Bone Mets Thread
Comments
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wow Lori so wacky huh?!?!
What a total shock that must’ve been to your system!!
It did seem to me like one day I awoke and my nipple was retracting and my breast looked red, swollen and angry. And the skin on my breast was the peau de l’orange. I think that it started developing over a couple months, but I was definitely in some sort of denial. I finally decided that it was my 40th birthday and I better start adulting and go get myself checked out stat.
Lori - did have any physical symptoms leading up to your diagnosis? Any hints? I feel like I had so many hints but just never thought it could be MBC.
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Nope, I had no hints at all other than things I had chalked up to getting older (I was 53 when diagnosed), a little more tired than usual, the occasional backache. I've never been sick a day in my life, very physically active, I just thought it was my body telling me that I wasn't in my 30s any more. I think my body must be very resilient because even through multiple rounds of chemo, rads, etc. my lab work has never even blipped, which amazes my doctors. It guess it was fighting the cancer all that time and one day just ran out of fight.
Woke up one morning with my right breast twice it's size and radiating heat, purple "bruise" from my neck to my abdomen, a small rash on my breast, pea d'orange (my skin felt leathery), massively swollen nodes in my right armpit and above collarbone. Doctor took one look at me and sent me straight to the hospital, my heart started acting up while I was being admitted and I ended up in the cardiac ward before they even transferred me to oncology. I had driven myself to the hospital and had to call my husband to tell him I was being admitted!! My blood pressure and oxygen levels had dropped too low and I ended up spending a week in the hospital while they did the punch biopsies and staging scans. While I was in the hospital the cancer broke through the skin and ulcerated, and a few days later I lost use of my right arm when the cancer spread into the brachial nerves, There is nothing scarier than being in the hospital and watching the cancer spread right before your eyes! I was on IV morphine for the pain, saline for hydration, antibiotics, and a bunch of other stuff I can't even remember. They told my husband they didn't think I was going to make it. After a week I asked to go home and everyone acted like I was going to home to die. Met with oncologist and he told my husband that I had maybe 60 days if chemo didn't work immediately and he recommended calling the family in. I started chemo the next day and lucky for me I had an amazing response with the first infusion, but it took me 6 months to climb out of that hole. It all happened so fast it made my head spin.
Couple months after I finished that first round of chemo and was on targeted therapy (H&P) for maintenance, it started right back up in my skin and in no time at all was spreading fast again and this time it was chemo resistant. It's been resistant to multiple lines of treatment, when we find something that kicks it back once place, it just pops up somewhere else. Guess I'll be waging an all out war till the very end with my sneaky, stubborn cancer.
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it is so interesting about how you’d never been sick a day in your life and yet here’s this crazy disease process attacking your body!
Just goes to show that when we think we know something, we really don’t know a whole heck of a lot!
I’m rooting for your sneaky cancer to stay at bay too
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Philly,
I had no symptoms for almost the entire 10 years until my back started hurting. I went from late December '17 having a back ache and by March could barely walk. It took that long to find out it was bone mets. I originally went to a back doctor and he diagnosed me with a collapsed disk, by x-ray. What the x-ray didn't show was the large tumor pressing on the disk to make it collapsed. It wasn't until I could barely walk, and my husband and I begged, that they finally did an MRI, which showed the large tumor. Then it was a PET scan which showed tumors in every bone of my body from my skull down to my thighs, my entire spine was compromised, every rib, my collar bone, it was crazy.
Doc said the cells were probably there on my bones for the whole 10 years, but they were dormant so to speak, but when they decided to wake up, boy did they.
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Ten years BigPeaches? That's crazy! If only we could figure why for some of us they don't cause any trouble for years and then all of a sudden wake up and go wild, but others have symptoms at the first start of a bone met.
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yes exactly! I would love to know if mine were growing for 10 years or rather went wild and exploded all of a sudden.
I know this isn’t true logically, but from 2008-2010 I was in a relationship with a man who unbeknownst to me was struggling very deeply with borderline personality disorder. I was in a constant state of walking on eggshells and confusion about his emotional responses and needs. We owned a house and a business together and had two dogs. I also got pregnant and didn’t keep it (I couldn’t imagine a life connected to this man who was so incredibly screwed up and I wasn’t prepared to be a mother). The break up was also a major wake up for me from living in deep denial about this person and who he was, and incredible shame that I spent those 3 intense years with someone like that. He caused me to isolate myself from my dearest friends and family, always taking a personal issue with one person or another, that I kept trying so hard to understand. How could this man that I was so deeply in love with not get along with my loved ones?
