Anxious
Hi, I’m new to this discussion board. I’m 72 years old and started having vaginal bleeding a week ago. I had a trans Vaginal ultrasound this week and referred to gynecologist/oncologist and saw her yesterday. Have a large mass in uterus with thick endometrial lining and enlarged cervix. Also have large mass on right ovary which doctor feels is a cyst. She was unable to do a biopsy in office because uterus was tilted downward due to weight of mass. I had had some pelvic pain and back pain for a few weeks before bleeding started. I am scheduled for complete hysterectomy on February 14. I asked doctor about waiting for 2 weeks and she said it was fine. Totally upset and anxious.
Comments
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Welcome Connie1950. Sorry to hear about your worries. It seems like your doctor is so on top of things. And surgery in two weeks is great. I waited 3 months just to get a biopsy done, and then a month for surgery. I was early stage after all the waiting. It is a scary time. The unknown is hard to deal with. I tried to keep myself busy and do read all the wonderful postings here about preparing for the surgery. I had robotic surgery but had puncture wounds and then an abdominal incision too, since my uterus was enlarged. I had a very easy recovery time. You might have an abdominal incision too, since you have a mass in your uterus. Try not to get ahead of yourself and I would just hope for the best at this point.
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Thank you so much for responding. Yes, my doctor did say that I would have an abdominal incision. I have been impressed with the speed of response from the doctors. My gyn/oncologist has a good reputation so I am happy that she is well respected. I asked her if she sees this very often and she said I was the 4th or 5th one she had seen that day! There is so much confusing information online so I am very glad to have found this discussion.
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I was concerned because the mass in the uterus was defined as large and suspicious for malignancy. I wasn’t sure if uterine cancer always includes a mass or if this is something even more ominous.
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There are no rules for this disease. I think you just have to wait and see. I am an RN and was VERY surprised by how many unknowns there are. We like to say we are a statistic of one. I had a mass on my ovary and it turned out to be a cyst. Have you had other imaging besides an US? US are the least accurate imaging. Some women have endometrial cancer as a thinner growth in the endometrium, and I don't know if that would be considered a mass. Mine was inside a polyp. So you just don't know until after the surgery. They will do biopsies right during surgery so they will have information for you when you wake up. It is VERY hard waiting. I made so many pillowcases while I was waiting. Kept. my mind busy.
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I’ve only had the ultrasound and a Transvaginal ultrasound. The radiologist report said “mass like lesion filling the endometrial canal measuring about 6.7 x 2.6 x 3.7 cm with internal vascular flow and small amount of surrounding fluid. Lesion is slightly hyperechoic with respect to myometrium.” Then the impression said suspicious for malignancy. I was expecting another scan but instead was scheduled for surgery. It is probably a blessing and a curse to be a RN because you understand what all this means. I know what you mean about staying busy…otherwise I would sit and Google all day and totally lose my mind. I’m single and no children and 2 of my best friends just died of cancer last year. Thanks again for your help and support.
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Hi, Connie, welcome from another Connie. I think everyone on here would agree that waiting for surgery is the most anxious time. Once you get past that, know what you’re dealing with and get a treatment plan if needed, it gets easier. Do you have support where you live? Definitely we can help here. I, too, am an RN, but I had never heard of the type of tumor I had. This board helped me so much when I came here nearly 11 years ago.
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Hi Connie! Thanks for your encouragement. It’s good to know that things will get easier because this waiting is very difficult. Wow, also good to hear that it has been 11 years for you! I’m not sure about local support groups but there probably are some because I live in an area with some excellent hospitals (Cleveland Clinic) and cancer clinics. I’m so glad I found this group. It really helps to discuss all this with people going through the same thing. I hope you are healthy and thriving!
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I also want to welcome you, Connie1950. I recall the waiting before hysterectomy like it was yesterday, and it was in 1999. Each day seemed like a month. But you're getting your surgery very quickly compared to many others. I'm also not a great fan of ultrasounds for sorting out what's going on in the uterus. Mine found "a hypoechoic myometrial mass anteriorly situated towards the left aspect of the lower uterine body compatible with a probably fibroid." When I had my hysterectomy, I had no fibroid, but the mass turned out to be the major site of my endometrial cancer.
After seeing that your mass was hyperechoic and mine was hypoechoic, I got curious and did a quick search. I saw mention of the fact that hypoechoic masses are more likely to be cancerous than hyperechoic. But surgery is really the only way to know for sure what's going on.
Hope time passes quickly for you and I wish you all the best!
MoeKay
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Hi feb11gal
Thank you so much for your warm welcome. Hope you are doing well after 2 years of dealing with this. I will definitely keep everyone posted on the outcome. Hoping for the best. Blessings and love to you also.
