Endometrial Cancer Recurrence
Hello Everyone,
I’m here for my mother. She was diagnosed with Stage 1A Grade 2 endometrial cancer in November 2021 and had hysterectomy the next month. We were told no chemo or radiation was needed since there was no lymph node or other organ involvement. We took my mother to the ER September 2022 and they found the endometrial cancer had spread to the peritoneal cavity and omentum.
The gyn onc wants to put her on a clinical trial where they could potentially do immunotherapy along with chemotherapy (if she is in the test group).
I think to say that we are shocked is an understatement, since the cancer was so early. I’m trying to see what I should be advocating for so my mom has a better chance. I’ve been researching like crazy and I’ve seen treatment options including surgery to remove the “seeds” in peritoneal, CRS with HIPEC, progesterone or hormone therapy, metformin, etc. Please let me know your experiences/insights. Thank you.
Below is some of the medical lingo that I can’t decipher:
Immunohistochemical stains show that the tumor cells are positive for pancytokeratin, MOC-31, claudin-4, and PAX-8. They are negative for CK5/6, WT-1, and TTF-1.
Hormone receptor expression (by immunohistochemistry): ER: Positive (50%, variable intensity), PR: Positive (25%, moderate), p53 wild-type.
Mismatch repair (MMR) protein expression: MLH1: Retained. PMS2: Retained. MSH2: Retained. MSH6: Retained.
Comments
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So sorry to hear about your Mother's recurrence. It is not usual at stage 1A but not unheard of. There are so many unknowns with endometrial cancer. You don't say how much endometrial or uterine invasion there was. But moving forward you have lots of questions. I HOPE that your Mother is with a gynecologist that she trusts, and is very experienced treating this cancer. After hearing their suggestions, I find a good question to ask is if they were diagnosed with the same cancer what would they do for themselves. Your mother will have some decisions tome about treatment however.
As for your second question about medical terms in the biopsy report (I am assuming). It looks like they did extensive tests of mutations in your mothers tumor, and the mutations are listed. ER means estrogen receptors and PR means progesterone receptors. p53 is an aggressive mutation (I also have that). I cannot remember the mismatch repair designation for endometrioid but it is also a mutation. These mutations will determine what immunotherapy your mother will respond to.
I am including a detailed article that describes the mutations in the different types of endometrial cancer if you are interested.
Feel free to ask more questions.
Sue
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Oh looks like we can't post links. If you click on my name and profile the link is there too. BC and Belfast 😊
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Thank you Sue. Her myoinvasian was 21 percent. I’m not sure what all these genes mean but this is what the report said:
Immunohistochemical stains demonstrate the presence of MLH1, PMS2, MSH2 and MSH6 protein expression by the tumor cells. These results indicate that DNA mismatch repair function in this tumor is probably intact (low probability of microsatellite instability-high).
As concerned as I am about my mother, I am also terrified for myself and daughters now. Is this something that’s going to take me from them as well, and will it impact my daughters? Would a complete hysterectomy after my child bearing years help prevent this?
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I don't know how old you are but I know lots of women who had a hysterectomy after childbearing and menopause began. Most don't have their ovaries removed. Having your ovaries removed affects your libido and other things. Your chances of getting breast cancer are higher, 1 in 8 women in US. Uterine cancer is 27 cases per 100,000 women in the US. It is slightly higher if someone in your immediate family has it. If you have other family members with cancer you can ask to be checked for the BRCA gene. It increases your risk of some cancers. You can read about the risk factors for uterine cancer to see if you have any. CDC is a good source. And you can talk to your own gynecologist about having a hysterectomy. You have children and that reduces your risk of uterine cancer. There are no firm answers. I don't try and learn the names of the mutations. The specialist can and they know the immunotherapy that works for specific mutations. Treatment is improving greatly for recurrence. Treatment meaning chemo and radiation have side effects that are harmful. It is why the decision is a difficult one. They don't know who needs treatment in the very early stage. And avoiding harm from treatment is a factor too. If that helps understand a little why your mother did not have treatment initially.
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Thank you so much for your insight. I’ve been googling like crazy these last few weeks and it’s just making my head spin from all the medical terms that I don’t quite understand yet.
I’ve asked my moms gyn onc about different treatment options below and basically chemo is our best option apparently. We want to get a second opinion too to see if we’re doing the best treatment. I asked about the below options and her responses were below. Does this make sense to you or should we be pushing for more?
- surgery - the nodules are too small and numerous so they don’t recommend surgery but I’ve read other people have laparotomy to scrape these out
- HIPEC - there is a little spot in her liver that the doctors have told us is no issue (and even got smaller from last year until now) but when we asked about HIPEC, they indicated this disqualifies her
- Hormonal Therapy/Metformin - apparently hormonal therapy is only for patients with low disease burden and metformin isn’t as promising as they originally thought
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I do take Metformin but my blood sugar was elevated. It makes sense to me that lowering blood sugar levels lowers the speed of cancer cell growth. Cancer cells use a lot of glucose in their rapid growth. Yes the gynecologist response makes sense to me. And YES on getting a second opinion. Many cancer centers have what is called a tumor board. They share a case and then ask for recommendations on treatment, and they discuss it. I think that makes the best decision. A little more input. I have read other women here who had spots on their liver that were not cancer too.
