Endometrial cancer

jxl007

Hoping to find some support here. I'm not a cancer patient but I am a caregiver for my mother, who was diagnosed with Stag 3A Endometrial Cancer, an aggressive less common type, high grade uterine serous carcinoma. I didn't take my mother's cancer diagnosis really well. It's all very sad =(

Long story short, my mother, was experiencing irregular symptoms, post menopausal, and scheduled a visit with her primary care physician for checkup. This was in October 2021. Her physician didn't find any irregularities but just to be safe, ended up doing a endometrial biopsy. Shortly after, the results came back showing signs of a high grade uterine serous carcinoma. This broke my heart and I was devastated for her. She was then referring to the oncologist for further assessment.

We met with the gynecologists (end of Oct 2020) and the team immediately started the debunking/staging process which first, would involve surgery, a full hysterectomy. This was scheduled for early November. Everything happened so quick so from the first visit to the scheduled surgery, we had a week to take care of all the necessary lab works, pre-op, etc.

Initially, it was said they would perform a robotic assisted hysterectomy based on the initial lab report and scans. However, when they started the surgery, the noticed the tumor had spread more than what they initially suspected (or saw from scans) and performed a full open surgery. Surgery was a success, and the doctors were able to remove all visible cancer cells. Tumors did spread, but localized, within the tubes and ovaries, but nothing beyond that. No signs of tumor in nodes, etc. Final lab report based on the specimens removed and examined, staged the cancer as Stage 3A.

Post-Op, a month after, it was recommended that she consider chemo. She agreed and successfully completed six session of taxol/carbo and hercep. The treatment went well for her and she tolerated without any issues. She completed this end of March. I couldn't be more proud of her for fighting her way through this whole ordeal and being strong for both the surgery and the infusions.

Three months later, just recently, she went in for her three-month check up. CA-125 is elevated, but still within normal range, although still concerning as it jumped from the low teens to now 30. To be quite honest, I've been very paranoid and worried about her CA-125 level every time she gets her blood drawn. During her recent follow-up exam, her doctor noticed some tissue scarring, vaginal lesions, that she ended up taking some tissue sample to get it biopsied hoping ruling out recurrence. Although her doctor said not to worry about it, I am a bit concerned and now waiting for the final lab report is putting me unease. My mother doesn't know and I do not want to tell her at this point and worry her (English isn't her first language). I'm close to my mother and it breaks my heart to see her have to go through this, as anyone would with family members going through cancer.

Wanted to get some input to perhaps those who may have experience similar situations as above and may shed some light as to what the additional lesions may be. I fear that despite the surgery and the six chemo sessions, that this could be a recurrence, although, she has zero symptoms, and is as healthy as she can be. Just a bit sad as what this new discovery may be and I only fear the worst, but I'm hoping the final report comes back negative for any cancerous cells.

Sorry for the long story above. Just wanted to reach out to a community for support.

cmb

I haven’t had the same experience post treatment as your mother is having, but I wanted to welcome you to the Board and encourage you to keep asking questions as the doctors share more information about what they’ve found and possible next steps. I know that it is discouraging to think that her treatment may not have kept her NED (no evidence of disease) for very long.

However, there are many different types of non-cancerous vaginal lesions, so I hope that you and your mother get good news after the biopsy. Come back and let us know what the biopsy showed.

jxl007

https://csn.cancer.org/discussion/comment/1698101#Comment_1698101

Hey CMB,

Thanks for the reply and kind words. It is a bit sad to think that her recent surgery and treatment may not have kept her NED but we will remain positive on next steps. Will keep the forum inform on the lab results from the recently biopsy from a three month follow up appointment following a successful six cycle chemotherapy in addition to surgery prior.

Thanks!

thatblondegirl

Yes, welcome to the board, jxl007. Please let us know what you hear about the results.

