Frustrated....How do we know if the cancer is NED/remission
So, I go to see my MO next week to talk about hormone blockers and just the PFC follow-up. I've got a list of questions I'm taking with me. Early on though we asked MO how do we know if the chemo worked, are there scans after? She said no, no scans. She doesn't do scans unless there is a reason, like symptoms.
Okay, so how do we know that after tx has ended any of it has worked? I've had people ask me, did they get all the cancer, are you in remission....and I'm thinking, IDK!!
I know during mx the cancer was removed, so is that it? Cured??
How does this crap work? It all seems so iffy and left to chance. Is this just my MO or the same thing with others. Is this a stage III thing, or with earlier stage cancers do they say "cured"?
I hope I'm making sense. thanks for listening
Comments
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Tangandchris, your post makes perfect sense to me because my MO said the same thing as yours. No scans unless there is a reason, like symptoms. It is not just a stage III thing. The only doctor who has ever spoken the word 'Cure' to me was my RO. Bless his heart! He said "I believe we can cure this."
Let us know how your MO appointment goes next. Best of luck to you.
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TangandChris- You are asking the million dollar question. Your onc is not unique, and it's not just for stage III. It's the "standard of care," as they call it. I call it crap.
I would definitely insist on a CT and bone scan two years after your initial treatment ends. Yes it's leaving a lot to chance to wait until you have symptoms. The answer you will hear is that there is no difference in outcome if you discover your mets sooner or later in the disease. I know for certain that that's just not true. Had my mets been found a year before (and I know they were there) I would never have crushed my vertebra and experienced nerve damage. I would have been more careful with my back and not carried 35 pounds down the Grand Canyon, or spent hours in the garden lifting heavy pots. Had I known my back was at risk, I would have behaved differently and my outcome would have been improved, even if the treatments didn't make any difference. And I think the hormone blockers really do make a difference- they have stopped my bone mets that were running rampant for three years in their tracks.
Don't let them tell you it's not necessary. Insist, and they will do it. I'd suggest every two years for the first few years, and then maybe every three or four after that. Nearly 30% of early stage cancer patients ( I-III) will have mets at some point down the line. It can only help to know earlier.
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I have never been told by any of my Drs that I am "cured" as they say there is no cure at this time for IBC but that (as far as I know today) I am the best I can hope fpr NED ( No Evidence of Disease).
In the almost 5 yrs since DX, I've had 3 scans that were for issues non IBC related. I do not want to have nuclear/radition in my body just for a' routine' scan.
Also remember, all BC DX are not the same. There are many variables.
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Oh, yeah, this is the standard line. We don't know if you're cured or not, but we can't look and see. There are several reasons why: 1) Insurance won't pay for scans that are not part of diagnosing a symptom if you are not already stage IV, 2) there is some risk of getting another cancer from the radiation involved in most types of scans.
I was able to show symptoms in the first two years after completion of treatment that led to both bone scans and chest/abdominal CT scans, which were thankfully clear. My onc had no problem ordering these tests even though my symptoms were not that serious. It's like he needed a reason to do it. My symptoms were chalked up to side effects of aromatase inhibitors. But those scans did give me some peace of mind. Not that I believe that I'm cured, mind you, but that I at least knew at that time that I was NED. If I had any new symptoms I would not hesitate to report them, but want to avoid excessive radiation if I am not having any other problems.
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Good questions, tangandchris! It seems like there are many, many different opinions and practices out there.
My own MO figures out an excuse to get a PET scan every year for the first five years. I don't know if she does it for every cancer patient at every stage, but for me, she thought it was justifiable. She also draws tumor markers every 3 months.
Both the PET scans and tumor markers have been reassuring for me. Before my last scan in May, I had been having some back problems and soreness in my thigh and was a bit nervous that something was growing there. When the scan came back normal, it helped me tremendously to connect the dots--not every twinge is cancer!
As far as I know, all of us with a breast cancer diagnosis can consider ourselves completely "cured" when we die of something else! As lousy as that sounds, it gets easier as the months and years go by. I know breast cancer can still pop up somewhere and throw a stick in my spokes, but it doesn't haunt my every thought like it used to.
