My mother, 69, is recently referred to an oncologist with a diagnosis of uterine cancer. We’re hoping it’s confined to her uterus, but we won’t know more until some more tests are run. We’re pretty sure it’s not more than about a year old because she has had recurring issues with her uterus after menopause and has had a number of D&Cs(5 or so) to remove what is essentially endometriosis. Each time they’ve run a pathology report but they came back clean and they chalked it up to excessive estrogen production due to her being obese.
So, my family finds itself with a matron who has been diagnosed with cancer after her latest D&C. This is weird for us because we have virtually no history of cancer in my family. Neither on my mother or father’s side. My maternal grandfather, a heavy smoker, died of lung cancer which had metastasized to his brain, but he went undiagnosed, and largely asymptomatic until two weeks before he died. The only people I know who have had to deal with cancer through diagnosis, treatment, and afterward were in-laws. So I’m coming from a position of near complete ignorance here. I don’t even know what I don’t know, but mom has asked me to come to her first appointment on Thursday morning with the oncologist and we’re hoping to be able to understand what we’re told and be engaged in the health care process. So I’m asking, what should we know for a first appointment, and what should we be asking the oncologist? This kind of blindsided us all and the range of reactions among my siblings has been from “OMG, mom’s got CANCER” to “STFU, it’s almost certainly nothing, they’ll do a hysterectomy and she’ll be fine.”
Any references you can recommend? We’re not the first to go through this sort of thing of course, so if we can keep from re-inventing the wheel I think we’ll be better off.
Best advice my mom got when she was going through the same thing: if you don’t understand what the oncologist is saying, ask him/her to clarify things until you do. I think it’s typical (and understandable) for specialists to use terms and references that aren’t always picked up by the layman.
You’re doing the right thing by her, by going along with her. We always made sure someone went along with mom. The whole process is so overwhelming–it was too much to have her go through that alone.
I recently shepherded my mother (age 65) through a mastectomy. Fortunately it got all the in situ cancer in the breast, and her lymph nodes were all clear, so she’s done with treatment and didn’t even need to see an oncologist. But yeah, we went through the gamut too.
My best advice is to make sure you send the most level-headed sib(s) along with her for her appointments/treatments/surgeries/whatever (and it sounds like that’s you.). The last thing she needs is for her “support” person to start freaking out. In my mother’s case, I was the best person for that role because (1) I’ve been through some minor breast stuff and was already somewhat familiar with what might happen based on my own research, and (2) my sister is a total flake who cannot handle any kind of medical information much less bad news. I like to think I kept my mom on an even keel by being a voice of reason when she started to flip out, and keeping things lighthearted, upbeat, and POSITIVE. Don’t borrow trouble; deal with the information as it comes, rather than worrying yourself sick over possibilities that may never happen.
You might ask if the doctor can recommend any online resources for the best information. My mom’s breast surgeon gave her several to check out.
Good luck to your mom. I hope the “STFU, she’ll have a hysterectomy and be fine” folks are spot on.
Write down any questions that occur to you. Take this list with you and at the end of the visit make sure every question has been addressed. Make notes during the consultation. If, when you get home you find there is something you do not understand, call back and ask your question. Best of luck to your Mom!
I would suggest strongly that you keep a notebook with notes on all her appointments. She may have quite a few, not just with the oncologist but with the general surgeon with maybe an endocrinologist thrown in. It’s hard to remember everything they tell you and having all the notes in one place is just great. If she does have surgery, make notes of what the surgeon tells you - all the details you can get.
All of this - plus the excellent advice other posters have given - will help you make informed decisions and support your mom.
I hope it’s a short notebook and that she sails through this!
I had the same diagnosis 3 years ago. A hysterectomy that caught it all, with no chemo or radiation. All I have to do is see a gynecologist (twice a year for another 2 years then annually) and get blood tests.
I would suggest that you see a gynecologic oncologist, if possible. Maybe overkill, but she’s the only mom you have. In any case, fingers crossed that it is easily removed and recovery is quick.
Thanks for the well-wishes everyone. Given the current state of medical technology her odds are probably very good, but we’ll have to wait to see. The dr is a gynecologic oncologist and was recommended by her regular gynecologist. She seems to have an impressive resume, but I really have no good way to evaluate things like these awards or publications.
The idea of documenting what happened in the appointment and keeping a journal of questions and such is a very good one. I did something similar when she had her gall bladder removed and it was very helpful both for us in the hospital with her and many of my siblings(there are eight of us). A good paper trail will keep her from having to answer the same questions over and over and keep everyone on the same page so they don’t suggest something we’ve already tried or beat their heads in frustration that we aren’t doing X when we’ve already investigated that option and declined it due to reason Y. I’m one of the more level headed and rational ones of my siblings, not the most assertive(though I’m no milquetoast), but one of the most thoughtful and methodical, so having me with her will be a mixed bag.
