Bone Mets Thread
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Bigpeaches, that’s great news
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great news BigPeaches
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Great news, BigPeaches!
FosterKitty, I am not on any hormone inhibitors either. I think it's because when I was first diagnosed Stage IV 6 years ago, they gave me something that seriously killed all of my estrogen. I can't remember the name... it was a HUGE shot that I got several times for about a month. Put me right into menopause. Anyway, after that my oncologist said my estrogen was at zero. I did try a few of the hormone inhibitors but had significant SE's with all of them, so she thought that it was better just to stop. She really felt like it was the Her2 + that was primarily driving my cancer, also.
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hi Andrea - thank you for sharing your experience with your shoulders and arthritis. That sucks about the pain so being bad sometimes that you can’t lift your arms
I can completely empathize with this as I am 41 and I think that this is arthritis too (we shall see what the scans say!) and I sometimes can’t sleep on my sides because my shoulders hurt so badly. I also can barely lift my left arm above my shoulder in my dance and cardio kickboxing classes. It leaves me wondering if the AI has caused some serious arthritis now in the joints that I have sustained injuries to in the past (rotator cuff tear as well as serious neck injury from a car accident that happened right before I was diagnosed last year). Right thumb is basically out of commission as I am a massage therapist and acupuncturist and have probably overused that thumb for many many years now. I did have what seemed like carpal tunnel but I worked through that with exercise thank goodness!! I am hoping to keep working gently through the pain until it gets better (fingers crossed!)Happy Halloween everyone!! Eat lots of yummy candy (if it suits you!!)
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Thanks all. Maybe I am not good in saying what I am thinking. There is a model in my MO's office of a bone with osteolytic ( swiss cheese appearance) and another model showing osteoblastic ( sclerotic ) thickening. Very visual. But why do the scans not show it visually like that?? We talk about " areas lighting up " and in my case, areas of "increased radiotracer activity", but cannot just say bones are osteolytic or sclerotic. Show us pictures of what our bones look like- thick or full of holes.
Also, LovefromPhilly, maybe it is true that I have been on treatment of Letrozole and Ibrance for the last year and maybe I am NEAD - woohoo - but cancer is not curable. So why would it show " no definite evidence of metastatic disease". This sounds like I don't have bone mets. Like I am cured. Not that the meds are controlling it.
Maybe I shouldn't have said what I did, or how I said it, about bone-only met women. I just meant if I would have had the bone scan first, before the PET showing the osteolytic lesion, or instead of a PET, would my MO have diagnosed me with bone mets or just the liver met. And if I wouldn't have had the liver tumor, and the bone scan shows no metastatic disease then I would not have been Stage 4 but Stage 2 in the breast only.
The scans ARE important in our labeling of our Staging and our treatment plan. But I feel I have lost trust in what the scans say.
I will keep you all updated on what the MO says.
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Hi Candy,
I understand your frustration to some extent as I also get mixed messages from my scans. Each type of scan has its benefits and limitations which is why oncologists typically use a multi-modal approach.
Personally, I don't worry very much about the bone mets with the exception of when I am trying to identify the source of pain (I have been treated twice with radiation to alleviate pain from my spinal/hip mets and am scheduled for another zap next week). Ultimately bone mets don't place us in imminent danger (I am on a bisphosphonate to reduce the chance of breakage) but it can be helpful to use them to track progression and the effectiveness of treatment in the absence other mets. In my mind, it's more important to monitor the liver and, in my case, my pleural mets.
I hope your MO gives you the details you need.
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Big peaches, it is great that your markers are down. We all need some good news these day. Mine went down las pt spring and they say the Mets are stable now
Babs so loved her beautiful family. I loved that she flew to Paris to meet her grandson. She was very kind and inspired me on some very dark days last year. There is something about all of you here that makes me realize I am blessed to have a place where I can find some peace of mind. I’m going through a stable period now but experiencing lots of pain. I get frustrated that I can’t do what I want. I got a spinal epidural this week. Went through roid crazies again. I hate that. But I have a new grandchild on the other side of the country. I will get there soon to meet this precious gift.
Every so often I have to look over old scan reports and try to make sense of it all. Crazy that I sometimes am checking over and over that maybe they were wrong or will tell me something new.
Lita I thought today that I’m sick of all this and now I read your post and I’m embarrassed to have thought that. You are in my prayers . You bring light into this world. Dressing up with your chemo nurses..priceless
Maire
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I went for scan results and according to report there has been no change in my lumbar met, and no other mets in my back or hip area. However, this pain is still off the charts! I honestly do not understand. But yesterday when I went to MO, I could barely walk, and apparently it was obvious how much pain I was in. He increased my meds. Admittedly I’ve pretty much slept since I got home, but when I’m awake the pain is still there. It’s starting to feel as if my hips and pelvic bone are going to rip in half
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Sadie, how are your lung mets? Did something work on them? I see you didn’t mention them in your last post.
