Bone Mets Thread
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Here’s the thing about staging terminology: my situation should officially be called ‘stage II with metastatic disease to bone’. Technically, the only real Stage IV gals are the de novo group. Also, it has long been claimed that finding mets earlier does not prolong survival. Statistics are funny that way...
As far as physical therapy my first round was in home following last year’s big surgery - a five level lumbar fusion. The goal was to get me off the walker, to a cane and finally ambulating independently which took a couple months. I was then referred for more PT after I graduated from wearing a brace. For that, I chose a local orthopedic clinic and was assigned to a spine specialist. We worked on strengthening and endurance. Those sessions were terminated when I needed to have another procedure with more radiation.
Since the spring, I have gradually become stiffer despite doing water exercise three times a week. So, I had an evaluation and was surprised to see my balance was weak. This therapist did a more thorough assessment than the other two and is having me practice the “perp” walk: heel to toe as if the police had pulled me over for erratic driving. I’m also supposed to stand on one leg for half a minute without keeling over!
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Pain can also be the treatment working
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vlnrph or anyone. Could you please explain why its been said that finding mets earlier does not prolong your life. Why do we bother to treat at all then? Just to control the pain?
I just dont get it.
GAILMARY
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I am also very curious as to why finding Mets early does not make a difference as to finding Mets late,especially now as I’ve been in touch with another young lady who is also triple positive Mets to the spine just like me.
The difference is that her met WAS the size of a 20c peice (I’m from South Africa) which is really really really tiny.My Mets is probably 5/8 times bigger then that,wouldn’t my lesion be bulkier and much more complex ;how is she not at a “ better”stage 4 than myself? I know there are so many factors to take into concern but still.
I am currently on the same treatment plan she was 3 years ago.Her current status is NEAD.
But as I’ve learnt no two cancers are the same and there are a lot of grey areas when it comes to why some people respond better and why some people don’t
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my poking around online leads me to believe the statement that 'early detection does not prolong survival' came from a study done in the early 1990s. Before tumor markers and ai's etc. But it seems records are not kept to determine this. What is true though is that we are surviving longer then before and all the new research is very promising. Just what I need to hear as my friend just entered hospice. Turns out the treatments were too much for her liver. So were still dying from the treatments. DAMN
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Yes, gailmary I think that is where the idea started. Many of our oncologists learned that during their training and so probably continue to apply that principle. Even twenty years later, we are only beginning to refute that claim for instance in this more recent article Br J Cancer. 2015 Mar 3; 112(5): 809–818. Smallish numbers which means they suggest further work be done...
Also, data collection in the US regarding BC metastates is abysmal. Most of us don’t get counted, let alone followed in order to elucidate outcomes. We need to rely on other countries which have more comprehensive medical history available on their patients.
Sorry to hear about your friend in hospice. Another case of the cure being worse than the disease?
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I read an article over a year ago. The author stated that some 42,000 women die of breast cancer each year and have been dying at that rate for the last 20 years. Sounds like there's no hope. Well I looked up the U.S. population from 20 years ago and compared it to today's. There's been about a 1/3rd gain in population yet the death rate has stayed the same. Hmmmm.
I think the various funding organizations that want $$ paint as dire a picture as possible. Look at leukemia today, a 90% survival rate for the main variety. I's hard to fund-raise with a 90% survival rate.
Wife's back home from the hospital and back on Halavin.
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I have read elsewhere on this forum (and believe) that early detection can enable a better quality of life. For some that maybe more important than survival.
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When I was first diagnosed (well, second diagnosis actually) last year, my then doctor told me I was stage IV. He has since retired and I have a new doctor, who I love. I got my blood test results Monday (my tumor markers are way down, yeah!) and at the top it says "Stage IIA".
I thought once you were diagnosed stage IV, you are stage IV, can you be downgraded? I have my Herceptin / Projeta treatment Friday and will ask, just don't want to be disapointed when he says it was a clerical error or something.
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Why not, you can go in and out of NED.
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BigPeaches, I haven't heard of that kind of restaging, I too thought once classified as Stage IV always that, but I'll be very interested in what you find out Friday. Best wishes.
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As I described above in my post of 8 August, the only true stage IV gals are the ones diagnosed de novo. I am actually now stage II with metastases to bone. Confusing terminology but more accurate, really...
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vlnrph, I hope that's what my doctor says, I'll let ya'll know
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Here’s the staging terminology explanation from the American Cancer Society:
An important point some people have trouble understanding is that the stage of a cancer is determined only when (or soon after) the cancer is diagnosed. This stage does not change over time, even if the cancer shrinks, grows, spreads, or comes back after treatment. The cancer is still referred to by the stage it was given when it was first found and diagnosed, although information about the current extent of the cancer is added (and of course, the treatment is adjusted as needed).
For example, let's say a woman is first diagnosed with stage II breast cancer. The cancer goes away with treatment, but then it comes back and has spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones.
If the breast cancer did not go away with the original treatment and spread to the bones it would be called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. Stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.
This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.
At some point you may hear the term "restaging." Restaging is a term sometimes used to describe doing tests to find the extent of the cancer after treatment. This is rarely done, but it may be used to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often the same tests that were done when the cancer was first diagnosed (such as physical exams, imaging tests, biopsies, and maybe surgery) will be done again. After these tests a new stage may be assigned. It's written with a lower-case "r" before the new stage to note that it's different from the stage at diagnosis. The originally diagnosed stage always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, except in clinical trials.
