Recent Endometrial Adenocarcinoma Grade 1 diagnosis
Alright here goes…found out two weeks ago that I have endometrial cancer. It was diagnosed from an endometrial biopsy I had done in preparation for a hysterectomy to remove my uterus because of fibroids. I have at least 7 fibroids, two of them measuring 6-7cm. Also a complex cyst on my right ovary. And since I am talking about tumors also recently discovered a benign 6cm lump in my breast.
I was fortunate to get to see a gynecological oncologist about a week after my diagnosis and am scheduled for a total hysterectomy and lymphadenectomy on Nov 9. Happy 50th Birthday to me. Even though major surgery isn’t what I hoped for this milestone birthday I’ll be happy to remove the source of so much pain and suffering.
I have so many questions/thoughts running through my mind and hope others can share their experience, thoughts, perspectives.
- I am experiencing constant pelvic pain, has this happened to others? It goes away some with NSAIDS but the NSAIDS really mess my belly up. I am sure it is my anxiety but I am freaking out that perhaps the cancer has spread.
- My Doctor is going to use Davinci for part of the hysterectomy and lymphadenectomy but due to size of my fibroids and uterus (almost 15cm) he will remove my uterus via an abdominal incision. Has anyone had the same or similar procedure? What was your recovery time?
- Should I be getting the CA 125 blood test? Genetic testing? My Doctor didn’t indicate that we would be doing either? I am wondering what caused the cancer? My other tumors and cysts. I am a little overweight and thought perhaps it was due to an estrogen imbalance but my Doctor didn’t think that was the cause. Again I realize I may never know but discovering the fibroids, breast tumor, complex ovarian cyst and now endometrial cancer has me thinking something is causing this.
Thank you for reading and I am glad to have this group to share all of this with.
Welcome Humingbrd7. I'm sorry you are having to deal with all of this. It is a very upsetting time but it seems like there is good news for you. You have type 1 cancer cells. That would be endometrioid. It is the most common type of endometrial cancer, and most often it is early stage and often requires no further treatment other than surgery. This is. most common. Some cases are further along at surgery though, so that is what is worrying. Just remember it is more likely to need no further treatment.
I had an abdominal incision and the scope punctures also. I had no problems with recovery. I was surprised how quickly I felt better. There are discussions here about surgery. CMB has made excellent links in the first posts on this discussion board. My doctor didn't tell me beforehand if I would also have the abdominal incision but I had large fibroids too.
I think large fibroids can cause abdominal discomfort. AND NSAIDS can cause abdominal pain too. Does your doctor have any suggestions for pain relief other than NSAIDS? Tylenol is not an NSAID.
I did not have a CA 125. It is most accurate for ovarian cancer and can go up for other abdominal inflammation. And since you have type 1 cancer cells, and no other treatment may be needed after your surgery, maybe the surgeon will wait to do genetic testing. They will biopsy your tissue right during surgery to determine if genetic testing is needed. You can click on anyones name to read their story, if they have created one. I have a blog of my story. My path report was sent to the Gyne oncologist and my type was upgraded to 2. I was initially 1. But after surgery there was no other cancer cells found anywhere. We are all a statistic of one.0
Momschooling Member Posts: 58 Member
My situation was similar to yours (had my surgery at age 48, 9 months ago). I was in pain, numerous fibroids were discovered, then I found out I had thick lining, and a biopsy was done. I also was in a lot of pelvic pain (that lead me to the doctor). I did not have any extra tests done, they say with low grade and later we discovered stage 1, nothing else is needed except surgery and I kept my ovaries so thankfully I feel like myself, no instant menopause. Some pain did improve months after surgery, (better than pre hysterectomy) but some did not go away, and the PT thinks I have muscles that are too tight and can't relax from the fibroids and then the surgery. I am in physical therapy for my pelvic floor, so far it hasn't helped a lot but has made me more aware of my problems and the exercises are good. If this doesn't solve the problem my gyno is going to refer me to a pelvic floor specialist. BTW I had a vaginal attempt surgery, but my uterus was too large from fibroids, so I have a bikini style cut in addition to the laparoscopy ones. Good luck, I know it sounds scary but it does get better. I got a lot of help through the Hystersisters website, they really have everything you need to know for the surgery.0
Thank you Forherself and Momschooling. I was poking around various threads to see if anyone had a similar experience and reading yours helped me relax a bit about it all. I have cut back on the acetaminophen and ibuprofen and my stomach feels better. Just trying my best to take it easy and not push myself to hard before the surgery, it helps with the pain.1
Momschooling Member Posts: 58 Member
I had at one point really weird pain (kind of fluttering sensation in my stomach) then I realized it was anxiety and after I knew that it suddenly went away. It is extremely draining waiting for surgery, emotionally it is a relief afterwards.0
Chicklet66 Member Posts: 1 *
Howdy Hum! I'm a 56 y/o RN. My radical hysterectomy with lymphadenectomy was mid-June. No pelvic pain/fibroids here... just a very little bit of postmenopausal bleeding. It took months to get an appt with my gyn. I was negative for HPV and, after biopsy, received the same diagnosis as you. I was referred to a gyn/oncologist and it seemed everything happened at lightening speed after that.
I knew from working on a Med/Surg unit that most robotic surgeries are uncomplicated - with just an overnight stay - and many are done outpatient. Unfortunately, that was NOT my experience. This IS a major surgery and things sometimes don't go as planned. Complications in the O.R. left me on a ventilator for two days, and my hospital stay lasted much longer than antipated.