My mom is 90-year-old. She had a left mastectomy with axillary node dissection in her 60's, and a right simple mastectomy in her 70's. She's cheerful, active, and healthy. Is she "cured," "in remission," or "NED"? It's a matter of semantics.
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Tangandchris - Very good questions. I finally got a follow-up plan going forward with my MO this week. I have flipping lung nodules since dx that have remained unchanged - so we have good reason to keep scanning. I will have tumor markers every 6 months, a chest/abdominal CT and a PET scan once a year. So, I'll be scanned in 6 month intervals - CT every August and PET every Feb.
My cousin was dx with stage 3 in early 90's - and continues to be NED?...cured?...remission?...I'm not sure just know she's been cancer free for a long while.
I hate breast cancer.
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This is an ongoing discussion around here. My take:
1. I am with Sandilee and others in that even if early detection of mets does not, on average, affect how long you live, I also believe that it can vastly improve how well you live. I also have doubts about the basic assumption, because the statistics typically are "behind" advances in treatment. It seems like a lot of stage IV women do really well on AIs, for example.
2. As far as I am concerned, there is no cure and it is dishonest to talk about anyone being "cured" of breast cancer. My mother had ovarian cancer 7 years ago, and she has had no recurrence. She can legitimately consider herself done with ovarian cancer. Unfortunately, the same does not hold for breast cancer. Its recurrence patterns seem extremely unpredictable. My aunt (stage 4) and I have a standing joke that if we die of something else, we will have "won."
3. My doc does CT and bone scans years 1 and 2. After that, annual lung X-ray and liver ultrasound. In addition, a full blood panel and tumor markers for each visit - 4X a year the first 2 years, then every 6 months. This is my breast surgeon, not my onc. Of the two, the surgeon is the lead doc on my team, which is a bit unusual.
4. To me, this whole part of the cancer process is the most difficult. I was a trooper though all my treatment. But coming to terms with the fact that this will never be "over," and trying to find a reasonable way to live, given that it could be back anytime, but could equally well decide to stay dormant until I am 92 and keel over from old age, I find extremely difficult. It is also difficult because you can't talk to anyone about it. At least when I try, I always get told not to think that way, that the cancer is in my past and yadda-yadda. Even my onc gives me this crap. Last time I told him to stop that, since he, of all people, surely knows better.
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i dont think we ever can be sure. I view it as a chronic condition that might flare up again but in the meantime I take supplements and try to eat well and exercise daily, dont always succeed but I am nit being passive!
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Thanks for the feedback ladies. My infectious disease doctor's partner actually asked me recently if i was in remission and this is what really got me wondering what does that even mean?? I'm glad I'm not the not the only one frustrated or even confused by all this.I get that extra scans are not healthy and my MO has gone as far as saying they really don't do alot to ease your mind. She thinks that if it is clear you'll feel better for maybe a few days, but there is still the chance it could be there down the road. IDK, I didn't like that take and it felt a little brush off to me.
I brought up cure because I've seen here and heard about other women with stage I-II refering to themselves as cured. I thought this was something that only early stage BC was curable, stupid huh?
IDK, I'm about to start my 3rd week of rads and I am wrestling with alot of issues about my dx and tx. I spent the first few months just getting thru it and now I'm really starting to "feel" it if that makes sense.
thanks again ladies.
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Tang, I think many of us struggle with this, especially once the initial adrenalin storm of DX and treatment dies down.
Some doctors are fond of using the "cure" word, but IMO, even with stage 0-2, that is really misleading.
Your MO does have a point, and I don't think it was meant as a brush-off. The thing is that even on the most accurate scans, "stuff" has to have a certain size in order for the radiologist to spot it. You could have a clean scan and then discover 2 months later that you have mets. I actually think that careful blood work, including tumor markers, may give a better idea quite often.
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Tangandchris - I was told by several doctors that early stage is curable...and I think this is being told to many women. I just know as a stage 3er, I feel very different regarding my risks and the uncertianty moving forward. Actually, I feel most comfortable talking with other stage 3 and 4 survivors.
Momine - your #4 above is percise to how I feel. No one understands how difficult this dx is. Dealing with the aftermath of fear is unbearable some days.
