Catching Mets Early? Docs say it doesnt matter?
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Susangardens, I asked for a scan because I was looking into reconstruction and did not want to do it if there was any cancer present. (at that time, both my onc and we believed that treatments had been successful and it was time to move on). NEVER did I think for one second "I told you so", as I truly believed I was done with treatment.
Timing was everything! Mets were there (complete infiltration of the vascular system in the neck, all the way up to my skull). Local onc sent me home at that point to put my affairs in order and told me a few months was all I could hope for. I went to MDA and hit it with EVERY AGRESSIVE way they could think off. Two years NED now.
So YES, it makes a difference to find it "early" before symptoms. But what to do? That is not the standard for lower Stages. Why, I ask, does the patient, who is lower Stage and "done" with treatment, who does have symptoms which could possibly be mets, most often is the symptom treated without finding out the cause of the symptom?0 -
Re: "OMG, of course it matters! Finding it early can mean many more years of life."
Do we really know that, though? Is there medical evidence that finding mets early "can mean many more years of life"? I'm a fact-driven person, and I'd like to see the numbers -- not just what we "feel" or "believe", or of course what we wish were true.
Please understand that I'm not meaning to sound harsh. These are real, factual, important questions -- ones to which I wish we had answers. Our docs -- my docs, at least -- are using numbers and facts to guide their recommendations against routine surveillance in asymptomatic women. My surgical onco (breast surgeon) and med onco practice at an NCI-designated Comprehensive Cancer Center. They've both served on the NCCN panels establishing guidelines for BC diagnosis and surveillance, and for BC treatment, respectively, in the past 5 years. I don't think they're being callous just because they're telling me the truth. I'm assuming they're telling me the truth, of course. Why wouldn't they be?
If there are numbers and facts showing a benefit to early detection of mets -- i.e., lengthened lifespan, with minimal impact on quality-of-ife -- I'd love to see them.
Oh, and as for "survival rate" vs. "length of survival"... I think those may be different ways of expressing the same raw data. "Survival rate" is the percentage of women (or sometimes the number out of 100) who are still alive after a designated length of time. I suppose the "length of survival" would be the average overall lifespan of all those 100 women, including the ones who died in less than 5 years. It takes a lot longer to generate "life expectancy" ("lifespan") data than "survival rate" data, because the researchers have to wait until everyone dies. I'm not sure which expression would be most meaningful to me: "The 5-year survival rate is 65%," or, "The average lifespan is 8 years." (I'm making up those numbers.)
A real-life example of the difference is the recurrence risk and survival rate data generated by Adjuvant!Online, versus the "life expectancy" calculated with CancerMath.net. I guess I'd rather know what percentage of women like me are still alive after 10 or 15 years, than know that the average lifespan of someone like me is, say, 78 years (again, making those up).
Anyway, ... does anyone know where we can find the data to support this worrisome news so many of us have heard? (Maybe I don't want to know....)
otter
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This is a great thread. Here is a new twist...so what if you are an active person and always have aches and pains? I exercise daily. I teach aerobics, run, do yoga, weights, etc....something always hurts. I know they say if something persist more than two weeks call your doc but geeze I would be calling all the time. How do you manage the aches and pains when you lead an active life? Sometimes I can tell I have muscle pain but other times I don't know. Thoughts?
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"I guess I'd rather know what percentage of women like me are still alive after..."
Otter, I think the operative words here are "like me".
That's the conversation I had with my oncologist when discussing my oncotype score and whether or not to do chemo. These are all just statistics based on a large variety (in my opinion) of women. How many of those women were my age? were pre-menopausal? were at my same exercise level, weight, ate the same foods? took birth control pills? drank wine? talked on their cell phone? stood next to the microwave for an extended period of time?
I know it's all we have to go on...but sometimes maybe we give these stats too much credit? I don't really have an answer. I'm just enjoying the discussion.
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Maria ~ I hear ya!! I just started the "couch to 5k program" - currently closer to the couch than the 5k.
... I am feeling pain in my hips. I'm assuming it's the jogging? Though you say something always hurts and you've always been active? You aren't giving me very good incentive to continue jogging!
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mdg that would be me. Not that I am in the shape you're in… it's because I'm not in the shape you're in that I do get stiff. I have had a sore shoulder on the breast cancer side since a car accident in September. It's better than it was but it still hurts. Thing is I think the pain we get from exercising is muscle pain not bone pain. My stiff joints are a different kind of pain than the muscle stuff… and I know the joint pain is from the estrogen sucking drug (Anastrozole).
