Post treatment scans - what is your philosophy?

[Paris]

As I have been taken off herceptin due to cardiomyopathy I have now entered the post treatment stage of my life. At this point I need to decide what I want to do regarding the scan/no scan philosophy that doctors have. My current onc. does not do scans unless there are symptoms. I can live with this to a degree, however, he doesn't listen well enough when I bring any health concerns or side effects up. I complained for months of fatigue and exercise intolerance with shortness of breath. Onc. refused to believe it was herceptin related. I saw a cardiologist, had many tests and yes it is herceptin doing the damage. I am at a cross roads with my onc. because how am I to trust him if I have symptoms down the road? Is he going to blow me off for six months until I am really ill? I am also worried (although I am living with it) because I am the patient that has had all the things happen to them that statistically shouldn't have happened. I was diagnosed at 40, am hormone negative, had incredible pain with the expanders, got an infection in nipple six weeks after nipple reconstruction, am in the 7% of people that get herceptin damage not tied in with A/C chemo. So with my small cancer statistically speaking I should not recurr. I'm not so sure of that. Personally I am more comfortable with trying to stay ahead of the game with scans than waiting for something to happen. I don't think my onc. is going to see things my way.

I could go down to PENN as I've heard they do more in the way of follow up. I know I at least need to sit down with my onc. to discuss this. It would be very helpful to know what you ladies do in terms of follow up and your beliefs.

That said, I fully intend to live a long and happy life whatever happens along the way!

[betlen5]

Paris, the Doc's should be listening to you very carfully...Where do you live? I always have tests done before any surgery.

God Bless
Betty

[goops]

I am still on Herceptin but I found out that my doctor also does not believe in doing scans unless there is reason to suspect problems, since radiation from these tests can cause cancer - I am fine with that.

If your doctor is not listening to you I think you should find another oncologist. I was not happy with my original oncologist so I changed - and it is a decision I have not regretted.

[LOPSIDED]

This last December my doctor ordered a ct of the chest because of my coughing. I ask him to go ahead and let me get ct of pelvis & abdomen also because it had been almost 6 months. I just had a feeling that I should get checked because of how aggressive my cancer is-------pelvis & abdomen both showed enlarged lymph nodes. Sometimes I just tell my doctor straight out what I want, he knows that I don't run to him every 5 minutes, he takes me serious.

[dlaxague]

Hi, this is a great question and the last time it came up, there was a lot of emotion generated as we talked it through. I'm going to try and be ultra clear and polite with my words. Feel free to call me on it, if I don't sound polite and dispassionate. I like lively debate. I learned a lot last time, and have altered my stance a little, although niggling questions still remain (for me).

Standard US guidelines do not recommend scans or markers for follow up after treatment for primary breast cancer. They are generic guidelines (for all sub-types of breast cancer, all primary stages) and are from national and well-respected sources (ASCO and NCCN). The research to support this is older (mid-'90's, if I recall). The reasoning, supported by this research, is that although scans and markers CAN detect a recurrence before symptoms announce it, it does not seem that this makes any difference to length of survival nor to quality of life. The rule of thumb for most advice on this is that any symptom lasting two weeks should be investigated, and cancer recurrence should be ruled out BEFORE garden variety causes are considered.

There are examples on this list that prove this point: for example, women near death with extensive lung or liver mets, who responded to treatment (typically chemo and/or Herceptin) and became NED for extended periods, with maintenance Herceptin and/or hormonal treatment for years afterwards. There are other examples of women with small, apparently less-threatening mets who had a more steady progression despite all possible treatments. And then the ones whose mets were scan or marker-detected who had excellent response and long remissions. And of course, many stories in-between. It does seem to me to be more about the cancer's biology and response to treatment than about its size. So much variation in each woman's cancer that it's impossible to make reasoned decisions based on anecdotes or even on one onc's experience. Large trials are the only way this information becomes clear.

