Catching Mets Early? Docs say it doesnt matter?
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I do realize that mest doesn't necessarily hit the bones first, but that seems to be a natural progression to organs. Maybe if they could even find a pattern, that would help?
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Marybe, the fact that you had symptoms and were not checked out is similar to MBJ's story. That is when I think we all agree you should be checked out. It is the standard scans that are ordered on a routine basis that I question the value of.
Re biopsy samples. Even though they took 8 samples from my tumour, they did not expect to see what the pathology found. And my mother had a small tumour which biopsied as benign. When they removed it, at her insistance, it was discovered to have a very small part that was DCIS. Even back then the surgeon knew that it was just by chance that the biopsy needle didn't hit that particular spot.
I guess my opinion is based a lot on my own experiences. I just don't trust scans to tell the whole story.
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I don't trust bloodwork to tell the whole story! I think scans might give us the "title" of the story, and it takes more looking to find the real issue.
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That's a good way to put it. You just get the title of the story. And the story itself is neverending. It just keeps going, with plot changes when you least expect them.
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I think most doctors agree that biopsies are not 100% accurate. That's why they don't give final path till after surgery and if the biopsy comes up negative they do follow up in 6 months.
They took 5 samples of my tumor from different spots. All came up IDC but after surgery they found that about 25% of my tumor was also DCIS. IMO this isn't uncommon.
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Following the scenario layed out by Angelfalls, finding it early means you have at least more time to find the right treatment although there is no guarantee you will. At a later mets stage, cancer has grown in complexity and the chances of finding the right treatment, even just for palliation, probably fall.
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Heidi, I am not disputing what you say, but there is always an exception. Sometimes just when you have about given up, a treatment will work. I did five chemos that failed and two hormonals before starting on Adriamycin Dec. 7, and it really has seemed to work for me. Even my onco told me there was only a 20% chance it would work and the onco at MDA told me it was only a slim chance since the more treatments you have been on that fail the more likely the next one won't work either.....all because the cancer cells become more resistant. BUT as I said so far so good with me....tumor markers are still way up there, but went from 7668 to 3000 and even though they are not always accurate they normally are with me and that is over a 50% decrease so until they tell me different, I am thinking this one is working and am hoping there are others out there that will also when we stop this one.
I have been doing treatments since 98 when diagnosed Stage lV and just a few days ago met a woman on here who has been Stage lV since 97 so even though we were diagnosed late and more advanced with our cancer stage, we are still here. Marybe
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The assumption that some of you are making is that the circulating cells will be killed as well as the ones causing the metastatic tumour. It was explained to me that this is not what happens. The tx causes the immature cirulating cells to become even more resistant so that they are less treatable when they become a metastatic tumour in the future.
That was one of the reasons that they wanted to hit me hard with the chemo first time around. That was when we had the best chance to actually kill any circulating cells, before any of them became mets. If the tx wasn't enough to kill them all, the ones left would be more resistant in the future. Maybe this is why we see stage I and II advance when the odds should be in their favour to stay NED. Just thinking.
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But do we really know if the tx causes the immature circulating cells to become more resistant?
Or is it just that some cells have already mutated or are genetically different enough so that they do not respond to that particular chemo in the same way as the others?
The study about the ability of cancerous tumors to have multiple genetic characteristics is quite frightening. I know Mary's tumor was originally triple negative ...and than metastisizes into a fast growing 80% ER+??
That study also makes me question why they often don't remove the tumor from the breast if they find out you are stage IV upon original BC diagnosis?
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This is an interesting topic. Mary dying is pretty sobering. I had no idea she went from early stage to stage IV. It happened so fast and I think this is what scares us.
I wondered if she did chemo. I complained that the herceptin I'm takng with co-pay fees were about 20 K ,,, for the year even this was beyond what I could do. They said anyone needing infusions could apply for a grant. I did and it pretty much covers the herceptin co pay fees. I wondered if that was offered to Mary?
As far as scans, I feel it is important before the 5 year mark to do scans once a year. If nothing else it gives you peace of mind that you are NED or if it has mets that you are doing what you can to either control it or shink it.
Once you been dx with IDC it's important to keep your eyes out for any signs of potential cancer.
