Leaving Stage 3 for Stage 4
I was hoping to make the 5 year mark this summer, and add my name to the list of those who did make it, but I found out yesterday afternoon in the ER, that the cancer has now spread to the bones in my chest and spine. Not sure about next steps, as need to get in touch with oncologist for "new plan", but not looking good right now at all.
I truly hope that the rest of you in this group, never have to leave it and just stay where you are. Good luck to you all - looks like it really does come down to luck in the end.
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Crap. Crap. Crap. Crap. I'm so sorry to hear this! It's what's on all of our minds once we get that first diagnosis. It never leaves. I know that so many Stage 4 people live well for longer with today's treatments. I hope that you get the very best possible treatment and results. You are one of my favorite community members and your news is NOT what I'd hoped to see today.
Gentle virtual hugs, and all my positive thoughts are heading your way.
Were you in pain? Is that why it was found in the ER? It is most frustrating to me that NCCN guidelines still have us waiting for symptoms and imaging confirmation.
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ThreeTree--I'm so sorry for your devastating news. You are so right... it seems like just the (bad) luck of the draw with this crap. I know there are lots of treatment options available though I'm sure you never wanted to learn about them. My very best wishes to you, and big cyber hugs.
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SarahMaude - I'm so delighted to get your message. You are a favorite poster of mine also. Yes, we all worry about and dread this very happening from the get go. Then for some of us, it really happens. Continuing to try and wrap my head around it all.
I went to the ER for sudden shortness of breath. They checked the usual heart, lungs, possible blood clot stuff, and when they did a CT scan looking for a possible blood clot (there was none) they saw all this spread in my ribs and sternum. It suggested to them that it was likely in my spine then too, so they did an MRI that confirmed their suspicions. Multiple fractures and softened bone in both ribs and spine.
Re was I in pain. I have had ongoing off and on chest pain ever since I was diagnosed. They had always told me it was from tight chest muscles, gave me stretches, etc. I also have had some chest and spine x-rays (regular type) over the last year or two that showed no problems whatsoever. I had wondered from time to time if some of the chest and back pain I was having could be bone related, but they always determined it was my muscles; told me I had poor posture, needed a different computer set up, etc. - even as late as last November.
I'll be curious to see what and if there is anything they can do for me now.
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lw422 - Thank you so much for your good wishes and sympathy! It's much appreciated. I don't know at this point what the treatment options might be, but you are absolutely right- I never wanted to have to know about them.
Big cyber hugs back to both you and SarahMaude.
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Threetree, I am so sorry you find yourself here. I too am fairly new to the world of stage4. Four or five months in, I’m still not sure I have fully learned to accept it. I made it less than 2 years from stage 1a to stage4. One of my MOs thinks it was always de novo. I also found out from a scan in the ER. The pain in my back came on kind of suddenly. Scan showed lytic lesions and a fractured and compressed L2. I was kind of in denial at that point. More scanning showed more bone Mets and more recently small liver Mets. But there really is a lot out there for us. My first set of 3 month scans say “grossly stable”. I’m on ibrance, fulvestrant, and Zometa and feeling pretty good. I truly hope the same will happen for you…to get on a treatment and start to feel more settled andhopeful. Hope is what carries me through. Sending positive thoughts and virtual hugs to you.
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threetree, how rotten! I think we started here about the same time. I am so very sorry you have to go through this - but may you deal with it for a very, very, very long time.
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threetree, I know that my RO said that she is now able to treat bone mets successfully. I keep seeing really promising study results in currently available treatments and more that are close to coming to market that may help dealing with the fact that breast cancer (and other) become drug resistant. I'm absolutely confident that you have options that are going to be successful. I'm here, and will be watching for news as you receive it. I'm frustrated on your behalf that your earlier complaints were dismissed as posture and muscular. These cancer cells are so freaking sneaky. I do not like them.
alicebastable, what a wonderful wish..."may you deal with it for a very, very, very long time" I echo that! And even more, threetree, may you deal with now, it and return to a point of NED. I know it's possible. I had "at least" statements, but will write that now "at least" you are going to be taken seriously with your concerns and you'll be closely monitored from here on.
