How can someone jump from 1A to 4 quickly?
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Nancy, I just read about a new study that proves that if you put in a certain type of protein polymer matrix within your cancer site. Any stray met cells go there first and it is able to be scanned. It delays progression for stage 4 patients as they can remove the matrix full of tumor cells and know before the mets go elsewhere. They are also looking at these implants for early stage as a way to know much early if there is met cells.
http://www.engin.umich.edu/college/about/news/stories/2016/september/implantable-decoy-could-limit-metastatic-breast-cancerThe device is a scaffold is made of FDA-approved material commonly used in sutures and wound dressings. It's biodegradable and could last up to two years within a patient. The researchers envision it would be implanted under the skin, monitored with non-invasive imaging and removed upon signs of cancer cell colonization, at which point additional treatment could be administered. The scaffold is designed to mimic the environment in other organs before cancer cells migrate there.
The scaffold attracts the body's immune cells, and the immune cells draw in the cancer cells. This then limits the immune cells from heading to the lung, liver or brain, where breast cancer commonly spreads.
"Typically, immune cells initially colonize a metastatic site and then pave the way for cancer cells to spread to that organ," Shea said. "Our results suggest that bringing immune cells into the scaffold limits the ability of those immune cells to prepare the metastatic sites for the cancer cells. Having more immune cells in the scaffold attracts more cancer cells to this engineered environment."The new research expands on previous work from the team showing that the implantable scaffold device effectively captures metastatic cancer cells. Here, the researchers improve upon their device and show that surgery prior to the first signs of metastatic cancer improved survival.
"Currently, early signs of metastasis can be difficult to detect. Imaging may be done once a patient experiences symptoms, but that implies the burden of disease may already be substantial," said study author Jacqueline S. Jeruss, M.D., Ph.D., associate professor of surgery and biomedical engineering and director of the Breast Care Center at the University of Michigan Comprehensive Cancer Center. "Improved detection methods are needed to identify metastasis at a point when targeted treatments can have a significant beneficial impact on slowing disease progression." Researchers tested the device by implanting it into a group of mice, then injecting both the implanted mice and a control group with tumors. At day 5 after tumor initiation, the researchers found a detectable percentage of tumor cells within the scaffold but none in the lung, liver or brain, suggesting that the cancer cells hit the scaffold first.
The team will develop a clinical trial protocol using the scaffold to monitor for metastasis in patients treated for early stage breast cancer. In time, the researchers hope it could also be used to monitor for breast cancer in people who are at high risk due to genetic susceptibility. They are also testing the device in other types of cancer.0 -
Lisey, do you have the link to that study? I would think that people would like to read that one. Edited to add: Thanks, you posted it whilst I was typing this post....interesting find
I just got the call back regarding my ( above) mentioned Phyllodes, which is actually of mixed neoplastic tissue origin.
It was sent out to two centers as well as MDA...two votes for ILC, one vote for mixed LCIS and DCIS. The actual Phyllodes tumor tissue is benign, but was growing quickly around the ILC or what have you. No matter, the sisters are hitting the surgery floor.....where they belong.
I had a MRI with contrast followed by a core needle biopsy two months ago and both showed "nothing"
Phyllodes are fast growing, so that can easily be missed, but the ILC is slow growing, and should have been seen.
I go for a PET scan on Wednesday. This story just goes to tell you that even comprehensive testing can miss this disease....stay on it if you have symptoms.
BTW, my MO stated that Phyllodes, even when benign can be "monsters" that send out leaf-like sarcoma "fingers" which can later develop ma ny years later into metastatic disease...he wrote a paper regarding one that traveled to the adrenal gland and triggered a metastatic disease. The original Phyllodes was.....wait for it.....benign.
Most women on this thread are not dealing with this sort of tumor, but it entertains the need for further research into all types of breast neoplasms and their ability to progress
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Lisey - thanks for the link, especially as I've had some of my treatment at UofM. I find the study very interesting and will reach out to the surgical oncologist we met there to see if/when participants will be recruited. It would be great to be a part of a study like this.
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Lisey, Interesting study. Thanks for posting.
