Bone Mets Thread
Comments
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I was told the fasting is done to prevent aspirating food in the event you have a vomiting reaction from the contrast injection since you're lying on your back.
And yes, I had slightly different prep for two recent CTs. The most recent @ UCLA included two bottles of absolutely disgusting chalky fruity liquid to drink within the hour prior to the procedure; then an injected contrast during the procedure.
There's also a new thread here regarding a report on MBC that includes something about rethinking scanning frequency: https://community.breastcancer.org/forum/8/topic/...
"Sometimes imaging tests are done too frequently," he said. Suggesting that CT scans and other imaging tests can be done less frequently could save money yet still provide effective screening, Dr. Winer explained. Deanna
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Deanna,
With respect to the scanning frequency issue, my MO and I decided we didn't want to do 3 month scans as per protocol. We were focused on minimizing exposure to radiation, ect. I only do the scans when my other tests are showing a trend in a certain direction. This is perfect for me because I believe that 3 month scans along with my one month appointments would just add to the disruption that cancer has already caused in my life and I am comfortable with that.
I also don't get injected with contrast because I've had an allergic reaction to it. I was told it isn't necessary but helps with viewing. I guess it all just depends. But this is all good to know because we can question our doctors about why they are doing things a certain way as compared to other places.
Renee
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My frequency of scans is 'as needed' in other words, when I am showing symptoms and they have such a difficult time finding a vein now that I now refuse the contrast. I have a mammogram annually and a DEXA biannually. The prep here is just a litre of water over an hour prior to scanning.
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Dear Jobur,
I have had many blessings in lack of pain despite a firm stage 4 diagnosis....thursday I go to Shands Hospital in Jacksonville, fl for scans and CT...Why do I go there...Because even though I am a U. of Vanderbilt Nurse practitioner grad, even though I have 3 insurances and am a practicing Nurse Practitioner in the same city, My care has been Deplorable at Vanderbilt Outpatient... I switched to Tennessee Oncology and have had wonderful care..Let's see : why am I in this predicament....I think it has to do with insurance and cutbacks in reimbursement....I believe that Vanderbilt as a teaching hospital had interns reading the mammograms...Remember, I was misdiagnosed on mammograms and a CT of the chest...it was not until much later after biopsies etc. that a MRI of both breasts finally led to a diagnosis of stage 4 which was merrily dropped on my Christmas week like a bomb over the phone.....Yes I have a little bitterness because I did it all and still was found with metastatic cancer....I do not trust any radiology at Vanderbilt University Hospital period..I fly to Jacksonville, Fl for the rest of my life to avoid the horrendous care in the radiology at Vanderbilt...Sorry folks there is no reason for me to be here except that the medical profession driven by insurance caters to the least expensive denominator....I am a nurse practitioner in the same city and hear actual horror tales every week about Vanderbilt. It started when the economy took a dive and it is really bad now.thanks for my venting . If you have read any former emails from me you know that I think Shands Proton Center and specifically Dr. Dagan is the HOLY GRAIL of radiology...Just telling it like it is...Carolyn from Music City
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I have only had PET scans since my stage IV dx. I have to fast for 6 hrs, but am allowed water. No strenuous exercise. I then get the nuclear injection (in my port), rest in a dark room for an hour and scan away. I know some ladies are allowed to read or listen to music after the injection, but not at my facility
Why there are so many variations on the same theme is a mystery to me.
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Tomorrow I fly to Shands in Jacksonville, Fl for the above described tests...Yes I have had that idea of less frequency broached but it seems like another trick to save the insurance companies money...Since I was a victim of misdiagnosis, I think I would rather keep on the frequency of every 3 months....It is hard enough to undergo the nerves without upping the time to 6 months between scans...Just my idea from here in Music City...Carolyn
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Hi all,
Catching up after being off line for just over a week - touring around the South Island (business and vacation). Good luck with the scans, Carolyn.
Welcome to the newcomers. Sorry for your stage IV dx, but glad you found us.
Chrissy - I'm on "as needed" too. Had a CT scan in February; will probably get one next February. I've had 2 bone scans this year to verify that my pain is side effects and not cancer.
