Research to help advocate for my mom and understand all this

[ConcernedSon]

Honestly this is the first forum I found when searching for online communities about cancer. I tried every Google search I could think of, and most were just information sites and no real interactive community. I also do not want to post on Facebook or similar social platforms.  If there are other communities that may be helpful to me, I would appreciate anyone who can share.

My mom is in her mid-70s and 2 years ago was diagnosed with a Stage 1A endometrial cancer. She chose a hysterectomy and post-surgery outcome indicated she was in a very low risk category for recurrence so her follow-ups were limited to basic diagnosis, no scanning and from what I understand no marker testing of any kind.

She was recently having mild constipation and her most recent exam showed a soft mass growth so she got a CT scan and the scan showed multiple areas in mostly her pelvic area that had masses and at least 1 area beyond that region. Nothing in organs but 2 are close. She got biopsies done and the prognosis was metastatic adenocarcinoma of the same cell markers from her endometrial cancer from 2 years ago, so it is definitely a recurrence.

I have not heard from the medical team yet what they are staging this at but since it's beyond regional it seems like 4A but I don't really know. The initial treatment seems like it will be chemotherapy but I want to make sure my mom knows about all her options and how to keep herself healthy. She is reasonably healthy, no other illnesses, but is mostly sedentary and tends to be anxiety-prone.  I need to be a fighter for her without overwhelming her and at this point all I can do is research and learn and try to buffer for her on much of this stuff so I can keep her from being overwhelmed.

[trobbo67]

Hi there, so sorry to hear about your Mum's reoccurrence of her endometrial cancer. I, too, have been had a reoccurrence of a low-grade endometrial cancer that I had removed via Total Abdominal Hysterectomy 6 yrs ago. I didn't need any follow up treatment after mine other than regular gynae check ups, so therefore hadn't given any thought of it coming back, especially since I no longer had a uterus! However, here it is! I have a tumour in my groin and lesions in my lungs and I'm being treated conservatively with hormone drugs. Although my specialist has not said as much, it is Stage 4 and incurable. So far the treatment I am on is working in shrinking the tumours, however there's no real timeline as to how this will progress. There is also very limited information or research available re these type of recurring cancers. I can tell you that I have been well throughout all of this, it was only picked up randomly during a routine examination, I am in my 50's and have not been unwell at all. The main problem is that the hormone treatment strips me of all oestrogen in my body so menopause is full on! My diagnosis is metastatic endometrial sarcoma. I hope the treatment options are positive for your Mum and her diagnosis is different to mine. Wishing you both well

[ConcernedSon]

Thanks for your reply, I'm sorry to hear about your own recurrence and hopefully all else remains well for you.

I think for hormones my mom will be OK since she's already gone through menopause but she does tend to be emotionally sensitive and her wellness in that regard is usually strongly impacted by her physical state.

So far I have not seen her get a specific stage although based on the info it seems like 4A based on my research.  This is very difficult to research and it's very difficult to find a broad/general online community (discussion board) about cancer that is active. Lots of info on cancer sites that is years out of date or medical studies that are only readable by doctors & researchers.  Lost of online discussions for breast cancer, lung cancer, etc., the big ones.

The best way I can help her right now is to help with her anxiety and nutrition and activity planning.  Mainly to make sure she is part of the process of fighting this herself and not just leaving it to doctors with whatever medical treatments they incorporate.