Good idea to have tests or not?

[Caroline UK]

I'm seeing my onc tomorrow after Herceptin #9. She's excellent, and I feel I can discuss everything with her quite easily and openly.
My question now to everyone is, now I've had most of the initial treatments, what do people think about not having any scans, tests etc. That is, wait until I have (or, hopefully, don't have) symptoms which require investigation. My doctor's reasoning is that tests will only show NED for that particular day, and that it might only reassure me in the short term. Having said that, if I say I want to have all the tests going, she's happy to arrange for that.
I can't decide what to do for the best.
If I do want tests, what are they usually?
I'll be checking here tomorrow morning (UK time, give or take about 5 hours behind the US - I have a brother in Syracuse), before I go off to hospital, so any contributions, comments, gladly welcomed. I feel quite confused and unsure.

[Linda]

Caroline:
I think this is a personal decision, depending on your personality (how comfortable you are with the unknown), luck of how things go, your doc's opinion and how much your insurance/health program will cover. Standard scans here would be pet/ct, or chest ct and bone scan, unless you are having more specific worries (headaches, etc.) I'm stage 3a and have posted a few times about having had 2 false positives on routine chest ct's, where I was told that I had lung mets, which then turned out to be radiation scarring. For me, I'd prefer no more scans (except mammos and breast MRI, since I had breast conservation) unless there are symptoms. The false scares for me were awful and a terrible interruption of the post treatment life I was re-entering.
On the other hand, many women will tell you of finding progression very early because of routine scans and better treatment success because of that.
I think this is a six of one, half dozen of the other decision -- try and figure out what's best for you. How's that for a non answer!
linda

[PatS]

It seems most oncs don't do scans unless there are systems to warrant them. I have annual bone scan and ct of chest, abdomen, and pelvis, but I was diag. stage 3 so that may be why. I'm not sure what my onc does for earlier stages. Right now, for me, this is what I'm comfortable with and will probably continue this way. So, I think it's really what you're comfortable with. If you haven't had any scans at all yet, it might be a good idea to get them once for a baseline.

Take care,
Pat

[suzan w]

Great question! I am also heading out for the oncologist tomorrow...for my second 3 month check-up since I completed Herceptin in Oct. 2006. She does not believe in "routine scans", but will order any tests that I feel I want. I had a bone scan, CT scan, liver ultrasound before I started chemo. I had another bone scan last summer, my request. I had MUGA scans before and during herceptin. For my 3 month check-ups I have blood work; tumor markers, and she does a physical exam-looking, poking! Some days I think that I should have routine scans, and then other days I am fine without...will be interested to see the responses to your post!!! Good luck on your check-up tomorrow!!!

[Mary Anne in TX]

Hi Caroline! It's tough to decide about scans, etc. I will tell you that I have requested them once and my onc requested them once. I think one time I really needed them (emotionally) and the other time, I think he wanted to be sure he was on track for me. I have recently had shingles and have had to take pain meds to function some of the time - for sure the first 2 1/2 weeks, but what I've learned from shingles is how important it is for me to have some peace and eleviate as much stress as possible by killing the pain. My rad. onc. gave me permission to take care of myself by explaining how bad the stress is for my health. Sometimes I lose the ability to think sanely for myself. Good luck for making a decision that fits for you for right now and peace of mind. ma

[Mary Jo]

Hi Caroline,

Scans - Ohhhhhhhhhhh the debate goes on. If only there was that concrete answer and a way to definitely avoid a recurrence. Sadly, there isn't any sure fire way to avoid it. I think we'd all have scans on a regular basis AND I think oncs. would order them on a regular basis IF it prevented recurrence. Sadly, once again.........that doesn't seem to be the case either.

My onc. and I had a long talk about this (she doesn't believe in scans for early stagers either and she, too, is a breast cancer survivor) and she said that scans don't find everything - scans show many false positives and that the emotional toll and expense aren't worth it. I wasn't sure I agreed with her fully (of course I want to PREVENT ever getting this again) until I met with my radiation onc. here in my city. We, too, talked about it and he says he routinely orders them to follow up his patients. I asked if I wanted a PET/CT scan if he'd order it and he said he would. So..........my story begins.