Lily - I'm so thankful for healthy eating, supplements, and exercise too
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Although "clear" scans may give you a sense of relief, they are by no means an accurate account of your condition. The day after a seemingly good scan or test, the cancer may start growing and you will ignore early symptoms because you had a good report. It is important to remember that cancer does not grow gradually. It has growth spurts like we did when we were children growing up.
I have had two friends celebrate clean tests. One had mets that were confirmed two months later and took her life within the year. The other went three months when symptoms led to the discovery of mets. She died within six months. Both were stage II .
Personally, my initial dx missed several spots that were only discovered after mast pathology. I am fine doing the tests only when there is a concern and there is no hesitation in doing them if there is a problem. I live with the philosophy that I don't look for trouble because it will find you when you least expect it. I have also experienced this with my daughters cancer. The difference between scans taken only weeks apart were amazing when the cancer was actively growing. Then there would be no change for months.
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Can anyone tell me more about the tumor marker tests some of you have mentioned? My MO gave me the song and dance about scans not buying me any additional time versus when symptoms appear, but he's never mentioned tumor marker tests. Are they only for specific types of BC? I have ILC. Also, what are the symptoms I'm supposed to be watching for? Nobody has mentioned anything except bone pain. Is there anything else besides that? A woman in another forum I frequent had been stage III, and was just diagnosed as stage IV. She's been given only 6 months to live, and she had no symptoms even though the cancer is everywhere. You can't tell me a scan a few months ago wouldn't have found some of the mets and maybe given her a shot at a bit more time than 6 months.
I have to say that this whole issue really frustrates me. Even if a scan would only mean that I'd know a few months earlier that I'm stage IV (which is what my MO said), I'd want to know that few months earlier. I'd quit my job for one thing. No point saving for a long retirement if I'm not going to have one, and that's the only reason I'm still working. I'll stop ranting now.
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2tabbies- good questions. My ONC doesn't believe in doing tumor marker tests. Too many false positives. Plus she said its not necessary with my type of cancer which is Stage 11, Grade 1. I know when I have blood tests at my ONC appts there is some test they run that they monitor for changes. My ONC also told me if I experience any extraordinary pain that lasts more than 2 weeks to come see her - not my GP. My sister has ILC and she has tumor marker tests and scans.
I have joint pain every now and then mainly from the Tamoxifen. I honestly don't know how to tell the difference other than its unbearable, from what I've heard, and persistent.
Pip's post about the two ladies passing away after clean bills of health is scary. There are no guarantees.
Btw I had a disagreement with a lady on this forum about the word cure being bandied about. I think BC is treatable but not curable. Wish I believed otherwise.
My insurance won't approve scans for me because of the kind of BC I have.
Diane
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Diane, thanks for the information. I'll have to ask my MO about tumor marker tests. I'm also going to pin him down on these amorphous symptoms I'm supposed to look for. Sure in some cases of very fast moving cancer, I bet you can have a clear scan then symptoms show up in a few months. But I bet a scan would buy some of us time.
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Hi 2Tabbies. I understand your frustration as I used to feel the same way, but as I have survived for quite a long time now with no mets, despite being high risk at the time, I no longer feel the same way. Whilst living in Bermuda I was having my blood tested frequently and was being watched quite closely but when I returned to the UK I felt no one was interested and was told I had to be symptomatic before I was scanned again which scared me no end. Scans, however, do present their own risks (radiation exposure), which is one of the reasons they do not do them frequently. That said, my cousin lived in the US and was diagnosed with stage IV disease, was having her blood checked often and was told her tumour markers were good, but sadly died 14 months after diagnosis, so in my mind the tumour markers are questionable anyway. There is nothing you can do (I know it's not easy) but to try and get on with your life and just hope you never become symptomatic. I visited a specialist the other week to discuss my situation and he did ask if I wanted a scan and I said no as I feel I no longer wish to know if anything is wrong - if it is, it is and there is nothing I can do about it. However, it has taken me a few years to reach this place where I am now. I suppose it's all about making the most of what we have right now?