Otter brings up very good points. I have a feeling more women do have symptoms than do not with mets. Wonder if there's any information on that.
But like I said I feel NED so I'm assuming I am.
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Need to add this:
What I said upstream about no routine surveillance applies to women who had early-stage BC, were treated appropriately, have no factors that put them at particularly high risk of recurrence, and who have no annoying or suspicious symptoms during follow-up. They're asymptomatic.
Each time I've told my doc (either of my docs) about a bothersome ache or an unusual swelling during a recheck visit, I see furrowed brows and a worried expression. The physical exam becomes more deliberate and intense; more questions are asked; possibilities are raised. So far, the outcome has been, "I don't think we need to order scans at this time"; or "This is not how mets in this area would present." Because of the experience of my docs and the place where they practice, I've been satisfied with those answers. But, I'm almost positive that, if I continued to worry, or if I insisted, or certainly if the symptoms got worse, I'd be scheduled for scans and/or tests right away.
A few people here have mentioned the false-positive rate (poor specificity) of surveillance testing in asymptomatic women. We haven't talked much about the poor sensitivity of those same tests -- the fact that they cannot detect the really tiny mets that could, we hope, be zapped before things got out of hand. We get scanned or tested; and we walk out, relieved, clasping that slip of paper telling us we're "NED", ... when we're actually growing a whole new family of little tumors. After all, "NED" = "no evidence of disease." Is being tested and getting falsely reassuring "negative" results better than not being tested at all? I wonder.
otter
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After persistent pain in my lower and mid back my PCP ordered an MRI and a bone scan. The MRI of the lower back showed a herniated disc and stenosis. But the Onc canceled the bone scan saying that there was absolutely no indication in the blood test that the scan was needed (tumor markers low.) He said he has never seen mets without AP or calcium levels increasing. Unfortunately, the MRI ONLY covered the lower back area and so the PCP tells me "oh, it's PROBABLY just more of the same. But the pain is different and I'm trying to decide if I should risk embarrasment (of being a hypochondriac) and a radioactive procedure to find out. I hate that they are betting on my life "probably" being ok. I wonder if I'm overreacting but that comment set me off.
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otter, why do doctors keep treating Stage IV patients if there is no benefit? Why do patients grasp for every month and year to extend life if it is all pointless? I think living even a little longer may be well worth the effort myself. Maybe within the extra time patients get a cure might be found. Perhaps the patient may be able to attend a child's wedding or graduation. There are so many reasons to stay alive and not just lie down and die, until one is forced to do so. That's why I said what I said.
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Cheryl, OMG, if my ONC ran his fist over my entire spine, specifically the lower part I would jump off the table in pain. The Chiropractor touched on it last night and I just about started crying and all he did was push with his two fingers. Just sitting here I can feel it throbbing. Then the middle of my back and my neck are in constant daily pain.
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My understanding wasn't that oncologists don't see the benefit of catching mets "early", more that they don't see the benefit of catching mets before there are symptoms. That's basically how my oncologist portrayed her recommendations to me. I don't know this situation, but it sounds like she had symptoms that weren't reacted to appropriately, which just seems wrong.
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These are great points being raised about something I have wondered about. I do not get scanned regularly, nor do I get any blood tests for tumor markers, etc. And I am not lower stage, in fact, my onc stated that unfortunately, my BC knows how to move (because of my positive nodes).
I wonder if it has to do with effectiveness of treatment? It seems to me that chemo/hormonals will work for mets for some period of time and then often stop working, another variable that is unique to the individual patient. If you discover mets early, you will get a certain time for tx to work, perhaps if you discover it later, it's the same overall amount of time that the tx works. QOL would certainly play into it, of course
The fact is, if the cancer is NOT gone from your body, it is likely to grow again, perhaps slowly, perhaps quickly.
I will add, that I, like scuttlers, got 'lucky' in a sense. For me, it was that my cancer was found 'by accident'. If I hadn't had a scan (for something else), I certainly wouldn't have found the BC before mets had established. But it is difficult to jusify constant scans.
I am appalled that Mary could not get treatment when she complained of symptoms. That is simply inexcusable and tragic.
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I just miss her. She was so HELPFUL and ENCOURAGING. I don't even want to think about. She would anwser all my PM's even if it was in the middle of the night. D*MN!
But we have to keep focus that many of us will go on and sad to say some will transition. Like Lago said Heart Attack patients can't get scanned everytime something goes wrong.
By the way Hello LAGO long time no hear. Haven't conversated much since chemo ended. Best wishes to you and to eveyone.