The end of Dec. I had a PET/CT scan. The results showed my body was clean except for a lymph node in my left arm pit that lit up. My breast cancer was in my right side NOT my left. I had my left breast removed 10 months prior as prevention and no cancer was found in that breast. So, my surgeon and onc. agreed I'd have an ultra sound of that arm pit (actually my onc. said she'd ignore it as she felt it lit up for nothing cancer related) so I went ahead with it. The ultrasound was inconclusive as well and they weren't convinced it was anything to even biopsy. We agreed that I'd wait and follow up in 4 months with another ultra sound. There thought is that the lymph node was lighting up because of the mastectomy 10 months previous for whatever reason - changes etc. but said honestly they weren't sure. The radioligist and surgeon feel it's nothing but now that we "opened a can of worms" we can't just ingore it, my surgeon said. So next month I will have another ultra sound. I truly feel it is nothing. I feel no lumps and feel fine. However, I now see why these tests aren't done routinely. If given the opportunity to have a PET/CT scan again, without symptoms, my answer would be no. It isn't worth it emotionally to me.

That's my 2 cents worth.

Mary Jo

[hutchibk]

I know that not all oncs like or follow tumor markers. In my case, my tumor markers have corresponded directly with each of my 3 recurrences. The tumor markers have been our earliest indication of recurrence.

After my initial mastectomy and chemo (TAC), we did scans when we were done (CT and bone scan). Then we followed tumor markers and blood work for the first few 3 month check-ups. Then I believe we did scans again at a year out from chemo. All clear. Then at the next 3 month check-up we saw the tumor marker go up a tiny bit, so we noted to keep an eye on it. Two months later (one month before my next check-up) I had surgery to remove scar tissue from around my implant, and a tiny spot of tumor came off of the muscle with the scar tissue... that explained the rising tumor marker. My onc got me immediately into all scans (CT, bone, brain MRI and PET) and we found very early spots in my lungs and chest nodes. Immediately went on chemo for 5 months (Taxol/Carbo/Herc, stayed on Herc alone after that). 6 months later we saw the tumor markers inch up again and jumped into scans and found that there was a spot in the neck and the chest nodes were shining again. Immediately added Taxol back in and have been stable ever since last August. Until about 6 weeks ago when
the tumor markers inched up yet again... right at the same time that we had scheduled a coincidental MRI to look at and measure the neck spot as well as a quick check of the brain for good measure, and voila! 3 small brain mets.

I like following tumor markers, personally, as another tool to keep an eye on things...

[John21]

I am a believer of staying on top of things. If you were not, you would not visit this site everyday. Catch it early! My wife goes every 3 months. I hate them, but they are necessary. She has been stage IV for about 5 years now on and off different therapies. Demand them! It is your choice, not the doctors. Most doctors will comply with your wishes and three months is a good time frame.

John

[Hopeful]

Probably too late for Caroline's appointment, but this is an interesting thread. I have decided not to routine scans (other than mammogram and BSGI) because, mentally, I don't need the anxiety from possible false positives. My surgeon wanted to do tumor markers, but they are not reccomended for Stage 1 as they give both false postives and false negatives, and my onc definitely says no, and I say a resounding no, at least until it is demonstrated that I am no longer Stage 1. I think the commitment in light of no scans is to make sure to "listen" to your body, for something that seems strange, new, and out of whack, even if minor, and then seek follow up evaluation. I couldn't imagine doing tumor markers that may begin to rise for a good reason or no reason, then just waiting three months for the other shoe to drop and find out what it means, if it means anything at all. This is as much a mental game as it is a physical health issue. I think we all have to decide what best helps us to stay strong mentally, then go with it.


Hopeful

[Caroline UK]

Yes, I agree it's not the same if you're at Stage IV. John, thank you for your comments; I can imagine having a different way of looking at this question in that case. I was Grade 3, Stage II. Everyone's situations are different, so what feels right will vary from person to person.
Debbie, a lot of interesting and useful information from you, which I'll print off and refer to again.


I'm just back from my onc appointment. Other than Herceptin and anastrazole, I've finished what I guess is called primary treatment. I'd say that Hopeful's commnets sum up very well how I feel about not having tests. I came to this decision with the help of everyone's input, and am really grateful for the time you all took to help me out on this one.