It is argued by others that these guidelines are outdated and may not apply to all subgroups of breast cancer, HER2neu+ in particular. It is argued that if found at a smaller size, perhaps less harsh treatments could be used initially, for example a small liver met could be treated surgically, with RFA, or hormonally, while larger mets that compromise liver function demand quicker, harsher action with chemo and targeted therapies.

It is argued by some that this approach (earlier detection) actually impacts QOL negatively, as one lives longer with the knowledge of mets but does not live longer nor better overall. Oncs who follow these national guidelines will add that in their experience, another QOL issue is the anxiety caused by positive results on markers when no disease can be detected, causing a tense wait for the next round of tests.

On a slightly different topic, but related - it is argued by some that women with quiescent or NED mets who are on relatively benign treatments (Herceptin alone or hormonals, for example) are better off to wait for symptoms of progression before investigating, as opposed to scanning or doing markers at regular intervals. The thinking here is that once recurrence happens, there is a tool box available. It may not matter exactly which tools are used when, but since there are a limited number of tools in the box, it's wise to use them up a slowly as possible. Jumping on a small, new, symptomless met may seem intuitively smart, but it's also possible that whether small or huge, there are "x" number of months of response available from that particular tool and it's better to wait and use it when symptoms herald the met. Does that make sense? This style does not suit everyone but it's a perfectly reasonable style.

Sorry, back to the topic at hand:

It is known that for brain mets, it is absolutely true that earlier/smaller detection offers more and better options for treatment, especially local treatment, which has fewer side effects and leaves the big systemic or whole-brain guns for later. But brain mets is only very rarely the first site of recurrence so routine brain surveillance is probably better reserved for follow up of other recurrences.

Still, it's logical to ask the question of why this same principle could not apply to local control of mets in other locations. There is some evidence that local control of small single mets outside the brain can result in prolonged periods of control, but the number of women for whom this would make a difference is perhaps small.

So what to do? I'm going to post some devil's-advocate questions and musings.

Markers are relatively cheap. Should everyone get markers done regularly? Or just certain "high risk" cancers? How regularly? A fast-growing met can get pretty nasty in just a few months. If this ultra-early concept is of importance (still, remember, it is an "if", if we are going to practice evidence-based medicine), and we're only doing markers on high risk women who are likely to have these more-aggressive cancers, then maybe markers should be done monthly? And for how long? Two years? Ten? That's a lot of anxiety for most women. The mindset of someone being tested monthly for recurrence is going to be affected. Is it healthy to live in such a state of hyper-awareness/vigilance, for the small and yet-unproven possibility that such vigilance might make a difference? I have changed my stance on this, since the last discussion. If someone chooses to do regular markers after full informed consent of the risks and benefits, I am okay with that. It would not be my choice, but it's hard to argue against it if it feels right for others.

And we can't talk markers without mentioning that one drawback is their unreliability. Too many false positives (anxiety, expensive follow up scans, no recurrence). Some false negatives - not all recurrences raise markers even when they are large and extensive. And no way to know, unless there IS a recurrence, for which cancers markers will be a useful tool. I think that IF we could develop a reliable marker, and IF we could prove that local treatment options improved clinical response (survival or quality of life), then we'd be getting somewhere.

Regular scans as part of follow up could be justified with the same arguments except for two differences, and in my mind they are major differences. (1) The technology is wildly expensive and in my opinion (OPINION, mine only), to demand scans of any kind after adjuvant treatment, in the absence of symptoms, simply for reassurance/peace of mind, is wasteful of our limited resources, and selfish. (2) There is the issue of radiation exposure involved in scans and the carcinogenic potential of that exposure, especially long-term. Plus, scans (and for that matter, markers also) done only for reassurance/peace-of-mind offer that reassurance only for that moment - they do not carry a warranty (cancer could be raging the next week).

