Bone Mets Thread
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Hey ladies, check out pet scan on breast cancer.org. Compares all the scans and accuracy in a study
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Bone scan seems preferred for bone mets overall, especially over CT. I can't remember what my Onc thinks of MRI vs. bone scan. Once you get a little farther into this, I would suggest determining with your doc which scans you'll be getting on regular intervals so that you and they can compare bone scans to bone scans or MRIs to MRIs. It's harder when there are multiple formats to compare what's progression or healing. In the early diagnostic phase, I'm a fan of all the tests possible to gather as much info as possible. Then, since we're playing a long game here, my team tries to limit radiation exposure.
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I’ve always been told that bone scans will generally show that there is metabolic activity in the bones, and MRI and CT can show precisely what it is.
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Okay, can anyone help me with this? I just read my bone scan results.
In addition to the focus of increased activity in the proximal right femur, it also says:
"There are no definite additional foci of abnormal activity noted in the skeleton to suggest neoplastic disease."
My previous scan from 4 months ago said very specifically "NO areas of increased activity." Same radiologist signed off on it and it's noted that they compared this new one to the previous one. So this time the wording is not very comforting. "No definite additional foci" reads to me as much less definitive and clear than the September scan.
They have only scheduled an MRI of the area in the right femur. So my oncologist was clearly not concerned by this wording, but I'm just wondering if it's normal.
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Different radiologists read these scans. Best thing to do is have you ONC. pull up the scan at your next apt. and have her explain what the meaning is.. I have a good guess, but you deserve better than my"guesses. God Bless
There is so much conversation on this thread about scans, results, which is best. You just need a Onc. team that you trust. And don' le scananxiey and scan result anxiety drive you sick... I did that in Jan. and ended on my couch for three days shaking. Trust your doc.s or get second opinion..
Hope this doesn't sound harsh or uncaring.. Just finished up chemo, and my emotions are up and down
I do care about you honey
SUE
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i’d actually love to hear your guess.
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pesky are you on Xgeva?
I think the results of your scans are excellent, activity in the femur could be related to the downside of xgeva.
I'm sure people with more knowledge will chime in with based on their extensive experiences, but the side effects of xgeva come to mind when I read about activity in the femur while everything else is basically okay.
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No, I’m not on any medication at all. I am triple negative and finished treatment in October.
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I think the MRI will clear the situation up because PET scans light up for many reasons besides cancer.
They are NOT completely reliable....therefore the MRI....
If you’re asymptomatic enjoy the good reading.
Wishing you great MRI results.
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Just to clarify, this was a bone scan, not a PET.
I actually have a lot of pain in my spine and tailbone. Hence the reason I am a little uncomfortable with the wording of the bone scan. It was definitive in September that they were no areas of increased focus. This time it says "no definite" areas. They are either are or aren't. I don't think they should be able to use such wishy-washy wording on a scan report.
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I guess a bone scan is also not reliable otherwise why would they want to check with an MRI ?
It's confusing that you have pain in unrelated areas, but cancer medications are well know to cause fatigue and various malaises....I hope you get a clear answer soon and that the results are excellent!
I find good quality Omega 3 fatty acids and magnesium to be excellent pain relievers....basically any anti inflammatories will help
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I do remember my oncologist telling me that most of her patients with bone Mets did not present with any pain. It's all weird.
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I think your MO is in a strong dissociative state from reality...what's consistent on these boards are complains about fatigue, aches and pains. They even have Palliative Care Doctors on staff that deal with these specific issues....
by the way I'm also on a low dose fentanyl patch that helps my lower back pain....the patch gets changed every three days and I have detected no negative side effects....
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I think she probably means when they initially present with early bone meds they don't have pain.
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Not all of us have pain. I had extensive mets throughout all of my weight bearing bones, my MO said they were likely growing for years (IBC is stealthy like that). I never had any pain from my bone mets beyond anything that I attributed to getting older like the occasional stiff back. It was only after I become aware of the mets after my staging PET/CT that I started paying more attention to any aches, but never real pain.
When I first started on Herceptin the bone and joint pain was brutal, but my bone mets actually resolved on that drug. The bone pain was just a SE of H&P and it stopped once my body got used to the drug.
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I wish there were a way to reasonably estimate how long none Mets have been growing. I had such extensive Mets at the first time of diagnosis de novo in April 2017 that it seriously and truly freaked me out beyond belief! I had no pain! But I did have a lot of malaise (like severe anxiety and panic attacks) as well as deep fatigue. My low back “went out” for about 6 months in November of 2014 and I couldn’t for the life of me make sense of how that could’ve happened.