Anyway - I feel like that whole experience was the start of the cancer growing inside of me. I know this is totally whacky to say but I cried and cried for months and months when we broke up. The realization of the denial in my whole being, body and soul, was crushing.
I would love to know if I am right. And I want someone (or science) to prove me wrong. Does that make sense?0 -
I can completely relate to your story Lovefromphilly, I experienced something very similar with my own borderline....yes, walking on eggshells...that's what was like for four years...I wish I had thrown the bum out right away!
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Frisky we can only hope to learn from our experiences, right?
I think that the common result that happens to many people who've been involved with someone who unconsciously exhibits all the traits of BPD (and by unconscious I mean that the person with BPD has no idea that there is an issue and has yet to seek professional help), is that we can find ourselves feeling a level of mistrust of ourselves.
So for instance, ever since then, I can't help but wonder HOW did I block out the signs?? HOW did I go into such complete denial? I was so madly in love. Like the most passionate love I have ever experienced in my life. I have not been able to recover from the wounds of that relationship enough to be able to be in a serious relationship again since then. And it has been almost 10 years now.
I have been in relationships since then, but I always push the guys away from me. Not trusting myself that I am not seeing something obvious or less than obvious that I should be running away from, not towards.
I work in the field of caring for others. I take care of people. I am a caretaker by nature. It gives me energy and fulfills my heart. I love having a career where I can direct this need to help others as my business. It is rewarding. People come to me for care!
Those lines get blurry when it is a partner that I want to care for too. And now with MBC, and after that terrible relationship, I don't have much in me anymore to care for a partner. I care for my family, my parents, my best friends and my patients. And I am now caring form myself much more deeply than I ever have, thanks to MBC (some weird joke of the universe?). I know it may sound weird, but I am trying to CARE LESS. It gives me such a break, so much relief!!!
I have nothing left to give a partner. I date, and I have a date next week. I don't think the guy is perfect. But he is kind and loving. And he gives me TONS of space. Maybe I found a good one? I want to break down my emotional wounded barriers, but again, the energy is not there to give.
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i hear you Philly and I can relate 100% down to all the details....what I discovered, in my fifties, was that I needed to focus on myself in order to understand my attraction to dysfunctional types. What I found out, through many years of intense feeling therapy, was that regardless of my attempts at changing the outcome, I had been dating the same personality. What drove my choice of lovers was the need to resolve a childhood trauma.
Once I accepted this about myself, I used the work by Alice Miller—The Drama of the Gifted Child—to figure out, like a detective, my whole emotional history, from birth on. Basically, I had to learn to feel again. When we're vulnerable, when we're powerless, we stop feeling because the pain is too much. We disassociate from reality. Unfortunately, the majority of people never wakes up...they can't really feel, and they don't know it..
Once I was able to understand the nature of my real self, I completely lost interest in the emotionally unavailable dysfunctional types, because I no longer was emotionally unavailable myself. What I was doing while loving the borderlines was to reproduce and fix my first dysfunctional relationship, which of course, was with my mother...
It always boils down to mothers doesn't it?
I've been writing a book about my story....because I had the luxury of examining my life on a daily basis for six years...Socrates would have been proud....and like you, regardless of the cancer, I've never been happier in my whole life....and I've had a very creative exciting career..
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Peaches, Frisky, LovefromPhilly and everyone else - I so wish we could discover something that made sense. I also wonder if I was stage 4 right from the get go as an xray and ct scan 6 months post treatment showed mets in my spine that turned out to be 'not active' , I had spots on my liver, not active as well, despite mastectomy, chemo and radiation, less than 4 months later I have stage 4 - hmmmmm I too, wish I knew...though in the overall scheme maybe it only matters to me?!
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Can anyone tell me what an inactive/healed bone met would look like on various scans?
I have a lesion on my left proximal femur. This was seen as an area of increased uptake on a bone scan 5 months after my last chemo. It also lit up on a PET scan but not excessively bright. The MRI was inconclusive so we are watching it. It is described as a central lucency with a sclerotic rim.
