Regular Scans for Watchful Maintenance - Patient Advocacy NEEDED!

Mercorby

Hello,

I was recently made aware of the fact that many uterine cancer patients are not getting regular scans because "the research shows that they don't extend long-term survival." Those are generalized quotes that I heard from a couple of doctors. However, those same doctors tell me that liquid biopsies are not really up and running for uterine cancer patients. So other than physical exams, and for some patients the CA125, as well as patient-reported symptoms, there is no other monitoring - all grades and stages. I find this very alarming.

I have had 3 recurrences, all caught on PET/SCANS that I receive every 6 months. Nothing shows up in the physical exams. In fact, the gyn onc didn't check the stomach muscle where the tumor showed up until it was seen on the scans. Then he and I felt it! In my case, the CA 125 doesn't show anything. If starting at the 5-year mark, my scans had stopped to once every year, my aggressive cancer would have spread or enlarged and changed my treatment options. As it is, caught early, very treatable.

I just had a long discussion with my gyn onc about not using regular scans and she reported that it is a big problem and topic of discussion with her patients and the patients of her colleagues. Especially, since they have no other object means like liquid biopsies, to do this. We are individual people, with cancers that have different mutations. If our mutations are to drive our precision treatments, how is it possible to know when we actually need treatments without seeing if the cancer has returned?

Much more research and advocacy is needed here. We need to support each other in this!

Corby

pik3r1

Hi Mercorby, I'm just starting my post-treatment journey. I was surprised to see what you mention when I was reading the official NCCN guidelines for treatment and surveillance. The NCCN guidelines for surveillance state to perform "Imaging as indicated based on symptoms or examination findings suspicious for recurrence". And yes, after 5 years, only once per year.

Pretty scary for me since in most cases of recurrence that I hear about, folks say that they found it from imaging. (Although I'm not sure if there's any bias in the group I've heard from.) Fortunately my oncologist already wanted me to keep doing imaging with my upcoming examinations for now. Maybe my case is different from the usual, though, because my cancer has such a high risk of recurrence.

Forherself

The squeaky wheel gets the oil. I always assumed that if a patient wanted scans regularly they got them. I have not had scans regularly. My Family doctor ordered an MRI about 3 years ago because I had pain in my abdomen which turned out to be torn medial gluteus tendons causing hip pain. That is all the imaging I have had for recurrence. And I am fine with that. Scans have a lot of radiation so I felt the risk of causing disease outweighed my need for scans. MRI's have. no radiation. That is a good question. How did women here discover their recurrence?

oldbeauty

Corby, I agree. I have had numerous treatments for my Stage Ic Grade 2 adenocarcinoma over 18 years. After chemo in 2017, I was fortunate to have a wonderful clinician who ran the cancer wellness and survivorship program tell me that she considered "peace of mind" to be "medically necessary" ("magic" insurance code). That assured me I'd always have a resource for an imaging scrip if I needed it. In fact, at the appointment when she said that, I said I wanted a chest, abdomen, pelvis CT (and by this time I was on the outs with my first Gyne-onc) because I had been told it was possible recurrences would occur more frequently. That was in September 2018 and it revealed the small lung nodules that we then followed for 2 years until one got large enough to find, resect and biopsy. SBRT followed to treat the others. Never in that period of time did I have any physical symptoms (and I have none now, going on 2.5- to 3-years since my last treaments). My current Gyne-onc calls my cancer "indolent," yet we remain vigilant. I am now on a once per year imaging schedule, but of course we'd increase frequency if something new appeared.

Best wishes. Oldbeauty

Mercorby

https://csn.cancer.org/discussion/comment/1709056#Comment_1709056

The issue here is that patients are asking for regular scans and their doctors won't order them. These are people with high risk for recurrent uterine cancers. I was startled to hear this from so many women. When I went to my doctor, she said it was true. Women are begging for scans, and there is no other alternative like liquid biopsies to replace scans. Women need the ability to make their own choices in this process. I know one woman who actually gets most of her treatment at one hospital but also goes out of her way to go to a big cancer hospital because they will give the scans to monitor her high-risk cancer. There is some disconnect here.

NoTimeForCancer

I have never had a scan after all my treatment, but feel if I wanted it that I could get it if there was a reason. Yes, you have to be your own advocate but it is not neccessarily a requirement. "It depends" is often applicable.

My two cents

PeachRibbonWarrior

I have had so many recurrences that I have literally lost count! I have been fighting this battle for 10 years now. Had I not insisted on continuing to have scans every 3-4 months when it was suggested we go to once a year, I would very likely not be here. Unfortunately, I have found our cancer to be one of the least funded or researched cancers in relation to how many women are diagnosed each year.

If there is going to be a change, it is going to have to come from us. We're going to need to make our voice louder than the others so we can be heard, get more funding, and more dynamic research.

MoeKay

https://csn.cancer.org/discussion/comment/1709058#Comment_1709058

https://csn.cancer.org/discussion/327063/regular-scans-for-watchful-maintenance-patient-advocacy-needed

Corby,

In case you haven't already seen it, here's a link to an October 2022 Editorial by two gynecologic oncologists from Johns Hopkins discussing the results of the recent (July 2022) TOTEM study concerning surveillance, including scans, of patients after treatment for endometrial cancer: https://ascopubs.org/doi/full/10.1200/JCO.22.01551

Those patients you mention who are at high risk of recurrence will find information in this Editorial concerning the TOTEM study limitations that I suspect will be useful in discussing the issue of scans with their gyn-oncs. As only one example, the Editorial states that, "patients with advanced-stage disease and higher-risk histologies were severely under-represented in the study, making it difficult to conclude the optimal surveillance strategy for those patients."

MoeKay

Mercorby

https://csn.cancer.org/discussion/comment/1709201#Comment_1709201

Hi MoeKay,

Thank you for sharing this article. I hadn't seen it. The concept of underrepresentation in various demographics and risk levels in gyn cancers seems to be a common occurrence - very disturbing. I'm not seeing any signs of new research to correct for this issue - more concerning because many women are getting diagnosed in later stages and the incidence of endometrial/uterine cancer is rising as are the deaths.

I will share this article. Thanks again.

Corby