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2tabbies, with all you have had, have you ever been tested with li-fraumeni syndrome?
my place says cured. i dont believe them. they dont do tumor markers, but many of the other blood tests that they do in the CBC are potential indicators of metabolic and disease processes. my bloods were perfect in the beginning though, and not all that abnormal during treatment. i hate that stuff is too small to see.
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I'm right there with you ladies with the fear/frustration of not knowing for sure. As I finished treatment, I was asked so many times by people if my cancer was gone or if "they" had gotten all of it. It is still so difficult for me to say, "I don't know, but I hope so." My onc said they were "treating me for cure" and I hope they're right. I personally hope that the day I went in for surgery and had that nasty thing cut out of me was the day I was cured.
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As someone whose bone met was discovered by accident while having a PET scan, unrelated to bc, I have not "bought" more time by it's discovery, according to statistics. I will simply know about it longer. I had no pain or symptoms and no reason to believe that mets existed. I hadn't even started post bmx tx. I did end up having rads to the bone met, which is now necrotic and have been on an AI for almost three years. Never ended up having chemo but have been NED since. My mo does not do tumor markers and has cut my scans back to every six months, from every three because she wants to limit my radiation exposure. Do I think that this accidental, early discovery of my bone met will prolong my life? I'd like to think so but we'll never really know.
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We do know when we are NED as it means no evidence of disease so if we have no symptoms we are NED, thats the simplistic way I look at it......I don´t believe in the word remission as it sounds like a bogeyman lurking in the corners.......waiting to pounce........I want my annual breast MRI on my chest and remaining breast as that reassures me......and I get an annual scan of my ovaries to make sure they still cant be seen..........but what I beleive in the most are the stem cell tumour marker tests I pay to have done as they tell me if I have any metastatic stem cells circylating.......and if there are any cancer growth activating cells hanging out in my blood........so far my tests have shown changes but nothing sinister.......I am hoping my next ones will be even better as I have stuck to my supplement regime a lot more last few months........I know these tests are controversial but for me they are the best indicators possible for me, an ILCér.......
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hey tang ...I finished rads last week and meet with my MO tomorrow and this thread has provided me with questions to ask...
Like you, I got through dx and tx and did well..stayed focused and as positive as I could be...it was right where you are now that I had a hard time with it all...lots of questions...
I hope we can all move on from here, live life and heal....
Everyone should live each day like it is our last...bc or no bc...we are never guaranteed our tomorrows....today is a gift! Peace to all...Rosie
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This is a vexatious issue for me too. I have almost constant aches/pains/soreness/stiffness. It's really hard to work out what is significant and what I can ignore. I really feel I could be at the docs non-stop and in fact I actually am as I have other conditions. The whole thing I feel is exhausting. The two week rule is also difficult to interpret. With me one pain seems to melt into another, so I don't know what's going on to be honest.
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2Tabbies
The marker tests such as C27-29 tests for a protein in the blood that is present with BC. Range is 0 to 100. Anything over 50 (?) is risk for met.
The MO explained that he disappoves of frequent marker tests because they are over sensitive.Other factors can cause a spike such as antibiotics, kidney issues, some auto immune disorders and just plain wrong resutls. Once the marker is up the patient is stressed. Now the MO needs to order scans which are also freqently wrong showing "spots" that are begnin. Once a spot is seen the next step is biopsy. All the above is expensive,painful and stressful.
Statistics show that being diagnosed earlier or later wont make any long term difference however the stress of all that testing will. So he recommends a max of 2 x a year for the first 2 years. He even recommends a second marker test in 2 or 3 months before ordering all the scans and such. Symptoms, physical exam is the better first indicator.
My opinion? They dont know. I dont want to spend the days of my life whatever it may be chasing cancer. I will have 1 test a year. Thats it. I made up my mind ( I think).