I really feel this could be a met that was missed at my initial diagnosis that healed during my lengthy treatment (taxol, AC before surgery, cisplatin and Xeloda after surgery) and now that I'm off treatment it's showing some activity.
I thought most benign bone lesions have pretty specific characteristics and can usually be identified fairly easily, and they just have no idea what this is. I don't like knowing there's something on my hip (even if it's not a met, if it's something that could eventually lead to a fracture, I'd like to know so we can correctly manage it).
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Following up on Pesky's question, I have never been diagnosed with bone mets. Last year, I had 3 nuclear bone scans, and each time, any things lighting up were identified as arthritic changes. So in May, when I was diagnosed with liver mets, my scans were super scrutinized, and the word "sclerotic" was used. My new MO at Hopkins said -- did you have bone mets that healed up? Were you treated with something else? I was dumbfounded. Now I see in my treatment notes on the patient portal that she has said "possible bone mets." Huh? The learning curve on all of this stuff in INSANE.
Thanks for anyone who can answer either my or Pesky's question.
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Pesky - I'm *hoping* to find out the answer to your question this week. I have a bone scan and CT scan scheduled to check on a met to the spine. My alk phos value, which is kind being used as a tumor marker, was finally normal a couple of months ago, so I'm very hopeful. My MO said that "schlerotic" would likely be the term used if things were no longer active.
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philly ,
I am absolutely convinced my bone mets were there for almost ten years before dx.
I am also absolutely convinced the trauma, death threats etc that I experienced in my job was the cause, or at least the last straw, for developing this cancer.
I had no breast lump. I could have had a mammogram every week and it would have shown nothing. I had a legitimate pectoral muscle tear and the lump popped up near the collarbone instantly, having been hidden for God knows how long. I ignored it as the torn end of the muscle. After the injury healed it didn't hurt. Didn't grow. Nothing for three years. Then, within five months I went from healthy person to near-death while docs and I thought I had asthma.
The day the lump popped up, I know it wasn't there in the morning because I rubbed in sunscreen all over my chest area. After I mowed, and the self-propelled mower yanked my one arm almost out of its socket, there was the lump and bruise.
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This is exactly how I think my lump came to the surface! I had been exercising heavily and my chest muscles were sore from trying to do too much with weights at the gym. I just happened to put my hand up to my chest while I was looking at my computer screen and I felt something. The lump was right at the perimeter of my breast, upper inner quadrant, if it had been there growing steadily I would have felt it before that day. I would have noticed it while putting my bra on.
I first thought the lump was related to the sore muscles, but I did go get a mammo right away, just in case. It was 2.1 cm and appeared so suddenly.
My guess at the time was maybe blood rushing to the muscle or a sudden rush of oxygen could have made the tumor grow "overnight" like that. When I went to the exercise classes at the cancer center, I asked the exercise physiologist if that were possible. He said no, probably not, but that I could have torn the muscle and that allowed the lump to come to the surface.
No idea how long my cancer was "cooking". I did do self exams but had been neglecting mammograms, which, yeah, may not have detected it anyway if it was under the muscle. I also have dense breasts. I guess since I had bone mets it had been there a while.
I also wonder about weight loss and the release of estrogen when you lose fat. I don't know if my weight loss that year could have caused sudden growth in a small tumor that had been growing slowly. My tumor was 97% ER positive.
About stress and trauma, I was going through a lot of turmoil around the same time as menopause. I have fibroids and I swear when I would get upset I could feel those fibroids expanding. I did have a uterine biopsy around that time, which was negative.
Stress can supress our immune defenses and so could surely impair our bodies' ability to kill off those abnormal cells when they first appear.
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Thanks, Jsniffs, good luck at your appointment and I look forward to hearing what they tell you!
Funny, my alkaline phosphatase has been steadily increasing since I finished chemo last November. But it’s not super high. At last check it was around 180 (normal range in the lab goes to something like 137).
My bone lesion has s sclerotic rim but the lesion itself is described as a central lucency so it’s not entirely sclerotic
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Totally agree with you ladies that stress can cause our immune systems to get over loaded and not be able to deal with the cancer.
