Catching Mets Early? Docs say it doesnt matter?
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Yes and that's why we have to be kind and civil with our words. We truly never know what's it's like to walk in someone else's shoes. We have every right to express our own feelings but need to be sensitive to others and make sure we frame our language to reflect that. Caryn
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IMHO I think we have probably expressed ouselves to the point that it would be beneficial to move on. For those of us who have not had Stage IV diagnosis it is an exercise in futility to guess how we might react. Each scenario will be different and even if we think we know the reality may be much different. Being kind to one another and civil is a very good practice.
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Susan's Garden, your question is exactly the same as mine.
I hope someone knows the answer.
Ginger
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The wording in your op, with respect to being condemned, doesn't say "I", it says you (As in the third person plural).
Point taken, exbrnxgrl - that was unintentinally misleading. I did mean myself but you are correct that such wording comes across diferently, and I apologize. I meant "you" in a colloquial sense of "me" - there's the English language for you. :-)
Agree with ptdreamers; I am over and out.
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I have had this discussion with my Dana Farber RO and my MO - how can you say that finding mets early and fighting a small tumor load isn't better than fighting with advanced mets. Neither of them had a good answer other than the "statistics say..." Well, here I am. My tumor marker test (which I have insisted upon because mine have shown trends) indicated something was going on. A PET/CT indicated small mets to both lungs. Unfortunately, I'm going to find out the answer to this question, at least as it pertains to my own situation.
When the statisticians say "it doesn't make a difference in survival rates" maybe what they really mean is that eventually I'll die from breast cancer. Perhaps they are saying 100% of those of us with Stage IV will eventually die. Yeah, I get that. What they can't say is "we don't know how long you will have" or whether you'll respond well to treatment or whether a series of treatments will extend your life for a decade or more.
We all have different personalities. Some people want to know, actually demand to know, all the facts surrounding their situation. Others prefer the "ignorance is bliss" approach. Personally, I can't ever have too much information - I want to know and understand what's going on, at least to the degree that answers are available. But I understand that there are those who would suffer from TMI.
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LuvRVing not sure it it does refer to just survival. I would ask your RO & MO about that.0
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I think there is a lot of misunderstanding about the statement that statistically, a person's survival rate is the same whether or not mets are caught early.
First of all, as with any statistics, they are talking about averages. Most will fall on either side of the 'average'.
A person who is given regular screenings is more likely to have mets seen before any symptoms occur. That is the popular belief. However, I personally know 2 friends with bc who both had clear scans as part of their annual screening. One began having symptoms 2 months later and it was discovered that there were now signs of mets. She survived, with aggressive tx, for another 2 years. The other friend went 6 months before having symptoms. She too was found to now have visible mets and was treated aggressively. She is still alive 3 years later, still under ongoing tx.
My understanding, as explained by my oncologists, is that if there are 2 people with the same bc types and aggressivenss and one was scanned regularily and one only when symptoms occurred, that both would have the same overall life expectancy.
For example:
Patient "A" is routinely scanned and small mets are discovered 2 years out from dx. She is aggressively treated and survives another 3 years for a total of 5 year survival rate.
Patient "B" is not routinely scanned. Symptoms occur 4 years out from dx. She too is aggressively treated and survives only 1 more year as her mets were more extensive. She too has a survival rate of 5 years.
Some will say that she may have lived longer if her mets were discovered earlier, but if all things are equal, the stats say that both patients had the same survival rate.
If the stats showed that patient 'A' went on to live a total of 6 or more years, then I would subject myself to routine tests. Another reason that I prefer to avoid regular screening is the data that is coming out saying that these screenings themselves could be doing more harm to us.
It is all a personal decsion that every individual should make with the understanding of the 'stats'. We also need to remember that mets do not behave at all like the primary tumour and that is what makes mets uncurable....so far. That is what really needs to change!
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pip57, that is so logical and really helpful! Thank you.
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My guess is it probably all depends on which doctor you're talking to. Some say it matters, some say it doesn't. I've seen four different oncs over the years, due to vacations etc. They each feel differently about outcome. I've based my decisions on an amalgam of each of their views.
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pip57 that was my understanding as well.0
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I am a long term survivor, and I have a yearly MRI of my spine, chest x rays, any head ache out of the ordinary, or any symptoms, my doctors make sure I am tested.