[julierene]

What a tricky question. You are, unfortunatly in our high-risk category... so I would keep an eye on things. If you feel the tests are going to make you feel better, then I would. If you want to wait till you have symptoms, how will you feel about it IF you are in a worse predicament because you have more mets than you could feel?


I had a lot of mets, the only one I felt was the 1 in my back that was covering 2 vertibra. I was monitored pretty closely, and it didn't matter. I made the onc give me a test after a few months of real discomfort.

Tests made me anxious. But I think I would rather "feel" like I was on top of things rather than the possibility that it would come back and I blamed myself for not watching closer. For the guilt factor, I would say watch it. But it's such a personal choice. Anxiety vs Guilt - it's your choice. Which will be the lesser of two bad feelings?

[caya]

Just chiming in with my two cents worth -

I tend to agree with Debbie and Hopeful ... early stagers today are in a different category because we are getting Herceptin as a standard part of our treatment. I had this discussion with my onc. and will revisit it again - I specifically asked him about brain mets - he said it is rare for the mets from HEr2 to go to the brain first - and then he said - there are so many false positives from PEt/CT scans, MRIs etc. (without symptoms) - he said if we found "something", again, with no symptoms - we would have to do something, like brain surgery etc. He also reinforced the fact that I am early stage with great treatment options and he doesn't want me to constantly worry and get anxious about possible mets - He refered to the trials recently released that had such promising results for early stagers, and told me that I have a better prognosis now. This onc. is one of the tops in Canada, possibly even North America, so I feel I can trust his expertise.
I agree with the "2 week" rule here - if you have an ache that lasts more than 2 weeks, have it checked out and rule out mets... brain symptoms would not wait 2 weeks obviously...
Stage IV women are in a totally different position, and in their case I feel it is prudent to have scans, tumor markers etc.
Thanks marejo for relating that after all your experience if you had to do it again, you would not have scans etc. without symptoms - I will really take your opinion to heart and will remember this in the future.

Caya

[dlaxague]

Are we talking about regular scans after primary treatment or when stage IV? There's a difference between the two, regarding surveilance. I think the discussion began about follow up after primary treatment.

Studies have shown that there is no benefit to survival nor to quality of life in finding initial mets before symptoms. The NCCN guidelines have references for this, and no scans nor tumor markers are included in their follow up recommendations after primary treatment. There is no such thing as finding mets "early". In fact, finding them "early", if that means before symptoms, simply means that one lives longer with the knowledge of the existence of mets - not that one lives longer overall. And as others have noted, the emotional cost of false positive results is high.

This is not to say that nothing can be done, nor that symptoms should be ignored. The two-week rule seems reasonable to me. Unexplained symptoms that last for two weeks should be worked up, ruling out mets FIRST, not after trying all the usual remedies. An example would be back pain - you would not want your provider to treat or evaluate you for muscle strain until after mets had been ruled out. Some providers will want to do it the other way around - treat the garden variety possibilities first and investigate further only if that doesn't work - that's where we need to be our own advocates and push to rule out mets as the first step. For this plan (scans for symptoms only) to work, the index of suspicion has to be high for mets, for any symptom. You don't want mets in any location to progress to the point that irrepairable damage has been done.


There is one exception to this rule which is brain mets - treatments and their successes vary depending upon size and extent (and options are much better when small and/or few), but brain as a site of first recurrence is fairly rare. Once mets occur elsewhere, then regular brain surveilance is a good idea, and it could be argued that it's a reasonable option after high risk primaries as well, although I don't think there is much hard evidence on this, yet.

I know that it's hard to accept that scans or markers, in the absence of symptoms, don't have much to offer us. If they could come with a warranty - disease-free-now-and-forever - of course we'd want them. But they can't even guarantee us tomorrow disease free. So since I have no choice but to accept the uncertainty, I find it liberating to know that at least I will not have to endure, at some arbitrary interval, the anxiety that accompanies most of us as we anticipate the tests and then wait for the results.

It could be argued that the same principles might apply to stage IV NED, but I doubt there's evidence on that - probably because treatment of stage IV is improving so quickly that it's hard for evidence to keep up.

Debbie L.