Do you get routine scans for breast cancer followup?

Posted by cathyhand @cathyhand, Mar 27 2:08pm

Does anyone have routine scans or test. I do not. I have had several friends with other types of cancer and they have scans every 6 months yet BC patients have to wait for symptoms which is usually later than one would hope for. Does this seem fair???
Stage II B, bilateral estrogen positive

Liked by Dee

@cathyhand
I have PET scans every 6 months. I would not be having those for my infiltrating ductal cancer, but the second type of cancer I had (in another tumor) was neuroendocrine which is highly aggressive and can pop up any time, anywhere.

Liked by Dee

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@cathyhand
Hi, Cathy. I was diagnosed with Stage I, HER2+++ in 2017. I had bi-annual diagnostic mammograms in 2018 and annual diagnostic mammograms since. I'm currently due for one at the end of May, but with the Covid-19 business, my hospital is not taking appointments for it until mid-April.

Liked by Dee

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Cathyhand I have worried about this too. My cancer center is nationally recognized so I trust them to a point. I was told no tests or scans without specific symptoms. I asked my PC doctor this question; how do they know if something is not right if they don’t check for it. I’m specifically concerned about possible lung or heart damage from left breast radiation. She did an EKG and a chest X-ray.
Results show that I have a small amount of fluid in my left lung and a small “blip” on the EKG. My insurance denied a chest ct that the PC ordered. I cancelled the cardiologist appointment over the covivid-19 concerns. At this point I’m not sure if I will be able to make my next oncologist appointment in late May.

Liked by Dee

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@baker1

Cathyhand I have worried about this too. My cancer center is nationally recognized so I trust them to a point. I was told no tests or scans without specific symptoms. I asked my PC doctor this question; how do they know if something is not right if they don’t check for it. I’m specifically concerned about possible lung or heart damage from left breast radiation. She did an EKG and a chest X-ray.
Results show that I have a small amount of fluid in my left lung and a small “blip” on the EKG. My insurance denied a chest ct that the PC ordered. I cancelled the cardiologist appointment over the covivid-19 concerns. At this point I’m not sure if I will be able to make my next oncologist appointment in late May.

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@baker1 By any chance, does your facility have video visits or doctor e-mail? If they do, you can always ask the cardiologist questions that way. Of note also, sometimes you can push further with insurance company for them to take a second look at your request. Usually people don't follow through when first denied – it pays to try further.

Liked by Dee

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I fought to get a MRI of breast one year after lumpectomy, I found my tumor 5 months after a routine mammogram. Due to dense breast, the mammogram missed it. So I no longer trust mammograms. Insurance company originally denied, was escalated and they approved. In addition, I had an unrelated calcified aneurysm that neurologist ordered a scan to recheck and it showed a spot on lung. Turns out that it was radiation damage. My oncologist had rechecked months later and was healing. But without aneurysm scan, would never know it was there. I have EKG ordered for next month to recheck heart, has not been checked since prior to treatment two years ago. It does make me worry about what else might be happening in body that I will not know about till symptoms. The longer since my original diagnosis, the less I worry.

Everyone's situation for monitoring with be different, I had stage II B breast cancer, had lumpectomy followed by chemo, radiation and then AIs. No previous lung or heart problems. In early 60s, so on private insurance, not medicare.

Be honest with your doctor about your concerns and why you think additional test may be needed. Dealing with insurance company is harder, and you will need your drs support to get approved. If you feel your dr is not giving you the treatment or support you need, may be time to get a 2nd opinion. .

Laurie

Liked by Dee, trixie1313

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@trixie1313

@baker1 By any chance, does your facility have video visits or doctor e-mail? If they do, you can always ask the cardiologist questions that way. Of note also, sometimes you can push further with insurance company for them to take a second look at your request. Usually people don't follow through when first denied – it pays to try further.

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I don’t know about the cardiologist, it was going to be my first ever visit. I also don’t think that I can afford the cardiologist or the CT scan after seeing my EOB for the tests that prompted these appointments. I just paid off my hospital bill from treatments in 2018!
So now I wait for Covid-19 to fade-away and then reassess.