Might it be better to find a way to come to terms with the uncertainty? Does the ultra-vigilant style appeal to us, in part, because it offers us that illusion of control? I am not saying that this is true for everyone, but I know that it's true for me and I encourage you to consider the question dispassionately. I would hazard a guess that for most of us on this list (who desire information and understanding or we would not be here), one of the harder aspects of our cancer diagnosis has been confronting that uncertainty - the realization that for the most part, we have almost no control or our cancer. We do have control of how we live with the uncertainty. Finding what works for each individual in that regard is life-enhancing, and the exploration is one of the gifts of cancer.

Phew, have you made it this far? More questions than answers. Certainly we have more answers than our mothers did. But each answer opens up so many more questions. For this particular question, the answer may be a long time coming so in the meantime we can inform ourselves as best we can, and make the decision that seems right for us, individually. No one else can make these choices for us. (If our chosen style of follow up is not the same as our onc's then it might be time for a new onc.)

Debbie Laxague

[madubois63]

This in NOT an attack on you or your words...just my reply/thoughts to a very well written post.

Markers are relatively cheap. Should everyone get markers done regularly? Or just certain "high risk" cancers? ...And we can't talk markers without mentioning that one drawback is their unreliability. Too many false positives (anxiety, expensive follow up scans, no recurrence). ...
Markers have NEVER worked for me. With 3 occurrences of bc and 1 bout of leukemia, my numbers have always been steady. Since this is the cheapest method of watching , it would be nice if it worked!
Regular scans as part of follow up could be justified...The technology is wildly expensive and in my opinion (OPINION, mine only), to demand scans of any kind after adjuvant treatment, in the absence of symptoms, simply for reassurance/peace of mind, is wasteful of our limited resources, and selfish.
Call me selfish!!!
...There is the issue of radiation exposure involved in scans and the carcinogenic potential of that exposure, especially long-term. Plus, scans (and for that matter, markers also) done only for reassurance/peace-of-mind offer that reassurance only for that moment - they do not carry a warranty (cancer could be raging the next week).
What are the scans going to do?? Give me cancer - LOL. Been there, done that! I fight each day trying to make it to the day there is a cure. I like the reprieve I get after scans are gone and clear...Last August, the scans were good - I had a GREAT summer/fall. I more than deserved those few months of peaceful sleeping!! November the scans showed a reoccurance. Caught early enough, things are underway for keeping it under control and making my way back to NED. There is never a guaranty of anything in this life. Each day is a gift. If a few of those days are showered with a peaceful reassurance of a healthy body even for just those few days, I will take it!!
Might it be better to find a way to come to terms with the uncertainty?
I have come to terms with the uncertainty. Just because I continue to get scanned does not mean that I haven't. This is a tool in my fight.
Does the ultra-vigilant style appeal to us, in part, because it offers us that illusion of control?
I would like to say I have no illusions about this disease, my control over it and my life expectancy, but I can't. That is also one of my tools in fighting this disease and in keeping some sort of sanity.
Phew, have you made it this far?
Yes...
...make the decision that seems right for us, individually. No one else can make these choices for us. (If our chosen style of follow up is not the same as our onc's then it might be time for a new onc.)...
Very well said!!In the end, the choice is yours and yours alone!! If you are not happy with your doctor, get a new one that will listen to you and do whats right for you!! You are the boss. I know not everyone can change doctors that easily or have access to as many doctors that I do, but best to try. My girlfriend (a gift of this disease) stood in front of the door as her onc tried to run out on her. She told him they weren't leaving until he listened and looked her in the eye. She made her demands and he finally listened. They are friends now, and they make the decisions together.

[dlaxague]

Hi Maryann,

First, a technical question. How did you do that so that your words and mine are in the same window? I like that style of conversation.

I didn't call you selfish, not at all. Please don't misunderstand. That comment was meant to apply ONLY to those who demand scans for follow up of primary breast cancer when no symptoms nor elevated markers exist, and if I didn't make that clear, I apologize. I did digress a little in that one paragraph about women who choose different styles of follow up when NED after a recurrence but I only mentioned that watch-and-wait as one possible, plausible style. It's more usual to scan regularly after a recurrence (including brain) and that approach makes good sense to me. After a recurrence, follow up is a whole different issue and I was not talking of that circumstance when I made the "selfish" remark.

