rather not know. But so many of those moms really stepped up and helped us with meals last time, including a number I only had a casual relationship with.
I start chemo on Tuesday and can't wait. Will try to keep up better with all the posts, I always found that hard the first time around.
Does anyone work? Told work? I have a demanding full-time job and am the sole earner.
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Reading Mama-I work full time and commute an hour each way. I did this through 12 Taxol and 4 AC. I would get a morning treatment and then go in and work five hours in the afternoon. I missed seven work days with my double mx. I am getting ready to have 28 rounds of radiation now and I am hoping to miss very little work. I have unlimited sick time but I take pride in roughing it out. At times it wasn't easy but doing normal things has helped me cope. Everyone I work with has been told. I work with 37 fantastic people. I also had a side job as a bartender that I stepped back from but I considering taking back my one night after I am finished with the radiation-there's a fantastic dozen or so co workers there that I miss terribly. Just stopping in to say hi isn't the same as getting through a crazy busy night with them. I hope your chemo goes well-I brought my laptop and watched all the stuff on Netflix that my husband hates when I was going.
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readingmama,
I have worked full time save for a three month medical leave. When I came back to work, most people assumed that I was done with tx. I was still getting monthly Aredia then, and I still have my port flushed monthly. No one has ever questioned why I do this but if they asked, I'd tell them. I recently had my 3year anniversary of being stage IV (I was stage IIB for 6 weeks) and posted it on FB including specifically saying I was stage IV. Many of my work colleagues are FB friends and they congratulated me but didn't bat an eye lash.
There are two parents at my school, I teach 1st grade, who have had bc themselves and they know I'm stage IV, but there doesn't seem to be any gossip, pity or people treating me differently. I'm glad it's out there now and glad I haven't suffered any negative repercussions from it. I love my job and I get so much energy and satisfaction from it that I intend work as long as I physically able to.
Jobur,
I view scans, not so much as subjective, but open to the interpretation of the radiologist. Yes, they are all,trained to look for certain things, interpreting imaging is an art too. It is not an exact science. I have excepted the fact that my tx team tries their best, but nothing is foolproof or guaranteed. I believe that their expertise benefits me the vast majority of the time.
Thinking of you all,
Caryn
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Deanna,
I am one of those whose radiologists could not read metastatic breast cancer- yep 8 weeks before I alerted the doctor, my mammogram said all clear. Subjective- no I don't think that...I think that radiologists read by volume for their pay and they are encouraged to keep costs low. Somewhere in that we the patients - some of us get lost... In Nashville, if you go for an MRI and pay for it out of your pocket it is about $500-$600. When it is given to insurance it runs up in the thousands and then is beaten down. Surely there is a better plan for our medical system. Carolyn from Music City
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Carolyn,
I belong to an all inclusive HMO (think of it as the Club Med of medicine, minus the tropical setting). All employees, including the docs, are salaried, so how many surgeries they do, images they read or chemo they prescribe, doesn't effect their pay. I had a mammo 13 months before my dx and it was deemed all clear. Yet there I was, stage IV, 13 months later. Could another radiologist have seen something the year before? Maybe, but I'll never know and I don't dwell on it. I accept that medicine is not perfect.
Caryn
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Hi ChrissyB, GG27 and Rosman,
I just read your posts only now and thank you so much. I forgot to put this thread on as a favourite, and then I forgot I had even posted the question here about the flare or increasing pain I was having. I am just wondering now, a few days later as the pain continues to get worse and I am starting to limp if the bone might not break. It is a fairly delicate one in the pelvis, one that takes a lot of weight when you sit. The orthopedist was alarmed by the location of the met but he had not seen the CAT scan, just the MRI, but he said to see the radiotherapist right away. By the time I saw him the CAT results were in and he said the bone was too stable to require radiation yet but to have a scan if the pain became an issue. I have stress fractures in my feet, although they ruled out osteoporosis as a possible cause. I was thinking of raising this question at the ER but I am going to wait and call my onc's office Monday. I will probably stay in bed more or less until I get an answer on this one. My onc had told me to wait if I could for a few more weeks, so that the scan could be more conclusive about whether this is a flare or a progression. I don't know if he considered whether the bone wouldn't fracture. The orthopedist said a fracture there would be a real mess.
