Anyone know if it matters when you catch mets?

RosesToeses

Hi everyone,



I haven't posted much but I'm stage IIIa and 9 months out of active treatment.



Everyone says it's better not to wait for the initial dx because you want to catch things early and hopefully get it before it spreads, but is that true for mets, too?



I have a sort of tingly spot on my spine. It's getting more constant but it's not really all that painful. I mentioned it to my onc last month when I was there, but she didn't seem very concerned about it.



I'm actually ok with waiting to see if it gets worse or better, but if speed matters I'd feel like it's a lot more important to get it looked at, even though it's probably nothing, just in case it isn't nothing.



Anyone have any idea about these things?



Thanks!

rachelvk

I'm not sure if you've seen it, but there's a thread on the Stage IV section called "Not Stage IV but have questions." There are some great women on that who can help give you some advice.  From what I understand, if you have an unusual pain that lasts more than 3 weeks, you should definitely ask to have it checked. Did your onc say why she wasn't concerned? If it's been more than 3 weeks since you saw her and it has become more prevalent, definitely give her another call.

I would think that the earlier you catch it, the better off you are, but the problem with mets is that once your cancer has spread, it's a little like letting the genie out of the bottle. But I would think you have a better chance of keeping it isolated and shrinking/destroying new tumors with treatment the sooner you find it. Good luck in getting an answer. I hope whatever you're feeling turns out to be nothing.

TectonicShift

Personally I believe it does matter. The bigger, stronger, and more rooted tumors get, and the more they are in number, the harder they are to eradicate.

My onc and I are on the same page - if you are early stage, but at a high risk of recurring, then you want to hit any undetected but potential residual disease as early and as hard as reasonably possible in order to stun, harrass, annoy, and confuse the cancer cells into quiescence. If you can keep it "down" long enough it eventually dies off. (This is why I am getting some extra chemo right now - of a type recommended by my Caris report - above and beyond "standard of care.")

Same thing goes for stage 4. If you start to develop distant mets, you want to fight it when it is small. The quicker you can get into remission again, the better. I'm sure Diana will chime in here.

I've heard of patients fetching up with a small tumor in some operable spot, having it removed surgically before it's spread anyplace else, and staying in remission for years. That's especially true of brain mets. My onc is big on brain MRIs because he says small tumors in the brain can sometimes be scooped out surgically, but by the time you start having seizures it's too late.

Plus the anxiety of thinking something might be wrong but not knowing is very hard - for me anyway.

That said, I had a weird tingling / burning sensation in my collarbone for months that I was SURE was mets. But the scans said no and the tumor markers continue to say no. And it went away eventually.

RosesToeses

Thanks, rachelvk and TectonicShift, I appreciate the input!  I'll call my onc this afternoon and get it looked at.

It had just started when I saw her in July, it's right at the level of my breasts and she said at the time that it was probably from the surgery (something about the muscles wrapping around so trauma on the front can cause pain and repair on the back).  I had just had a brain MRI that week for what I was afraid were brain mets (memory problems, headaches) but turned out to be allergy headaches and probable chemo fog, so I may have been feeling a bit like I had been overreacting.

I do wonder why they don't do regular scans instead of waiting for symptoms.  Seems like you'd catch more that way, but who knows?

I hate to be always thinking every single ache and pain is more cancer.  That may be the worst thing about this, that you're always, alway, ALWAYS looking over your shoulder wondering if cancer is creaping back up on you.  It's not like it's rare for a woman in her 40's to have back issues, but for most people you don't immediately think "bone mets" when it happens. 

Stupid cancer.

HLB

I think its definitely better to catch it asap! The reason they don't do scans and simply wait for symptoms is because supposedly it does not prolong survival to find it early. I don't know if that's true, or maybe it used to be true but its not anymore. But even it doesn't affect survival it most certainly does make a difference in QOL. I was lucky that my onc did tumor markers for 8 years after I finished stage 2 treatment. That is how the mets were found a little over a year ago. I had no symptoms at all. Started letrozole and tm quickly went back down to normal and I still have no symptoms and luckily no SEs. I have mets to the spine and many people with bone mets have very bad pain, need surgical procedures etc. If I would have waited for symptoms who knows, I could have bad pain or need surgey or rads. Its also true what the avove person said that if you have only one or 2 mets, they will sometimes go for a cure and zap those things! So do get it checked but try not to worry too much, probably nothing :-)

diana50

Yeah...I feel pretty blessed my met was found very early. What that meant was I had rads to large tumor in spine, started zometa and letrozole. The tumor burden is less to your over all body if found early.



Most of you know my TM alerted my Onc. After 10 and half years market doubled. She was checking every 6 months. There it was. Not everyone responds to TM. Usually

They go by how you feel...pain...I felt great and had no pain. It is different for everyone....sadly.



Live your life. That is all I got. By the way I feel great and am doing well as a stage 4.

Hugs

fredntan

Tetonic what is caris report?

TectonicShift

Caris report is the genetics biomarkers report you can have done on a slice (slide) of your tumor by Caris Life Sciences. It takes tumor tissue and tests for something like 40 or so biomarkers, looks for genetic mutations, etc. Then it takes all the info it has about your tumor and suggests which currently used chemos are likely to be beneficial and which are not, based on all the aggregate research available. It is a test done on dead tissue and so it is theoretical, but if your tumor is already removed it's the best test out there at this point, or so my onc thinks.

He really prefers the test done by some Canadian company (I forget the name) on LIVE tumor tissue, but that has to be done obviously when your tumor is still alive and can be biopsied. They literally put tiny amounts of each chemo on your live cancer cells and see which ones kill the cells. 

It's never too late to get the Caris report. Your hospital's pathology report will have saved your tumor tissue. Caris can order a clean slide or a couple of clean slides. My Caris report was done a year and a half after my mastectomy. As a result of my Caris report, I am back in chemo on Abraxane and CPT-11. My Caris report indicated the AC+T was unlikely to have benefitted me. Also on Herceptin due to the equivocal status of one of my nodal tumors. I'm going to be on chemo for three more years, slowly tapering off after the first year. Yep, that's my crazy onc! I love him!!

RosesToeses

Thanks, HLB and Diana50, I appreciate you sharing your stories. 

I called oncology yesterday and, wouldn't you know it, my onc and her nurse practitioner were both out of the office that day.  Reception offered to have the on call onc call me, but thought Monday would be soon enough.  So now I'm trying to stay away from Dr. Google (we're not friends, Dr. Google and I) and waiting.

I keep reading on the BCO Hormonal Treatment boards about how people think tamoxifen can cause joint pains and joint degradation--weird to be hoping I have arthritis or a compressed disk, post cancer life is a very strange place!

Techtonic Shift, that's fascinating about the Caris report.  I wonder if an onc would restart chemo months or years after the fact based on Caris test results?  It does make me happy to know that for my daughter and her generation, at least, they'll have so many more good tools to throw at this if needed.

RosesToeses

Thanks again for your responses! I wanted to give a quick update--I had an MRI and my onc told me it was nice and clean, huge relief! She thinks the tingling may be from something muscular, but, hey, as long as it's not cancer back, I can breathe while we figure it out.

Moderators

Congrats on the good news, RosesToeses! Thanks for sharing!

--- The Mods

mamabee

Great news RosesToeses!

HLB

Awesome!!

fredntan

Great news Roses!



Tectonic- i want more info. Will insurance cover this? This istumor profiling? I called them but they werent open yet. What else should i be aware of? I am reading new book. The whole food guide for breast cancer survivors.

And where is your oncologist? I have learned more from people on here

TectonicShift

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