Savvy Cooperative is looking for people who have been diagnosed with endometrial cancer for a paid online study ($150 USD Compensation)

Details

45 minute virtual interview

15 minutes of optional pre-work

Purpose

To learn about the health and experiences of people living with endometrial cancer

About Savvy Cooperative

Savvy Cooperative empowers people to use their health experiences to inform new products and services through surveys, interviews, product testing and more. It was founded by two patients who wanted to make sure people who shared their health experiences were fairly compensated.

My wife is to have a hysterectomy this week following a diagnosis of what appears to be early stage endometrial cancer. A biopsy found the adenocarcinoma and a PET scan seems to show that it hasn't spread. Which hopefully means the hysterectomy should be sufficient.

The surgery will take place with a cancer specialist but this isn't in a fully economically developed country. While we have confidence things will go as well as planned, are there things we should consider or know about following surgery? Recovery time expectations? Follow up assessments?

We postponed a family move to Europe so she can have the surgery more quickly than is the case in Europe but we will potentially be compromising a bit on the level of excellence.

I ended up in the hospital on 7/25 for hemorrhaging that I couldn’t control. I was given Provera and sent to my local OBGYN on 7/28 and had a biopsy. On August 1^st at 1:04 am, I found out I had Adenocarcinoma of the endometrium, endometrioid type, FIGO grade 1. The wait has been agonizing.

My first appointment with the James Cancer Center in Columbus, Ohio, was on 8/22, which is exactly 21 days after I found out what happened. The dr ordered CT scans, but isn’t this wonderful, the insurance company said it can take 14 business days to approve them. On top of this, my surgery date is 9/10, and no one can get me in for a CT before this point.

On top of all the waiting, which only makes things worse for me, I am very weak. The Provera used to stop the bleeding puts me in a coma, and I’m only taking 10 mg instead of the 20 mg I am prescribed, or I would be out cold all day. I like my dr, but I am PETRIFIED.

First, I weigh 344 and have a BMI of 67, so I am a high risk patient. He told me he would try. He said the robotic procedure is the best chance because there’s little blood loss, and my hemoglobin is already low at 10, and less time under anesthesia. He told me they use the Trendelenburg method and I will be 30-40 degrees on my head so they can fill me up with gas.

Here's the problem. When they use the Trendelenburg method and you’re obese, they find that it shifts a lot of weight to your lungs and heart, causing further complications. He said that they may have trouble keeping my oxygen at a good level. So, he said if my oxygen drops, they will do a D&C and an IUD because it also treats cancer.

I am so upset. First, everything is about my weight, and I know I am a big girl. I have lost over 70 lbs as it is, so I am trying. I hate that I may have to just get an IUD and let this monster stay inside my body. While it says I am a FIGO 1, everyone knows it can be anything when they open you up. It could have started somewhere else and there are just so many variables.

The waiting game is so hard. I just keep thinking that I don’t want to leave this earth yet. My parents are older, and I don’t want to go before them, as it would crush them. I keep hearing about the risks, and they act like I am just at death’s door.  I would love to hear from anyone else. I am tired of bleeding all the time, but I feel like I want to run away. I am 50 years old, and I have never had an operation in my life. I’ve never even taken a pain pill or more than one Aleve. Now they’re going to be giving me steroids, insulin, and all this stuff when I have such a hard time with meds anyway?

 I could really use some encouragement because I feel like I am just waiting to die! ☹

I went today for my follow up appointment after my hysterectomy. I am grade 1 so I was hoping for stage 1a or b. My doctor said I am cured, no further treatment needed!! Stage 1a, it was contained to the uterine lining. 0% invasion into the uterine wall!! I’m so happy and relieved!

Looking for your experiences post-brachytherapy specific to urinary frequency and bowel irritation.

I’ve read that the radiation used for cuff brachytherapy- Iridium-192 - has a half-life of 74 days. So, theoretically, I’d expect to return to normal around 2.5 months after my final brachy dose.

My symptoms are definitely better than during and just after radiation. I’m nearing the 2.5 month since treatment and just wondering how anyone else’s experience with these issues was months after treatment.

Can someone please share their experience being diagnosed with stage 3 uterine cancer? Doctor said it spread to the vagina. Did you take chemotherapy, radiation, opt not to? We know a hysterectomy will need to be done. Mom could really use some encouragement and realistic expectations.

We’re so confused but still extremely grateful. My mom had a total hysterectomy that removed her tubes and ovaries. She was diagnosed with stage 1b. Her results said that it was over 60% into her muscle wall.

This pathology result came a month ago. She was sent to an oncologist and she was gonna start radiation in September.