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Hi Eve, sorry I didn't see your post before I submitted this last one. I remember the shock when I learned I was stage !V, although it was well after treatment for stage IIb as my initial diagnosis. You will find wonderful support here. What I want to tell you is that I don't believe that the doctor is assuming you will live only a short time. You will get chemo when it is clearly, needed and the hormonal therapies they have today really can extend our lives longer than you might imagine right now. I had my ovaries out in 2008 and received arimidex for a year until I was misdiagnosed with a bone met in the vertebra and got Faslodex and Zometa for three years until a real bone met in the pelvis appeared in 2012. So they switched hormonals and when a second bone met appeared this Spring I was switched again. But these hormonal therapies are really quite helpful in delaying progressions and our hope is always that new therapies are going to be even more effective. I have had excellent quality or life with these low side effects. Others on the forum may have different opinions, and of course you can always ask for a second opinion from a second onc. Sending Hugs,
Lisa
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Deanna,
Thank you for the information, I will definitely look up the Strontium thread. Also, I'm concerned that your onc said no supplement while on Xgeva. I'm on Xgeva, and my onc didn't say that, but my confidence in her is shaken for other reasons too.
Kim
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It's been about a month since radiation, and wonder why I feel so off. I feel weak, shaky, and faint. I feel like I have a low grade flu all the time. I just want to feel normal I wonder if this is normal? Since I got my esophagus radiated along with back spine I wasn't able to eat or drink for a month. I am extremely anemic, very low iron, potassium, low white blood, and more. This might be the reason. I just begun to eat, and drink a little over a week ago...start with small bites. I had the gamma knife done 9-11-14, which was also the last day of radiation. How long did it take you after radiation to bones to be back to feeling normal?0 -
Hindsfeet,
Good to hear from you! I only had rads to my femur, so other than diarrhea, I had no se's. I hope this is the beginning of feeling better. Once you feel like eating more, I think you'll perk up.
Caryn
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Kim, without rereading my earlier post... I didn't mean that my onc said no supplements. She just doesn't feel that a cal-mag+minerals regimen, no matter how advanced or leading edge, can give us the same benefits as Xgeva when it comes to strengthening our bones and preventing future fractures. I will continue to take all of my supplements, and I take a lot of them. Deanna
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Welcome back Hindsfeet! Sorry you still feel so crappy. Anemia will wipe you out, as will radiation. When I had Stage I and radiation treatment, the fatigue stopped almost instantly. With Stage IV radiation, the fatigue lasted for several months. I also also anemic when I was diagnosed, but perked up pretty quickly with iron supplements. Then I had radiation and was tired tired tired. Probably a combo of radiation and anemia. And if you weren't able to eat, that won't help either. The radiation fatigue does pass, it just takes a while. Hang in there - it will get better!
Reading - I work full time and have about a 75 minute commute each way. That said, I try to work from home and sleep in once a week. And, I have only had surgery, radiation, and Femara, no chemo. As to who to tell - perhaps your mother in law could tell one friend so she has some support from a friend? I don't know the family dynamics (obviously), but maybe if she could tell her best friend, it would give her someone to discuss her fears with which may help her a bit.
Thea - I'd be staying in bed or going to the ER. Sounds painful and scary. Hope it's something easy to fix. Let us know how you go.
Jo - good luck with sorting the walking thing out!
Hugs to all,
Terre0 -
Hi KiwiCatMom
Yes, painful and scary. I am spending the day in bed with a heating pad. This sure is an active thread!
