Bone Mets Thread
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Hello all! I am new to this thread and I hope that you don’t mind me dropping in because I am scared to death and can’t find anyone to speak with. Perhaps I am worrying about nothing but am hoping that you can help me breathe
I was diagnosed with liminal b breast cancer in 2014. I had the surgery (modified radical mastectomy), did the chemo and herceptin and have had annual breast MRIs since. My right breast never developed so had my implant pulled out ant the same time ans my mastectomy. Everything has been negative including a bone scan in 2022. I do have the beginning of arthritis and osteoporosis- turning 60 this year.
I just received results from my annual breast MRI which includes the following
BONES AND SOFT TISSUES: There is a 5 mm focus of enhancement with T2 bright signal in the 5th or 6th anterior right rib, not definitely seen previously.New right anterior 5th or 6th rib 5 mm enhancing focus. High T2 signal is reassuring, although etiology
is unclear. Depending on risk of recurrence, consider CT/bone scan correlation. If not seen, consider
six-month follow-up MRI.
What can this be if not metastatic breast cancer? Here I am nearly 60 years old and I can’t stop panicking
I realize that none of us are Drs but if you’ve had similar experiences I’d appreciate your feedback
My family dr will be ordering a bone scan but I am unable to speak with her and no longer have an oncologist as my file was transferred from my cancer centre last year after being taken off tamoxifenI hope to hear from someone in this group I wish you all well
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@Footballnut Sorry you have a worrying scan result. It sounds like you will get more info with a bone scan. Sometimes things show on one scan and not another, or watched for change. I'm having a similar thing, have to get a pet ct to see if there is new mets in my shoulder blade that showed up on bone scan. It's nerve wracking to wait for scan and then results. I try to get distracted with other things so it's not cancer in my face 24/7, with the acme anvil over my head, or what I call the Panic Parrot on my shoulder squawking about the scans.
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Footballnut - I'm sorry to hear you have a worrying result. I think most of us here can empathize with being in that waiting limbo needing more imaging for answers. It's awful. I'm glad your primary doc is being proactive with a bone scan. I'm not sure what I can say that will make anything better. I have had a bone scan come back in the past with what looked like a large active met in my left shin. After having x-rays it was determined not to be a met but rather an area of osteonecrosis most likely from an old ACL repair. What I understand is that different imaging modalities have strengths in different things. Some catch functional processes and some are better at imaging bones vs soft tissues. A lot of times the docs use the compiled images to clue together what they think is going on. Keep us updated. You will find a lot of support here.
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Thank you both for sharing. I was successful with having my oncologist look at the actual images and she said that she doesn’t think it’s anything to worry about and to relax
she wouldn’t say that if she thought it was Mets right?
I only ask because when I felt a lump in my breast and under my arm 9 years ago I saw a surgeon who felt them, looked me in the eye and told me that it was nothing. I knew he was full of you know whatA week later he told me what I already knew. His doing that makes it hard for me to believe good news
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I wish I had the right words for you but I don't so I'll use someone else's. Telling you not to worry is like putting a screen door on a boat it's pointless. As Tom Petty said "the waiting is the hardest part" It could very well be nothing as we all hope but if not, this board is full of great information and ladies who have dealt with all of this.
Much love as you wait.
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Ladies, thank you to those who've responded since I posted. I haven't been on this page for a while, I can't recall if I posted before or after I ended up in the hospital for 6 days after my second chemo (Paraplatin/Gemzar combo) because all my numbers crashed. Needed 4 bags of platelets as well as a bag of whole blood. Oh! Bonus, while I was there the doctors decided I needed a rod placed in my femur before a catastrophic fracture occurred.
I went yesterday to the radiologist for my set up appointment, which needed to be done, but I had a bad night the night before (TERRIBLE nightmares-still can visualize some of it!), and lack of sleep, so between the discussion with the Dr and seeing all the mets, and the marking where I felt exposed and vulnerable-let's just say it was NOT a good day. The Dr did prescribe me the Fentynal patch as I've been on a roller coaster of pain which he said this should help even things out once the transition is complete off the OxyContin and OxyCodone. Hopefully the rads may help with the pain as well.