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Believe60 - Thank you so much, but I am also so sorry that you too find yourself here in this situation. You are so right, that to go from stage 1a to 4 so quickly is really shocking. My heart goes out to you. Your stage 4 "discovery" experience in the ER sounds very similar to mine. I hope I'm as lucky as you have been with what they might have to offer for this stage 4. I'm not holding my breath for much at this point. In my case I did have a large tumor and was stage 3 already. They've always told me I was high risk, but I thought I was doing OK, chugging along with only some side effects from the AI, Also, when I had my surgery the surgeon told me he had had to scrape the cancer off my rib bone, as it was sitting there (in soft tissue though). They also left a 3mm margin that he told me he'd have to remove ribs to address, and then both he, the oncologist, and radiologist all figured the radiation would take care of that 3mm if cancer that were left. Didn't work, or didn't work enough. Like you, I think there is an argument that mine was de novo, but just didn't show up on any machines 3 years ago. The oncologist told me you have to have something like a billion (!) cells for it to show up on a scan. Virtual hugs to you too, Believe60, and also lots of good wishes that you continue to remain stable and do well.
Alice - Dear Alice, thanks so much as always for your comments and hint that I might have awhile yet. If anyone knows about dealing with this stuff for years, you do. I do have an appt with the oncologist tomorrow, and I'm pretty sure she'll want a full body bone scan and more - something they didn't do in the ER. Then maybe I will have some idea about what might be possible. (Just hope it isn't in other bones too.) Even if they can do something, I'm just terrified about the horror of side effects and will have to weigh that with everything else too.
SarahMaude - I would love to know much, much more about your RO's thoughts and abilities regarding treating bone mets successfully. Is this a widely known thing? New? Experimental? It would be interesting to know more. You know I asked the ER doctor about why until now, this had all been called bad posture, muscular, etc. and he just said that the routine type of x-rays I'd had over the last year, just don't show this stuff well at all. I did think they'd show fractures, and now they tell me I have multiple fractures in spine and ribs. He also said it just might not have been there, as it can grow very fast, and this could indeed be a very recent happening. I do know that starting around the first of Nov, I began to get more tired, more achy, but just chalked it up to the winter slump I always get. They did do a CT scan there in early Nov in that same ER, because I'd complained of mid back pain, but they did an abdominal sort of scan, not upper chest area, and they were looking for things like kidney stones because of the mid back issue. The ER dr I saw yesterday said this could have been there then, but that there was no concern at that time that it was mets.
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Threetree, may Dog be with you.
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Love it, Alice. So cute and comforting!
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Hi Wrenn - So nice to hear from you, and thank you very much for your encouraging message! Over the last couple of months, I had been meaning to email you, but just never got around to it. I was a bit extra tired, but had just chalked it up to the winter slump that I get every year. This all seems like it came on pretty suddenly and severely all at once. I had always thought that if things were getting worse, you'd get some gradual, but increasing symptoms of something, but I guess not always.
I am indeed, trying to get used to this "new world" you noted, and it is not easy. Trying to take things one day at a time, but so much to do, and such a mental wreck that it's hard to get organized and on task. I have a CT and bone scan scheduled on Feb 14 (Valentine's Day no less), as that's as soon as they could get me in, as they are way behind due to Covid, etc. After that the oncologists seems to think there is some sort of chemo other endocrine therapy, besides Letrozole that might help me for awhile. It all remains to be seen.
Speaking of Covid, I have begun to wonder if having had Covid has anything to do with this. I'm not one at all that thinks Covid or the vaccines directly cause cancer, but I am wondering if undergoing a bout with Covid, doesn't weaken your immune system enough to let those dormant cancer cells come back to life. I was doing some online reading and there are some researchers who are looking into that. They are saying that while there is no direct cause of cancer from Covid or the vaccine, having Covid can change the "tumor microenvironment" to such a degree that it does literally kickstart those cells that have been lying in wait.
I had the vaccine and booster, but got Covid last April - not a severe case of course, but I have not been the same ever since. I've always been more achy and fatigued, brain foggy, etc. ever since I had Covid. The fatigue got worse the last couple of months, and then bam, I found myself about ready to collapse the other day, so went up to the ER.
That's the deal, and I guess I just have to take whatever comes. I sure hope you're doing OK Wrenn. Again, really nice to hear from you! Thanks a bunch.
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