I don’t have any major pain now - but I do believe the anti-estrogenic medications and possibly the Ibrance cause joint, muscle and some bone pain. The bone pain is usually worse at night and the joint pain is pretty much always there if I hold one position too long (ie sitting cross legged for more than 30 seconds).0 -
I have some aches and pains I never had but I attribute them to the fact that I had so much chemo and rads.
I have major fatigue, like way worse than I feel like it should be at this point. Also malaise. It’s hard to ever know if it means anything. I usually don’t think it’s cancer related but who ever knows
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Hi all - joining you all here as a new metster as of Nov/Dec. Have bone mets in about 8 places, along with a suspected lymph node in/near lung. This all came to my attention as the result of an arm injury in July on the night my husband died
. I was very surprised that it turned out to be mets, 9 years after my Stage 1 diagnosis. I heard and felt a pop when I hurt my arm and was convinced I had torn or separated some muscle or tendon, but the scans kept turning up abnormal bone marrow in the humerus, along with a pathologic fracture. PET scan and biopsy confirmed metastasized breast cancer. Turns out the fracture was a complete fracture and now is not healing properly - it's at an angulated position, which causes additional pain. I've not had much use of my arm, as I can't lift it, and sleeping has been a nightmare. I decided to see an orthopedic oncologist and had my appointment today. We agreed on surgery to re-break it and install plates and screws, because I really can't live with my arm like this. I'll begin my 3rd cycle of Ibrance/Faslodex tomorrow.It's heartbreaking to be here as I'm sure you all know, but I'm glad for the companionship. It's hard to talk cancer with others. I mourn my husband, and am trying to find my way through all these changes in my life. I suppose time will help me adjust.
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Philly I had that unexplainable deep fatigue before my DX too, in hindsight that was my only warning sign. I chalked that up to hitting mid-50s and still trying to burn the candle at both ends, trying to keep up with people half my age. I can relate to freaking out wondering how the heck the cancer could spread so far before there was any sign that something was wrong. I kept thinking there had to be a mistake, but the changes noted during followup scans finally convinced me it was true.
I threw my back out last spring and worried that it was advancing again. I kept thinking that sooner or later I should have pain from the bone mets (I've had my share of other cancer pain, just not from bone mets) and this pain was so severe that I couldn't even stand up straight or get in/out of bed without help. I waited two weeks before telling my MO. Turned out to be muscles not bone and a muscle relaxer straightened me right out in a few days. Pain, or lack of, doesn't seem to be a good warning sign for me.
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Meg I'm so sorry about the loss of your husband and health at the same time. What horrible stress you must be experiencing. I hope the resetting of your bones is the beginning of renewed strength and vitality.
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Meg, what a crappy, crappy hand you've been dealt. We will mourn along with you and comfort and help you where we can. It sounds like you've got a good medical team and have come up with a plan to address the arm. I hope the Ibrance/Fas combo treats you well for a long, long time. Sending prayers of support and peace your way.
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I have dealt with stress/depression my entire adult life. That also cause body aches and pains. I had chemo today and am riding the energy high right now. hehe. But I was told when they found my 4.7cm breast tumor and just one lymph node that they had been growing for 5 to 10 yrs!!!!! (I just turned 65) I was put on an anti-estrogen and then I knew what pain was. The AL was hell for me. Plus, during that year, I suddenly have mets to 4 areas in my skeleton and a few tiny lung mets. So, med. change to FUl/ IBR. And that cause the funky tumor to begin growing outside by breast. Its fast too. It's been there 6mos. (no I do not have inflammatory). So, I got backed in a corner to take the chemo to tame the outside tumor. If it ulcerates, the Onc said it would never heal I said take it off Today, I asked physican, if taking the breast would be a option. He said NO current research shows that taking the tumor out causes seeding...WHAT???????
Well, how the hell to you like that? (alternative believe that the body knows the cancer cells are non self, but is not strong enough to kill them because it's busy fighting either a fungus, bacteria or viral infection. (prob. H. phori (SP) so it gathers the cells in a hard tumor to stop the spread until it is strong enough to fight it off.