Hugs, A

Forherself

Welcome JLX007. Your mother is lucky to have such a caring daughter. It is very scary to think about a possible recurrence. Has your mother's CA125 gone up and down with her cancer cells in the past? I have never had one done. It is reliable for some people and not at all for others. Any abdominal inflammation can cause the CA25 to rise also. I hope that is the case with your mother. And as for the biopsies. The doctor will always err on the side of caution. We have members here who are 3C who are four years out with no recurrence so there is hope. I wish your mother all the best.

jxl007

https://csn.cancer.org/discussion/comment/1698120#Comment_1698120

I appreciate the kind words. It saddens me to have to see her go through this but we are all trying to remain positive. When she was diagnosed and prior to the surgery, her CA125 was elevated at a alarming rate, which then later decreased into the normal range, immediately after her full hysterectomy. The team was able to remove all the visible cancer (that they could see, at least) and then recommended the six cycles or chemotherapy, just to make sure we treat any remaining cancer cells, if any, that we could see see visually or through scans. First two chemo, the CA-125 continued to decrease to the single digits, but then after the 3rd and through to the final cycle, the number stared to gradually increase. A bit concerning, although, little fluctuations is nothing to worry about, I am told. Three months later, at her first check-up, the number pretty much double, but still remain within the normal range, but on the higher end of the spectrum. Strange that this number continues to rise, even with surgery and the six cycles. So it's a bit concerning; I'm hoping you're right that the rise in CA125 is just from other factors other than cancer. Will keep everyone posted on the biopsy results.

NoTimeForCancer

oh jxl, my heart breaks for you. As already noted, your mother raised an excellent your person who is her best advocate to help her.

I understand your concerns about the CA125, and there are other reasons, not a recurrence, that could be elevating it as well. Perhaps you can ask the doctor to tell you what you should be looking for in symptoms of a recurrence. I always get the 'bowel issues, trouble breathing..' I forget all of them when I go for visits, but that is why I am asked.

Please let us know how it goes. This board is for warriors and their families! None of us could fight with out the support of our loved ones.

jxl007

The biopsy results came back and unfortunately, its a recurrence, this time, in the vagina. Definitely emotional right now. I just don't know how to deal. It's been such a crazy six month, from initial diagnosis, to surgery to six cycles of chemo, only to learn after three months following her chemo completion, the cancer is now back. Her doctor has ordered a CT scan to assess the extent of the disease and if limited to vagina/pelvis area, then her doctor is going to recommend radiation.

😥

Forherself

So sorry to read about your Mother's recurrence. Now would be a good time to request genetic testing to identify which immunotherapies might match her mutations. Did they say she will have brachytherapy? I would also ask about immunotherapy. I hope the scans don't show anything further.

Sue

jxl007

https://csn.cancer.org/discussion/comment/1698394#Comment_1698394

Hi Sue - Thanks for the reply. They haven't said anything about her radiation treatment yet. We are waiting to get her CT Scan completed, which I'm hoping doesn't show anything further, and then review the radiation treatment plan, which I won't be surprised if it includes brachytherapy. I'll inquire about immunotherapy as well. Thank you!

Trying to cope with everything. It's tough.

Forherself

https://csn.cancer.org/discussion/comment/1698396#Comment_1698396

It is so hard. Hugs to you. You are a wonderful daughter.

Kaleena

I’m so sorry to hear of your mom’s recurrence. I was surprised that they didn’t do any type of radiation treatment either pelvic or brachytherapy, however, I see that it wasn’t quite time for that yet and she got a recurrence in the meantime. Although I was diagnosed 2005 with Stage 3A, Grade 2, my endometrial adenocarcinoma was not the aggressive type. I have had two recurrences since then and I did recently have surgery to remove extensive scar tissue.

I see you indicated she was also taking herceptin? That is an immunotherapy treatment. You’re a wonderful daughter and I know how hard this is on you to watch your mother go through this. Hugs.

Kathy

jxl007

https://csn.cancer.org/discussion/comment/1698776#Comment_1698776

Hi Kathy - Thanks for the reply and I appreciate the support!

I, too, was a bit perplex as to why radiation wasn't part of the initial treatment, but then again, I'm not the doctor. I think her doctor's plan was to just complete six cycles, which after she completed it, she was clear of cancer but after her three month check-out, her doctor found some tissue scarring in the vagina, which was biopsied to determine a recurrence. CT Scan was done and they found some small lesion near the liver concerning for metastatic disease and possible omentum/mesenteric lymphadenopathy. Her doctor then recommended targeted therapy and additional immunotherapy combo (pembrolizumab/Lenvatinib). I don't know at this point. It's all too much to take in =(.

Kaleena

((((Hugs))))

NoTimeForCancer

jxl007, you are a wonderful daughter. Cancer is hard, but your mother raised a wonderful daughter and advocate for her. Please continue to let us know it goes - we are all here for you. Hugs dear.