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Maxine and others… I think there are lots of questions that the oncs just don't have definitive answers for. That's why there is "no known cure." Some of us are cured but we don't know it.
Some of it can be the effectiveness of treatment but then again some cancers are just that resistant. Cancer is that bad guy in the horror movie that just won't die. It just keeps mutating and therefore becomes resistant to treatment over time.
Treatment for mets buys time. That is justified because technically we all will run out of time some day (and I mean everyone not just BC survivors). None of us know if we have decades or days left. We just have a good idea that it probably isn't days.
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In regards to something always hurting, right now it is rib pain. I started doing abs againt a few weeks ago and now I have pain. It does hurt to touch my rib. I also have pain in the lower groin area on the boney part when I sit. I think it could be the insertion point of a l
muscle but not sure. It hurts on the boney surface. I also exercise a lot more than the average person so mu exercise routine may seem extreme to others. I have always exercised a lot and been very active. I have never been the type to run to the dr. for every ache and pain because that would be too often! The type of pain I am describing is not obvious muscle soreness pains. These are different...on boney areas.0 -
Time to recommend a book again... I posted on THE COMPLEXITY OF CANCER thread a conversation that Eric Topol, MD had this month with a columnist with ASCO Journal. Please read what he said and read his new book THE CREATIVE DESTRUCTION OF MEDICINE. Susan.... You touch on one of the topics that he mentions in detail. Because of genomics and technology he invisions the eradication of population based clinical trials. What does he mean? He means that using each person's genetics they will be able to pinpoint what treatments will or will not work. No more guessing when enrolling people in trials what cohorts willbe used based on vague descriptions such as pre or post menopausal.... overweight or normal. Medicine will be genetic driven. Clinical trials will not take years...
So what does that mean to the present discussion? Using genomics there will be better treatments available because doctors will know which treatments will respond to one's cancer.. Or not at all! He also envisions less use of screening because they will be better able to determine whose risks are higher and warrant more tests.0 -
Thanks voraciousreader. And it's available for download to my kindle.:) Is it an overly dry read? For example ...I liked the History of Cancer and B's Breast because of the anecdotal stories throughout that tied with the academic content. My eyes start to go blurry if the material is too dry.
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I have read thru most of the posts here. It is an interesting question.
I agree...
Last summer, I started having shoulder pain, located mostly in the left shoulder BLADE.
It would radiate down my arm at times.
I called my onc, as this continued for about a month, on and off at first, but later it was most of the time. He dismissed me. My pcm dr. just did an xray of my shoulder blade... sheesh, they must have taken a million pictures!!
Anywhoo.... after a month of being dismissed, I called my surgeon. He ordered a bone scan and ct of the chest and ct of the neck...
turns out, I have advanced arthritis in my SPINE....
I was sure it was bone mets.
I think we should get scans regularly... maybe every OTHER year, if we are symptom-free.
Harley
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Since my met was accidentally found, I received rads to the bone which zapped the little bugger. I am 100% ER + , so am on Arimidex and Aredia. My situation is considered oligometastases , which some docs don't even believe in. An evolving school of thought is to go at it with chemo right away so the intent is curative. There is some limited evidence to support this and it has not gained wide acceptance. It has been offered to me , brought up by my second opinion mo, but I am really on the fence. My life is quite normal now, so I still haven't decided what to do. I don't know if catching my met early will matter in the long run, but it makes me feel better in the short run!
Caryn0 -
Susan.... I loved reading the book so much... I am debating reading it again. Did I understand everything? No! But what I did understand I found amazing! Check out what I posted on THE COMPLEXITY OF CANCER thread and decide for yourself if it might interest you.
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Harley..you are only 49 and have advanced arthritis in your spine?
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Well you ARE a voracious reader so of course you'd like it!
... I'll go check out the thread, thanks!! 0 -
Susan I love this thread. Thanks for starting it. I too was so heartbroken over Mary's death. She was such an encourager to me as well.
Harley, I have been having pains in my neck and now my shoulder blade and shoulder. My PCP did an MRI of my neck in Jan and I do have arhtritis as well and I am 49 but I have an old neck injury which kinda explains my arthritis. But now my shoulder blade and shoulder are killing me and have for several weeks. I am seeing my PCP in the morning. I feel like it is more arthritis but he believes in sending me for scans to rule out mets and I am fine with that. It is easier to see my PCP at the last minute than it is my onco.