I'm sorry girls, I know you do not need me casting doubt on medical treatments.. I'm stopping myself from saying much more. And for gosh sakes, I'm one person with my own beliefs. This is for what it's worth info
Sure love all of you
The physician said my blood work after one week of chemo, my attitude and my lack of physical symptoms is phenomenal! I was going to tell him it's not me. It's Jesus, but decided to take that a bit more slowly.
To GOD be the glory girls.
Thoughts are with all of you, always
(Miamix, why don't you tell us what you really think? hehe)
If this post bothers anyone, and I would understand if it did, SAY SO, and it won't happen again.
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Pesky Nothing about cancer is normal. I'm sorry. The ONC do the best they can with the information that they are taught. I had total body MRI one and a half year ago and never had one again. Cancer seems to have the ability to hide, come out and then hide some more.
I truly hope that you are a Christian and that you have the ability to put this all in GODS hands.
Your body has the ability to heal itself. All life forms goal is to survive. Build up your immune system with food, positive thoughts, with your imagination, I never call cancer "the beast" I think of my tumors as a sick child. Feed them with love and tell your body that you are helping it. YOUR BODY BELIEVES WHAT YOUR MIND TELLS IT
And I said, I'd shut up.
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hi Snooky my heart goes to you as you undergo treatment. I hope and pray that you get a complete and fast response from Taxol. I know that surgeons don't like to remove the breasts of stage four patients, but for f***'s sake, if it's about to ulcerate, it seem logical to me that it should be removed so the skin can be used to repair the wound....but I'm no doctor so maybe my outrage is inappropriate....what do I know?
It's obvious by now that the ingrained fears and horrors that the word cancer induces in young and old is in direct relation to the barbaric treatments offered that will eventually fail us....but we shall endure, and like they say: what doesn't break you will make you strong.
So let's make our goal to become outliers....if this disease kills me in 30 years time I won't complain!
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And like Steve Jobs used to say: One more thing....in this case for us to think, protect, and worry about...
I've been concerned about the effects of the TXs on my liver and kidneys, but apparently the heart is what suffers and give up the most from cancer treatments....who knew? I will see a heart oncologist next and get some tests done
3 Things to Know About Your Heart During Cancer Treatment
https://www.yalemedicine.org/stories/heart-and-cancer-treatment/0 -
Pesky, the only thing that presented itself was a growth on my upper thigh that was biopsied and came back with metastatic carcinoma. The breast cancer was never picked up on mammo, MRI, or ultrasound. It did show on a PET scan. And a biopsy of the breast and the thigh growth confirmed it. I feel that whatever you end up with showing you a result is important in a follow up to see if there's any changes. Some growths are picked up easier than others.
I have no pain or side effects to speak of. I do go outside almost every day and work myself to death with "farm" chores , hammer, drill, and saw, moving manure, etc.
Does anyone know anything about genetic testing used for being put on the best meds for you and the CA? I'm assuming I'm going to a genetics appt for that. I was kind of surprised to hear about this. I'll find out tomorrow.
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Seems that aside from people who are educated in this, "metastatic" appears to taken as "too bad too late". I'm here hoping every day that "metastatic" does not mean "no hope in he11" or being written off as "going to die soon" . I see in people's signatures (yes I read the whole histories of what a member has been thru) that mets or stage IV hopefully does not mean an early death. Comments?
I work hard in my 1 acre farm with a 100 yr old house (my dream) every day. I have to fight the thoughts of making an improvement to this property being pointless because I won't be around long enough to enjoy it. Don't laugh, it gets to the point where I hesitate in hatching chicks in fear of them outliving me (pet chicken queen). How do I Not live like I will die too soon to enjoy what I've done? Even my daughter, who's an RN, looks at me and is probably thinking "how come mom is not requiring any help due to pain or whatever.
I'm sure I'm not alone in my thoughts. Do know that I pray to G_d for everyone here and not ever just for myself.
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Meg, so sorry for all you’ve been going through. Please discuss with your surgeon that you are in Ibrance. I recall from my own experience that they were adamant I be off it before surgery as it could interfere with blood vessel reattachment.
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Meg so sorry to read your post and hear of your husbands passing,
I have completely changed since I was diagnosed with bc in my brain and spinal fluid . I could cope with just the bones and bone marrow but getting that diagnosis snuffed out all hope and I am desperately trying to find more. Does anyone know of anyone else who have done ok with bc in the brain lining?
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Meg, I too am sorry to hear of all you are dealing with. Such a heavy load to bear all at once.
I have a question for everyone on bone scans. Does it matter if the area of increased uptake is described as "subtle"?
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