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good for you raider girl!! I hope I can do that too... Rosie
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Interesting topic and views. I don't understand how each MO has such a different view on this. I was just recently diagnosed with local recurrence. My MO was completely shocked by it as well as my BS and PS. It was in the scars created by the sutures during my BMX in 2010. That scar area has alway itched, I've mentioned it to all my doctors and the same response was given, its just nerves healing. I have been going for routine chest CT's because of the lung nodule found in my initial PET. I was feeling very good about everything since I was getting the chest CT's every 6 months, figured if anything was going on the CT would pick it up…wrong! did not pick it up at all. By the time this was removed, I had 2 spots in the scar, one measured at 1 x .5 cms the other .5 x.3 cms. I know they grow in spurts but you would thing something would have shown up on the last CT which was about a year ago.
Anyway, my MO is treating this very aggressively and his exact words were this is very treatable if not curable. So I am holding on to the curable portion of that statement.
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Basia,
MO's have different views on how to deal with bc because so much about bc is still unknown. Not a very comforting idea for those of us who have/have had bc, but the unfortunate reality. On a more positive note, things are getting better, in terms of tx and diagnosis but clearly, not where we want them to be.
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kathec, I've never even heard of Li-Fraumani syndrome, but from what I just read about it, I don't think I have it. None of my cancers started at a particularly young age. I was 45 when I was diagnosed with my first one - ovarian. Also, of the 3 I've had/have, only breast cancer is commonly caused by Li-Fraumani. I don't have a family history of early cancer either. It was an interesting suggestion though. I agree with you on "cured." My MO said I should consider myself cured. Snort! Yeah, I'm cured until it comes back.
Lily55, I'll have to ask my MO about the stem cell tumor marker tests. I doubt he'd go for anything controversial though.
Wintersocks, I know what you mean about one pain melting into another. Something almost always hurts. So what's significant? I don't know either.
RaiderGirl, the tumor marker tests sound like what I had before my ovarian cancer surgery. That was Ca-125. My results were low enough that the docs were sure I didn't have cancer. But I did have cancer. Interesting, that your doc says getting diagnosed earlier or later won't make a "long term" difference. Frankly, I'd take even a short term difference. It's also interesting that they say the stress of going through the scans, biopsies, etc. will make a difference, they don't think the stress of living in constant limbo does? I find that very odd. I don't really want testing every 3 months or even 6 months either. But once a year like you're doing sounds reasonable to me. Otherwise, I feel like I'm burying my head in the sand. I also feel like I'm being treated like a statistic. I'm sure there are people for whom the tests and earlier detection did prolong their life just not enough of them to be statistically significant. But somebody was at the "good" end of that bell curve. I'd like to have the chance of being one of those people. After having twice been told by doctors that they were "sure I didn't have cancer" because it was statistically very unlikely and both times finding out that I did indeed have that "statistically unlikely" cancer, I've lost a lot of faith in statistics at least as they apply to me.
Basia, I hope you get that cure. Good luck with treatment.
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I posted a similar question a while back, as to why we don't get regular tests after treatment is over. My MO has the same policy as most, no tests unless I am symptomatic, apart from yearly mammograms on my remaining breast. However, she will do scans, "if I insist". After much agonizing, I am at the point now where I have decided, no scans. Why? If I feel fine, I don't want the stress of scanning, more scanning if they see anything suspicious, possible biopsies, etc etc etc.,
I AM SICK of cancer treatment, am almost done with it, and don't want to do any more !!! What if I do a scan immediately after I'm done and they find something? I don't think I could go through that torture (chemo etc) again so soon......not to mention the mental torture.
I figure if I am symptom free and feeling fine, I will have better quality of life doing nothing, versus than if I discovered something and had to start treatment again, which will make my life miserable. Especially if it's likely that the treatment won't cure me anyway.
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"I feel like I'm being treated like a statistic." That really sums it up well.
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I am bored
There is nothing on tv
Mary you are a statistic
I was taking care of a lung cancer pt last year. Quizzed her on scans. She said oh I had such and such stage lung cancer I get pet scan every year. Bladder cancer or same thing. And these were pts of my old oncologist in Virginia. i told myself I had to get scanned. My new oncologist in Virginia told me to come back in three months if it didn't go away with rest.
They scan lung pts with ct scans just to see if they have lung cancer . Smokers can have special ct scan even if they don't have C. There is something wrong there
So I came to texas for scans
He found early mets. That was last oct. I am NED now as of last spring. Chemo continues to mop up microscopic cells
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