The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

Uterine/Endometrial Cancer

Introduction: Getting Started with the Uterine Board - Updated 4/12/2022
You've found your way here because you or a loved one either has uterine cancer or there are initial indications that cancer might explain the symptoms now being experienced. This Board is a good place to learn more about what you can expect as there are initial appointments with doctors, tests, test results, and if…
Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
Uterine Board Frequently Asked Questions (FAQ) and Other Information - Updated 4/12/2022
While any member can create a new forum topic or respond to an existing topic, this page was created to provide members with quick links to certain posts on topics that others have found useful or informative. It also includes links to outside references and help on using certain features of this site. Here are the main…
A Fond Farewell
This Memorial Day is especially poignant this year as this site shuts down in a few days. It’s sad that we’ll lose this forum to seek answers and provide support to other women dealing with uterine cancer. I found the online conversations that we had with other women and, in some cases their families and friends, as they…
Before the site goes dark
I had to share how I feel before this site goes away. With so little time left I am not sure who will see this but it doesn't matter. I found CSN when I was alone and looking for others. As I read the threads there were always some women or family members that posted and shared so much. I was so grateful. Then we started…
Farewell And A Pretty Decent
Farewell to all the lovely, brave and supportive members. I wish you and yours. health, happiness, love, joy and peace! FYI I found an Endometrial Cancer sub on Reddit that I joined and it might be a good place to find some of what we had here in an anonymous way. https://www.reddit.com/r/endometrialcancer/ All the best! 😓😍
Port - take it out or not?
My last chemo was 6 weeks ago, I want this port out. My Dr said she recommends leaving it for a while but I could have it out if I want. It bothers me, I’m always bumping it and sometimes it itches. Should I be cautious and live with it? I choose to think I am done with all this and the port is not needed anymore, so I…
Post vaginal brachytherapy side effects - short and long term
Four weeks ago had a total hysterectomy via robot. The fast recovery was amazing compared to long recoveries from open hysterectomies. Now I need to decide on doing four radiation treatments to the vaginal cuff where they say cancer is most likely to return. I had 2.5 mm invasion into the myometrium, less than 50%. There…
Beach Therapy and Living Life After Cancer...so far!
It’s been 6 months since my last chemo and radiation treatments. I felt so weak and awful for about 10 weeks after, tired, achy and wrung out. I was ,also, just an emotional mess. I had terrible neuropathy in my feet and slight neuropathy in my fingertips. I often thought that I may have beaten cancer, but, at a great cost…
Need some advice...UPSC STAGE IIIC
My mother was diagnosed with UPSC stage 3c in august of 2013. She had 6 rounds of chemo and then radiation. By the end of radiation treatments (March 2014) she started to complain of neckaches. She put it off thinking that she would wait until her radiation was over to see a chiropractor. The neckache continued after…
Updates and sad to see the board go
Age old story, always meaning to pop in and update, but always stuff keeping me busy. And now the board is going away. Some of you have been especially dear at times when I needed it most, and all of you have been the best support system. And here I am approaching my 8 year followup after finishing surgery, chemo and…
Hi All!
It's been a long time since I've visited, and I find myself very nostalgic and missing you ladies who kept me company on this journey. I'd love to hear from my beautiful "old-timers" who are still here on the boards, and hear news about those who aren't. I also want to encourage y'all that miracles really do happen. I…
SURVIVOR....UTERINE CARCINOMA. STAGE 4-2b
Are we all a survivor of a very small percentage of people??? How long does a person stay in remission with a metastatic cancer??
The Email from CSN
Hi ladies - I am truly remiss in visiting more often here, but when I got the email today that this board was being discontinued soon, it made me panic - where will we go? How will I find you and know you're ok? If this has already been discussed and figured out, will someone include me in the "oldtimers" group? I pray…
Sad To Hear These Forums Are Being Shuttered On May 28, 2026
Just received an email about this. I have not been active myself recently as I am hitting my 5-years this August and all is well as of now. But this group was invaluable 4-5 years ago. I wonder if there are any FB groups anyone belongs to that can be recommended or another safe space to keep this going. If you know of any,…
Such a loss. ...
I am so grateful for all the support and education I received from this site. The last change to the site seemed to discourage a lot of interaction, and now this. I will miss all of you so much. I hope they leave the site as an archive, there is so much information here.
Post vaginal brachytherapy side effects