Nancy, I do not get it either; I know those are the standards, but they make no logical sense. I do nerdy and that scans have risks, but I feel like even when we come in with symptoms, they get blown off. That just blows me up.
Hopeful, I am working overnight tonight. I will try to find those links once home; it's a crazy week for me, so it might be a couple days
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The problem with scans is that our current technology cannot detect tiny mets but can only detect mets that have grown to a size at which they can no longer be fully and permanently killed off. This is why once mets is detected by a scan, the patient is effectively Stage IV. This is also why chemo is given to high risk women who do not have any sign of mets - because it's assumed that many of these high risk women might have very tiny mets, and with such small mets, chemo can be effective and permanently kill off those mets before they can take hold and grow further.
What this means is that most early stage women who have scans will come out clear, but some will in fact have those 'too tiny to be detected' mets. So the scans provide a false sense of security and a possibly false result.
As for whether early detection matters to survival, my understanding is that it works like this:
Patient 1: Has a scan at time of diagnosis, small mets detected. Starts on treatment. Remains on treatment and is successfully treated for 8 years until treatments fail. Succumbs to breast cancer 1 year later. Survival time after original diagnosis: 9 years. Number of years with mets: 9 years.
Patient 2: Doesn't have scans at time of diagnosis. Five years later, experiences symptoms, has scan, mets detected. Starts on treatment. Remains on treatment and is successfully treated for 3 years until treatments fail. Succumbs to breast cancer 1 year later. Survival time after original diagnosis: 9 years. Number of years with mets: 4 years.
In these two cases, the number of years of survival from time of diagnosis is the same, but one woman lives with mets (and is in permanent treatment) for 9 years, while the other lives with mets (and is in permanent treatment) for 4 years.
Of course this theory doesn't hold in all cases. In some cases, early detection and an earlier start to treatment will extend life. In other cases, early detection and more years on treatment might shorten life, or certainly could negatively affect quality of life. And will the results be the same in the future, when we have better, more effective treatments for early mets and hopefully have better scans that detect cancer earlier? Probably not, but that's my understanding of where we are today and why scans usually aren't done on early stage women. Treatment decisions are made based on the risk that they might develop mets (Oncotype score, HER2 status, triple negative, grade, etc.) not based on whether or not a scan detects anything.
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Although I am largely ignored when I post on these type of threads ( most likely) due to not having the typical cancer diagnosis's discussed on this forum. I actually know Dr. Jeruss and can reach out to her, as I have had previous contact with her in a business setting. I am heading up to U of M to receive a form of treatment with their integrative/ complementary Oncologist next week. I am an Alum of University of Michigan, and worked with a few researchers there. I am a retired Pharmacologist by trade.
Guess that is about all I can add here
Best of luck to y'all
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The measure of a man is how he treats those, who can do absolutely nothing for him.
We do not see reality as it is, we see reality as "we"are.
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Fleur, if you find out anything from Dr. Jeruss, please keep us posted.. I find the idea of the scaffold very appealing at least until we develop better ways of knowing.
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Beesie - thanks for your practical insight. I get what you're saying, and it makes perfect sense to me - yet I still struggle with the concept of waiting until mets are large enough or invasive enough to cause significant symptoms.
Preparing for my recent UMX and DIEP I had to have a chest and abdominal CT at my local hospital which were then sent to UofM for review (as they were doing my surgery) where radiologist noted "2 small lucent lesions on L2 and L3" and "two tiny sclerotic lesions" on my left iliac crest and left femoral neck, "suspicious for malignancy" (my local radiologist did NOT note these in his report, but did find an enlarged hilar lymph node "suspicious for malignancy'' that UofM deemed a goiter. Go figure). THAT bought me another CT scan in a couple of weeks (four month interval) to look for progression. My MO says that would confirm mets and we'd develop a treatment plan at that time.
I can't help but think that catching these early means (at least for now) lower risk of broken bones, and perhaps treatment will resolve these lesions and give me more time without symptoms before they come back. I don't know. Maybe it's the same message we hear when talking about BC in general - "early detection" doesn't necessarily "save lives" but allows for earlier treatment.