Unfortunately my scan revealed 2 spots in my left lung. They’re setting up a biopsy to confirm it’s mets and not a new primary because apparently the placement of one is indicative of lung cancer instead of mets. I’m so depressed and at such a loss for what to think..
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Shelia Marie
I'm new on the boards, so I really don't know you. But, I deeply feel your pain and confusion. I'm praying for you and will continue to do so.
I'm having my first bone density test tomorrow to diagnose the pain in my hip/fermur area. I'm of the opinion they won't find anything because the pain is in my muscles. But we'll see. Hang on. Sue
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Hi SheliaMarie,
I never had tumours in my lung per se. When I was diagnosed stage IV it was due to pleual mets or the lining of the chest cavity. This led to a LOT of fluid production in my right lung. I had a thoracentesis done a couple of times but the fluid accumulated again very quickly so they inserted a PleurX Catheter which allowed homecare to drain the lung twice a week. I had it for about six months and for most of that time they drained off almost a litre of fluid each time. I then ended up with a lot of scarring (adhesions) which trapped the fluid in small pockets. It's been over a year since they removed the catheter and I still have some fluid but nothing like it was. The pleural mets are still there and, during a period of progression, extended down into my peritoneal lining. I’m not convinced that all is well with those mets but there is no evidence of progression on the scans so I just carry on and try to ignore the twinges.
I wish I knew what to say about the spots on your lung. I can say that I have known a number of ladies who had spots that turned out to be benign. Sending positive thoughts that this is the case for you as well.
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Hi everyone, (cross posting from Ibrance thread here)
I am popping in to report that my MO just called and my CT and bone scans that I had on Tuesday are clear and he has declared me "stable" since my last scans over a year ago! Very exciting!
The only thing remarkable was that the bone scan dye was taken up more than on the other two scans I had last year, in my left hip area. He and the radiologist believe this is a phenomenon flare that is part of the healing process. No worries unless I start experiencing pain or any other issues.
I am clear for now and continue to be positive and optimistic for the future!!!!!!!
Hope everyone is doing and feeling as well as can be on this first day of November. I am gonna celebrate and eat some yummy Indian food for dinner tonight!
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Philly, that is fabulous! The best news! Congrats.
Sunset
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Tumor markers normal and I'm scheduled for pet/ct scan on the 14th.
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JoE777, normal tumor markers sounds good.
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thank you Sunset!!!
I am continuing to celebrate every day!
What a wild wacky journey!!!!!
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Warmed by the good news coming from JoE777, LovefromPhilly, and Big Peaches.
SheilaMarie, honey, so sorry to hear about your pain. One of the sucky parts of this journey is having severe issues for which there seems to be no root cause. It's beyond frustrating to hear "well, it could be ...(fill in the blanks)" and on to treatments that may or may not work. Let your docs hear your advocate voice clear and loud until you get some relief and answers. As to spots on lung, I'll be praying for an easy biopsy and good news.
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Philly - so happy for you! Big sigh of relief! Now we just need to figure out what to do with the pain in our shoulders.... I forgot to mention that I also have trouble sleeping on my side. The pain at night wakes me up, so I either sleep on my back or get limited sleep.
SheilaMarie - so sorry you are going through this. I firmly believe that the worst part of this journey are the stretches where we don't have the answers and we are in limbo waiting for results and next steps. I'll be thinking about you.
Andrea
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hi, everyone. For about five months I've been having persistent rib pain. It feels like a constant ache, can be slightly sensitive to the touch, and sometimes feels like it's burning. I mentioned it to my onco in August and she ordered an x ray. It came back clear.
I work as a nurse so I attributed it to that. I have been home for fjve weeks recovering from flap surgery and thought the pain would go away with rest but it has not. It hasn't necessarily gotten worse over the last several months but I would say it burns a little more.
Those with rib or bone mets, how did they feel? Did they show up on x ray?
I see my onco in a couple weeks and am trying to figure out if I should be pushing for more scans and how scared I should be. I'm about a year out of chemo and trying to move on with my life, but I had a really aggressive tumor and it's hard not to worry. Especially with this constant dull pain. Any thoughts? Thanks so much.
