r/endometrialcancer • u/AnyPumpkin2322 • 10d ago
Mom recently diagnosed looking for hope
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
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u/CoconutMacaron 9d ago
My mom has been diagnosed stage 4 for five and a half years and is still largely living her life. She’s 74.
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u/Educational_Ad1324 8d ago
Hi can you provide more insight on the type of uterine cancer your mom had and treatments ? Thanks
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u/CoconutMacaron 7d ago
I honestly don’t know a ton of details. She does not like to talk about it much. I do know she has so many tumors throughout her abdomen that they don’t even count them.
She started out on chemo. Then spent probably about two years on Keytruda. She had (in my opinion) a questionable PET scan than found NED. Then she spent about six months without treatment and now she’s back on chemo.
(I say the PET scan was questionable because her blood sugar was so low she was right on the cusp of not being able to do the test. So I don’t think she was actually NED.)
She would love to be back on Keytruda because she found the side effects easier to handle. But they won’t let her back on it. I’m assuming this is because of insurance but I’m not certain. She’s trying to get into a clinical trial now.
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u/Ready-Sherbet-2741 10d ago
The scared shitless thing is completely understandable. There are stories of hope around but I think the better way to think about it is to cross each bridge as you get to it. When they do the surgery they will know more and then further treatment decisions can be made. And there will be treatment and that will lead to more information eventually. No one knows for sure what will happen (at least that’s what I tell myself all day every day). Your mum is getting treatment and that means some hope. Hugs for your mum.
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u/mcmurrml 9d ago
Some of these situations are just outrageous. I don't know if there is a mechanisms to report this doctor when your mom gets squared away. This doctor blew that off for two years!!! Post menopause bleed is never normal!!! It is a sign of cancer and how did this doc say such a thing! It's outrageous! I hope you have a great doctor now.
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u/DaisyCutter9999 9d ago
I’m as outraged as you are. I had a sudden bleed at age 60 - without any history of fibroids or other gynecological issues. My gyn saw me less than 48 hours later, and I had an ultrasound and hysteroscopy with a biopsy during that appointment.
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u/AnyPumpkin2322 9d ago
This is what I wish would of been done. She had an ultrasound in Feb and her gyn said it was A ok. Told her she was fine. Her 3rd time in a year in a half she told her she was spotting every few months. Then in June she started bleeding every single day and they decided to do a dnc a month later. It's absolutely horrible
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u/AnyPumpkin2322 9d ago
My dad is speaking to an attorney and they really aren't ones to usually go after. But we are just devastated by this news that could of potentially been a lot different
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u/mcmurrml 9d ago
You don't even have to go after. The point is you can still report this doctor to the hospital he or she works at. Any doctor worth their salt knows post menopause bleed can be serious and always followed up. It is the main symptom of one of the female cancers. Your mom's cancer could have been caught long before now. Please report this doctor.
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u/mesembryanthemum 9d ago
Just a suggestion: stop reading online.
I chose never to do (except for how long my surgery was expected to take) because I knew I would dwell on every negative comment or story. My oncologist agreed that this was not a bad thing, and said it also stopped me from reading medical articles that were years out of date.
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u/AnyPumpkin2322 9d ago
I know my mom didn't even want to tell me the kind of cancer she had so I wouldn't look it up. It's just so difficult not to. I know I need to stop
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u/Talesfromthescript11 9d ago
I’m going through the exact same thing with my mom now. She started bleeding heavily two years ago and they attributed it to a fibroid and gave her a depo shot. It’s stopped the bleeding and she just went in for paps. Two years ago her biopsy and Pap smear came back normal. She’s been in excruciating pain since September of last year and after months of calling the doctor finally agreed to do a hysterectomy. When he was in there they found cancer and stopped the surgery. When she did her CT with gyn/onc they found small tumors in her lungs, a bone lesion which is what has been causing all of the pain, and multiple small tumors on her peritoneum. She had her first round of chemo today and starts radiation on Tuesday. We’re hoping for the best and that there’s enough tumor shrinkage for her doctor to do a radical hysterectomy in November. I’m just amazed at how often this is missed. I’ve considered getting a medical malpractice attorney but I’m not sure if it will even amount to anything. I’m wishing you and your mom all the best during this journey!
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u/AnyPumpkin2322 8d ago
Ugh I'm so so sorry you're going through this as well. It really is terrifying how much is missed in women's health
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u/miss_ophonia 8d ago
My mom had bleeding and pain for over a year at 74, and unbeknownst to me her doctors ignored her too. What is up with that??? She ended up in the ER twice within 2 weeks for massive, crime scene worthy bleeding. She needed a transfusion. The second visit, the attending OBGYN was the doc who ignored her. She happily asked my mom if she ever scheduled an appointment to be seen about it with her OB, and that's when she said "You are my OB. YOU scheduled me 6 months out and then rescheduled me out another 4 months." OMG that B blamed her office staff! I know now, I'll never go to a teaching hospital when it's my time (again) to face the big C.
She had a tumor the size of a softball. She had a radical hysterectomy and had a couple lymph nodes and some pelvic tissue removed. Her 1st chemo was a couple weeks ago, she's stage 3 with spread to her kidney. Be there for your mom. I'm just starting my journey as well and I'm terrified too. Let us know how her surgery goes please? I'm praying for you both. I hate this club we all belong to now.
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u/AnyPumpkin2322 8d ago
Wow I'm so sorry. I'm happy she is getting treated these obs are ruthless and need to be held accountable. I'll pray for your mom and I will update!!
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u/estodobueno 9d ago
I had that pain before the surgery. It almost felt like period cramps but worse. It's totally gone after my hysterectomy in June.
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u/Ready-Sherbet-2741 9d ago
Thanks for saying this. I am waiting for surgery and the pelvic pain is awful.
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u/AnyPumpkin2322 9d ago
They say her pain is from the tumor pressing on her kidney and bladder at first it was just severe cramps or like contractions from child birth now it's just unbearable
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u/Rich-Personality-194 9d ago
It makes me so angry to hear how often doctors mess up the diagnosis. It's not that complicated! If someone is having post menopausal bleeding then the first step should be scans and then a biopsy.
I'm so sorry OP. I hope the surgery goes well. I wish you more years with your Mom. We all deserve a lot more years with our Moms.
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u/AnyPumpkin2322 9d ago
I know she is a complete incompetent doctor and is def being reported. But thank you very much
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u/Scary-Height-5943 5d ago
I am so incredibly sorry that your mom's doctor ignored bleeding for two years. This is a lawsuit for sure. I am so sorry. If they haven't done surgery yet...then perhaps her stage can change. There is a lot of advancement of treatment for uterine cancer. I really hope that they can take this out. Have they done scans?
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u/sanityjanity 10d ago
I'm enraged that her doctor ignored bleeding and pain, and told a woman in her 60s that this was normal. That's extra moronic.
I hope that they are able to complete the hysterectomy, as it will probably end the bleeding, and hopefully the pain as well.
A lot of us do much better after the surgery. Don't believe too much of what you read online, but be prepared to attend her oncology appointments, and ask lots of questions