I guess I'm still looking for a way to "beat this".
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Dear Nancy - My heart sank reading your above post. I really, deeply hope that those lesions, somehow, aren't malignant. Sending supportive thoughts and cyber hugs.0
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Hopeful, thank you for your kind words and support from afar. :-) I don't yet have a diagnosis and am trying not to make any assumptions, even if it seems likely given the reports. Having a local recurrence just four years after my first dx (and going from ER+ to TN), I find myself more vigilant and proactive about requesting tests. It's wrapping my brain around the fact that testing won't change anything - the horse will already be out of the barn - but I hope that earlier detection gives any of us the option to treat when treatment might be easier (relatively speaking). Somehow it seems logical to me - treat a bone met when it's "tiny" and could be treated with radiation...before it gets "huge" (whatever those words mean!) and the spine breaks or the hip shatters, and then we're looking at surgery and rads and chemo, etc.
I think that's what many of us hope for when we request scans - early detection.
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Nancy, I'm with you on catching it earlier rather than later. All things being equal, I'd rather avoid a broken hip, fractured spine or shattered leg, thank you very much. Cancer, and its treatments in many cases, is enough of a btch without such complications.
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Hopeful, The Mayo Clinic Breast Cancer book, in chapter 14 cites that the strongest evidence against follow up tests comes from 2 studies out of Italy who randomized people into intensive surveillance (bone scans and x rays) and standard follow up. There were about 600 people in each group and there was no survival difference in 10 years. A similar study was followed up in 6 years; also from Italy.
Here's one:
https://www.ncbi.nlm.nih.gov/pubmed/7848404
Here's the other:
https://www.ncbi.nlm.nih.gov/pubmed/8182811
Yes..... they are both from 1994. These studies are cited time after time after time in the literature where they justify no additional testing. There have been treatment improvements, and the current guidelines completely disregard this. Even more scary is the fact that these folk were followed for 6-10 years, so these guidelines are based on treatments from the 1980s!!!!!!!!!!!!!! This totally burns me up. This is what the ASCO guidelines are based on. It's beyond my comprehension that they base the current guidelines on such old, outdated research which disregards current treatments. My personal opinion is that the insurance industry likely does not want this testing and they've got some good lobbyists that probably weigh in. There's no basis for that in evidence. Just my opinion.
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Hi, Karen - thanks so much for those links. It's pretty remarkable that in a world of "evidence based medicine" professionals are willing to unquestioningly embrace studies of patients treated 20-30 years earlier. I'm with you in thinking that it's pretty much a question of $$$.
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Beesie - I know you are just saying in your two examples what you understand that they mean, but the problem with their thinking is that they can't prove that is true. The only way to 100% prove that there is no benefit in early findings of mets is if they chose to not treat some people they knew had mets with anything beyond traditional treatment for early stage which they won't ever do. I was one of those RARE but out there people that showed up as only stage 1 grade 3 in breast but were actually stage 4. Now, I know that truly is rare, but.....
My liver had 7-10 tumors with the largest being 5.6 cm (a lime). There were tumors in every lobe, and I had NO symptoms. If I had gone to another dr who didn't do early scans, maybe the chemo would have still killed it mostly off, etc, but I would probably have been an early recurrence as we wouldn't have done the hysterectomy and arimidex which all combined to get me to NED where I've been the last 3 1/2 years. I wasn't NED until 3 months after chemo ended. Now, I can't know that it would have recurred any earlier than it currently will (who knows when that will be), but I am thankful I've known so that I can plan and choose how I want to spend these years. I've been in great health and traveled the world. It just always bugs me that that "doesn't improve life" stat is thrown around when it isn't really tested and proven. Plus I used to live to work........now I work to travel and live which honestly has greatly improved my mental quality of life at least.
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nbnotes, I was explaining the rationale for why early stage women are usually not given scans for mets; I was not voicing any opinion about it.