It is a huge learning curve trying to understand this diagnosis. I am an RN and I had a hard time understanding this diagnosis and treatment process, and all the complicated pathology studies.
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It makes me feel better that someone in the medical field still doesn’t quite understand it.
The hospital my mom is at does have a tumor board every week. I asked all those treatment options above and that’s what they came back with. I wanted to get a second opinion from a top 10 cancer hospital but the gyn onc that my mom sees just did her fellowship there so I assumed she would have the latest treatments from there. We’re going to get a second opinion from the gastrointestinal department too to see if maybe their take on the peritoneal metastasis can be treated some other way (like the surgery).
I’m just in tears everytime I think about this and I can’t believe this is our reality right now. She’s worked her whole life to support our family and the kindest soul I’ve ever seen and I wake up thinking this is all a nightmare. I imagined her going on family trips with us and seeing the kids starting college. I just don’t even know how to cope.
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It is hard to deal with. With small tumors or several one of the concerns with surgery is spreading the cancer cells during the procedure so that is a big concern. There is hope though. It might not feel like it right now. I hope you have some support during this difficult time. Hugs to you, and we are here.
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Hi kwan78fina, I'm very sorry to hear about your mom's endometrial cancer recurrence. I know you mentioned that your mom's gyn onc just did her fellowship at a top 10 cancer hospital, but if I were in her situation, I would still get a second gyn onc opinion on how to proceed at this point. My thought process is this: if your mom's gyn onc just did her fellowship, she is likely well-trained, but not highly experienced at this point. Additional opinions from another gyn onc with lots of experience can't hurt, and if nothing else will reassure you and mom that whatever treatment plan her current gyn onc and team propose is her best option. Even if her first gyn onc had decades of experience, I would still want another opinion, as nobody can think of every possible option. Especially when you're talking about a recurrence, where second-line treatment options are likely to be highly individualized. A second opinion could present other treatment options. If travel is an issue, you may want to consider a virtual second opinion.
I was treated 23 years ago, and had internal and external radiation for a surgical stage 1C, grade 2, endometrioid adenocarcinoma. But I had a number of risk factors for recurrence, thus the need for both forms of radiation. I had a deeply invasive tumor that arose in the lower uterine segment, had extensive LVSI, and had a large (4 cm.) tumor. I do have a childhood friend who followed in my footsteps 5 1/2 years ago. Her endometrial cancer was stage 4, grade 3, at diagnosis. She had cancer seeding in the peritoneum at the time of diagnosis. She has gone through several different treatment regimens since diagnosis, but currently has no evidence of disease. She's been on the immunotherapy drug Keytruda for over two years now. When she was diagnosed in 2017, Keytruda was several years away from being approved for endometrial cancer. It was only approved a few months before she began treatment with it.
Good luck and good health to you and your mom!
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Thank you so much for all the insight! That gives me hope that your friend has same situation as my mom and she’s currently disease free. I will definitely ask them about Keytruda. Your friend did chemo, radiation, and Keytruda? My mom is in a clinical trial to do standard chemo with carbo/Taxol and potentially Pembrolizumab if she is in that test group.
We will proceed with the second opinion as well, because like you said, it doesn’t hurt to get validation or different options.
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My friend initially had chemo with taxol and carboplatin after surgery. She has never had radiation. About a year after chemo, she participated in a clinical trial of ONC-201 (a small molecule DRD2 antagonist that kills cancer cells but not normal cells). About a year after the clinical trial, I believe she had a few more chemo treatments. Her next regimen was Avastin. After roughly another year, Keytruda was approved for endometrial cancer and in mid-2020, she started on a Keytruda and Lenvima combination. She couldn't tolerate the Lenvima even after several dose reductions due to the the severe negative impact it had on her blood pressure. So she continued the Keytruda alone, and it has worked wonders by itself. Incidentally, pembrolizumab is the generic name for Keytruda, so it sounds like that immunotherapy drug is already being considered as a possible treatment option for your mom.
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Thank you! This has given me hope in an otherwise dreadful situation. I hope it works wonders for my mother as well.
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kwan78fina, please check to make sure your mother is working with a gynecologic oncologist. as for hitting the ground with a immunotherapy alongside chemo is having positive results as an initial treatment these days and clinical trials are showing this. Of course, there is no magic bullet to any of this, but the p53 or dMMR (mismatch repair) have responded better to immunotherapy for some reason.
hugs dear! it is clear she raised a wonderfully loving daughter.
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Thank you. She is working with a gynecologist oncologist, but it seems they aren’t giving her the Keytruda along with the chemo drugs as an initial treatment. She needs to go through blind clinical trial to chance she may get it. Is this normal standard of care? Or should I be looking for another hospital that will do both at same time?
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