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wow, vlnrph - this is crucial information that I never knew! Thanks for all your efforts to research and share this with us about staging, it certainly causes me to re-examine how I look at all the studies I’ve previously reviewed. No wonder everyone tells us to ignore the stats we find online it’s all so confusing!
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Vlnrph, that's interesting and I never really thought about it that way. I consider myself Stage IV de novo, but I was initially dx as Stage IIIA until two weeks later, before having any treatment, and they found bone mets with a PET. Although my MO said I was technically Stage IV and no longer considered curable, she was not changing treatment from the plan for Stage IIIA and would treat with curative intent. She prefers to call me metastatic.
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Yes, I was Stage 2 for about four weeks! Can I still be Stage 2?
Not quittin Herceptin, though.
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Olma, maybe not, and the same for me. I re-read the ACS staging info and it says Stage II and metastatic if after successful treatment the metastisis is found or Stage II and metastatic if tx fails for Stage 2 and it spreads. Oh well, since I had no tx before mets, I guess I am de novo after all!
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Ok, that makes sense, at least in some ways it does.
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Doc said I am stage IV and will always be stage IV. Oh well, after reading vlnrph's research, I'm not going to worry about it.
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I have a question for the beehive. Does anyone know how long bone metastasis takes to start growing?
Like how long does it take to become visible on scans from when it starts growing?
Thanks!
Philly
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I think everybody's different of course, I was originally diagnosed in 2008, went thru all the treatments and was trucking along until my back started hurting in 2018.
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I was always told they can only be seen once they are 2mm in size...
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Thank you for responding bigpeaches and lily.
I wish I knew what my body was doing. This is the big mystery getting diagnosed de novo back in 2017 with extensive bone Mets.
I don’t know why it is important to me, but I would love to make sense of how long the cancer was growing inside of me.
Big Peaches when your back started hurting in 2018, do you know how big the bone Mets were and did you have multiple ones?
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I am not sure if this is standard protocol, but I did not have any scans with my BC dx back in 2016. I had biospy, mastectomy, chemo and rads and was supposedly good to go. Then 5 months after that I had pnemonia which resulted in xray and ct scans which indicated bone mets. This was the start of bone mets, but the initial lesion was not that big - I can try to find out the actual size...once the metastasis was determined I go for ct and bone scans every 3 months and so far am stable, so mo MO is thinking to drop to every 4 month or even 6 month scans at the end of this year,,,
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philly,
After I had back pain in Fall 2018, I had a bone scan which showed nothing. Pain thought to be from recent radiation. I had a routine CT scan in March 2019 before dr would ok port removal. A nonspecific lesion was noted on L2 and a 2 month follow up suggested. Later MRIs prompted the biopsies that showed cancer. In one of the write ups, the radiologist noted the lesion had grown over the course of 2018 but wasn’t there in 2017 based on my other scans. This was the first anyone mentioned it (!!!) and my dr said now that they know where to look, they reviewed that area in previous scans and noted it’s growth over about 18 months. Now my lesion is pretty substantial and pressing on my spine so I’m getting radiation then starting Xeloda. So I was happily coexisting with my bone met for several months at least until it caused pain. And I’m triple negative, which seems to grow faster than some other types. I also wonder how long it took the bone met to be noticed and if in fact I was really de novo?
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well, although STAGE I cancers are less likely to metastasize than stage III cancers, it seems that the prognosis is no different after mets are discovered, ie, it matters not if it the primary tumor was larger or smaller upon detection, some micrometastases had already happened. The GRADE of the cancer is an indication of how aggressive the cancer is (grade 1 is slowest growing) however metastatic cancers mutate in various different ways to escape the drugs we hit them with, so how aggressive it is becomes an ever-changing situation.
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Philly sounds like you're like me - I had extensive bone mets throughout my skeleton when I was diagnosed Stage IV de novo too. My oncologist said they were likely growing for years to be that extensive. I have IBC which doesn't show until it's very advanced anyway, I understand that part, but I still don't understand how my skeleton could be riddled with bone mets (too many to count according to my MO) and I had absolutely nothing to indicate there was a problem, beyond a few aches and pains and feeling more tired than usual, all which I just attributed to growing older. I see people talking about intense pain from just a single met, how did I not have any sign that they were spreading throughout my skeleton?
I have a super high Ki67 and every time my cancer starts spreading, it grows like wildfire. That's the only thing I can think that could cause them to be so extensive without any warning signs.
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oh pooooo I just lost a long comment.
LoriCA yes very similar stories!
My symptoms started about three years prior to my diagnosis and included: severe fatigue, anxiety and panic attacks. I had back pain that I couldn’t get on top of and also very abnormal for me. It got so bad I went to an urgent care after seeing many chiropractors and massage therapists. I asked for imaging and the docs dismissed me as having too much stress from medical school and gave me a muscle relaxer. I also had a lump in my breast that was diagnosed with mammogram and US as a fibroadenoma in 2011. I kept thinking my fatigue and anxiety were due to “adrenal burnout,” a term that gets thrown around way too loosely in naturopathic schools (true adrenal burnout is a life threatening condition).
So for me, this means I had made it at least through 4 years of medical school while cancer was taking over my bones.
It did seem my breast lump/tumor grew very quickly. I was bathing topless on nude beaches just a little more than a year before, with no breast issues. The lump I still believed was a fibroadenoma.
I wish I knew when it all started. For some reason it feels like it matters 🤷🏽♀️0 -
I never even had a lump, I literally woke up one day with every textbook symptom of IBC in the extreme. One day I was perfectly fine and healthy, and the next day I was dying. Scary to think how long it was lurking in my body with absolutely no indication that something was wrong.
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