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The problem with having 'peace of mind' is that it really doesn't mean much. I have had two friends who were stage II and given yearly scans. One was even checked every 6 mths because she was in a trial. Both developed mets symptoms, one 2 mths the other 5 mths, after clean scans. The one dismissed the signs because of her recent scan. Both are gone.
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I am terrified of possibly having mets, and my MO have repeatedly told me that I am "young and healthy" (I was 39 when diagnosed), and therefore they will not do additional testing - as per NCCN guidelines. As a matter of fact, my onc, who is the director of the breast program at the center I am going to, told me that they will no do a pet on me under any circumstances, because of the many false positives. And because "If they find something, then they would have to go after that?" - I cry every time I think back of her saying that!!! What the heck does that mean? Isn't that what docs are supposed to do?!
In any case, I have had no PET, MUGA, or Bone scan so far, and am currently doing the second part of my chemo tx (4dd ac, 4 dd T). All the different side effect pains I have been experiencing during Chemo has only to my worries of "what ifs" And while I hate to expose myself to the radiation that all the tests emit, I know that before I can move on after my tx is competed, I NEED to be checked from my head to toe and pronounced NED, if indeed that is the case.0 -
Sleepless, I agree with you. I think every woman with invasive bc should receive at least one MRI. Shouldn't depend just on node involvement or LVI. Cancer is sneaky and individual cells CAN escape without leaving a trace of evidence.
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Sleepless, I think you should have something to ease your mind. MUGA is a heart test used to see if chemo is damaging the heart, so it wouldn't tell you about mets. Until you said 'she' I thought we had the same MO. Mine is planning a mammo in a year on the good side. End of looking. Your treatment is pretty thorough and should cover all bases, but peace of mind is also important.
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Yorkie, I agree- I am her2 positive with a positive sentinel node and LVI. No scans until I am symptomatic. I did have a bone scan for hip pain that was negative but I told my MO I want abd and chest CT for peace of mind and breast MRI because I have very dense breasts. When my mom was dx with DCIS 10 yrs ago it was standard to rotuinely scan with a breast cancer dx. My MO said he will do it- I just want to know what I am dealing with!
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3girls, I guess MOs and systems are different. I had 2 nodes, no LVI and got a CT and bone scan. I was not symptomatic but the MO wanted to know what, if anything, was in there. Maybe MA or your insurance is different. I have BCBS in Kansas. Good to know your MO will do it though. Even though it is more radiation I agree that the peace of mind is worth it, at least once.
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PIP, I too know of people who've had clean scans and then were diagnosed with mets very soon afterwards. The cases I'm thinking of include breast cancer and other cancers. I recall the husband of a friend who had a clean scan, was diagnosed with mets about 6 weeks later and died within another 2 - 3 months.
If someone is symptomatic, then of course she should get whatever scans are appropriate. That's the failure in Mary's case. But to scan someone who shows no symptoms just doesn't make sense to me. First, if it's a PET or CT scan, there is the unnecessary exposure to radiation. Then there is the risk of a false positive - and the fright and the tests that go along with that. Lastly, if the scan is clean, it may simply be providing a false sense of security which can turn out to be problem if someone then ignores warning signs that show up shortly after the clean scan.
I think the better approach is to simply tell yourself, once surgery and treatment is over, that you have had the appropriate treatment, you are now NED and you will remain NED... and to keep thinking this until such time as proven otherwise (a time that hopefully never comes). I know that's easier said that done but for most of us, it's the truth. It seems to me that's a lot better than worrying about something that's completely outside of your control. And rather than get reassurance from a scan - which might not mean anything at all - I think it's better to just be aware of your body and watchful of anything concerning and lingering (the 2 week rule is a good one).
And to Susan's earlier question, "would you rather live 5 years knowing you have mets or 1 year?", for me, ignorance is bliss. I've experienced both situations with people close to me. Thinking about those who've lived for an extended period, while they were happy and grateful and all of us who loved them were grateful, it seemed that everyone was always waiting for the bad news and wondering if this holiday or this visit or this birthday would be the last. There was a shadow cast over everything. So personally I'd rather live not knowing, and then have a relatively short time to tie up the loose ends and say what needed to be said. I recently experienced that with a close family member and for me, that's the better way. Not that we have any choice about it.
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Yorkiemom,
Exactly! Cancer IS sneaky!