Last time that I participated in this discussion, I offended some when I tried to separate out some of the differences between after primary disease vs. after a recurrence. There are many issues shared by all but some are specific to that circumstance. Again, my comments about control and uncertainty were spoken only to those considering style of follow-up after primary breast cancer. And I didn't mean to imply that one (acceptance of uncertainty) could not co-exist with the other (vigilance). As usual, I rambled a little off-topic there but I do think that it's helpful to ask ourselves those questions about uncertainty and control. As a recovering control freak, I know those questions rattled my cage, in a good way in the end.

Thanks for continuing the discussion. I like your paragraph about "we are the boss". Yes, and that includes also those who find an onc that they feel good about and follow his or her advice blindly. They are the boss in deciding that that's the best way for them. That is not the style for most of us on this list (laughing!) but it is the right style for some.

Love,
Debbie Laxague

[madubois63]

First, a technical question. How did you do that so that your words and mine are in the same window? I like that style of conversation.
Easy - first copy the post you want to reply too. Paste the post in the reply box. If you "go advanced," you can change the size, color, font and style of the type so that it is easier to differentiate the original post from the reply...
I didn't call you selfish, not at all. Please don't misunderstand. That comment was meant to apply ONLY to those who demand scans for follow up of primary breast cancer when no symptoms nor elevated markers exist, and if I didn't make that clear, I apologize.
I didn't think you were calling me selfish, and please do not apologize - it is not necessary with me. I should have said that knowing what I know now, I WISH I had had the scans on a regular basis. Living in a dream world thinking a relapse couldn't happen to me was a huge mistake for me. I truly believe if I had gotten follow up scans and caught the relapse earlier, treatments would not have had to be so aggressive and I might not have had to deal with leukemia. I forget that you can't read my mind. I also forget that everyone reading doesn't know everything about ME and my journey (as you all should - lol).
I did digress a little in that one paragraph about women who choose different styles of follow up when NED after a recurrence but I only mentioned that watch-and-wait as one possible, plausible style. It's more usual to scan regularly after a recurrence (including brain) and that approach makes good sense to me. After a recurrence, follow up is a whole different issue and I was not talking of that circumstance when I made the "selfish" remark.
Sometimes I try to answer from different points of view - before reoccurance and after. It's hard for my little brain not to get confused. I probably shouldn't do that.
Thanks for continuing the discussion.
No problem - thanks for making me think. If I don't use it, I DO loose it...

[Mary Jo]

................ Debbie and Maryann for those interesting, informative and thought provoking posts. I loved them and agreed with both of you (just call me Mrs. StraddleThe Fence ) ........... seriously, I truly do understand both points of view.

I am a 2 year 7 month survivor. I have not had a recurrence and do not get routine scans or markers. I have had scans when symptoms warranted. To date I have had PET/CT, abdominal CT and a colonoscopy thrown in for good measure. So far so good - NED!

I understand the "fear based" way of living with frequent scans for the "peace" of knowing you have not had a recurrence - that would be me - but I also understand the "knowing what I know now" mentality. Although I have not fallen into that group, I know that if I ever do I will probably think that way because that's me. Not only "Mrs. Straddle The Fence" but also "Mrs. Control Freak!"

As I stated in another post about supplements and the like, it's all a crapshoot to me. It's becoming clearer and clearer everyday that there is no right or wrong. Most often it's about what is right for each of us personally. As our cancers are all different, so are our personalities. We all need different things and we all handle things in different ways.

Well, anyway, just wanted to chime in to say "thanks" for such well written, thought provoking posts. I haven't read such interesting posts in a long, long time.

Hugs to you guys.....

Mary Jo

[Paris]

Hi Debbie, Thank you for your very thought provoking post! Ahh, if treatment decisions could be a simple yes or no answer. And like you said, we have so many more answers than our mothers did but it doesn't always make it easier. Unfortuately, there is no "right" way. Studies are quickly outdated in this era of continuing new diagnostic tools. Yes it would be great if we all could avail ourselves to these tools but the fact of the matter is some insurance is more costly than others, we may or may not be able to afford the best plan and it scares me to think about what people with no insurance do. I guess in this way it may be selfish to scan for peace of mind when there are those who don't have this luxury.

