MRI, mammo, MRI, mammo, MRI, mammo.... when does it all end?

cycle-path

I was diagnosed with DCIS in 2009. I was 58, it was small. I had a lumpectomy and IORT. My BS said I would need 2 years of alternating MRI and mammo every six months. I did that, no problems.

After the 2 years she's continued to order the alternating MRI and mammo every 6 months. She claims that's what she always said but it isn't. I just can't do it. I don't mind the mammos at all but the MRIs are torture. (It makes no difference why, so there's no reason to discuss that.)

Do other docs want this for patients in similar situations? It's not what she told me would happen. I've had a couple of different insurance policies, and one of them was refusing to pay for the MRIs because of NED, but I think the one I'm on now will probably pay. I just don't see the need for it.

If something is found on a mammo I'll grit my teeth and do the MRI, but otherwise I think it's overkill.

Any thoughts other than "Why don't you want to do the MRI?" Sorry to be abrupt but that's not the issue I want input on.

ballet12

Hi cycle-path, I guess we've all got something to complain about.  My situation is the opposite.  I'm only getting yearly mammos and no MRI's at all (after that initial diagnostic period). My DCIS was extensive, multifocal and high grade.  I am seen at one of the top cancer centers in the country and this is their protocol.  I wouldn't mind a periodic MRI, but they don't do one unless they find something, and the mammos are yearly (and not 3D) with nothing at the 6 month point.  I am continuing to see the radiation oncologist who is doing a breast exam at what happens to be the 6 month point. It may seem odd to see an RO for this, but she's amazing, and she offered to continue (without my asking), so I'm doing it.  It's really more like "laying on the hands" rather than diagnostic testing, but at least I feel like someone's looking in on me.

Annette47

It sounds like each treatment center has a different protocol. I've never had a MRI - even when first diagnosed. Granted my breasts aren't unusually dense and a mammo picked up my cancer in the first place, but I do read of people who have things found on MRI that didn't show up on mammo and well, the mind goes there occasionally.

They don't tell me much beyond the next 6 months, but my understanding is I'll have one more 6 month mammo on the “bad" side in June/July, and then if that is clear, just have annuals in Dec/Jan on both sides. Up until now I've been having both sides done yearly, and the cancer side done again at the 6 month mark.

In terms of other follow-up, so far the surgical oncologist, the medical oncologist, and the radiation oncologist are all still seeing me every 6 months, and they all do manual exams, although I don't know how long that will continue for. The MO, I'm pretty sure it will be for as long as I am on Tamoxifen (which he said “5 years and we'll see" so could be up to 10 years); the BS said “we'll be keeping a close eye on you for a good long time" and the RO hasn't said other than that I have an appointment with him next month. He's actually my favorite out of the three, so if I had to pick just one to continue with, it would be him.

Sometime I feel like I should ask, but I haven't yet ....

redsox

I was also diagnosed with DCIS in 2009 and had lumpectomy and WBRT and tamoxifen. My follow-up has been mammograms once a year which have been 3D for at least the last 3 years but no other tests.I see the rad onc and the med onc each once a year staggered by six months. I saw the med onc every 6 months until I finished tamoxifen. I haven't seen the BS since a few months after surgery. If I routinely had issues to consider after imaging I would need to see a BS but I haven't had those issues so far.

The follow-up patterns for DCIS really vary but it is important to have regular follow-up. I have several doctors who would order the testing. Maybe you could just use one more consistent with what seems right to you.

cycle-path

I think some of the issue here may be that my BS is co-located with a breast radiologist. They have a mammo machine and an MRI machine right in the office. The two docs used to own the practice, which probably really motivated them to push for MRIs, but a few years ago they sold the practice to a big teaching hospital nearby and now they are basically just employees.

But the same protocols persist, possibly at the urging of the teaching hospital.

I've asked a couple other docs for their opinion about the mammo/MRI merry-go-round, but everyone defers to the BS. (Everyone except a holistic gyn who I no longer see. She eschews MRIs entirely as she believes they show too many false positives. She says she has never heard of an MRI finding an actual cancer that a mammo didn't find, only false positives. However, the main reason I no longer see her is that she's a bit nutty.)

Due to insurance changes I've had some doctor changes in the last few years, but now I have a plan that lets me see whomever I wish. Maybe I should just go back to my replacement gyn and ask her for a mammo referral and go from there. Take the BS out of the equation.

have2laugh

cycle-path-It is confusing how different protocols can be. Ballet12 and I have talked about the variation in our treatment. I had five MRIs last year and remain on the six month MRI/mammo plan for now. By the way, my DCIS wasn't seen on mammo-MRI picked it up and even then area was much larger than expected. I do have something other side which is "just below threshold" for biopsy, went in for biopsy and they aborted at last minute. This area, ongoing edema, seroma etc in surgical side seems to be reasoning to keep checking. I hate the MRI though I am getting used to them but will push for spacing out in June when I do next round. I did get my OB to push back every 3 month ultrasounds to 5 months and will hope yearly after that. At a certain point, it seems like there is always going to be a little something there and feels like you want to stop looking for trouble! I also switched jobs so I could switch to one center for all tests and hope this will increase their confidence in a less stringent follow up.

 

ballet12

Hi Cycle-Path, just to add, Memorial Sloan Kettering agrees with your "nutty" holistic GYN that MRI's show lots of false positives.  They don't use MRI as a routine screening for follow-up of DCIS, unless the person is BRCA positive.  In that case, the index of suspicion is much higher that there will be a recurrence or new bc.  About using machines because they are in the office; well, unfortunately, there probably are instances where they refer patients for procedures, in part, to make money--to pay for those machines.  I don't know about your surgery-radiology site, but I'm fairly certain it does happen.  I have a friend who went for a routine breast ultrasound screening (and by the way, that isn't always recommended for those with no history for bc or DCIS or atypia).  Anyway, the radiologist asked her if she wanted screening of her thyroid also (no history here, either). I don't know if money was a motivation for this screening, or some other reason. Anyway, they found some nodules (50 percent of us have microscopic nodules), which were biopsied as "indeterminate" and she, now, has to have half of her thyroid removed to see if there is cancer. Once they start looking, they have to act. Maybe, it will turn out to be a good thing for her, but most thyroid cancers are very slow-growing (I said most) and many people just die of old age never knowing they had it.)  She was told that it was unlikely to be the aggressive form.  So, screenings are done sometimes to make money or sometimes just because the equipment is there.