Due to deep (70%) myometrial invasion and Lymph Vascular Space Invasion, I required brachytherapy (which was supposed to start 6 wks post-op). On exam, I had some bleeding at the vaginal cuff. This persisted and delayed my radiation therapy by a couple months. While waiting, every two weeks I received nerve blocks at a pain clinic - for a nerve bundle that got trapped in my abdominal fascia during surgery (kept me from being able to stand upright, left a big indentation in my left side, and exacerbated existing hip and back problems). I spent weeks in PT, where the fascia was manually pried off my abdominal wall (not fun). Eventually, I received three brachytherapy sessions (awkward, but painless).
CA-125 level was drawn at my first post-op visit. As I am considered High Intermediate risk for recurrence, these levels will be drawn every 3 months, for the first two years.
A little more than four months after surgery, I was finally able to return to work. Despite my healthcare background, I have a lot of anxiety about the treatment delays and what that ultimately might mean for my prognosis. I hope my story doesn't keep you awake at night! I was an unlucky exception. This is my very first post... and it's a little cathartic to share.
I wish you health, happiness and a very Happy Birthday! Please continue to reach out with questions and concerns. I look forward to hearing about your journey ❤️0
Hummingbird, the surgery is right around the corner so hang in there. I am sure they have given instructions on how to prepare and what you should and shouldn't take prior to. Please let us know how you are doing during the recovery when you are up to it. So glad to hear you are working with a gynecologic oncologist. Hugs dear.0
A new diagnosis is always a shock. While vaginal bleeding is the most common first sign of uterine cancer, pelvic pain is possible too. But I suspect that a lot of your pain is due to the fibroids and the ovarian complex cyst. Hopefully the pain you’re experiencing will go away once you have surgery and those are removed.
As Forherself commented, some women here have had both abdominal incisions and the scope punctures. For most of the women here, surgery has gone relatively smoothly, although some like Chicklet66 have developed complications. The discussion at https://csn.cancer.org/discussion/320841/tips-for-surgery-and-after/p1 may be helpful for now.0
I’m sorry to read that you’ve had such a difficult experience so far. You're not the first health care professional here who has found this whole experience to be quite different than expected, especially when things go amiss. But I’m sure your knowledge helped you deal with the after effects and further treatments much better than some of us for whom this is/was all new territory.
While my CA125 did go down after surgery and has stayed down, it was still well within the “normal” range, even before surgery. So mine only gets checked every couple of years or so. But other women here have found it does correlate to their initial diagnosis and possible recurrences later.
I hope you continue to feel better and that this period of “watchful waiting” goes smoothly.0
Thank you so much for sharing your experience. I know posting about ourselves may not seem natural but reading your story helps me realize I can make it through whatever happens. I am hoping your CA-125 tests come back with low numbers and your ordeal is over.0
Hi. I was diagnosed with grade 1 endometrial cancer in November 2022 following postmenopausal spotting. I had a total hysterectomy on December 20. My second major surgery of the year as I had a hernia repair in April, and my second cancer diagnosis of the year as I had a basal cell carcinoma diagnosed in June and removed in August. Pathology showed invasion of the tumor less than halfway through the endometrium and no spread to cervix, tubes, ovaries or lymph nodes, so I was staged as 1a. Then, this week, I found out that the pelvic washings done at the time of the surgery showed endometrial cancer cells, so now I'm scheduled for a CT scan next week to find the metastasis. It never even occurred to me that I could be staged as 1a and still have metastasis.0
Welcome Emmy 1201. I'm sorry to hear about your diagnosis. Can you tell us what grade or type of cancer cells you had? It makes a difference to your 1A stage prognosis. I have read that pelvic washings do not change stage or prognosis. Positive pelvic washings do not necessarily mean you have metastases. I recently read an article that one of the mutations on cancer cells is the gene that controls how cells stick together. I am thinking you had low grade cancer because they didn't do scans before surgery. So hopefully that is the case. I hope that helps.0
It was grade 1 endometrioid adenocarcinoma, but the tumor size was 4.2 cm and I know the best prognosis is for a tumor of less than 2 cm. My doctor said the findings on the pelvic washings didn't change my stage, but she also said "this worries me" 3 or 4 times during our conversation, which worries me. The pathology report on the pelvic washings stated a diagnosis of metastatic endometrial cancer. I will know more after the CT scan and my follow-up with my doctor, but it's still scary.0
Yes all of this is scary. I was 1A serous with no malignancy in the hysterectomy specimen. They don't know if my stage needs treatment or not. I chose no treatment and that was 4 1/2 years ago. I was scared for quite a while. But there is hope. We are all a statistic of one. Good thoughts to you and clear scans!1
Chicklet66 - I apologize for not replying sooner! Thank you for sharing your story, and I think you demonstrate that we are all different. Wow. Just so you know, 10 years and trying to find a new dr to follow me after a move - I still insist on both the CA125 and the pap test. It gets easier but we all understand the anxiety that goes with it. It is completely understandable.0
Emmy, I apologize if you posted something on another thread, I still struggle with the new site and don't feel I can follow people as I once used to. Did you have the CT and follow up yet?1
No worries. I had the CT scan last week, but just had my follow-up yesterday. The CT scan didn't show anything, so I will be having surveillance checks every 3 months for the first 2 years, but she didn't recommend any further testing or treatment. She doesn't understand why the pelvic washings were strongly positive for metastatic cancer, but she presented me at Tumor Board and they didn't recommend anything besides the CT scan. It still worries me a bit, but they certainly know more than I do.0
That is great news! Your 'scan-xiety' is completely understandable. Even now my blood draw always has me on edge - but follow ups do get easier as time goes by. Keep on your schedule, maybe ask what exactly types of symptoms you should be looking for and try to go out and do things.0
Emmy clear scans are a reason for relief. We don't seem to ever get over the worry, but clear scans are good news. I have only read that positive pelvic washings do not change the treatment or staging. It just makes us worry. So I understand your anxiety. I hope you can join the NED's here~.0
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