And just to clarify, I didn't say that there is no benefit to finding mets early; in fact I said the opposite. I said that "Of course this theory doesn't hold in all cases. In some cases, early detection and an earlier start to treatment will extend life. In other cases, early detection and more years on treatment might shorten life, or certainly could negatively affect quality of life." The fact is that some women will benefit from knowing earlier that they have mets - whether the benefit is a longer life or simply better quality of life because treatments started earlier. But it is also true that some women will be harmed by knowing earlier that they have mets - whether they succumb sooner because of the difficulties of treatment, or whether they experience a poorer quality of life because of extended treatments or the mental & emotional stress of knowing they have metastatic disease.
As for your situation, I don't believe it's rare at all that people show up as only Stage I but are actually Stage IV. I actually think what happened to you is the most common way that mets develops.
As I see it, there are 3 possible ways that mets can develop and be detected:
1. Someone is diagnosed with de novo metastatic disease. This represents about 5% of all cases of breast cancer.
2. Someone is diagnosed with early stage disease, later develops a local recurrence, and from that local recurrence develops mets. I don't know the percent of cases in which this happens, but it is rather unusual, since most women who develop mets after an early stage diagnosis do not first develop a local recurrence. But let's say it's another 5% of all cases of breast cancer (which is probably on the high side).
3. Someone is diagnosed with early stage disease and sometime later (maybe 6 months, maybe 4 years, maybe 10 years,...) develops mets, without first having a localized recurrence. In these cases the breast cancer in the breast has been effectively treated, which therefore means that the seeds that started the development of mets had to have come from that primary cancer, prior to it being detected, removed and successfully treated. I believe that the current long-term mortality rate for breast cancer is in the range of 25% - 30%, which means that this type of mets development likely represents about 15% - 20% of all cases of breast cancer.
- These are cases like yours, where the initial diagnosis is early stage but a scan done in the months afterward detects mets. This probably only happens in about 1% - 2% of all cases of breast cancer (just guessing here, so if someone has better info on this, I'd be interested).
- More often these are cases where the initial mets are so small that they are undetectable by even with the best available scans, yet the seeds of that metastatic disease are already sitting somewhere in the body. The cases like these that develop into mets are the ones where either no systemic treatment was given, or where systemic treatment (chemo, Herceptin if HER2+, endocrine therapy if ER+) was given but failed to successfully kill off those rogue cancer cells so that they eventually are able to take hold and develop into full blown mets.
I appreciate the concern that everyone is voicing about the fact that scans are not regularly given to early stage women. I do understand the rationale for the treatment guidelines, but what makes sense for the population as a whole doesn't necessary make sense for any one individual. Nothing is 100%, which means that there will always be those who will have benefited from doing things differently. That applies to pretty much everything about breast cancer.
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I think the lattice implant idea is so much better than X ray scans for early stage peeps. There's no downside with the implant - as it doesn't cause cancer it just is a magnet to attract those stray cells floating around and get them caught in it's trap.
That stated, I also think the science is unknown on whether some of our treatments actually exascerbate the cancer we have... It's a theory that hasn't been disproven or proven, but at least should be considered. Anecdotally, I see more stage 4s who had chemo as stage 1As, Luminal A, than I do Stage 4s who didn't do the chemo as a 1A. This certainly leads me to wonder if Chemo actually helps the 1% aggressive cancer stem cells by killing off the 99% milder cells that were competing with them for food (sugar and Estrogen)... I asked my oncologist about this theory and she didn't dismiss it at all. She says some Luminal As actually do worse with chemo. But of course the subtyping is so new, we don't have a clear picture yet and sweep with a wide generic brush.
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Lisey, what you suggest is certainly possible. As you say, medical science doesn't have a clear picture on this yet.
However another explanation for what you've observed is the fact that those who have chemo have already been identified as being higher risk to develop mets, and unfortunately chemo is not 100% effective. So if the Stage IA chemo group has an average risk of mets of 22% (as an example), and if chemo is 50% effective (I suspect that's in the ballpark but would be glad to hear a more accurate figure if someone has one), then we can expect 11% of these women to development mets. And if the Stage IA non-chemo group has an average risk of mets of 6% (as an example), since these women don't get chemo, 6% will develop mets. So in this example, almost double the number of women who get chemo will develop mets vs. those who don't get chemo, but that's simply because of the aggressiveness of their cancers.