We just got a call today and they said that they examined her uterus again and the cancer was only a millimetre in her muscle wall. Apparently the 60% myometrial invasion wasn’t cancer. It was adenomyosis but they mistook it for cancer. We’re genuinely so confused at how they interpreted it wrong. This is exactly what it said in the recent report:

“While the endometrial tumor appears to extend widely into the myometrium, upon closer inspection this is noted to be within adenomyosis. Focally there appears to be myoinvasion extending less than 1 mm from adenomyosis within the inner half of the myometrium. No definitive invasion in the outer half is identified. This tumor is therefore considered to be stage pTa. There is strong positivity for ER in approximately 90% of the non squamous areas of the tumor”

Her oncologist said she will no longer need any type of treatment because this is stage 1a

Has anyone experienced something similar?

My mom was recently diagnosed with uterine carcinosarcoma. She had her hysterectomy a couple weeks ago. Just had the follow post-op appointment with pathology results. She is at 3a endometrial cancer. She will have 6 cycles of chemotherapy every 21 days and then immunotherapy. My emotions are just all over the place and I’m scared. I think seeing some success stories or what the road is going to look like, will help if anyone is willing to share 🤍 thank you!

My best friend's (53yo) followup appt. is today at 10:20 am CST. Her friend and I are going with her so she's got people there for good or bad news. Please say your prayers and send all the good vibes to the universe that it's good news 🙏🏽🤞🏽✌️🏽✊🏽💪🏽👏🏽. Fuck you,🖕🏽cancer. BACKGROUND: She had an ovarian (benign) mass removed about 2 weeks ago, and they we already planning a total hysterectomy. The gyn-onc thought the uterus didn't look right, so she sent that for the rapid path review as well and they found the cancer. They took all the girl parts and the omentum and lymph nodes to stage at that point. I'm a hospital pharmacist an bc she's a pharm tech so we're familiar with all of the treatment options, but hoping she won't need them.

I finished 6 rounds of chemo but not NED, just "stable" for now. I am four weeks post last round of chemo and one week post Keytruda. I will be on Keytruda for "maintenance" for the foreseeable future.

The last two rounds of chemo were rough and I was pretty much bed bound for about a week and then struggling for the two weeks before the next round. So I have been like this for the past 9 weeks or so. Now I am 4 weeks post chemo and my doctor says I should be feeling better by now but I am absolutely not. They did a bunch of blood work, scans, x-rays, and urine tests, all negative. No blood clots. So nothing to pin point as the reason for my weakness and exhaustion. But I can't do anything around the house or garden with getting short of breath and weak within minutes. Supposedly I am not anemic, although my hemoglobin and RBC are low, not low enough to be anemic apparently. It is really frustrating feeling like this. Am I just going to always be like this and will I just need to "push through" until I get better? Right now if I "push" too much, my eyes black over and I am scared I am going to faint. I don't really feel dizzy per se, just faint. I am beginning to feel like the doctors don't really take me seriously.

Anyone deal with Lymphedema in the groin area after chemo/radiation? Any advice is VERY welcome - hate feeling turgid and alien in the remaining lady bits I have left

My post op visit is coming up Thursday. I’m wondering what questions to ask. I know I will get the pathology report so that will be a lot of information. I’m grade 1 so hoping for stage 1a or b. I think I want to ask about when I can do pelvic floor and abdominal exercises so I can have the best recovery possible from the hysterectomy. Just checking for things I haven’t thought of. TIA

My mom was recently diagnosed (she had spread to her lungs so I’m assuming they’re going to stage it as 4b but they have yet to tell her) and had her first chemo session 3 days ago. She’s been in so much pain for almost a year and started hemorrhaging a few days ago. They weren’t going to do radiation but with the pain and blood loss they are going ahead with it. She has a small lesion on her pelvic bone and a large tumor in her uterus. Has anyone had decreased pain with radiation and how long did it take to see effects? I just want her to not be in pain anymore 😔

My mom is 3 days out after her first chemo session. Her biggest complaint is that she’s so tired and weak and she doesn’t want to anything. How many days post infusion are the worst? She’s taking her nausea meds around the clock to prevent nausea when is the nausea risk low enough to not take them?

Did anyone take nutrofol after chemo to help with hair growth?
I am hormone positive and just wondering what others did...

