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

ChristinaWH

I had stage 1 adenocarcinoma in 2019, had a hysterectomy and was not properly staged and kept ovaries because D&C prior to surgery was read incorrectly. I had one PET after diagnosis at Siteman in St. Louis. Continually complained of cramping and pain and the oncologist just kept doing ultrasounds of my ovaries to see if they were the issue.

I was diagnosed with lymphoma in February of 2023 and the only reason the endometrial cancer recurrence was found is because they thought it was a node in my abdomen that wasn't responding to treatment. I asked specifically if it could be endometrial cancer and they practically laughed at me. I got a second opinion and biopsy at Mayo. They immediately suspected the recurrence. By this time I had many PET scans.

I had surgery at Mayo to remove the "node" which was actually a cancerous nodule on my node.in June of 2023 when they also found 4 additional spots that were not detected on the PET or MRI. There was one nodule that showed up on the PET that they could not locate in surgery. I am now in the middle of 6 rounds of carboplatin and taxol. I am appalled at how little they know about endometrial cancer and how terrible the follow up is. Clearly a PET does not detect it unless it is big enough to detect. In the meantime it's inside spreading around. I hate to be the one to say that if we were men they could detect it in a urine sample.

My lymphoma is in remission after chemo and could have killed me in a year with no treatment. This endometrial cancer doesn't have a clear path and no one can tell me what my outlook is going forward other than "it likes to come back". I agree that we need to do something to get proper funding! This is the only cancer in which the death rate is increasing!!

Mercorby

Hi All,

Here is a link to the International Gynecologic Cancer Society page. There is a patient advocacy section.

https://igcs.org/news-advocacy-summit/

Here is the YouTube link to the Summit on Sept. 25, 2023. My doctor was one of the speakers. https://youtu.be/EMhfg8DDJ0s?feature=shared

Video about advocacy. https://youtu.be/PQxrtxICf5E?feature=shared

Corby

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.

Corbt

BluebirdOne

Thanks MoeKay,

The idea that a grade 3, stage 3 or 4 serous (or even endometrioid, and sarcomas) patient should not be heavily surveilled is nonsense, which is probably why they were so under represented in this study. By definition, a stage 3 and 4, means that the cancer has metastasized already, stage 3 cancer remains in the pelvis, stage 4 means it has metastasized out side of the pelvis. Scans are needed to see if the cancer has spread after surgery, chemo, radiation in these patients in the months and years ahead, and many patients have recurrences, sometimes multiple, where they need more surgery, etc. Excessive over treatment is not welcomed by anyone, not the doctors, patients or the insurance industry, but under treatment costs lives.

We really are at the mercy of our doctors and clinicians to properly dx us and provide treatment. Since I was dx with cancer, I do not let them blow me off, underplay my concerns, to the best of my ability. I know that we have lost quite a few ladies due to undertreatement, i.e., no treatment after surgery, in the mistaken belief that they were "cured". My own gyne professed to my husband and myself that I had no cancer, no further treatment necessary, because he couldn't "see" any. The actual pathology that he did not wait to see revealed a grade 3 serous tumor. We are are own best advocates, because it is our lives at stake, not the doctors.

xxoo

Denise

Fridays Child

My recurrence was found when I went to ortho for hip pain. Since starting chemo and radiation five and a half years ago, I had CT scans four times a year, reducing to two and now once a year. Because I had what was called a late recurrence (more than five years after initial diagnosis and treatment), the medical oncologist says he would prefer to scan for "a couple more years," but I'm going to discuss with him whether it would be advisable to continue, or to do MRIs. The gyn onc calls it indolent but seems to expect it to come back at some point.

lindaw55

My doctor said he doesn't do regular scans because he thinks I have been exposed to enough radiation already. At my first 3 month checkup I will try to remember to ask him about this. I was wondering how they would find out if it had come back without doing scans.

BENTLEYJULIA

I am so blessed just past 10 yr mark after total hysterectomy they also found a drop down tumor in my vagina

Very aggressive form of cancer I was told I had a 20 o/o chance of recovery but here I am

Fight like crazy and reach out to others for support. God bless you all

Thanks for sharing It really helps

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1715687#Comment_1715687

lindaw55, I did not receive regular scans, but at each visit there were specific questions asked. I would suggest asking what specific things you should be looking for - bloating? difficulties breathing? etc and then be aware of your body. (I seem to recall those are some of the questions - but please verify) if I had said there was a 'change' they would have scanned, of course, if I felt a change like that don't wait for the next check-in but call the office and tell them.