I emailed my husband and he and a friend (both doctors) agree I need a sooner scan. The only way to fix this is to radiate it so the bone rebuilds itself, much more successful before breaking it than after. I am not going to the ER mostly because my kids are home and I have chosen so far not to tell them yet that I am stage IV, given how uneventful bone mets are supposed to be. They are used to me hanging out in bed and I have explained that I hurt my hip and will be staying in bed today. I will keep you all posted.
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Hi to all. I am new to this board and recently diagnosed with Stage IV metastatic breast cancer to sternum, L5 and rib. My initial diagnosis was in May of 2012, after lumpectomy was told margins were not clear and soon after was discovered by MRI to have DCIS scattered in all 4 quadrants of left breast. Original pathology was stage 1, low grade, no node involvement. Due to the large amount of DCIS a mastectomy was recommended. I had a left breast mastectomy in August of 2012, followed by a prophylactic right breast mastectomy in February of 2013. I had immediate reconstruction with tissue expanders on both. In June of 2013 had my ovaries removed due to a suspicious mass on my left ovary which proved to be benign. I thought I had done all the right things and was also on Tamoxifen immediately after my first mastectomy. No chemo or radiation was recommended. In May of 2014 a back ache sent me to the doctor who scanned me fearing it could be a blood clot, however this is where the first met showed in my sternum. My onco was unsure of it at the time, saying to take a wait and see approach as it could have been trauma from my surgery. I was hopeful it was not a met, but 3 months later the bone scan confirmed my worst fear with an additional 2 mets. I have been switched to Femara and monthly infusions of pamidronate. I also have multiple sclerosis so I am facing many challenges. Reading all of your posts gives me courage and strength to face this! The hardest thing for me right now is not knowing if my treatment is working. My biggest fear is chemo because of my multiple sclerosis.
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Welcome, Annie! I'm so sorry you have reason to be here, but I'm glad you've found us.
I am absolutely shocked at your story, and my heart goes out to you for what you're dealing with on top of MS.
I don't know where you live or where you're being treated, but I can't help but hope you're at a major comprehensive cancer center that will have experience treating Stage IV bc with your pre-existing MS. That can't be a common situation (although I know it does happen, and I've occasionally seen threads here about it), so I would personally want docs who have had some firsthand experience dealing with women with your hx.
Has your back pain improved since you've been on Femara? I would think that would be one way to gauge if it's working, although it may be a bit too soon for that. I think the A/I I'm on took about 3 mos. to really kick in to the point that I noticed significant pain relief and a drop in my CA27-29 (tumor markers). (((Hugs))) Deanna
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AnnieO, I hope femara works well for you for a very long time!
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Dear Annieoakley, welcome to BCO but sorry to hear of your story.
We hope your chemo treatment helps your bones, but doesn't create problems with your MS.
All our best
The Mods
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Hi AnnieOakley - welcome to the thread. Sorry you're here, but glad you found us. What a challenge - MS and Stage IV. Deanna said it quite well - comprehensive health care team to address both would be quite good. Hope the Femara kicks in for you soon and has the cancer on the run.
Hugs to all,
Terre0 -
So nice to hear from all of you and thank you for your weĺl wishes! Deanna in answer to your post I live near Niagara Falls, Ontario and I am being treated at a major cancer centre that's a little over an hour away from my home. I have been on Femara for just a month now and haven't noticed a significant difference in my pain, although I feel less tired than I have in previous months. With my MS it's so hard to judge my pain because I have pain from it as well. Too many unwelcome visitors in this body of mine! When the pain first started in my back in May I truly thought I was having an MS relapse, it didn't even occur to me that I might have bone mets. After all my cancer was stage 1, low grade, I had a double mastectomy and had my ovaries removed. And with taking tamoxifen I thought I wouldn't have to worry. Well apparently tamoxifen failed me, that's how my onc put it to me. So here I am in disbelief that after everything I've done to prevent this it happened anyway. I'm so happy to have found you aĺl to talk to. Dunesleeper so glad to hear the hormone blockers are working so well for you and that they will continue to for a very long time! It's good to know you have far less pain. I pray it will do the same for me.