I kept a journal when she was in the hospital for her gall bladder surgery a couple months ago(she had lap band and lost a bunch of weight, and then started falling apart it seems:(). I took some pictures of it and sent them to my wife, who transcribed them and emailed them out to everyone and that helped. I can see that the logistics of pulling together her support group and keeping us focused is going to be a challenge on top of the medical one.
Dangerosa, the American Cancer Society site looks great. Thank you for you and your sister’s recommendation.
Sandra Battye, I’m glad your experience came out so well for you! I’m hoping something similar for mom.
The appointment went well. It looks like she has type 2 endometrial adenocarcinoma. They’re re-reading the slides from her D&C last year because they think it may be older than the current medical history indicates. That would be bad news, because type 2 is more aggressive than type 1(although less so than type 3), and the older it is the more likely it has metastasized. So they’ve scheduled her for a full hysterectomy, including ovaries, fallopian tubes, and some lymph nodes from the surrounding area. The doctor is going to do a robotic surgery, and she’s apparently one of the top robotic surgeons for this type of procedure. She said she’s done about twenty with this level of complexity and about fifty robotic hysterectomies in overall. Two of my sisters and one of my nieces were there, so we’ll have five stories to reconcile and present to the family. Fortunately my sister asked, and was allowed, to record the session, so we can get everyone the same info instead of it turning into a game of telephone. The family get-together to celebrate the birth of our country by blowing up a small part of it will help too. We’ll be able to touch base with most of the rest of the family there.
Sorry this is late but my mom is currently experiencing a recurrence of endometrial cancer (this time in her lungs) and I’ve been going with her to her doctors’ appointments, and I just want to add my voice to those saying: 1) someone (steady-minded) should go with the patient to the oncologist, and 2) the patient and his/her companion should write down questions/concerns ahead of time so they don’t forget them.
My mom, I’ve found, desperately needs someone to go with her because she either acts weirdly goofy (very out of character for her) during the visit and tries to make a joke out of everything the doctor says, or even when she’s serious, she misses or misinterprets the doctors’ words. When I’m with her, I almost feel like she’s a very small child going to school for the first time and I’m the mom trying to get her to focus on the teacher and remember the rules of how to behave in school. I would never have guessed she would be like this, but I guess this is her way of coping with all the stress and bad news.
I’m also able to think of things to ask the doctor that just wouldn’t occur to my mom to ask (like, hey, she just had a CT scan 10 days ago – isn’t a chest X-ray and another CT scan today an awful lot of radiation for her to be exposed to?) because my mom is just, like, not science-minded at all and doesn’t even know what to ask.
I also want to say that my mom had a complete hysterectomy four years ago when she was first diagnosed with endometrial cancer (and started chemotherapy – a cocktail of three drugs – for simultaneous endometrial and breast cancer the following week), and she had a very easy and brief recovery period. I hear so many horror stories about hysterectomies taking months and months to recover from, so I just wanted to say that while that may be true for some people, it isn’t necessarily so.
Best of luck and good wishes to your mother and you!
Mom is normally a very level headed and kind person, but her nerves were showing at the appointment. She has had a poor experience with a recent gallbladder surgery she had there and had to go back in for an exploratory to find out why she was still having pain and complications from surgery. The endometriosis was discovered during the exploratory actually. But it wasn’t fun for her, and she spent a number of unexpected nights in the ER or in the hospital overall. It’s a very good hospital, but it is part of the University of Texas Southwestern Medical Center, so there are residents, fellows, and a few students around during each operation and doing rounds. She seemed to have her brain-mouth filter slightly disengaged because when we were talking to the oncologist(who will also be the surgeon doing her hysterectomy) she said, of the hospital we were currently in, and that the doctor practices at, “I love UT Southwest’s research, but their practice leaves something to be desired.” :eek: Did you really just do that mom? Really?
The doctor was very professional, and said that she will be there during the entire procedure, but there will be students and fellows present as well, and there may be times during the operation where a fellow will operate the robotic surgical apparatus under her supervision. Mom said she understood and was fine with that. I think it was a combination of nerves and her recent memories of her poor experience with her previous surgery and recovery that made her insult the hospital, and by extension the Dr.
We didn’t talk about mom’s health much at the gathering for the fourth, so we’ll probably need to start sending round emails to get the family all updated and in sync. Her next appointment is in about two weeks with a general doc to evaluate her for the upcoming major surgery. If her heart and lungs aren’t in good enough shape to hold up during the long procedure then we’ll have to go with another plan. We’re not sure what that would be yet, so we’re hoping she passes her exam. If all goes well during the pre-op evaluation, then she’s scheduled for her hysterectomy on the 22nd. About two weeks after that all the biopsies of the removed tissue an lymph nodes should be in and we can find out what stage she’s at and what the next steps will be.