Hello i am 24 with uterus cancer. I noticed the file from my hysterectomy in my patient portal. I put it into ChatGPT. It said stage 2 grade 3. I’m assuming that my doctor will speak to me about it during my post surgery check up. What are some things I should expect to hear? Has anyone who’s had a similar diagnosis been able to go without further treatment? Or should I expect to hear I need to do chemo or radiation

My mom recently did a colon resection for suspected colon cancer a month ago. She had endometrial cancer previously 2 years ago was Stage 1 localized no spread (what the doctor told us) but looking at a report on a PET CT from a top cancer hospital I moved her to makes me want to throw up. It’s confirmed spread from the endometrial cancer 2 years back, mullerin carcernoma. How did it get to this stage? I can’t help blame myself for not taking her to the doctor for regular scans. Could I get advice from anyone facing similar challenges as well as a realistic outcome? Her report is below:

Impression 1. 3 rim-enhancing hepatic lesions consistent with metastases largest measuring up to 1.9 cm. 2. 1.7 cm cyst segment 6 of the liver. Additional multiple tiny T2 hyperintense nodules within the liver are too small to characterize but presumably representing additional cysts. Consider short-term follow-up to document stability. 3. Areas of enhancement abdominal wall suggestive of recent surgical procedure/trocar insertion. Attention to follow-up is advised to document resolution. 4. CT scan of the chest is recommended to exclude metastases within the chest. 5. 1.4 cm nodule right adrenal gland favoring an adenoma. 6. 1.2 cm probably septated cystic lesion/cyst posterior left kidney. Bosniak 2F.
Narrative MR ABDOMEN AND PELVIS WITH AND WITHOUT CONTRAST: HISTORY: Colon cancer, metastatic, staging COMPARISON: None available TECHNIQUE: MR imaging of the abdomen and pelvis was acquired using a multi-element body array coil. The following sequences were performed: Axial and coronal T2 HASTE through the abdomen and pelvis, in and out of phase abdomen, MRCP, axial T2 with fat saturation through the abdomen, axial and coronal breath-hold VIBE pre-gadolinium through the abdomen and pelvis, sagittal T2 HASTE through the pelvis and axial free breathing diffusion through the abdomen and pelvis at b values of 50 and 800. Following uneventful intravenous administration of 5 mL Gadavist, coronal VIBE as well as axial dynamic VIBE sequences were obtained. FULL RESULT: LUNG BASES: Minimal linear atelectasis right lower lobe. LIVER: 3 T2 intermediate signal hepatic lesions with peripheral enhancement and perilesional hyperemia consistent with metastases. These demonstrate restricted diffusion. Representative examples include a 1.9-1.9 cm lesion segment 7/8 image 16 series 25. 1.4 x 1.2 cm lesion segment 4A superiorly image 11 series 25. 8 x 8 mm rim-enhancing lesion segment 4B image 30 series 25. 1.7 cm T2 hyperintense nonenhancing lesion segment 6 consistent with a cyst. Image 23 series 37. Additional tiny T2 hyperintense nodules are too small to characterize but probably representing additional tiny cysts. GALLBLADDER/BILIARY: The gallbladder is normal. No significant biliary ductal dilatation. SPLEEN: No enlargement or focal lesion. PANCREAS: No lesion, fluid collection, ductal dilatation or atrophy. ADRENAL GLANDS: [No gland is mildly thickened. 1.4 x 1.2 cm nodule right adrenal gland with loss of signal and out of phase sequence favoring an adenoma. Image 26 series 19. KIDNEYS: 1.2 cm cortically-based T2 hyperintense nodule posterior left kidney with possible septations favoring a septated cyst. Image 23 series 37. Unremarkable right kidney. No hydronephrosis bilaterally AORTA AND VASCULATURE: The aorta is normal in size. There is patency of the major mesenteric vessels. The portal vein and SMV are patent. RETROPERITONEUM: No significant adenopathy. BOWEL/MESENTERY: The stomach is unremarkable. Normal caliber small and large bowel. No significant mesenteric adenopathy. Trace pelvic ascites. ABDOMINAL WALL: Areas of nodular enhancement abdominal wall on images 75 and 82 series 25 presumably related to recent postop changes status post trocar insertion. Attention to follow-up is advised to document resolution. PELVIC ORGANS: Status post hysterectomy . URINARY BLADDER: No visible focal wall thickening, lesions or calculi. PELVIC NODES: No significant adenopathy. BONES: No acute or suspicious osseous lesions. OTHER: None

For those of you with estrogen sensitive cancers, I was wondering what advice (if any) you were given about phytoestrogens and how you handle them. Do you actively avoid them (because cancer)? Do you eat more of them than before (to help with menopause symptoms)? Do you just eat the same as before and not worry about them at all?

For context, I was diagnosed with endometrioid adenocarcinoma grade 1 stage 1a after my hysterectomy in late May and had my ovaries removed 3 weeks ago. My tumor was sensitive to both estrogen and progesterone. Obviously no HRT for me, but I've been given contradicting advice about phytoestrogens by my doctors. Some say it's safe (low risk cancer, and phytoestrogens have a much weaker effect than estradiol) and a great natural way to alleviate menopause symptoms naturally, others say it's better to avoid them to be on the safe side.

Phytoestrogens are found in soy, chickpeas, lentils, some types of beans, flax, sesame, berries, wheat, rye, almonds and many other foods. I would honestly struggle to avoid them all and still have a healthy balanced diet, especially as a vegetarian. So far, I've been eating the same as always, but I feel really conflicted about this so I'm curious how others are handling this, and whether this is a concern for you at all or if I'm just overthinking things.