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Hi MoeKay
Thank you for your welcome and your warm wishes. It is so comforting to hear other women’s stories about their battle with this disease. Everyone has a little different situation but it is so amazing how everyone seems to be so open to share what they have gone through. More than one person has said that the ultrasound is not the best diagnostic tool. Thank you for explaining the difference between hypoechoic and hyperechoic. That gives me a little more hope.
Connie1950
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Welcome, Connie 1950!
This board is a wonderful place to get information, answers, and reassurances from real ladies, in real time, who have been where you are now. I’m so glad you found us.
I agree that it sounds like your doctor is doing the right things and I’m glad you are comfortable and confident with her! And waiting two weeks isn’t bad at all! Many of us have waited longer.
Yes, try to stay busy and try not to worry about things that haven’t happened yet. Please continue to let us know how you are doing!
Hugs,
A
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Hi thatblondegirl
Thank you for writing. I do agree this is a fantastic place to discuss what we go through with this disease. Reading through the discussions, it appears that you really have to be your own advocate. That’s why joining this group is so important. I’m comfortable with my doctor so far, but we’ll see how it goes. I am not very patient and tend to want answers right away and I sometimes think that we are just a number to them. Once I know the outcome, I will let you all know. Hope you are feeling well and happy.
Connie
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Hey Connie, I am sure there is so much being on your mind especially after losing two close friends. I'm sorry to hear that. Everyone already mentioned that waiting is the hardest part but good on you for getting in there and having a dr smart enough to get you in the hands of a gyn onc.
Dr Google often has old info so becareful of him! LOL. There are a lot of good threads on how to prepare for surgery and when you are home. This is a journey and the best is to take this one step at a time. Please let us know how it goes and if you have any questions.
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Hi NoTimeForCancer
Thank you so much for writing. Yes, my PCP got me into her office within 1 1/2 hours of the start of the bleeding, had the ultrasound appointment made within 2 days and then they made the appointment with the gyn/oncologist in a week. I’m so thankful because I read how some people have to wait a month or more or they have doctors that don’t seem to realize the urgency.
I read your story and am so happy that you have been NED for 10 years!! I’m so glad that I found this group and wonderful women like you. I will look at the threads about the surgery and home care and I so appreciate your offer to answer questions.
Thank you so much for your encouragement and advice.
Connie
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cmb had CSN post a thread at the top of the page entitled: Uterine Board Frequently Asked Questions (FAQ) and Other Information - Updated 4/12/2022.
There was a whole thread on newly diagnosed (dx), those preparing for surgery and tips from those who have gone through it. That particular "what do you wish someone had told you" link is below, but there are really good ones there on other topics.
https://csn.cancer.org/discussion/314593/what-do-you-wish-someone-had-told-you/p1
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Thanks NoTimeForCancer
I quickly read through the discussion you posted but it was late so I’m going to go back and read it again and write some things down. There is so much to know and so many questions to ask. My doctor didn’t suggest a CT scan or MRI. Is this unusual?
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Connie, there are so many factors that go in to decisions. I think I had a CT prior to surgery because the gyn onc wanted to see if there was anything else before the surgery. You can go through the thread and make a list of questions to call the office. It can be hard but you have to be your own advocate, and what we mean by that is not to be afraid to ask your questions. Offices are used to getting questions. Some of us have created a notebook with notes of questions or meetings we had with doctors and kept track of weight, temp, CA125 - it all. I still have mine and still keep notes in it.
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I contacted my doctor and during the pre surgery blood testing, they tested the CA125, CEA, and CA19-9 and I was told they all came back within normal limits. I asked if that was good and she said yes but still waiting on PAP result. I know these are some type of tumor markers in the blood, but what does it mean?
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Hi Connie, I hope you have been able to keep yourself busy. CA 125 is used mostly for ovarian cancer. It is not reliable for everyone with endometrial cancer. My doctor did not test mine. I agree with her logic. It can be elevated by any inflammation in the abdomen, so can cause anxiety for no reason. It is reliable for some of the women here.
I looked up the other two tests and the first one is for colon cancer mainly. So yay, you don't have that. And the other one is for pancreatic cancer, but can be false negative or positive, so doesn't seem useful to me.
You asked why your doctor only did US. You don't actually have a diagnosis of cancer yet, so maybe your insurance won't pay for an MRI or CT? I didn't have a CT until I was referred to the gyne oncologist, and her pathology department changed my diagnosis to high grade serous endometrial intraepithelial carcinoma, which was just a few days before my surgery.
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