Wren,
I realize MUGA is heart imaging, which is why I'd like to have one done. I have been having a lot of issues with shortness of breath/dizziness, upper back, shoulder and chest pain during chemo (which may or may not be "normal"), and I'd like to get my heart as well my lungs looked at before (and if) I decide to do radiation after chemo. I am still weighing the pros/cons, however if there was any significant damage (from chemo or otherwise), I would not do radiation or tamoxifen.
3girls,
Maybe you can get your gynocologist to send you for an ultrasound, instead of a mammo. From what I understand ultrasounds are much cheaper than an MRI and (unlike a mammo), works much better on dense breasts.0 -
I had early stage bc, and while I didn't have scans run, I did have a CTC blood test done which turned out to be negative...no circulating tumor cells in my body. This was ordered by my ND, not my conventional doctors. They said the test wasn't reliable...so what should I have done....waited for symptoms to show up? My friend who had lung cancer had pain in her shoulder that was treated as a rotator cuff injury. By the time they realized it was the cancer that had spread, it was too late. I thought this amounted to medical malpractice! Anyone battling cancer with a symptom like that should have a scan or xray done, regardless.
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I agree Kaara...
Mental condition is essential in battling this disease. While some are apparently not in need of any testing, for others, it offers a sense of comfort. And all the bad stories of recurrence following clean scans means little....for the same can be said for those with no scans....I don't want to be scared nor do I want to scare anyone. The point is what a person indivdually needs to make it through with a sense of comfort...notice I said sense again? I know that is all it is. For there truly is no one sure path or way that is right. It does not exist. If I advised someone not to have a scan or xray or any other test they desired, well, that would be wrong in my eyes. I can only say what I have done in my case for me thus far. My experience. Sure there are collateral stories, but they don't really apply when one is considering their life. It is not for me to sway either way. I am not wishy washy, but I have gotten much better at taking off my god hat since my DX. For some of us, ignorance is bliss, for other, it means utter panic. Both kind of false in a way, but nevertheless real to those feeling it. After the latest visit with my onc last Friday where she railed at me for still refusing further AI treatment and doing my own version of hormone suppression backed up with my trusty updated NCCN guidelines...we duked it out for a bit and then agreed to disagree and she wants to see me again in 90 days...UNLESS something feels off...she is veryproactive but not such a rigid line that she won't have me as a patient if I buck her...I asked her about this question on this thread....and it was a resounding "Yes, it matters...every cancer is different in every single woman-someone dropped a very serious ball in your friend's case...some docs say it doesn't matter because they have nothing else to say or to somehow protect themself...."So, here I am somewhere in between the two shores of despair and joyful bliss and that is where I aim to stay. Floating with the current at times, sometimes paddling in different directions, but also watching out for the big fins.
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annettek, I love the imagery!
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This is THE issue that I keep coming back to for myself. A scan-only-when-doctors-think-you-present-with symptoms-mentality is fundamentally suspect in my opinion.
Insurance is of course against it because it costs them money. Who thinks this doesn't have a big influence on what doctors do?
And if they go looking, doctors have to follow up with more tests if they possibly find something. As some posters and I put it, they don't like to do that. I think they'd rather not look in many cases.
But that doesn't sit right with me, since it's my life and all. I've been looking for that MO who would see it my way for about nine years now, and so far, haven't found her or him.
This claim--that it doesn't matter when they find mets--doesn't make sense to me, and the more the medical profession insists on it, the more I'm sure I'm right to think something's rotten in Denmark and to get what I think I need despite what some doctors might say.
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SleeplessInSeattle My onc spotted some "things" on my first liver scan before surgery. She had me do a scan after chemo. It was cysts… but still had me do another scan a year later. Still not change in the cysts. I find out next month if I have to follow up with another scan in a year. That's what she means about following up. I joke about since I got a pass on rads they are now giving them to me in the form of scans. I also joke about her looking for stuff that's not there. Just wish she would wait till I start crapping white or tarry craps before scanning again
But the reason why I got scans initially was my tumor was so big, my BS thought there was a good chance of micromets in the nodes and we had time before surgery. If I had mets we would have been doing chemo first.
My BS also did an MRI before surgery on both breasts… and I'm glad he did. Some LCIS in the other breast. That's why he recommended the double.