I'm glad it's not just me thinking this whole new format is weird. I'm not seeing a lot of new conversations in specific topics, and it looks as though I can't respond directly to someone under their comments. I'll take some time later today to read everyone's feedback. I REALLY appreciate it. I need an outlet other than my poor husband. I worry about him taking so much on his shoulders.
Best to you all.
Sharon
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Sharon, respond to people directly by tapping on their name above their message..
I don't know where they will find it tho. I will try with you.
Gailmary
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Hey Gail,
I mean attach a response directly to your comment. Didn't we used to be able to do that or am I mistaken?
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Like this?
I tapped the quotation mark velour your post and it copied your post.
Gailmary
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Ah ha! That will work! Thanks!
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You both are right about a lack of new questions and forums on this new format. I've been frustrated with that. @pupfoster1 I am sorry to hear about your pain and recent hospitalization. I have a rod that was placed in my femur also to prevent "catastrophic fracture" so I empathize with that. Recovery takes a while, but if it helps, at this point I have full function of my leg with very few problems. Mostly I have stiffness from the radiation. I had the surgery at the very end of 2019. I am in hopes the transition from Oxy to the fentanyl patch evens things out and they can get your pain under control.
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Pet CT shows new mets shoulder blade and pelvic body. I have a Dr visit this week to discuss. The shoulder one was on earlier scan but not the pelvic. That one is freaking me out. It does hurt to ride my bike. I tried backstroke in he pool and had severe pain in the shoulder, had to stop. Short bike rides and swim are my only sports left and cancer is trying to destroy them too! I am not ok. I guess I was hoping the cancer would be stopped for a while longer, had two years with no progression. Or maybe it was just being missed (again).
Does anyone else have muscle cramps all the time from spinal cord compression injury? I'm taking methocarbamol and can really tell when it wears off. I try therapy things but it just doesn't get better. The nerves are misfiring. Even sitting in a chair at the wrong angle can start cramps. My feet are half numb and I stumble around without a walking stick. I've used it so much I strained my fingers. I did go birding though up and down a pretty steep trail this weekend without falling, kind of proud of it.. Anyway I can't take ibuprofen etc because I'm on Eliquis forever (PE). I guess the point of my rambling is all this hurts too much and I'm tired of cancer ruining my life. I'm not even 50 yet and still wanted to snowboard and ride bikes, horses with my nieces and nephews. I watched the webinar about cancer and mental health and remember the acronym DICE distraction indulgence comfort expression and I'm trying but I'm not good at expression. I have trouble taking about things even to people I know. They're already freaked out enough, keep asking hopefully when will you finish treatment? Anyway hopefully I will have radiation or something so some of this stops hurting and I can go back to the mountains asap, putter in my garden and bake stuff. It's hard to push through the fatigue and some days I just crash. Whoever reads this I know you're probably going through similar stuff and don't expect long responses. I'm just trying the expression thing. I can't do groups. I start to freeze when just one person tries to make conversation more than 30 seconds. I keep trying to find ways to pull away from the black hole of depression and the undertow of rage. You can't really talk about how angry you are. We're supposed think positive, wear a pink tutu and run a marathon or whatever. I'm very grateful for the advances in medicine, surgery, and the doctors who try their best. It's frustrating though when what you really want is cured, want your life back.
A hug to other posters, thanks for listening.
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mkestrel, Ah, I'm sorry you are so young to have to deal with this damn disease. I find neurontin helps with nerve ending pain. I'm on 300 mgs., and it helps me with the pain and sleep. I will admit it leaves me groggy in the morning, so no driving in my case. I had been on this particular drug years ago for MS and had good results. It is not an opioid, which in my case is important due to an MS drug I am on. I'm new to this mess, so I hope others with more information will post soon.
P.S. The flower is beautiful.. Is it a passion flower by any chance?
Irishlove aka Laurel
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mkestrel, I’m so sorry you are having to deal with mbc and pain at such a young age. It sucks. It is okay to be angry, to be very angry about what you are dealing with. I’m a believer in embracing all the emotions we feel. I know what you’re saying about others expecting us to rally and present this warrior-ready-for-battle image. Screw that.
