A Question From Irishsurvivor About Mixed Tumors, Breast Cancer

Hey there my mom is a breast cancer survivor and they did regular PET scans throughout her treatment but every doctor is different. I can look up statistics for you, if you need anything please let me know, feel free to view my journey if you want..I talk about my mom's journey.

I believe pet scans should be done regardless... i would suggest finding a different doctor.

I've had 2 PETS, one I had to fight with a resident to get it and then my Dr approved no issues, while the 1st was approved contingent that I wouldn't get scared if anything came back "lit up". Id say nothing that gives you peace of mind you are entitled to, it's not hurting anyone for you to get a scan. If they continue to say no I agree, a new Dr is in order.

The first pet I had showed a pre cancerous tumor in my colon, without it, It never would have been found, I had lymph nodes in my neck that they new about, but they gave me the pet to see where else in my body it was. My opinion is if I am worried, I'm going to have one.

I think there has to be a balance between the risks and benefits of the scans. A PET is nearly always accompanied by a CT, which means full body irradiation with X-rays. The PET also involves the injection of a radioactive compound. MRIs involve the injection of the MRI contrast agents. And so on.

The research is suggesting exactly what IBCWORD has written, that people don't live longer when they have regular scans versus scans when symptoms appear.

I would prefer to minimize my exposure to radiation as exposure to radiation is a known risk factor for cancer. If I had a worrisome symptom, however, I would push hard for appropriate tests to be sure that the symptom was well understood and appropriate action taken to address it, whether it turned out to be cancer or another problem.

Above all else, you should be able to get a full explanation from your oncologist - why they are suggesting that patients wait until symptoms appear before undergoing the scans. If your oncologist is not taking the time to explain that clearly, then I think a new oncologist might be called for.

I don't know if that helps, but there are my two cents....

Best wishes,
Lee

My oncologist wants me to get PET/CT scans once a year and a different type of scan between PET/CT scans. He said that I would not have any symptoms if my cancer reoccurs somewhere else. I had ovarian cancer and there is no good preventative tests for it.

I'm sure that the oncologists' recommendations depend greatly upon the details of the cancer etc....

I was a very ignorant yet obedient cancer patient. Unlike my normal self who is very inquisitive and needs semblance and control, I didn't do research online and listened to advice from experienced friends, but really depended on doctors...and we visited and talked to every doctor friend we have. I found wonderful doctors (fortunately, I live near Philadelphia and have access to the outstanding medical facilities) and had a very successful journey, thank goodness.

Prior surgery and following chemo, I had several CT scans, but they waited until after my chemo to do a PET. I have chemo brain so I don't remember if I asked exactly why I wasn't getting a PET during treatment.

I am wondering whether it had to due with the type of cancer. I had colon cancer which did not break completely through the wall of the colon, but a few lymph nodes were involved so I had to have chemo. From the very start, all our doctors were optimistic that this was curable. Perhaps they didn't want to expose me to the PET scan since it wasn't going to make a difference...I had to have chemo anyway. The CT scans indicated that the cancer hadn't metastasized the neighboring organs so maybe that goes along with your doctor's diagnosis.

"No,they wait for symptoms of metastatic cancer first." My question would be who are "they"? PET/CT are pretty expensive and most insurance companies will only cover them if they are medically necessary.

I wanted to carefully weigh in on this matter, as it EXTREMELY controversial.

The current NCCN Guidelines (considered by most to be THE evidence-based practice guidelines) strongly discourage routine use of PET-CT in this setting. This is the "standard-of-care." Doctors may choose to deviate from this standard for a variety of reasons, including preserving patient satisfaction, retaining their patients (out of fear they will leave to seek the test elsewhere), or in the worst scenario, for profit.

Many for-profit oncologists own their PET machines or share in the profits from PET scanning. They know that patients want these sophisticated tests, and they also know the guidelines discourage their use. However, when a patient wants a test and he insurance company will reimburse for the study, the doctor really has no "dis-incentive" to order it. The patient gets their scan and the doctor makes money. How do they get around the insurance companies ? Usually by suggesting the patient is "symptomatic" in the medical chart to get the study covered. Technically, this is fraud, and the physician is risking litigation if the symptoms supporting the order were fabricated. It's a slippery slope.

The reasons the guidelines do not suggest routine use of PET go beyond financial considerations alone, but admittedly money is part of the equation. If PET scans were cheap and involved no radiation exposure risk, everyone would get them routinely. The tougher part of the argument has to do with the fact that early detection of metastatic breast cancer technically does not prolong survival - only early detection of early-stage breast cancer has data to back that claim. Until studies can prove that lives are saved by finding stage IV (by definition, incurable) breast cancer earlier, I doubt these guidelines will be modified. And since insurers base coverage for services on evidence-based guidelines, most PET scanning would be declined for reimbursement in this setting.

In understand patients' frustration, and the sense that their doctors are not providing what they need. The good docs - the ones that follow the expert guidelines and don't risk fraudulent testing (which could result in criminal charges and jail time in some instances...try cheating Medicare and see what happens !) are the ones patients get so mad at. The ones ordering the PET scans are either making money (and dishonestly, I might add) or are ignorant of the current guidelines and are risking fraud claims.

Hope that doesn't muddy the water to much.

JS