Hugs to all,
Terre
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hi everyone! I'm new to the group, diagnosed with multiple bone mets this past June and have completed rads to my left pelvis and spine. I did have vertebralplasty to stabilize my L1 successfully and I have notified less pain. So now the orthopedic is recommending hip arthroplasty to "plug the hole in my hip" for improved pain control vs a large extremely invasive reconstruction and a total hip to stabilize. Anyone out there been through this before??
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I was initially diagnoised at stage 4; I have three bone mets. 2 in spine. 1 in femur. I am scanned every 3 months for changes due to clinical trial rules. I have another scan next week; first since I started the palbociclib/letrozole trial. Scans are very scary. A friend is going with me.
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Hi, culberta. I'm sorry about your mets diagnosis, but I'm glad you've found us, and it sounds like you've been getting excellent treatment for your situation. As far as hip surgery, I needed a total hip replacement 6 mos. ago due to pathological fractures in my femur and pelvis, and I just wanted to tell you that although the first few weeks were kind of rough, the recovery went pretty quickly and within 3 months you never would have guessed I'd had that kind of surgery. If they can plug the hole (as you said), that would be great. But even though a hip replacement is more invasive, I'm actually thankful I needed and got one because it removed most if not all of the diseased bone and left me totally pain free in that area.
I'm sure others will be along who have had the type surgery that's been recommended for you, but I just wanted to share what I feel were definite benefits to a total hip replacement.
And welcome, DrBonnie. Your screen name definitely provokes my curiosity, so I hope you won't mind my asking if you're a doctor, and if so, what kind. (((Hugs))) to you both ~ Deanna
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Hi Culberta and welcome to the group. I haven't had hip replacement so can't help you on that score but I do hope your treatment, what ever it turns out to be is effective at stabilizing the area and reducing your pain.
Hi DrBonnie, yup, same question from me as from Deanna.........lol......curious lot aren't we? Oh, welcome by the way! As scary as scans are for most I always look at them as being informative as to what is happening where I can't see and being the nosy I am, I always like to know what's happening as it helps me deal. Good luck with your's and it's a good thing to have company for support.
Kiwi I had a chest CT a couple of months back, my GP ordered it and told me that I was to have an xray as he was investigating a chest infection. It wasn't until I had left his room and went to ring the facility to book in that I noticed he had ordered the CT. I quizzed him on it went I went back to see him and he said that because of my history he changed his mind........nice of him to tell me........lol. That is the only scan I have had this year and all going well I won't be having one for the rest of the year. I have learned over the last five and a half years not to worry too much about anything but to just be aware.........this allows me to live a pretty normal life.
Have a great day all! Love n hugs. Chrissy
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Hi,
Welcome to new members. I hope you find this forum a source of friendship and comfort.
As to scan frequency, I do wish there was something standard, but we are all individuals and medicine is an art as well as a science.
Carolyn, a misdiagnosis would definitely color your feelings about scan frequency. I was getting scanned every 3 months for the first year and a half after dx. I was actually thrilled, and encouraged, when my mo said she wanted to move to every 6 months. She said I may well live a good long time and she wanted to minimize radiation exposure. My insurance situation is a bit different. I belong to an all inclusive HMO, kind of like the Club Med of medical care. Everything, literally, is on one large campus, including hospital, labs, pharmacies, all testing and tx facilities. There is no third party insurance company to go through and the docs are all salaried. My mo just puts orders for anything I need into her computer and it's done. I've never been denied anything nor has anything been questioned.
Good luck, Carolyn. I'm up in October.
Caryn
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Hi there, I'm hoping to draw from the collective of knowledge here! I'm no where near reading all the messages on this thread, so I apologize if this has been covered.
Has anyone had nerve pain from a lumbar met?
I was diagnosed with bone mets. The report from the CT said lytic changes on the rib 6 posterior, T1, T7 and L4. The first oncologist I saw couldn't see anything in T1, but was concerned about the L4, and wanted to consult with an orthopedic surgeon to see if the lesion needed to be stabilized. I had no pain at all, even when they pressed on my spine. However, I have had a wonky hip from a muscular injury I sustained in January, which had improved, but then was made worse in March (missed a step, then tried to get on a camel a few days later), and which sometimes still flares up. They didn't think it was connected to the lumbar met. My hip got worse in the two weeks I was home recovering from my lumpectomy, but was improving since I returned to work. (I suspect my kitchen chair is causing issues!)