My onc is very good about scans, etc if there are symptoms. Last summer I broke out with a rash on my leg. Just some redness not bumps or itch. I saw my PCP. He said if it doesn't go away in a week I should see a dermatologist and ordered a blood test just in case. I then went for my Herceptin infusion. Nurse got all nervous and told my onc. Onc wanted me to see the super special dermo. I couldn't get in for 3 weeks. It went a way before I had the appointment so I cancelled. I knew it wasn't a "cancerous" related rash.
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Lago- it sounds like you are getting primo care...cautious but realistic...which is what everyone deserves....sure it is scary but to me I love a test that doesn't prove their fears.
There is a woman I work with who went through a battery of tests at MDA and was furious when all the results came back negative saying "All that fuss and not a thing to worry about, what a big fat waste of time"....um...my reply was "Thank God"
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annettek I do understand but everyone from the start said they were cysts. Granted right now I guess I'm in the high risk zone (years 2 & 3) so maybe one more would be OK.
I do want to keep up with my bone density scans. I'm really concerned about bone loss being osteopenic, family history, small boned, Caucasian and on that estrogen sucking drug. Lots of questions next month.
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I'm still thinking about Mary. It boggles my brain to how someone in just months to a year time bc could spread so quickly. It seems that some cancers mets overnight. Others with the same dx seem to live for years or mets is slower growing. I've read whre bc women had a scan and were consider NED .. yet a few months later have gone from early stage to stage IV. I wonder if the rapid growing cancer in Mary was fueled by stress as I read that she made a major move from California to the N.E. Moving is very stressful.
Cole said Sloan detailed the biology of the stress-induced changes in the cancer
cells along every step of the pathway, providing a road map by which stress
promotes cancer metastasis.The study appears in the Sept. 15, 2010 issue of the peer-reviewed journal
Cancer Research."What we showed for the first time is that chronic stress causes cancer cells
to escape from the primary tumor and colonize distant organs," said Erica Sloan,
a Jonsson Cancer Center scientist, first author of the study and a researcher
with the Cousins Center for Psychoneuroimmunology. "We not only showed that this
happens, but we showed how stress talks to the tumor and helps it to
spread."http://www.cancer.ucla.edu/Index.aspx?page=644&recordid=397&returnURL=/index.aspx.
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eve, did Mary ever have a CT or PET? I thought I've read she didn't because of insurance issues. If she didn't it's possible she was Stage IV from the beginning and mets were not found or treated until too late. Still it did all happen very fast. So sad.
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As I understood she had breast reconstruction, which is very pricy. Do we know for sure she didn't have scans earlier on? Although most earlier stagers aren't given scans. I also thought I read that while in California she had insurance. Once moved she hadn't got into the system. I just wonder if the move accelerated the cancer to spread quickly. I wonder if the stress of the move fuel the cancer causing it to spread faster than normal. I'm just trying to wrap my head around cancers even after scans (and are considered NED) THEN... within a short time mets.
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I really don't know anything about her history except what I've read here. I agree that it's very frightening how fast some cancers can progress. It's also scary that even the best tests don't always pick up what's going on. I was biopsied in the same area I had cancer 3 years ago and it came back B9. I think the surgeon got a normal sample of tissue and not the cancer, which was probably a much earlier stage than I am now. I think stress can definitely add to cancer's development and growth but alone cannot cause it. JMHO. There's a lot about this disease we don't know right now.
Best wishes!
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This is a great topic and one I have wondered about too. I have Stage 2, Grade 1 BC; had lumpectomy and surgery following to even the margins. Treatment was 33 RADS treatments that was completed in July 2011. Have since had THE first mammogram since the DX and it was fine. Next one is next month. Also taking Arimidex and had appt with ONC to see how I was handling it. Before I was DX I had pain in my tailbone would you believe....hurts when I lay down for a few minutes. Also have osteoporsis(sp) and taking meds for that too. My ONC said if I have persistent pain to have it checked out by her but I had this before I had BC. If it is sporadic pain should you still check it out? I think I will talk to my BS about it next month. Unfortunately for all of us once you are dx with the C word all bets are off. The fear factor is alive and well but I know none of us wants to live our lives being afraid of every ache and pain. Diane
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