Why don’t we all get full body scans? Why do they try to ration scans?

jessicanell @jessicanell

I understand your frustration about MRIs. When I first found a breast lump 7 months after normal mammogram, my provider ordered a MRI. Insurance refused without confirmed diagnose. So had biopsy, was positive, at this point insurance agreed they would pay for MRI, which found another spot, another biopsy, then a MRI biopsy. Eventfully classified as Stage 2 breast cancer. If would of done MRI first, it would of streamed line process.

I have had MRIs of abdominal area for another reason, which showed misc items, not normal, but of no concern per provider. Rechecked with another MRI at later date, original concern went away, but another showed up. Again, provider said no concern.

A provider told me the more scans you do, more items find, but most time they are not a concern. I guess you just have to hope you're not the exception.

Unfortunately, MRI are expensive, but so is treating cancer. Also, the demand for MRIs have increased and often have to wait months to get an MRI appt. If start doing more scans as "just in case" justification, the wait time will be even longer.

Like most things in medical system today, it is benefit vs risk vs availability vs cost vs insurance companies.

I think it also varies depending on clinic you are seen at. I have friends that are given MRIs if ask, while others have providers, like yours and mine that follow a different protocol.

I am 5 years out from original diagnosis / treatment. I now alternate mammograms and MRIs every 6 months. My oncologist agreed to this plan due to dense breast and mammogram missing the original lump.

Laurie

I’m right with ya! Early detection is all we have! Mammo finally picked up my invasive lobular as very dense breasts and MRI showed it bigger at 1.8cm. My margins weren’t great so did last 3 as boosts radiation. No scans recommended at Dana Farber, Boston for entire year so my mammo is regular oct month but why would we be on same schedule as women who have not been diagnosed with cancer? I’m sure I will have to pay out pocket for an MRI! Why is this case and I’m tired of hearing docs fear anxiety over false positives! I know no women who would put that above early detection! Let’s hang in and advocate for ins coverage of breast MRIs xo

I just had a conversation with a doctor (Urologic Oncologist) about this however it was about prostate cancer. I’m female so this wasn’t about me - it was about my brother and his experience. When my brother’s urologist ordered an MRI the hospital called my brother to tell him that the pre-authorization from Blue Cross/Blue Shield was denied. He had to get a CT scan first. The oncologist told me that this was not necessarily a cost issue but rather CT scans are better at picking up changes in lymph nodes. After the CT which did show some areas of concern, the MRI was ordered. My brother did have prostate cancer and had surgery followed by radiation therapy and medication. He’s being followed by a urologic oncologist at Stanford so his sister (me) can breathe a sigh of relief for him.

I realize that this is going to be a different situation for our breasts. I too have dense breasts and have had three biopsies in the past (all negative). I too worry about breast cancer as I’m a cancer survivor of endometrial cancer so now I’m at more risk of breast cancer. What else do we have to do to advocate for ourselves? And like everyone else, I’m so tired of private insurance companies make decisions for our doctors.

I’m a bit cynical but I don’t believe the CT first for your brother was for any reason other than it’s cheaper. I’m glad he is getting amazing care at Stanford.

I completely agree with you! I think MRI and mammo should be standard of care with dense breast tissue and a breast cancer diagnosis.

Hmm... I was diagnosed with invasive ductal carcinoma, stage 1A, anatomic (stage 1B prognostic after surgery). I chose to have a mastectomy rather than a lumpectomy. Thus, my surgeon felt that an MRI was not necessary as the whole breast was going to be gone anyway. Fine with me. After the surgery, I was surprised and initially angry that there was to be no more treatment or assessment, beyond survivorship monitoring. I was told I was cancer-free, all in 2 months from diagnosis to post-surgery! Having triple-negative cancer had convinced me that I had an aggressive cancer so I wanted a PET scan or some full body scan to check for the possibility of metastases, especially because I had issues in other parts of my body prior to diagnosis. I was told that no insurance company would pay for this because it wasn't "medically necessary".