Or maybe it's a combination of both factors.
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With an Oncotype of 30, if I stayed on anti- hormonals my risk of recurrence is 20%. With chemo it drops to about 12%. Which means that the chance of mets for me in ten years is the same as the lifetime risk of a woman getting BC. Because I'm Highly ER+, the risk continues beyond 5 years.
Someone with a slightly lower Oncotype who chose not to do chemo would have a higher risk of recurrence. (But chemo may not have been as effective and not nessarily lower the risk as much.) If her ER+ is high, the risk continues after 10 years.
Keep in mind that anti-hormonal compliance is an issue here too.
So though the stem cell question has not been answered, maybe this helps clarify why women who've not had chemo may get mets while others who have had chemo.
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bump
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bum
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this might answer some of the question as to how the stage 1 to 4 quickly.https://www.usatoday.com/story/news/2018/04/11/breast-cancer-surgery-healing-study/506525002/
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gk....i am glad to hear that they are conducting a clinical trial. Years ago, the idea was floated. In fact, there was a thread devoted to it here at bcoThat drug, also known as Toradol, is my drug of choice. While hospitalized, it is the ONLY pain management medication that I can take. It would be AMAZING if it led to fewer recurrances. It costs PENNIES.....
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hi . You were given chemo based on the LV invasion and positive node. You might had slow growing cancer but these other areas affected with cancer was why you had chemo. When cancer is in the lymph vascular system, it means your cancer can travel to distal areas. Thus the chemo was given to kill off any cells in these areas. It's just an extra insuranc
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so then the higher the ER+% you are the higher the risk??
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I feel quite comforted by what Professor50's surgeon said to her. I am fueled at times by anxiety thinking of my prognosis and the probability. The thought of such can be so crippling that it just eats the entire day out...
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please help me. distant metastasis in stage 1?
I am worried ...
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Hey Friends, For me I put no weight or worry into staging, type, etc. Rather than give stats space in my mind I live the best life I can to support my body as it cycles through daily functions from cell rejuvenation to my immune soldiers that are constantly on the look out for bad guys. I eat clean, I exercise, I don't drink alcohol, I grow most of my own veg, I am mindful of living in the present and staying connected with that which energizes me; in my case I live in a 60 acre forest but a trip to a park or a walk by the lake can serve to restore. I went through my treatment with a girl that chain smokes, eats an appalling diet, is grossly overweight and drinks to excess but she is doing the best that she can and taking the path that feels right for her. We have the identical cancer right down to the location, size, type etc. and, wanting to show her a path more favourable to healing I invited her to our home. I made a wonderful assortment of salads and vegetable dishes and prepared a beautiful wild caught salmon....none of which she would eat. She brought a jar of peanut butter, grape jelly, margarine, a loaf of glow in the dark white 'bread', four big bags of chips, 2 litres of Diet Coke etc. in fear of me preparing 'grainy Earth Mother stuff." I saw a lot of me in her as I used to be 100lbs heavier and drink too much and eat waaaaay too much and the wrong stuff. I have made massive changes in my life choices and I wanted to encourage this lovely woman to consider changes too but I learned that just because I firmly believe that good nutrition and frame of mind go a long way to heal and maintain a healthy body it is not the path for everyone. I believe that lifestyle can make a huge difference between outcomes with BC. My point is don't lose your focus being overwhelmed with stats and charts. Make life choices that are known to promote health and have fun in the process. Anyone want my black bean brownie recipe!! That stats on that baby are 100% satisfaction, 96% super healthy and 99% tasty with a guaranteed 100% chance of recurrence once you've tried them. Rock on sisters. Stand with me right now, sweep your arms up to the sky, taking a deep breath, as you drop your arms exhale all of your worry and channel your daily energy into maintaining you.
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I’m so confused with all this and I haven’t started yet. I didn’t even do surgery yet. And I’m already worried about recurrence. When will the cancer come back? Even if I’m only stage 1.It is so depressing knowing I will die of this one day so young.