I think so much of how we deal with this disease is affected by our prior life experiences and our own psychological makeup. The same choice could be viewed completely different by two different people based on this.

So what do we do? Maybe it's a matter of our doctors creating more individual post treatment management instead of putting us in one "group" so to speak. I think we need to advocate for ourselves and what WE need and not what's easier and cheaper for doctors to do. I wonder how many decisions are based on what the insurance companies and drug manufacturers pay the doctors. I also hear from too many survivors that their oncs. don't listen to their concerns and that they need to "stop complaining". That isn't fair or right.

I look forward to continuing this important dialogue.

Jamie

[Bill]

Excellent discussion, ladies. Many good points were made. I'm going to sit on Marejo's fence on this one and watch the sun set. Debbie, don't worry about the rambling. I took the gold medal in that one and haven't been kicked of the site yet. You Ladies have given us all food for thought. In my opinion, if you're not content with your onc.'s philosophy on follow-up scans and testing, as said, have a good old-fashioned sit-down talk with them, and if you're not satisfied after that, seek another doc. At the end of the day, you don't want to fret and worry yourelf sick all night wondering what's going on in your body. You want to hear,"Still all clear", or God forbid, it's not good news, but at least then you are fore-warned and can rally all of your resources for a new plan of attack. Uncertainty and the "fear of the unknown", is the worst thing for most of us. Love ya, Ramblin' Bill

[Mary Jo]

Hi Jamie,

I so agree with the thinking that we shouldn't all be placed in a "group" as to how to treat us. We are all individuals and all require different things. There is no "right" or "wrong." What is "right" (in my opinion) is what the patient requires to live a quality life. That doesn't just mean those that have mets but those who are early stage and who may need that added benefit of "knowing" there is no cancer. My doctor's philosophy is this:

"As a physician, I feel it is important to care for patients as whole, combining the specific treatment for their disease with their desire for quality of life. Even when their disease is no longer responding to treatment, there is always something that can be done to help them deal with their illness. Communication with my patients and educating them about their disease is an integral part of my practice." Dr. Christopher Chitambar - Froedtert and the Medical College - Milwaukee, Wisconsin.

He listens (as they all should) and when he "hears" (even though I haven't spoken the word "fear) that Mary Jo is afraid of recurrence because of some pain or something he will order a test of some sort. He feels peace of mind is an integral part of living with this disease. He is right - of course.

I, for one, would not want regular scans. I personally couldn't take the stress of it HOWEVER if I wanted them I feel you should have the right to have them.

Sadly, there is always the dang insurance that gets in the way of that and that, too, is wrong in my book.

Hugs to you all.....

Mary Jo

[Paris]

Did you make your own choice about post treatment surveillance or did you go with what your doctor advised? Did you get a second opinion on this? I want to have an educated discussion with my onc. regarding this and I wonder whether I should consult with the onc. who I got a second opinion from for my original diagnosis. He works in a large cancer hospital and works only with breast cancer patients. My current onc. treats all types of cancer.

Current onc. does not do routine scans and I'm not sure about bloodwork. It would be great to find a solution that works for me. I just know that I better have my facts straight before approaching him.

Your responses have really helped!