Today I felt fine when I woke up, but within the hour I had some issues with the opposite hip. It's a bit higher, right at the top of the illiac and closer to the spine. I figured it would get worked out by the time I walked to work, but it's been horrendous all day! Fine if I'm standing, usually okay when walking. Bad when sitting. Worse when I get up from sitting, or if I twist at all.
I've been on Tamoxifen for 12 days, and I have heard you can get flares around the two week mark.
Does this sound like anything you've experienced from a lumbar met?
Or do I need to replace that kitchen chair quickly!
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I just realized that I phrased that question awkwardly. Doh!
If you have ever had pain from a lumbar met, what did it feel like?
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Hello everyone,
Just diagnosed yesterday with bone mets (pelvis, rib, and skull). Bit of a shock as I was treated for Stage I, nodes clean IDC 12 years ago. The good news though is that it's not in any organs (that they can find). I have no pain or other symptoms - the investigation got started because of a sports injury in a body part that's not even involved.
Hey, Milaandra,
There's got to be a good story for a Scot who missed a step and then tried to get on a camel. I'm sorry that the injury felt worse afterwards, but I have to ask about the camel in Scotland.......
Cheers, Tracey
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Whew! Breathe another sigh of relief....I had my Bone Scan and Abdominal CT today and met with the radiologist..
Even though I had had a couple of symptoms that worried me, the scan and the CT showed no new activity and mild regression...absolutely no new progression...I am just so relieved and am good to go for another 3 months...I count among my blessings my husband and sister that accompany me to these torture sessions. Carolyn from Music City
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car2tenn- wwwwoooohoooo!
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Carolyn,
Hooray! That is wonderful news. Despite my breezy attitude toward bc, I am always convinced that I have symptoms of progression in the weeks leading up to a scan. I know you'll be able to really enjoy your weekend!
Caryn
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Sorry for your news Tracey. Do they have a treatment plan for you?
So far, it seems that Arimidex is the only way they plan to treat me, at least for now. I'll learn more October 2nd.
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Hi Ladies, well it looks like my MBC to the lung has spread to the bones. The reason that there may be some doubt is that PET CT showed "no mets to the bone" but the MRI showed some areas that were consistent " with metastasis in the bones". Both oncs are reviewing but it looks like I will be starting on Xgeva. I would appreciate any info on se that you could give. Hope that all have a good weekend. Peg
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What a shock after 12 years, Tracey... and with no symptoms. I'm so sorry, but I'm glad you've found us.
And great news, Carolyn!!!! YaY!!!
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Carolyn-
Glad to hear your scans were good! And no waiting to hear the results must be wonderful.
Have a happy weekend with your DH,
Jo
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V - really hope you can get back to your yoga sooner than later. I fractured my hip (had no idea the cancer had returned and no idea how I did this to my hip). I just went for a CT scan last week as the oncologist wants to see if what the blood work is telling is the same picture from the CT scan. I still have to use a walker because of the hip but I'm trying really hard (physio and massage) to get rid of it because it interferes with what I love doing. Use to be able to do 5 km every Saturday with a group of survivors and now I'm lucky to walk a block. I just want to be able to do some of the things I enjoy with my kids (bike riding) again. They love having me home but I wish it was under different circumstances..
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Hi Ladies, I feel like I am getting scanned all the dang time! But, my tumor markers keep rising, and every scan shows more progression. I recently had radiation to the brain and the right hip (to try to alleviate the back pain). I then was experiencing pain in the right hip area that would shoot up and down, and my right leg was going numb. So, 5 MRI's of spine (3) and both hips (2) showed the head of both femurs being eaten away 50% and a 6.5cm lesion, that went out of the field of view, on my right femur. So, back to radiation I go for 10 treatments, as this is a weight bearing bone. I just started Taxol and Xeloda on Mon., so this is going to be a lot of toxicity all at once. This trickster appears to be quite aggressive lately, showing so much progression so quickly. I'm holding out hope that the new chemo program arrests it. Gosh, this just sucks, but I try to stay positive in light of it all.
