Recently diagnosed with endometrial adenocarcinoma and possible endocervical primary
Biopsy taken from hysterectomy procedure results confirmed cancer diagnosis. I am being referred to oncologist. I was told by gynecologist that wait times may be long for first apt. And thereafter for a hysterectomy (back log from staffing shortages due to Jan. And Feb. 2022 covid). After receiving the diagnosis the idea of waiting months before treatment is my biggest concern as I am worried having this cancer spread and making it harder to treat. How can I best advocate as a patient to receive treatment as soon as possible. Are there options/actions I should take? Thank you.
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csupport,
I had the same problem, but pre-Covid. The 1st GO I saw, whom I disliked immediately as a doctor, also would not schedule me, even though I was dx with serous, not staged. It was "we'll call you". When? "We don't know". My husband started "dialing for GO doctors". We lived in the Chicago area at the time so he just started calling GO. He also called Mayo, Rochester, who immediately scheduled me, we were so happy. It was 6 hours away but they are one of the best and their process for new patients was incredible. Once they accepted me as a patient they did all of the legwork, scheduling me for every test I needed, surgery, etc. All we did was send my records and show up. No calling for this and that or begging for an appointment. It was like a miracle compared to the horrible experience I had with my gyne and 1st GO. So if you live near one of the large NCCN cancer centers, I would try there even if you have to travel a bit. I had the opted to have all of my treatment at Mayo because of their seamless scheduling, excellent treatment and reputation. Oh, the 1st GO that I fired? They called me two months later to ask if I was ready for surgery! I was already having chemo by that time! You can also opt to have your surgery at one place and treatment closer to home.
Denise
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So sorry to read about your diagnosis, but we have been there too. It is hard time right now. I agree with Denise, get on the phone and call. Know what kind of insurance you have. You should not have to wait too long. I did have to wait a month when referred to a University Medical Center but then had my surgery in two weeks from first appointment.
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Thank you for sharing your experiences with me. This is just the information I needed to hear today. I can now take a pro active roll in getting scheduled somewhere- I still have not heard from the oncologist that my gynecologist referred me to. I will let that play out but in the meantime I have placed a call in with Dana Farber Cancer Institute and they were great over the phone. They will be having me talk with a new patient representative who can start the paperwork and work with me to learn about insurance (and how that will work with my plan since I would be coming from a different state) and setting up appointment. I will learn more when I have that conversation but at least it is getting the ball moving forward and I will have options. Thank you!!
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csupport, I remember when the gyn's office gave me the date to meet the gyn onc they immediately added, "but as the patient you should call and see if they can get you in earlier". So glad to hear you already started by reaching out to DF.
Please remember, you want to be working with a gynecologic oncologist here. I didn't know that and was just lucky I had a great gyn office. You are ahead of the game by looking to see how you can help yourself now.
Take a breath, we all know it is very overwhelming right now. Hugs.
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Thank you for the advice & kind words. I appreciate your reminder to take a breath. I just finished my morning routine news reading with a cup of coffee before work and one article had this lovely thought… “If you’ve got a nagging thought that won’t go away, just picture a cloud. Visualize that nagging thought being attached to the cloud. Now watch it float away. What’s left behind is a clear blue sky.
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I was as proactive as I could be to get in to see an oncologist. I took the first available apt. which took 2 weeks. I met with oncologist at Dana Farber Cancer Inst. I was feeling happy to be on my way to doing something about getting rid of this cancer. But then the next day I called the surgery coordinator the to schedule my surgery and the first date was another 4 weeks to wait. I teared up and requested nicely to please put me on a wait list if there was a cancellation. I felt so low after the call. I think that was the first time it really hit me that I had cancer and I felt powerless. I was in a fog most of the day. Then as evening approached I got a call to say they were able to move my surgery up a week-- I was grateful. So now I have 3 weeks for surgery but have to admit it seems like eternity-- I don't like to having all this time to think about it and not be able yo do anything about it. Just trying to eat well and get some good walks in with my husband and dog who always make me smile.
If anyone has advice on what to do after hysterectomy to get rid of the gas please share. When I had laparoscopy surgery for endometriosis years ago after surgery I experienced a very frightening experience when the gas seemed to be trapped by my heart/ribs. Felt like knives sticking into me and I couldn't move a muscle without out the pain -- happened in the middle of night.
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I had my episode of bleeding in Dec 2017. I had an US which showed several things possibly wrong. I called to get an appointment with a gynecologist for a biopsy. Since I never had children, I didn't have one. I had to wait two months to get a biopsy. Then it was a month before I saw a gynoncologist. Then two weeks for surgery on July 16. I had serous endometrial intraepithelial carcinoma. And after all that time, there was still no malignancy in all my biopsies from surgery. Please don't wear yourself out worrying about the wait. You have done everything you can.
I would mention your previous problem with gas to the surgeon. And the anesthesiologist. Sounds like they didn't get out all the air in your previous surgery.
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We have all been there. It is why I stay on this board. I received comfort from other women here too. Hang in there!
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Hey, csupport!
I’m so glad you found our board and have received some great advice.
My story is one of a big waiting game and fight for treatment! I think they don’t always run into women who are persistent and big on advocating for themselves. Keep trying!
I had laparoscopic surgery for endometriosis about a million years ago (early 80’s!) and felt like a 300lb man was sitting on my shoulders for a couple of days. Awful! But with my 2 surgeries for my cancer I didn’t experience any problems. So, there’s hope for that!
Keep us posted. We’re here!
❤️, A
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Thank you, thatblondegirl. Great to hear all went well with your surgeries. It is very kind of you to offer encouragement to someone like me who is new to this. I will definitely try to look at things with a glass half full mentality 😊 It does bring comfort having this group to turn to 💟
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Dear csupport,
I’m repaying kindnesses afforded to me when I was in your shoes! This board has always been an enormous support and help to me. Someday you’ll return to help others yourself!
If you click on our names you can read our stories on our profiles. And reading old threads will give you loads of good information! (….please don’t comment/post on them…the really ancient ones😊)
Many, many of us here have had experiences pushing for treatment and it does seem that these GO offices don’t get in too big a hurry with endometriod adenocarcinoma because of it’s tendency to glow more slowly. I also decided that as a Stage II, I was less of a concern than the III’s and IV’s.
We’ll help you through this!
❤️, A
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csupport, scanning quickly I wasn't sure if you got a reply on the what to do about the gas pain. GasX. I suggest having it on hand prior to surgery and not someone running around to get it for you. This might be covered in the tips that cmb has posted at the top, but I just haven't been in there for awhile. A guy who used to work for me had prostate cancer surgery, and he was in so much pain he reached out for advice with that pain. He was grateful to hear something simple had helped.
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That is a good idea, thank you! When I had my visit with the oncologist I did ask her about what to do (referencing the gas pain I had years ago after my Laproscopy surgery) and she just said to take the meds (narcotics). So I was hoping to get additional advice from others. I heard walking helps to (little bit every once in a while) and sitting up. I have a call pre op with a nurse so will also ask her. But hearing from others who have been through it and their advice is really a big help.Thx again!!!
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