Jamie

[Mary Anne in TX]

No scans for me now! After lots of thought and with the ok from my onc I will not do scans for now! I had treatment today and he checked my neck and under my arms for anything and found nothing. I did have a tumor marker test, but know fullwell that it is only a guide. I talked with the financial part of the clinic also about helping me with getting my insurance to pay for more treatment with herceptin.
As I read the discussion, I realized that I have journeyed from one side to the other and back again on what seems necessary and responsible for follow-up care. For now, I'm that person believing that "showing up" for the herceptin is enough. ma

[AlaskaAngel]

Jamie/Paris,

You and I are both stage I's. It is hard to find a comfortable place to sit on this one, since some Stage 0's and I's do recur, and it even may be a picture of no recurrence until late in the game but perhaps more common farther out. You are HR negative, I am HR positive so to me that might favor more frequent markers and scans for you as compared to me.

dlaxague and I disagree somewhat in our interpretations of studies and conclusions made about this question. It is sort of like asking whether a glass is half full or half empty. I interpret the recommendations as meaning there is no clear evidence one way or the other plus calling for additional study to reach a firm conclusion. This perspective is truly different from the interpretation that based on studies there is no proof that more frequent testing is helpful. Both say the same thing but from different perspectives.

dlaxague and I agree about the importance of the question itself, based on the awareness that resources are limited, and testing can be expensive as well as resulting in further radiation exposure. The more health care costs us all, the fewer people who are likely to be able to get it. In that regard there is some very real logic to making sure testing is actually meaningful.

However, it makes no sense to me for doctors to make it unlikely for those who desire testing and don't have anxiety about it to be prevented from having testing based so that those who do get anxiety and have the ability to refuse testing don't have to consider the question in the first place.

Both my PCP and onc feel the markers are useful if not yet entirely accurate. As a T1c with some DCIS I have markers with each checkup (first 2 years quarterly, then every 6 months for 3 years, and now annually). Because I did not get trastuzumab or lapatinib and am now over 5 years out, I am going to see my PCP to try to continue markers every 6 months.

Otherwise, I went by symptoms. I did get a brain scan once when I had some repeated common vertigo episodes, so I now have a baseline to go by if I need it. I also got some CTs for right-sided abdominal pain accompanied by elevations in liver labs, because the liver is so hard to verify for recurrence without those.

Just one NED T1c opinion at 5 years out,

AlaskaAngel

[chicagoetc]

This is a little off track...but my oncologist says I will be seeing him or my surgeon at three month intervals for five years. After that I think I go in every six months for another five years. I don't know what they think of markers but I think they will be doing exams/looking for anything unusual, able to hear problems that may need looking at further. Is this usual?

[PinkGirl]

Hi Chicagoetc
That sounds about right. I have seen my onc.
every 3 months since dx. I will continue that
for 5 years. I don't have any scans unless I
complain about pain, and mine doesn't do
markers either.

[Diane H]

Please forgive me if I am way off base here, am going on remembered posts and articles I have read over the past few years. Was thinking that brain MRI's are important for HER2 people, and that there was a greater likelihood of brain mets for us. So perhaps brain scans might be in order if not the others?

With hope, Diane

[PinkGirl]

Hi Diane
Yes, there have been some posts about Her2+
breast cancer metastasizing to the brain - also
some about the chemo drugs not crossing the
blood/brain barrier. I think someone posted once
that they fake headaches in order to get their
oncs to order brain MRI's. I don't think they
are routine scans if you haven't metastasized.

[Paris]

Just a thought and I understand the validity of each side of the question regarding scans. We are told to get a baseline mammogram between 35 and 40 years, then get an annual mammogram beginning at age 40. If we were to follow the guidelines used to scan for recurrance then no one would have a mammogram until they had symptoms i.e a visible lump or symptoms elsewhere in the body. What would the survival rate be if this is was the protocol? How many more people would be diagnosed with late stage cancer? So why wouldn't we want to have routine scans to find metastisis early when less agressive forms of treatment could be used instead of finding it late and only having the "big guns" to use? How bout that QOL?

Granted I know the latest scanning methods are not foolproof and you could have a pet scan and six months later have a recurrance that wasn't there before. The same thing can be said for mammograms though. They don't find all breast cancer. We don't have a foolproof screening tool to diagnose primary breast cancer yet we get a yearly mammogram. We don't have a foolproof method for detecting recurrances at an early stage yet the guidelines are to do no scans until symptoms are present.

Can anyone make sense of this?

Jamie

p.s. I enjoy reading everyone's opinions!