After suffering from my own emotions for a while, I recognized that perhaps they are right. (Well, probably they are right because they know more than I do.) If my initial cancer had spread, it would likely have spread through the lymphatic system or the blood stream. All 4 lymph nodes were clean as were margins after the mastectomy. My tumor was tiny (5 mm). The likelihood of spread outside the breast was quite small, given that I have virtually no risk factors. Though that is no guarantee, the cost and the delays for people who truly need full body scans is not justifiable when there is an absence of significant risk factors. Doctors treating me for my other complaints can always scan the areas in question if they feel it is justified.

Once thing that convinced me was when I looked up the cost of a full body scan if I wanted to pay for it myself. I realized that I didn't want to pay THAT much when there was so little chance they would find something. Doctors can overtreat as well as undertreat; they can order tests excessively or not enough. Basically it gets down to judgment and the risk of a mistake will never be zero. But if they over-test or overtreat, our medical costs will end up skyrocketing and, here in the US, they are already high enough that many cannot afford them. There also can be other problems brought on by excessive treatment and my doctors explained to me how they were trying to find the right level for me.

I think it took me some time to see this. A cancer diagnosis naturally makes us feel at risk and like we have no control over our lives. We may try to regain some "control" by having more tests or treatments but that can backfire. I'm sorry for any of you who feel your recurrences could have been prevented. Maybe in your case there should have been more. Maybe in time, I will be joining you in feeling that way. But for now, I'm accepting that my doctors have done their best to find the path that is best for me. And, in the end, whether they were right or wrong, eventually I'm still going to die of something.

I am with you in a way, as I keep going in and out of this way of thinking... They know best, they have the most experience with this, they are weighing many factors — most of which I am definitely not an expert in.

I asked during my treatment if one could have mets to other organs without going through the lymph nodes and the answer I got, reluctantly, is yes. So that's disconcerting.

I agree it is about control — this has been such an out of control experience and so this is what I do as a Type A person. And there is the cost factor, and people who need it more than I do.

I am highly skeptical of what I see as our mostly profits over people, patriarchal health care system. Given the rate at which this cancer impacts and sometimes kills women, I think we deserve aggressive treatment, and full pictures of our disease. I spoke with a woman who found she had not one as they had biopsied, but 4 tumors upon her post biopsy/diagnosis breast surgery. I asked if she had an MRI before her surgery. She's a nurse. She said she did not qualify for one through her insurance. To me that's infuriating.

How can I as a breast cancer survivor with dense breast tissue go back to the same routine, yearly mammogram schedule when that likely missed my cancer to begin with?

I don't know - this is what's on my mind right now. It's clearly much more typical to trust in the care I am receiving and quietly go on about my life. But for some reason I can't.

I’ve said this for years, instead of doing a multitude of tests do ONE. Especially if you’ve been diagnosed with cancer. I’ve had a bilateral mastectomy and the mental things you go through are it seems never ending. Our drs are governed by insurance companies. It’s scary that they determine who’s worth saving and who’s not

I certainly understand. But I also came to realize that I probably wouldn't accept chemo if they offered it to me right now. I have heard that the chemo used on triple negative is often particularly brutal because they don't have the targeted options that they have for other types. It kills cancer cells AND health cells, can cause heart damage, etc. I'm 68 years old. Do I want to make myself very sick right now in an effort to try to prevent future illness that may never occur? As I've started resuming my "normal" life, I realize that I don't. If there was some known cancer left in my body, perhaps. But I am old enough that my goal is not just to stay alive longer. I want to take whatever is left of my lifespan and try to live it well.

This is just me. I know it may be very different for women of different ages and backgrounds. Those who are younger and raising children obviously have different priorities. I don't like a lot about our healthcare system in the US but I still have much to be grateful for that I have it.

I’m shocked you aren’t on the 6 month protocol. I had ADH which is not cancer but indicative of an increased risk and I’m on the 6 month protocol. Which is essentially a mammogram and mri yearly.