I’m not sure how long you’ve had mbc, but it is a roller coaster ride of ups and downs. One suggestion I have is to keep a daily journal. It can be handwritten or something you keep on your laptop or phone. Write three pages every day. Write about anything and everything. No one is going to see it, so there’s no need to hold back on what you put into words. I did this after diagnosis for awhile. Several years later I came across what I’d written and actually chuckled at how vicious it was! I put it all out there and it was cathartic.
I’m hoping once you get on a new treatment, it will help. Do tell your doctor about the pain and see what help is available for you. I understand how you feel about not being able to enjoy some of your favorite activities. Yes, it is depressing. It is a loss of your previous lifestyle and is so unfair. When I get to feeling sad about former things in my life that mbc took away, I allow myself to feel the feelings without judging myself. It is a time to practice extreme self-care and to use self-kindness. Through that process, I have learned to take small steps to continually adapt to the realities of living with mbc. It’s a process and no magic bullet. (Btw, I never heard of the DICE approach and would love to hear more).Thinking of you and wishing all the best for you.
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irishlove and divinemrsm thank you for your thoughtful responses. The flower is a poppy. Earlier I almost pulled it because I thought it was a sticker weed. I've been enjoying watching it bloom from my chair in the shade. I have a large garden (with lots of help) so I putter in it and then go back to shade chair. I think I fixed the signature thing now. This is a wildflower in the mountains yesterday.
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MKestrel,
I so get it. I am not sure many without cancer can hear this- sometimes I vent to DH- I think the journal is a really good idea. When I get new pains or suddenly can't do something I feel so fragile- which is not where I want to be- currently sudden onset of mysterious knee pain prevents me taking walks- which is my happy place.
Many people have had great relief of pain with radiation to the bone mets causing pain- it also kills that area of mets.
I have had muscle cramps with most of the meds I have taken- jump out of bed and stretch cramps sometimes. sometimes stretching before bed helps or lifting my toes toward my shin before I stretch or to stop the cramp helps also. I have heard pickle juice or hot sauce help by distracting the nerve endings- but, mine are middle of the night so those options don't seem viable. one caveat is that when I jump out of bed for the cramp I make sure to grab the nearby dresser- I once fainted and broke my nose-
Love the poppy!
Hugs to you
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mkestrel- I get it, the pool and swimming is my go to (biking is second!) and is my happy place, even if I have to currently swim in a rather bizarre place. But I love nothing more than doing laps outside in the summer with the sun in the water, or in the winter if its snowing outside beyond the big windows. Unfortunately this hip flexor issue has really put the kibosh on any of it and it makes be very upset on occasion. It may or may not be cancer influenced, but I too am fed up of cancer or cancer treatments limiting what I love to do. So - I hear you, I hear your frustration.
What I try to do after I get over being upset is think of ways I can still get the experience with a modification. Could you water jog for the time being? Or do a mix of water jogging and some kicking? Or an (easy!) water aerobics class? I cant kick so instead I mix in arms only pulling a few laps between doing PT water exercises for the hip. Hopefully they can take care of that shoulder met quick and get you back in the water!
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DivinemrsM I think it was this one
Nkb and SondraF thanks for the kind thoughts and suggestions. You're right, I will adapt the swim moves and hopefully radiation treatment helps. I can't twist up to breathe or it causes cramps so I use a snorkel and swim flat face down. The fragile invalid feeling is frustrating, and so is constantly having to rehab something. I've been avoiding the pool to because COVID and other gym germs (low wbc). I have a little inflatable hot tub and do some exercises but I want to swim laps. The bike ... I have padded shorts and will get a different seat I think. Hope your hip heals enough so you cando things too SondraF.
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Mkestrel, you did great on the expression thing. I don't post much cabuse I don't express myself as well on paper. So sorry to hear of your mets and the pain your dealing with. Hopefully the radiation will take card of your mets as much as it helped my bone met/pain. Have you tried massage or accupuncture for the back and muscle cramps.