UPDATE: my mom had her hysterectomy. They assumed it to be a 4-5 hour surgery which ended up being 12 hours. They found cancer in her entire abdomen, her colon, her bowels, her pelvis and I want to say cervix. The surgeon was able to remove it all!!! Truly a miracle. She had way more disease than expected but he said it's all out and he doesn't suspect she'll need to do radiation just chemo to kill any cells that couple of been lingering. We are elated with the outcome

My mom was recently diagnosed with stage 4 endometrial sarcoma. Her doctor ignored her bleeding for two years telling her it was normal. She has been in so much pain for the past 3 weeks due to the tumor pressing into her bladder but has her hysterectomy scheduled on Monday if they can even do it. We are scared and lost. My mom is my best friend and the rock to our family. I'm only 31 with 3 small children and she is only 64. Looking for hope or what to expect. I read too much online and I'm scared shitless

My mom was recently diagnosed after going in for a hysterectomy (was not completed) where they found cancer. I’m at a total loss at the moment. She’s been taking the diagnosis well for all intents and purposes but she started bleeding BAD out of nowhere about a week ago. Doctor put her on megace but it hasn’t been helping. She went to the oncologist on Tuesday and her RBC were 7.7 and they sent her home and said they would give her blood on Friday before her first chemo session. I got a text from my sister this morning who is with her at the moment and she said that my mom’s BP was 93/52. I was like nope immediate ER. When they got there they checked labs and her RBCS were 5.3!!! Thankfully they gave her fluids and 2 units of platelets and she is starting to feel better but still exhausted from the blood loss and Benadryl they gave her. Has anyone experienced this and what helped? She’s starting radiation on Tuesday to hopefully help with the bleeding and tumor shrinkage.

Another notable lab…her WBCs. They were slightly elevated (13 something) on Tuesday and today they were 22 and her neutrophils are elevated as well. Has anyone experienced anything like this before? She’s going in tomorrow to get more labs and her first chemo infusion but it seems like no one is answering any questions or has any answers. I’m so frustrated with how this is all being handled. Any advice on what my sister and I can ask the doctors or care team is so much appreciated. My mom is just very upset and weak and I don’t know how much more of this she can handle.

Anyone allergic to taxol? My mom had a horrible hypersensitivity reaction at her first round. After pain meds, fluids, steroids, benadryl, and oxygen they started it back up slowly and she was able to complete it. Yesterday was round 2. She got premeds and they started the taxol slow but she still reacted again. They declared her allergic, only gave her the carbo, and said they will start an alternative for the taxol next round.

From what I have read it seems the replacement will either be Abraxane or Taxotere. Anyone have any experience with this?

I have posted before. I was diagnosed with endometrial cancer early last year and had my hysterectomy in April. Fortunately I was grade 1 stage 1a. At my 4 week follow up with my gyn onc, I found out that the hospital had decided to close her department and end her contact (she was on locums) and she was leaving the state. She told me to just go to my regular gynecologist for my every 6 months follow up appointments. I had only met this gyn 2 months prior, but ok she's all I've got.

So I just tried to make my next appointment for October but couldn't do it online. I called scheduling and was told my Dr. left the practice 2 months ago, in a tone of voice like I should have known that already. I was not notified that she was leaving at all.

So I guess now I have no Dr. I am thinking of going to a different practice, mainly because the hospital this practice is associated with is doing some bad things for patient care. But I'm doubting another Dr. will take me as a new patient at this point.

Guess I needed to vent. Feeling very let down by doctors.

I’m interested to know who all didn’t know they had endometrial cancer going in for a hysterectomy, but discovered afterwards. How was your surgery performed (robotic, open) What was your stage? And what was your treatment protocol? Mine was discovered after.. robotically.. stage 1.. mot completely sure about treatment yet. I am Scared because it was removed in pieces.. not intact. Do not yet know if there was precautions taken to contain it all since it was removed vaginally. Looking for your situations..

Hi everyone, I just went to my six month checkup and my surgeon recommend that I start using some kind of estrogen topical cream to help with the dryness and atrophy. She said it is fine to use it and it won't affect the cancer recurrence. I was wondering if that's what other doctors think also? Just looking for maybe other people's opinions. She also said I can just start with regular over the counter vagina cream or lubricant. I wonder if anyone has recommendations that they like. Thanks!

Diagnosed on 8/1. I had an ultrasound yesterday that shows a tumor in the uterus and a 36mm endometrial lining. According to the doctor 36mm is way abnormal. CT scan in scheduled for 8/28. I am curious what others experienced with the CT scan? Did it show more than the ultrasound? How thick was your lining? Sorry for all the questions. I am just trying to wrap my mind around all of this.