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Sending hugs and good thoughts your way, Skylotus. So sorry to hear of your progression. Hoping this treatment knocks it on its arse and gets you back to feeling good.
Carolyn - congrats!
Welcome to the newcomers. Tracey - Progression after 12 years would be a shock. I had a similar Stage 1 dx and progressed after six - a huge shock, but I'm thinking 12 would be even greater.
Milaandra - I had pain from a spine met after they insisted at the hospital that I use crutches and hop (no weight bearing on left left due to femur mets) which injured my back. My back was really sore until after they did radiation on it. It still hurts sometimes, but not as much. I can't comment on the hip pain as mine is chronic and a combo of arthritis, Femara, and limping due to a sore knee (arthritis) and hip (bone mets). Try a different chair; I do get more sore from some chairs and insisted on a fairly expensive chair at the office to baby my back.
Momonona - sorry to hear that you have bone mets. But glad you found us.
Dune - hang in there!
Hugs to all,
Terre0 -
What do you use for your pain Terre? I've been sick for the past few days because of taking pain meds then taking meds to fix the side effects of the pain meds. I should be feeling better tomorrow, but dang! I'm really going to have to remember that I do not tolerate pain meds well. I guess I look forward to my MO appt on the 2nd. I do feel a bit adrift, and I need to focus on what to do to get better or feel better or at least what NOT to do, what can make things worse. My depression is kicking my butt, so instead of trying to grab all the gusto from life, I am hanging out in this bedroom wishing I could sleep. I feel ashamed of myself, knowing there are people who would use this time well and instead I just lie around wishing I was not conscious. Well, there has been a lot of upset in a very short period of time. In addition to the progression of the cancer, I have the disability hearing on the 1st. I won't even get notes together for it. So far anyway. I expect to be glad to have that behind me even though it takes about 6 weeks for the ruling. My aunt and uncle arrive here from Florida tomorrow, so my birds and I have been displaced to a smaller room. I can't find things. I'm not comfortable. However, this too is temporary. One would think I would spend time out of this room if I don't like it in here. Hopefully I will do better tomorrow.
So I know I just rambled on about a bunch of stuff. I needed a bit of a vent. Now hopefully I will get my act together tomorrow. Always tomorrow. ;>)
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Hi Dunesleeper,
I'm sorry to hear about the side effects and pain. You shouldn't feel badly about wanting to sleep through a poor day. To answer your question from yesterday I start on Tamoxifen and Pamidromate this coming week with ovary removal sometime in October. Cheers,
Tracey
"My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style” - Maya Angelou0 -
I have not been successful getting the webstream on the LBBC Fall conference today. Has anyone heard anything?
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Hi Tracey - hopefully they told you to get your teeth in good shape before starting the Pamidromate. If not, see your dentist ASAP and get them cleaned and checked. If you need any major dental work, get it done and postpone starting the Pamidromate - just a precaution, but having gone through ONJ, I can say from experience that I wish someone had warned/told me as it was beyond painful.
Dune - sent you a PM. I'm on the NZ equivalent of Celebrex and it's wonderful. Really helping me a lot. It's my fourth or fifth pain med and I've finally found one that seems to be working. Just hoping it continues to work. I took prescription Alieve for a month and it was amazing. Then it stopped working and didn't touch the pain at all. So I went on an arthritis med (generic something or other) and it trashed my tummy. So now I'm on a generic form of Celebrex and my pain is much reduced. It's $140 a month, but worth it.
Millandra - one other thing that bothers my back is if I wear something that is tight and hits the vertebrae with the mets. Tight belt or waistband that hits that spot. So think about that as well perhaps?
Take care all,
Terre0 -
Good morning everyone,
I hope today is going well for everyone. I have a question for you. I haven't had cancer for 12 years - when I was first diagnosed I told my family about it - I have sisters and nieces and they needed to know for their own health. They think, as I did, that I was cured. Now that it has metastasized to the bone, I'll be taking medications that won't have obvious side effects (complete hair loss for instance) and my family lives distant to me - should I tell them or wait until the effects are obvious? What do you think their "rights" are as my family? Hoping you can share your opinion / experience / decision making thought process. P.S. I have no children and of course my husband knows. Thanks.
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