Diagnosed with stage 1a after total hysterectomy and will meet with radiologist next week. I was told it is up to me if I want to do further treatment as my pathology was very clean. I would be interested in any potential side effects that you may have experienced with this therapy. The limiting factor is my age (68);…
Carcinosarcoma
I am a 66 yr old that found pink discharge on 5/14/2025. PCM referred me to women’s center on 5/22/2025. They preformed a pap which came back clear and scheduled an ultrasound. Had ultrasound on 7/1/2025 and when Doc saw results she preformed a biopsy immediately. 7/10/2025 biopsy confirmed I have Carcinosarcoma. Referral…
Are there any other MMMT survivors out there?
I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've…
uterine carcinosarcoma
Hi ladies, I had breast cancer did lumpectomy, chemo and radiation removed 11 lymph nodes. Then it came back 3 yrs later so i did double mastectomy this September. Come November this yr mri of the pelvis showed abdominal mass and when they went i.n to do surgery they found mass spread on my omentum. They came out and got a…
Low grade endometrial stromal sarcoma
Hi, I also was recently diagnosed with low grade endometrial sarcoma. It also spread to a lymphnode outside of my uterous. So it is considered stage 3. I am not starting my 4th week after a total abdominal hysterectomy. I have just started letrozole. Since I’m experiencing full on menopausal symptoms even though I am 50 it…
Low Grade Endometrial Stromal Sarcoma
I know this is a very rare type and as such I don’t see much in here about it. Newly diagnosed and haven’t even seen my doctor post hysterectomy to discuss treatments. I would like to hear from others.
Excessive hair growth on face after chemotherapy
Hi everyone, I hope to hear from you! Uterine cancer stage 3, dx'd last summer, hysterectomy in August. I had 3 chemotherapy treatments last fall, each 3 weeks apart. I lost my hair within 1 month of the first one. Then I had 6 1/2 weeks of daily pelvic radiation (the side effects were awful - ask me questions if you're…
54 y/o post menopausal for 2 years and started spotting
Hi. I am on Climara estrogen patch and 200mg of progesterone, which I've been on for several months. I was on 100mg of progesterone, but my doctor upped it for me about 6 weeks ago. About a month ago I noticed very, very light pink, almost hard to see, spotting when I wiped. Within the next few days it remained the same…
Loss my wife to uterine cancer. (carcinoma sarcoma)
my wife was a 48 year old school teacher in the Orlando Florida area as she passed away after only a 6 month battle that took her from her family and I. We were torn on treatment options but her family and friends convinced her to do the traditional chemo and radiation that only forced the cancer to spread and metastasis.…
Joint pain
I’m receiving Keytruda infusions every 3 weeks. My knees and hips are hurting. I’ve read Keytruda can cause joint pain. I’m using cold / heat packs on my right knee which is swollen and difficult to bend. Any suggestions on how to reduce the joint pain?
Journey
Started out with a stroke and a year later an ablation…8 months later Endometrial Ca dx…what a road! I'm closing in on 69… Love playing Pickleball and I seem more concerned with the thought of not being able to play than the up coming chemo!
Brachytherapy dilator use
I've just finished my 6 rounds of chemo and am now scheduled for brachytherapy radiation (they had found stage 1A carcinosarcoma (MMMT) and UPSC). I'm now scheduled for 3 brachytherapy sessions. I'm finding that I'm rather anxious particularly about the long term dilator use. I found that research on the effectiveness…
Testosterone
Ladies - I posted asking about HRT after this cancer in uterus is gone - I read it is safe because everything is removed - but I’ve been reading it’s not true - what about testosterone ?
Hello, has anyone had their Taxol infusion reduced by 15% due to extreme side effects?
Hello friends, During my visit with my Onc doc (after my 3rd infusion), I disclosed that I had pretty uncomfortable neuropathy in my feet. I'm an ex snow skier and have had frost bite on my feet/toes about 30 yrs ago. I am now 71. The neuropathy ranged from pins and needles, shock waves up the legs and itchiness. My onc…
Uterine Carcinosarcoma (MMMT) Survivor – In remission 9 years after diagnosis and treatment
Good morning, all! I’ve been away from the Board for quite a while due to a raft of family issues (although I’m fine personally). I’m hoping that things will be settling down in the near future and that I can finally catch up with everyone here soon. But in the meantime, I did want to provide an update on my own post…
How to manage radiation-induced diarrhea?
Well, it's begun, and I can only assume it's going to get worse. I'm trying to eat white rice, white potato without the skin, and meat/eggs. Any other recommendations for what I can/cannot eat? I already know that I should avoid fiber.
LadyMox – Possible Update
Like others, I've been worried that we hadn't heard from LadyMox for some time, even though she had logged onto the board in February, So I did a search this evening and sadly learned that a young woman name Tammy Mink (Tammy was LadyMox's first name) just passed away last week. From the location (Buffalo), her age (42)…

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The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Uterine/Endometrial Cancer

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