Liked by Dee, trixie1313

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@cathyhand I wondered if you had some discussion on your follow up. Were you able to get a review scheduled or an explanation for the approach? I have yearly mammograms to check-ins and like others with dense breast tissue, sometimes an MRI or ultrasound is needed for a double-check (scar tissue and what not). Let me tell you that waiting for another scan when they find something is un-nerving. 🙁

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@mbear

@cathyhand I wondered if you had some discussion on your follow up. Were you able to get a review scheduled or an explanation for the approach? I have yearly mammograms to check-ins and like others with dense breast tissue, sometimes an MRI or ultrasound is needed for a double-check (scar tissue and what not). Let me tell you that waiting for another scan when they find something is un-nerving. 🙁

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@mbear @cathyhand @roch
Ladies: I recently read an article on Mayo which may be of interest to you. Molecular breast imaging is a test that uses a radioactive tracer and special camera to find breast cancer in women with dense breast tissue and to investigate breast abnormalities. Because it's new, it is not widely available, yet, but is something about which you may wish to inquire.
https://www.mayoclinic.org/tests-procedures/molecular-breast-imaging/about/pac-20394710

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I have had breast cancer twice… 2007 in 2018. The first time I saw my oncologist every three months for four years and then every four months for the last year. This time there is a little confusion because I have gone through two oncologist already and I’m on my third. I have pretty much been on the three month schedule even with the confusion. I have blood work done every time I see them and I have had several tests… CT scan, bone scan, mamo and MRI. I have had DCIS and IDC. I have no trouble getting these test done. I guess I’m lucky after reading the other entries. I think at the very least you should be getting bloodwork and a memo/ tomo once a year. That would be just your normal yearly check up anyways if you had not had cancer. I think what the doctors in my area go by is to see the patient every three months for the first year and then decreasing the amount so maybe going to every four months for a year and then maybe every six months and then a yearly check up. Good luck. There always seems something to worry about.

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@mbear

@cathyhand I wondered if you had some discussion on your follow up. Were you able to get a review scheduled or an explanation for the approach? I have yearly mammograms to check-ins and like others with dense breast tissue, sometimes an MRI or ultrasound is needed for a double-check (scar tissue and what not). Let me tell you that waiting for another scan when they find something is un-nerving. 🙁

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I had a bi-lateral mastectomy so mammogram is not an option for me. I do have blood work every six months. I have had a couple bone scans but just because I was having issues and some reasons for concern. No other test.

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@mbear

@cathyhand I wondered if you had some discussion on your follow up. Were you able to get a review scheduled or an explanation for the approach? I have yearly mammograms to check-ins and like others with dense breast tissue, sometimes an MRI or ultrasound is needed for a double-check (scar tissue and what not). Let me tell you that waiting for another scan when they find something is un-nerving. 🙁

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I will not have any scans unless symptoms. I do have blood work every 6 months. It just bothers me that we cannot have regulars bone scans or CT scans at least once a year. Doc said that they can be harmful over time but undetected cancer can kill you, seems that Trump's other. My Ortho doc said cancer shows up in bone scan 6 months before symptoms and that oncologist just don't want to be bothered running down every little problem that might show up in a scan. To me time is life. Many other types of cancers have regular scans to check for metastis, guess I don't understand why not with BC since it kills thousands yearly.

Liked by elizm

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I had early stage two breast cancer with minimal spread to lymph nodes two years ago. I have complete trust in my oncologist and follow her recommendations. She is very open to discuss anything I need to understand. I see her every 6 months for follow up that includes mammogram. I love her common sense approach and that she is concerned about my wellness in general not just breast cancer. I talked to her about my fears of recurrence at my last visit a few months ago. She told me that too many women are so concerned about recurrence of breast cancer, that other health issues can sneak up on them unnoticed. Her advise was to enjoy life, move forward, and quit worrying about recurrence. If breast cancer does come back we’ll address it together at that time. I loved that she said, we’ll address it ‘together’. I got tears in my eyes knowing that she is on my side, and I’m not alone in this. Nobody wants cancer to return, but if it does, I know everything possible is being done and will continue to be done to help me get through it the second time. Nobody has a ‘magic wand’ or miracle treatment to prevent or cure cancer. We must move forward with treatment, get through it, and put cancer behind us. I’ve learned that’s really hard to do, but the alternative of driving myself crazy worrying about recurrence is a ‘cancer’ in itself. Best of luck to everyone on this site, you all have helped me to feel like I’m not alone on this journey.

Liked by trixie1313, elizm

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Totally agree and I try to move on and live my life. I have total faith in God and my doctor but having just recently had friends with other cancer and wondered why they have screenings regularly so as to find any recurrence early and bc patients have to just wait on symptoms.

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