I have worked a plan to follow,I see my oncologist once a year[still] and my breast surgeon also yearly, in reality I see one every 6 months.
I get also blood work yearly, plus mammograms of both breast, the R. is a tram flap reconstruction. Years back they found microcalcifications in my chest wall , behind my reconstruction and they were removed.
I work also with cancer patients and their team make sure to have a good follow up of survivors. I understand the stress when one gets some tests.
Finding a small lesion makes a big difference comparing it to a larger or several ones.
Also there can be a second, 3th ,breast cancer that is not a recurrence.
There are some posts regarding this issue.
If a doctor is telling 'there is no difference"he is covering himself legally for not doing his work.
It is a personal choice sometimes how the follow up is done, sometimes it depends on the insurance, when I was refused a test, I will ask in writing an answer why not and that they will be responsible if there are consequences of not being tested; and they have always given the ok.
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I wasn't referring to actively looking for second or third breast cancer tumours. That is a totally different animal than mets.
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A second primary, or third for that matter- just restarts the whole clock of anxiety, waiting, treatment and further complications.
Trust me... Was 7 years out from first dx when I found my second primary.0 -
Yes, and most important, those complications can be nodal involvement and mets from the outset. The studies can be scary: Tamoxifen seems to be associated with a higher chance of contralateral triple negative, whose prognosis on average is much more aggressive than say an ER+ primary. I've read a ton of study about the fact a tumor is basically what it is from the outset as well.
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Susansgarden. My oncologist would like me to have a CTscan every 6 months, bone scan every six months. We discuss this ad nauseaum. I think once a year is probably sufficient or if I develop symptoms that indicate that something is up. Its the frequent exposure to radiation that makes me uneasy-I might get cancer!
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I feel dumb for even sking this but I am still learning
How do they know if it is mets or another primary tumor?
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autism_mom, mets are to another part of the body like the bones. You can also have a local recurrence to the breast it self but that isn't mets. If you have a new primary to the same breast or the other they can tell from the pathology report.
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So they can tell by the types of cells they find?? Do the mets have the same types of cells as the primary tumor?
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Yes they can tell if the mets are from the original tumor. From looking at you bio I don't see you've had any testing done for BC yet. Have you had a mammogram?
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kira
Oh yes, I'm in the middle of a very ridiculous waiting game...long story. I've had dx mammo and ultrasound but no results yet (part of the long story), i'll have them tomorrow. But I do have a non-traumatic rib fracture so was a little concerned about mets. Since I have so much waiting to do, I figured I would spend the time trying to educate myself. You know...just in case. Trying to learn about the different types of bc and treatments. Probably seems masochistic but to me is sort of calming.
And thank you for the answer. That's one I can mark off my list
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autism mom, there are NO dumb questions here!! We all had to learn the same way. Keep on asking; someone is lurking, just reading and will learn something from what you are asking.
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kayh ~ thanks for answering my question.
.... I could see why it would be a much discussed subject between you and your onc.... being NED...you would think they could span the scans out further and further. autism mom ~ I wondered the same thing in the beginning of all this. Heck, I didn't even know there were different types of BC, I thought they were all the same. As I understand it.. the mets biopsy (from the bones or lungs or liver, etc) actually show up as breast cells. That's how they know.
pip57 ~ I tend to gravitate towards that line of thinking as well. Still, sometimes I wonder.
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I had a bone biopsy and the cells were indeed bc cells. That is how you know mets from a new/different primary cancer. Caryn
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I was diagnosed with bone mets in mid may. They determined it from the bone scan and a pet scan. My question is why they did not do a biopsy? Is bone and pet scan enough?
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Stella, my first thought. Is no. Without the biopsy they are guessing. My Stage IV was one little fuzzy met on my scapula. At first the onc was sure it would be nothing but he set up the biopsy and, damn, it was BC cells.
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That's what I'm worried about right now!! I'm getting a spinal MRI followed by a bone scan and I've always lit up, but they say 'normal' on the bone scan. What if something is growing among all those 'normal' lights?????
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I can only surmise that they know what they are looking at on those films and knew that my one little spot was suspicious.
This was at MDAnderson. They said they leave no stone unturned and they didn't.0 -
Yes, my mo originally thought the spot on my femur was not a met. Biopsy said otherwise.
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