CA125 increasing, no symptoms, 7 years remission

[Kwiskwos]

My mother was diagnosed with stage 3C endometrial cancer. She underwent TAHBSO, had 6 cycles of chemo and 25 sessions of radiotherapy. Then we had monitoring. Everything is well until 2years ago, her CA125 started to increase. It will increase by 6, then decreas by 2 on the next check. I was worried. A year ago, it started to steadily increase. However, her ct scans remained normal. The last time her CA125 went was December 2019, i thought it will continue to go down but came February 2020, it went up to 75 again. Then this September it went up to 140. She has no symptoms and we're about to have her ct scan. Anyone who has the same experience? I mean,.it has been 7 years since we finished pur treatment and everything else is fine, but my mother's CA125 has been scaring me for the longest time. Please, anyone who can share their experience, it will be greatly appreciated.

[January-2016-UK]

Maybe you could ask for a PET scan instead of a CT-scan. I think they can sometimes show what CT-scans miss. Seven years is a great remission - long may it continue.

[Kwiskwos in reply to January-2016-UK]

I appreciate your reply. However PET scans are not readily available in our area, the nearest will take about a couple of hours of travel, which during this time, would be a struggle. Is recurrence still possible even after more than five years of remission? And why does the value go down last december? I'm so sorry if i'm pestering you with all these questions. I'm just so worried and scared for my mother. I hope you understand.

[January-2016-UK in reply to Kwiskwos]

I don't know why the CA-125 level went down, maybe you can you ask your CNS if this happens. Good luck with the CT-scan, hopefully it's not too long to wait for the results.

[Mommoo65 in reply to Kwiskwos]

I was just reaching my 5 year mark when a lymph node in my groin started to swell. My CA 125 had jumped from 6 to 85 so I had a CT scan which showed OC in the node where it apparently traveled to. An abdominal laparoscopy showed no tumors anywhere else. I am currently undergoing radiation on the node. 11 down, 14 to go!! After such a long remission, the disease is considered incurable but manageable. I hope your mom is ok and the numbers are just being ornery.

[Kwiskwos in reply to Mommoo65]

Thank you for your reply. My mother is well and asymptomatic. It is me who's having a difficult time handling this. I hope you'll do well in your radiotherapy.

[SUE7777 in reply to Mommoo65]

Hi Mommoo65, I was just reading your helpful post and noticed at the end you said after a long remission the disease considered incurable. That doesn't sound right to me, I know of a Lady in Illinois who was diagnosed in 1987 had full de-bulking and chemo treatment, she recurred 6 years later had more chemo and has been disease free since. There are many people who have recurred once been treated and then been free of disease. Did your Oncologist tell you this. I would challenge it if I were you. Hope you are disease free for ever after your treatment. Sue xx

[Mommoo65 in reply to SUE7777]

It depends on the person and their stage and location and subtype of cancer. I have regional recurrence and he fully expects it may return in the nodes in 2-3 years. This disease can recur after20 years and has. My oncologist, in my case, feels it will come back and we'll deal with each as it comes..

[SUE7777 in reply to Mommoo65]

Okay that's interesting. Thank you for getting back to me, I believe knowledge is power. Take care. Sue xx

[delia2 in reply to SUE7777]

Hi Sue. Technically speaking once you have a recurrence you are considered incurable. Some people go ten or fifteen years and then have a recurrence but the longer the remission the better the prognosis.

[SUE7777 in reply to delia2]

Thank you Delia, I didn't realise. Sue xx

[Kwiskwos in reply to Mommoo65]

Mommoo65, we now have the ct scan result of my mother and three fimdings were there, which i cannot really understand: one is renal cyst bosniak type 1 (which i read is benign), renal calcifications and retroperitoneal lymphadenopathies. I wonder what will be the plan for us, my mother's oncologist will not be on duty until friday and i feel like i cannot wait that long to settle this. I tried sending her a message but she isn't replying yet.

[Harleeboo]

I can see you are worried ,it’s so frightening ,I write for my daughter who also had debulking chemo and radiotherapy ,coming up now to 4 years.

Every test you worry and I really hope your mum will be ok and we wish you all the best.

[Kwiskwos in reply to Harleeboo]

Harleeboo, thank you so much. Life really isnt the same again after the diagnosis. I hope your daughter is well too.

[Lind58 in reply to Kwiskwos]

Agreed on that!