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CIW, I would push for a CT. Before my stage IV dx, I wasted months of testing for other things, including having at least 2 x-rays. When I finally got a CT, the mets were small but clear. X-rays didn't pick them up. Your rib pain may very well be unrelated, but a CT will answer that for you. I can't speak to the pain part, as my discomfort was focused around the lung mets. Others may chime in here, but I understand bone met pain is a constant ache or gnawing feeling, sometimes worse at night. Of course you're worried, but the timing is good as your MO visit is soon. Good luck and keep us posted.
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CIW, if you had rads in follow up to your mx, it could be related. But any pain continuing for more than 2 (or 3, depending on your doctor) weeks should be looked into with at least a CT. I know that on the side where I had rads to the breast area, I have pretty constant rib pain that often burns and aches. Good luck friend. Let us know how it goes.
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Chef47,
Have you had a Lyme test done? That could explain the weird fevers.
I hope whatever it is can be resolved soon. It’s hard enough managing our day to day MBC, let alone having something else to deal with.
Prayers for you forthcoming.
Lauri
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Dear Ihopeg,
So sorry about your diagnosis, but you have come to the right place for support. We have all been there, and totally understand the fear and confusion this disease can bring, especially when you are first diagnosed. Hopefully, you are working with a good team of doctors who can help with pain and numbness. I'm not familiar with leptomeningial disease, but I do live near you, so I know you are in an area with excellent doctors (Penn, Bryn Mawr, etc.). I also have a secondary disease called Sarcoidosis, and I found that changing my cardiologist, pulmonologist, and oncologist into a common network has been very helpful. I call my oncologist the “Queen Bee" as nothing happens (no drugs, scans, etc.) without her blessing. This has worked well for me.
Take care, and reach out whenever you need support.
Hugs and prayers,
Lauri
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Good Evening Everybody, just advancing from the Not diagnosed but concerned Forum as my 10/31 DeepIliacBoneBiopsy Path report is in and Positive for Maligant cells; Metastatic Adenocarcinoma, consistent w/breast primary (Gata-3 Positive, appropriate reactive control).
ER+ (80% of tumor cells w/intermediate to strong nuclear staining) [OT * was ER+ @ >95% ALLRED 8]
PR- (<1% of tumor cells w/weak nuclear staining) [OT was PR+ @ 75% ALLRED 7]
HER2- by IHC 1+, not over expressed [OT was also <1%, score of 1+ by IHC]
*Original Tumor
Appt set for 8am tomorrow to speak with MO re: results and hopefully nail down & start treatment, apparently I didn't kick my Stage1a turmor's butt hard enough in 2011. It appears that the hormone receptors have changed a bit now that it has begun to attack my bones. My current CancerCenter is part of the MDAnderson 'Network' so I hope that helps in mapping out the correct/most helpful treatment plan, friends/family keep advising me to get a second opinion . . . but I'm not sure where I'd turn if my current Onc. I sent already bouncing the treatment plan off of MDAnderson? I suppose once I know more of her plan I can make a selection for second opinion regarding treatments. I'm sure I'll be back to discuss the various treatments & options and gather feedback from those 'in the know'
Thanks for listening
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RandyRat - so sorry to hear the news..it's not at all a fun diagnosis to get. I got the same diagnosis one month back and I've learnt to take it one day at a time and read up about your specific situation. Knowledge is power and the more you know what to expect, the better off you are.
Seems like you are in good hands with the Dr. Situation if he is getting a second opinion from MD Anderson. There is lots of info about newly diagnosed stage IV in this forum that is helpful.
All the best and keep us posted on how things are going. Sending prayers and good vibes your way.
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RandyRat, so sorry you're here, but hope you find information and support in this community. You're probably feeling overwhelmed about now, but trust that things will settle down once you've developed a treatment plan. As for second opinions, maybe raise any questions you have with your MO tomorrow, and if you aren't satisfied, think about it then. But the choice is yours and yours alone. Good luck and let us know how your appointment goes.
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This staying alive shit is hard work. Between the doctor visits, the scans and tests, suffering from side effects, and needing to rest, I feel like it's a full time job. I'm tired. Just sayin...
Sunset
Randy Rat, don't let my post discourage you. Just having a bad few weeks and needed to vent. That happens here sometimes. It's all good.
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Welcome Fosterkitte
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my stage 4 started with burning rib pain that got worse and worse. X-rays didn't pick it up but a bone scan did. Extensive mets to ribs back (3smashed vertebrae) hips back of skull. I was in denial for months as I was 8 years out and was too scared to face bone scans. I thought I had costocondritus . I have been diagnosed for 2 years now . I would ask for abone scan
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"This staying alive is hard work" I like that, because it's so true. I have to remind myself sometimes that I promised I would fight, so I keep going.
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