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There is a German Dr. "Hammer' who has written a book about this topic. His son was Killed (forget the details) and not long after he had cancer. I don't think that his work is widely accepted by the medical community but, it sure makes a lot of sense to me
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@pesky904 - So I received the results of my bone scan and CT scan. The bone scan has decreased uptake in the area of my one bone met, and the CT scan says, "new sclerosis of the lytic disease likely reflects healing." I haven't spoken to my MO yet, but I'm assuming that things are still in the process of healing and not quite healed completely (which is what you asked). Maybe someone else can chime in?
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Hi,
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The Releaf capsules also seem to help stimulate my appetite.
Stacey
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hi everyone,
I'm new to this forum, but unfortunately not to cancer. I was originally diagnosed 4 years ago, did chemo and had a bilateral masectomey and had been what I thought was clear for 3 years. In December 2018 I started having back pain that moved to my hips to the point where I couldn't walk and at the same time had horrible anemia that No one could explain. I was getting blood transfusions inpatient and they finally did a CT scan and bone scan. Surprise, my hormone postitive breast cancer had come back as triple negative bone mets. It makes me wonder if the triple negative was there the whole time and not being treated. As many of you have shared I had a VERY stressful year leading up to this diagnosis so maybe it's related. I can't say I'm happy to be here (cancer, but I am happy and grateful to have a community of people who understand.
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Paulinek
You have a story similar to me, for the last 6 months I have had issues with anemia. How did they determine you now had triple negative? My oncologist wants to do a bone marrow biopsy.
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Momdin they did a bone biopsy and bone marrow biopsy. The disease had also spread to my marrow and was causing the hemolysis. It has been getting better with chemo so I’m down from two transfusions a week to one. The triple negative diagnosis came from the bone biopsy.
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paulinek- my MO mentioned that sometimes getting tumor markers from bone is hard and not always accurate (e.g. markers can switch to negative). Did your MO ever mention that might be a possibility?
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Jsniffs- not initially but I had a consult at memorial Sloan Kettering and they re-examinesd the bone for his very reason. They confirmed triple neg
It’s interesting though that 3 MOs can’t give me a good reason why it would have changed from the original cancer
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Paulinek
I'm probably going to ask a million questions but what chemo are you taking? Is it a pill or transfusion?
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Momdin - ask away but I’m not sure how many answers I have. I started chemotherapy and immunotherapy infusions in May. Abraxane and Atezolizumab. I am also still getting blood transfusions on the same day as chemo
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Paulinek,
In case you have not followed the story of Barbara Bigelow, her stage IV cancer was picked up about 4 years ago, and had also mutated from ER-positive to triple-negative. However, they did not know this for quite awhile (like a year!) because there was some problems getting a biopsy ( she first developed a tumor in her kidney), so she failed Ibrance-Femara and a trial then finally got moved to a clinical trial with immunotherapy and chemotherapy. She had a port installed, which became slightly infected, and so she ended up in sepsis in the ER (it was touch and go for awhile as all of her systems failed, fever could not be controlled, moved onto dialysis, breathing with a respirator, etc- but they were able to save her). And that stress fully cooked the cancer which is now totally gone, she's been on nothing for the past several years.
Obviously they know now much more nowadays about how to handle immunotherapy. Apparently her oncologist said they have had the strongest responses to immunotherapy in cases where the cancer had mutated from ER-positive to triple negative, something about the genetics must be different. Anyway, if you dig through her older posts from 2016-2017 in the link below, it is a fascinating account. We'd all like the same outcome, but through a different route...
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- Cure-ious, your post about Barbara Bigelow lead me to her blog. I perused her writing enough to get an overview of this courageous and talented individual. What experiences she has not only endured, but in a positive sense, has also enjoyed, in the last five years. Immunotherapy research will be advanced because of her. If Dana Farber picked up the phone and called Ms. Bigelow requesting permission to study her cells, then that institution, or its researchers, must have concluded that her profile uniqueness is research worthy to the max. We will all benefit once that trail of information has become a highway of treatment.
- On another note, it is fascinating to think that such incredible stress that her body underwent has led her to having no active treatment forher MBC.
- Thank you for writing and publishing this post.
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Amazing story, but a horrible way to get rid of horrible cancer. Reading this - "fever could not be controlled" I am thinking that had something to do with it, since it is said that cancer cells do not survive heat very well. Isn't it true that fever is the bodies way of trying to rid itself of infection/invasion?
Good for her for surviving such an ordeal.
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