MusicLover I noticed you are taking Femara as well and wondered how it is working for you?
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Annie - I was Stage I with a very low oncotype score and "did everything right" too...only to end up with bone mets. It is a shock and then some. I've been on Femara since Feb 2013 and have "no evidence of active mets" in my bones. Several people have been stable for several years on Femara. Pretty powerful for such a little pill.
Dune - glad you're feeling better!
Hugs to all,
Terre
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Hi Terre! I as well had a very low oncotype score, they said a 9% chance of recurrence. Yes it is shocking for sure. I dont know why I thought if it came back it most likely would have been in my breast tissue, or lymph nodes. Every 6 month check up my oncolgist would feel for lumps between my breast tissue and implants and a very thorough exam of my lymph nodes. In March of this year he had said you're doing awesome, you dont have to come back for a year. Two months later it all changed. I am so glad to hear Femara has worked so well for you! That gives me great hope
. Where were your mets when first diagnosed?0 -
Hi Ladies! One more week of rads to the right femur to go. I just wrapped up 2 weeks of Taxol and Xeloda and spent a week going from bed to bathroom to bed. Ugh. It was no fun. Doc said I need to see an orthopedic surgeon about femur when radiation is done. Nurse wants me to get a port. I can feel the cancer on my back and ribs, so off to pain specialist I go....aaaarrrgggh! No rest for the weary.
@ Deanna, I take a ton of supplements too! But not last week. I see a nutritionist and she bases my program on hair analysis. I guess I'll be losing that soon too. Cue: mumble grumble song.
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Good to hear from you SkyLotus. If anyone has the right to grumble, it's you! Don't know where you live, but when I was in the US, I lived in Las Vegas. I was threatened with chemo and decided that I wanted to go to Serge's House of Showgirl Hair (http://www.sergeswigs.com/) and get absolutely slutty hair. That would be sexy, long, full, well behaved hair. The hair that the girls who get all the guys have. The opposite of what I have. Not for everyone, but not a bad idea in my opinion.
Don't know if you're getting rads to your back and ribs. I did and it helped. Also had a couple of zaps to my femur after the put the pin in and I had the stitches out from that. It helped with the pain, but so did the pin after everything healed up.
Hope things get better/easier for you soon!
Hugs,
Terre0 -
Hello everyone
I'm on vacation in Punta Cana for a week. Of course mets didnt get the memo on that :- ). I had my first pamidronate infusion last week and now the vein has hardened and the skin turned red. No bruising. The redness/hardening is expanding along the vein's path. It's sore but doesn't ache. Anyone had that happen? Thanks for any advice.
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Hi Tracey,
Leave to MBC to put a damper on your holiday! Please see a doctor ASAP. I am no medical expert, but if the redness/hardening is progressing, that's a concern. I'm sure your hotel can refer you to someone or even to a hospital ER. I know this is a bummer on vacation but please don't wait.
Caryn
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Thanks, Caryn.
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Terre. sorry to hear you now are stage iv. The problem with early stage cancer is you might not be early stage. I was told after my mastectomy that I was stage 1a and highly unlikely after the mastectomy to have a recurrence. They found no node involvement, or vascular. Apparently there was seeding that went under the implant into nodes around the sternum that they didn't see which would have made me (if they knew) stage 3 after last diagnosis. I learned too late and almost 3 years later I had mets to my spine, bones, liver, lungs and brain. If they found it earlier I would have found out before it went to organs. It is water under the bridge, and now it is fighting for my life.0 -
Reading Mama, I work full-time and because I switched to staff just a few months ago, I had limited sick leave. People kept saying "I can't believe you're back at work already" when I came back a couple of weeks after my surgery...as if I had much choice! LOL! While my husband is working, neither of us makes enough to cover the bills individually, let alone with all the additional costs of supplements and such! I'm just really hoping the orthopedic surgeon doesn't decide that my spine needs to be stabilized, or if he/she does, then I hope they'll be open to the concept of day-surgery vertebroplasty!
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