Loved the suggestion of writing in a diary. I used to and it helped so much in the past.
My happy place is the acres of woods and wetlands right across the street. Especially when wildflowers are blooming. I've not been out as much as I'd like cause lung mets are keeping me in with poor air quality coming from Canada. Enjoy your garden from the shade. Send more pictures. There is a gardeners discussion here too.
Gailmary
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Flowers for you Gailmary. I would love to see your woods and the birds. We have the smoke here too in Idaho. I want to go to the mountains again before there are more fires. Massage just hurts 😞
I hobbled up this ridge and saw cedar waxwing, nuthatch, bald eagle, warbler, grouse.
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mkestral, that view is SPECTACULAR!!!!!! I live my whole life for a view like that! The clouds!!! The mountains!!! Incredible!
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rk2020- i am so sorry to hear your scan news. I hope the next treatment is the winner!.. I learn so much from your trial forays- thank you for doing them.
thinking of you with hugs
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Mkestral, oh how I long to live near some mountains. Thanks for the pictures. Couldn't make out the 2 yellow flowers. The others I have here.
We have scads of birds here too.
I'm reminded I must get back to meditating again. Helps with the stress. Kinda anyways. Icould use it several times a day.
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Bone and CT scans show stable bone lesions except for a suspicious area on my left jaw. I’ve stopped Zometa until we can determine if it’s cancer or ONJ related. Im a bit perplexed because my brain MRI on May 11 knew I was having chin/jaw numbness but didn’t mention lesions in jaw area. The bone scan sees something and says likely new osseous lesion. I was ready to stop Zometa after 3 years anyway. I’ve had 13 quarterly infusions and even if this isn’t ONJ related, I doubt I’ll continue. Unfortunately, my liver lesions are growing VERY quickly. Based on my 2020 bone biopsy, I’m HER2 low. My research oncologist suggested that I get started on Enhertu with my old oncologist right away. Simultaneously, I can get a liver biopsy to verify that I’m still HER2 low and seek a second opinion with a breast cancer specialist next Tuesday. If I am still HER2 low, I think this is the right treatment but the second opinion can confirm that and help me dig into the jaw issue. Honestly, I don’t have that much confidence in my local oncologist nor does she have the contacts/expertise for the jaw issue locally. I prefer to use her just to get infusions and bloodwork. It’s been a long day. I’m exhausted.
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Rk2020 sorry you have had a bad difficult day. I hope you get some answers soon. I'm having scan scrambles with new mets too, supposed to sort it out tomorrow.
Gailmary what beautiful woods!
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rk2020, Oh that news is disappointing. You seem to have your plans in place to move forward and I so hope that the new meds will be the answer. After all that time on Zometa I think I'd be suspicious, too. You certainly have a full compliment of team members with options. I think a lot of HMO's short change patients not allowing more in depth specialists, not to mention denials for the latest drugs to hit the market.
mkestrel, what stunning pictures and views. It's perfection to live in such zen surroundings. I miss our beloved Appalachian Mts. of NC. The skies were brilliantly painted by our master each evening as we witnessed sitting on our from porch.
Wanted to share a pump foam that helps tremendously with bone pain. It's an RX, DICL/BACL/GABA/LIDO/KETA It was given to my husband for severe pain in his arthritic hips. It really helps me, too.
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irishlove,
Is DICL/BACL/GABA/LIDO/KETA available by prescription from most pharmacies, or is it a compounded product available only from compounding pharmacies?
rk2020,
Your in my thoughts and prayers and hope jaw lesion isn't ONJ.
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RK2020
Sorry for the difficult scan news. Sounds like you are already working on your next move. If a liver biopsy allows for a big enough sample, would the Travera test be a possibility.
Hope you have one of your favorite treats handy. I think we need them more for the negative news than the positive.
Thinking positive thoughts for you. In your pocket for as long as you need.
Eleanora
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Oh RK2020, Sorry for your latest scan. I sure hope your next treatment gives you some relief. You've been through so much already, Hopefully the magic drug you take next will get it under control. I'm always amazed at what the MO will pull out of his magic bag.
Gailmary
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