How do you test for recurrence after double mastectomies?

I'm in the same boat. I have prepectoral reconstruction with implants so nothing that occurs beneath them would be felt. My BS said that an MRI would be done at three years to assess for implant integrity and then every two years after that. Besides that - it's just an exam every six months for now.

I've had a lump under the areola on the cancer side for about a year. I've had mammograms and US exams for that with no definitive diagnosis. When I finally complained more, they recommended an MRI and either biopsy or removal. The insurance denied the MRI initially and my BS had to do a peer-to-peer review on the phone to get it covered. Again - no concerning anything on that.

I will most likely have the area removed surgically since no one wants to do a biopsy there with an implant in place and it can be felt. I don't really think that it's cancer - especially with all the normal imaging - but don't like it just the same.

Perhaps you could claim that the implant feels funny then maybe they'd let you do the MRI. I'm in the same boat. I just had my implant exchange and was wondering how to monitor things. I think with insurance companies you have to sometimes push back a bit and not accept their first response.

I asked my nurse navigator this question and this is her response: “Mastectomies do not get 100% of the breast cells so if there is any recurrence, it will be in the skin thus VERY PALPABLE so regular breast exams are important.“

My MO does not order tumor markers for me in the absence of other signs. She will order scans if I report pain.

I am in the same situation. I have a new MO and asked if I could have a PET Scan or MRI annully. She said no, there is no protocol for doing that. So I asked how can WE monitor my body for recurrence??? I said do I have to wait until I have pain in my bones where the cancer has metastasized before I can have any diagnostic tests or I have a dry hacking cough and difficulty breathing because of Mets to the lungs. She said yes that’s the way it works.

It sucks! We go thru hell and back to be cancer free but there is no protocol to help us going forward to catch any recurrence in the early stages

dtad, I agree. It is rediculous. If any of you have the link to the current guidelines please post it. (Does anyone know if guidelines change based on stage?) I asked another MO at the hospital that I work..not my MO..and was told tumor markers are at the bottom of the totem pole when it comes to detecting recurrence. That they can be elevated and mean nothing or normal and cancer still be present. I think each MO may bend the rules here and there as far as stepping outside the guidelines for testing. I will still pester mine at each visit. I guess this takes us back to being very aware of how we are feeling and using the 2 week rule that someone mentioned. If the symptoms last longer than that get it checked out. It's very unsettling for sure

My mo loves MRI scans and in the past pushed them. When I had a sprained back. Mri look for mets, none thank God. My father passes away from brain aneurysm, mo get an mri. But most recently he has backed off I have a feeling it was the insurance company. I had an infection terrible tooth pain I had to pay for my MRI over $600 dental insurance didn't cover it. Well, dental pet scan showed an extensive infection. I was sent to my GP they wanted a sinus MRI and it was initially denied, so I went to see ENT he could tell it wasn't sinus related by exam. Eventually the infection cleared with antibotics. This easily could of went either way. I know many of you guys have been rushed to the ER. I kept telling my doctors I don't want to end up in the ER. My dentist called me everyday for over a week to ask me about my fever and how I was doing. He is a good dentist, so glad I found him because previous ones were so quick to do unnecesary crowns and work. He doesn't like to replace crowns unless there is evidence of failure. There are risks of introducing bacteria when doing the work.

hi all I’m feeling so frustrated by these poor insurance protocols and guidelines, prevention is key and insurance is not focused on that. They are reactive we need to be proactive! Can we start a petition, I’m not sure how to go about making these changes but this is no way to live. I’m sure somebody on here knows how we could go about changing these puss poor insurance guidelines??? I’m all about making this happen, please respond if you know how we can get this ball rolling

hi muska I’m not sure what these tumor markers actually do, I’ve had several friends with reccurene leading to Mets all while having quarterly exams and blood work, I think pt and ct are pretty Invasive but have heard a lot of good about new mri and technology but drs have to follow insurance protocols. My NP even said with brain Mets you won’t know until it’s pretty much to late to do anything insurance won’t cover testing even though statistics show once you have one type of cancer you are more prone to get another type of cancer in her lifetime. in my experience insurance is a reactive industry and if I didn’t find my own lump at the age of 36 (because I was not eligible for criteria meeting age requirement to get a mammogram through insurance) I would probably not be here. I’m hoping we can be heard and make changes to improve aftercare Monitoring and overall prevention🙏🙏♥️

Speaking of BC prevention I don't think it is possible. Let's not mislead ourselves into thinking one can 'prevent' mets by following a certain testing protocol. My bet is on new treatments that may prolong life with mets while not making it too miserable.

I had a prophylactic bilateral mastectomy in October 2003 due to family history of 8 women with breast cancer & a diagnosis of atypical ductal hyperplasia.

This past Thursday, I was scheduled for my 3rd MRI to check for implant rupture. My implants have been replaced once due to rupture.

I was advised at the imaging center that I should still be screened via MRI * with contrast * to screen for breast cancer.

I called breast surgeon's office and new order was sent for MRI * with contrast.* i e. Screening for remaining breast tissue as well as chcking integrity of implants.

I wanted to share this information in case anyone wanted to have a conversation with her (and his) physician.