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Iago, thanks for posting that thread in your post on the first page!! I read years ago about early stage patients recurring more often than later stages. It makes sense. There are more of us, and we aren't treated as aggressively as stage 3 gals are. I didn't even get any AI's or Tamox!! My surgeon said to "save the big guns until next time"!!! Why does there have to be a next time???? And, as an ER+ profiler, I've known for years that the 5-year mark means I have to START worrying....glad to see it all again in print as I've been slammed before for putting those comments in my posts. I've been told I'm "fear mongering" when in reality, I'm just passing on information that needs to be known.
So many of you here say "I'm not a number or a stat" and yet you let the docs tell you that the "numbers say" you won't recur!! We are all different! I believe a scan once a year wouldn't hurt. And I do believe that if Mary was scanned while still in LA that her liver mets would have been treatable. Yes, she still would have been stage IV, but she'd be alive to tell us that fact!!
My cancer is so rare (Papillary - less than 2%) that my surgeon, when he met me just before I went into the OR for my double mast, brought pages from Google that he printed off the night before!! He had no idea what to do with me. I have seen it a bit more often since 2008, but when I googled it, there was only three hits!
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Barbe,
I don't think you're fear mongering but I do think there are two very different ways to approach early stage treatment. It all boils down to what a woman feels comfortable with and what she views as the risk vs. reward of the situation. Neither view is universally right or wrong.
Caryn0 -
I don't know the answer to the question about proactive screening but I plan to have blood tests every six months before my onc appointments, authorised by my GP. I'm not sure at this stage what to test for (will start a thread about that), and realise the results could be unreliable, but maybe they will be reliable.
These tests are non invasive and cheap.0 -
Lago thanks for the article you posted. My MO told me the same thing that early stage women tend to recurr much later, but added when it happens next time he will catch it early. WTH I don't want a next time. But on that note he has put me on Zometa because of the new studys that it reduces cancer recurrance in early stage, ER+, pre-menaupausal women. Hopeing it really works, at least I know my MO was excited about the study being completed and the positive outcomes of it.
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The problem for those of us originally diagnosed with early stage is that we don't know what constitutes a symptom. Looking back, I had symptoms. But I thought that they were just discomfort from working out with my trainer, or from gardening, or from hiking. I certainly had very similar pains when I was young, even before I had BC. A back pain is a back pain. When does it become a symptom?
I remember calling my onc's office before Christmas two years ago with pains on my mastectomy side. They let me come in to talk to a nurse practicioner right away, so it's not like they dismissed me. But the nurse said that it sounded like nerve pain, and my blood counts were normal. Two weeks later that pain went away. The next time I had pain that I attribute to mets, they were in my back, but I had been exercising, a lot. I also walk my dog long miles and that sometimes causes pain. When I mentioned my back hurts sometimes, they attibute it to osteoporsis or the aromasin, both of which also cause pain. My back pains always felt muscular.
My point is, if we wait unti there are unmistakable symptoms, we miss the opportunity to catch them early. I was seeing my onc every six months for 31/2 years, did complain from time to time about minor pains, but they came and went. When I awoke one morning unable to feel my legs, I finally was scanned. And at that point they were talking surgery to correct my collapsed vertebra so that my spinal cord wouldn't be so crunched that I would be paralyzed.
Had I known I had spinal mets, I never in a million years would have been doing the exercises that caused my back to break. So there are other factors besides just whether one has a longer life. Quality of life can be prolonged if you find out early.
And Racy, my blood tests were always normal. They don't reveal mets at the early stages.
I would definitely advice an early stager to at least get a bone scan 2-3 years out from their original diagnosis. I can see not wanting to do a CT without symptoms because of the radiation, but bone scans are not as potent, and the bones are so often the place where the cancer settles in first.
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sandilee ~ Thank you for sharing your story. Your case is exactly what sparks my original post! How the hell do you tell a regular pain from a mets pain? Apparantly you don't. That is crazy that you could have enough damage to risk collapse of your vertebra...and not have undeniable symptoms beforehand. Sigh.
If I think about it... my upper back hurts right now, but I'm sitting over a computer... it hurt like this before BC. If I ended up not being able to sleep at night...worrying about mets...maybe I would "exaggerate" my symptoms in order to get a scan? Can they see mets on a bone density scan? I asked for one because of Tamoxifen (supposed to NOT be good for bones if you are pre-meno). But from what I understand a bone density scan can't see mets?
Sherryc ~ interesting about the Zometa. My onc never considered that and I am pre-meno. Hmmm..another question to ask!
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Susan here is a good thread on BCO that you can read and then ask your onc about it.
http://community.breastcancer.org/forum/67/topic/779179?page=1
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