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pinkpinkturk, I REALLY WISH YOU DIDN'T REVIVE THIS THREAD! I never read it before today and I was so upset by the time I got through the first page I just wanted to say the heck with all of this.
Eigna don't feel bad, I had it twice 15 1/2 years apart and I am confused!
Right now I plan to ask my MO what my chance of getting metastasis is. My OnotypeDx said 7% with AI. I thought that was it, guess it doesn't even matter? Makes me wonder why bother with any of it? If we all have a chance at getting mets what does it matter?
My sister had breast cancer and lymphoma at the same time. A less than 1% of people get MDS from radiation used in treatments and diagnosis of cancer. My sister got it and it killed her! Like someone said, she was unlucky! My other sister and mother and at least one cousin on my mother's side had breast cancer. Yes, we are an unlucky family.
I hate that I was lied to by doctors for years, telling me I was cancer free and chance of getting breast cancer again was practically zero! Wrong, I got it again (new primary in same breast?) almost 16 years later. Now they want me to believe them again. (Different doctors)My breast surgeon's exact words to me in August was “ you are cancer free!" You know what I really want? To be breast surgeon and medical oncologist free and I am really leaning towards that because I don't trust any of them!
It shouldn't be this complicated!
I really must stop reading this message board! Many doctors instruct their patients to stay off message boards for this very reason! Sometimes ignorance really is bliss!
Canadaliz thanks for trying to be a voice of reason. Unfortunately this topic had me so upset I couldn't even read your entire post.
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Mavericksmom, the information that your MO gave you from your Oncotype test is your risk of mets. Your score was a 21 and therefore your risk of mets, assuming you take an AI, is 7%. Nothing in this thread changes that - there is lots of generalized discussion here but your Oncotype score is specific to you and your cancer so it is more accurate for you than any generalized numbers.
And yes, we all have a chance of getting mets, if we've had invasive breast cancer. That's a fact. But a risk is just a risk; having a risk of mets is not the same as getting mets. We all have a chance of getting mets but most of us who are Stage I will not get mets. Look at it this way: If there is a 1 in a million chance of winning the lottery, someone is going to win it. But it will only be that 1 lucky person out of a million people. The 999,999 other people who have a chance to win the lottery will not win it. But everybody has a chance.
We each have our own unique risk of mets. Mavericksmom, in your case, your Oncotype score, which analyzed the genetic make up of you cancer, tells you that your risk of mets is 7%, assuming you take an AI. This means that if you are in a group of 100 people - others just like you with the same cancer and same risk - 93 of the 100 will never develop mets while 7 of the 100 eventually will develop mets. Would it be better if none were to ever develop mets? Of course, but unfortunately we're talking about cancer here and the reason cancer is so scary is because it comes with this risk. That said, a 93% chance of never developing mets is pretty good odds for you.
Eigna, you are at the very scary stage where you know you have cancer but you haven't even had surgery yet and don't know the final diagnosis. It's easy for the mind to go to all the bad places. But to read this thread and conclude "Even if I'm only stage 1.It is so depressing knowing I will die of this one day so young" is wrong. You know no such thing. Yes, even Stage I can develop into mets. This is cancer; mets is a risk of cancer. But the fact that some Stage I patients develop mets does not mean that all Stage I patients develop mets - most do not. At this point, based on what you do you know about your diagnosis, it's a more likely that you will live to an old age and die of something else than that you will die young from breast cancer. And suppose you are one of the unlucky ones who hits the wrong side of the odds and you do develop mets? It might not happen for 7 years, or 15 years, or 22 years. With the treatments available today, look at the Stage IV forum and see how many women there have survived 10 years or more with mets. Then think about what the treatments might be in 7 years or 15 years or 22 years. With luck, for many people with mets, by then breast cancer might be considered a chronic disease.
All that to say don't put the horse before the cart. Don't assume the worst case scenario. Read the posts on this board from women who are well past their active treatment and see how fully they are living and enjoying their lives. Will some of them eventually develop mets? Yup, but it's not stopping them from living now. Same for the women who are Stage IV. So why would you want to live your life assuming the worst just because there is a risk that something might happen? What a waste that would be, don't you think?
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