east coast doctors

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I don't mean to pry, but which corner of the NE are you in? There are major cancer centers in Boston and NY and probably many in between that I am not aware of.

I'm in Mass but near NH border so my oncologist doc is in NH. Love her but she does not do scans and while I can understand her reasoning I'm not crazy about it. We do blood work and she checks the CA 15-3 markers each time. I have developed a good relationship with her and have learned to live by the two-three week rule of thumb if something hurts but I will also say she knows I'm not a complainer so if I say something is not right or has been hurting she will order the scans.

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As far as I can understand, the thinking is that scans are useless unless you have symptoms (i.e. if you have no symptoms, then probably the scan won't find anything anyway), and that routine scanning just exposes you to needless radiation.

On the tumor markers, the issue is that they are extremely unreliable. My mother had them done for 5 years after ovarian cancer, and they came high twice, due to things like infection, not cancer.

However, I agree that for us stage 3 ladies, it seems sensible to do something.

I just had my second, annual round of scanning after my surgery. The idea is that, since the scans were clean (YAY!), we will not continue to do them as routine. However, we will do an annual chest X-ray and a liver ultrasound, then scans if there are symptoms or suspicious findings. This sounds sensible to me. I can understand not wanting to scan all the time, but a chest X-ray, for example, is not a lot of radiation and it is cheap, quick and minimally invasive.

Mary625 - My Onc has done scans when I had symptoms of back and hip pain he marks on the scan order "re-stage". This totally freaks me out to see that. Yet the scans have been clean. I hate going for scans. It's so stressful. He doesn't do them routinely. He ordered scans following diagnosis and after complaining of bone pain. Which was probably caused by AI's aggravating arthritis. There have been things that showed up on scans that scared me. Once, a spot on my liver "too small to characterize", and "edema in the clavicle" area, which my onc attributed to rads. Scan;s also showed lung spots which turned out to be nothing also. You can just go crazy with what comes up on scans that turn out to be nothing. I am in NJ and I go to the John Theurer Cancer Ctr.

The topic caught my eye- as I was treated at MGH and Farber. There were MRI's and mammograms and ultrasounds. My onc, who I think is a rock star, doesn't do tumor markers because she finds them unreliable. In the beginning I wanted more scanning, more testing. Now, almost 5 years out, I want less. It is too much anxiety for me- and I am happy for now with a mammo and an MRI each year. That said, my onc said if I wanted tumor markers or a scan, she would do it. each time I get ready to see her, I think "I should ask for this", but I haven't yet---- but I agree, if we think we need it, we should be able to get it.....

Come to Florida. We scan the heck out of you. If you come in the ER you are gonna get something. I see senseless scans all of the time. I personally have had 1 bone scan, 2 petscans, mri brain, mri cervical, pelvic u/s, CT chest/abd/pelvis, 2 cts of the chest by itself, vq lung scan. Ct head. Our doctors are so afraid of lawsuit they have to rule out anything serious before they sign off on you. Maybe it has to do with malpractice laws by state. Now I have had issues this past year and that is why they did all these tests. I think you should ask for what you want. They should at least be running blood work which will show if anything is going on in your body. Healing hugs to you.

Tectonic, I am dubious about that thing about it not mattering when you find mets too. It may not make a difference to survival statistically, but it seems to me that it could make a fairly big difference to QOL in between, and maybe even to survival. It just seems common sense that it would be easier to beat down a small met somewhere than to treat extensive ones, but what do I know.

My personal experience with our medical mile is you have to really "squeal-like-a-pig" and they may decide to listen. Since I am going to PRMA in November, I will take some of those questions with me. I don't know if the higher ups are just saying no now.

I'm in NC and I get bloodwork regularly and scan yearly or with new symptoms. This is my 4th onc. some by my choice, some by the Army's choice. I think it's just a matter of trying and trying until you find one that works. The 3rd one didn't do anything and I picked her because she went to some big ivy league medical school, so I thought she must be "the one", she wasn't even close. I have a wonderful primary dr now too and I kept switching until I got it right. Good luck, keep up the search, good dr's are few and far between.

Fredntan

the MRI is annual-both breasts. I had ilc so I made the argument that it was not found on my mammogram 6 months before I was dx- so it was reasonable to have an annual mri. She agreed so I have been having them annually. I had no node involvement, no LVI and an intermediate onc score., so I did not have any scans and would rather not have any. I am not sure what happens after the 5 year mark. But it seems reasonable to me to have a mammogram and an MRI every year at the minimum. I know mammograms are helpful, but I have no faith in them for me.

I imagine at some point the insurance company will stop covering them, but my onc has said I can have an annual MRI--I am thinking of maybe going to every two years.... hard to know what the right things to do are.

Not sure if this is of any interest, but when I went to my yearly check-up at MD Anderson in Texas ( a couple weeks ago) they refused to do any blood work, tumor markers, scans and or anything else other than a physical ( feeling scares, under arms and neck). I also only saw a Nurse Practitioner. They said this was standard care. My first check-up ( at one year) after treatment they did do blood work, but said that was the only time they would. I do have blood work and tumor markers done with my MO in my home town (every 6 months). Not sure the trip to MD Anderson is worth it anymore...unless I have a recurrence! Admire your fight, fredntan in trying to get what you want.

Fredtan, I don't think it started with insurance companies. The no scans without symptoms thing is part of the National Cancer Institute's guidelines (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032676/#CDR0000062787_rl_1_45 see the "Follow Up" section) and seems to be backed in part by some studies dating back to the 1990's and not just in the US (see the links in the footnotes 45-47).

The part that actually surprises me a lot is that some of the studies did look at quality of life and say the regular scans didn't improve QOL or outcomes--I didn't really expect that.

I guess that's why the "big guns" like MD Anderson and Dana Farber don't do it.

But, like everything else, even with broad recommendations like that, each of us are individuals and who the heck wants to find out there was something like mets that might have been taken back to NED except that they were too extensive by the time they were discovered? It might not actually change outcomes or QOL, but it would still really stink and you'd still always wonder!