Just got biopsy results — A little overwhelmed
Hi everyone. My name is Elyce, I’m 66, and I’m in Chicago. My gynecologist, who performed my hysteroscopy and D&C, just informed me two days ago that my biopsy results showed endometrial cancer. I had previously had an ultrasound which didn’t show anything in the muscle wall, so she’s pretty sure that it’s early stage. She was able to hook me up with the gynecological oncology department right away, so I have an appointment with that doctor a couple of days from now. Of course I know pretty much absolutely nothing right now, except for the fact that I’ll need to undergo a hysterectomy and that I won’t know staging, type, etc. until after that’s done.
I know that I have LOTS to learn and I’m hoping to be able to do that here through all your shared experiences. I have no doubt that I’ll keep discovering how little I actually know. I’m sure there’s a lot that I’m forgetting to include, but I’m still getting over the initial news and not feeling all that clear-headed. Anyway, I’m glad that this forum exists and I look forward (as much as I can) to both sharing and receiving all your knowledge and wisdom!
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Hi Elyce,
Here's a good place to start learning. https://www.sharecancersupport.org/uterine-cancer/
Scroll down to the box marked Special Uterine Cancer Bag from Bag It and SHARE, put in the code SHARE 2020 and order a a free bag with lots of information and a place to store information.
Best wishes,
Corby
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So sorry to read about your recent diagnosis but you have come to a good place. We are here to help as it is helpful to talk to women who have had the same experience, being told you have endometrial cancer. It is very scary to hear, and hard to wait. But, there is some hopeful news. There are different types of endometrial cancer. The endometrioid type is the most common by far. And it is most often early stage. And that most often needs no further treatment than the surgery. So don't get ahead of yourself. It is upsetting to have the surgery. There is lots of information here about dealing with the surgery. You don't have much information. Your gynecologist should be able to tell you what type of cell you have from the biopsy. Ask her. It will help you prepare. Read the posts at the beginning of the uterine page too. There is lots of helpful information. You can also click on names to read their stories. And you can ask any question.
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Thank you. I didn’t even know enough to ask about the different types when she called me, but the good news is that I’ll be seeing the gyne onc on Monday and he should be able to tell me as well because he should have access to the pathology since it’s all through the same large hospital network. Hopefully it’s early endometrioid with no need for chemo and also I’m hoping that the surgery can be totally robotic/laparoscopic. I’m all by myself, so shorter recovery time would be a whole lot more preferable.
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Elyce, definitely overwhelming, but I am happy to hear your gyn got you turned over to a gyn onc and you are going to get in so quickly. Waiting is the hardest part and there is lots of good information here with wonderful support.
I tried to click on the link in one of the topics that have been pinned to the top of the page and since it was giving me fits I just did a general search. What all the warriors have shared on tips for surgery (and recovery) could be found here: https://csn.cancer.org/discussion/320841/tips-for-surgery-and-after Certainly it is not the end all be all and we continually learn from all the new warriors as well.
Try to take a breath and ask any questions.
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Welcome, Elyce
i agree with all that my friends have written here! And you are so lucky to get into GYN/ ONC so soon. Hopefully all you’ll need is hysterectomy and be done! He won’t know until after you surgery. We’ve all been there. We’re here for you.
Prayers & hugs, A
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I just got back from the gyn onc. I did find out that it’s grade 1 and endometrioid, so I guess that’s good, although he did say that occasionally they discover that it increases to grade 2 because there might be some of those areas of samples that weren’t accessible prior to the hysterectomy. He is hoping that I won’t need anything in addition to surgery.
Anyway, he plans to do robotic/laparoscopic and the scheduling department will be calling me with my date, which will probably be in the next 2-3 weeks. And I was already given a printout of the pre- and post-op instructions and limitations, so I can start studying. (By the way, did you all know that they recommend increasing carb intake 3 days before surgery because it helps make healing easier? Sweet!!!)
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You have many reasons to believe that surgery will be all that is needed. I found the hysterectomy salpingooophorectomy very easy to recover from. If you know how you tolerate narcotic pain relief it will make your decisions about pain relief easier. The important thing is to be pain free enough to move. I am an RN and that is the most important part of recovery to me, barring complications. Do move according to their recommendations. You have had a rapid progression from biopsy to surgery which is great too. I waited 3 months to just get a biopsy after my episode of post menopausal bleeding. All the best!
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Can anyone please tell me what this addendum in my pathology report means… Immunohistochemical stains for the mismatch repair proteins MLH1, MSH2, MSH6 and PMS2 were performed (with appropriately positive and negative controls). The tumor cells demonstrate retained nuclear staining for all four proteins, indicating the tumor is MMR proficient (pMMR) and likely microsatellite stable.
MLH1 - EXPRESSED
MSH2 - EXPRESSED
MSH6 - EXPRESSED
PMS2 - EXPRESSED
P53 immunostain (with appropriately reactive control) shows wild-type P 53 expression.
The Ki-67 mitotic index is estimated at 50%.
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Here is a link to an article that talks about this. https://pathsocjournals.onlinelibrary.wiley.com/doi/10.1002/path.5608
P53 is a tumor suppressing gene that is associated with a higher grade carcinoma. And the Ki47 is a test that is commonly done on any cancer. Mine was 100%. I can't remember if high grade is micro satellite stable or not. This article is very scientific but you can skip the parts that aren't relevant to your questions.
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Hi again — I’m back! So my surgery is scheduled for this coming Thursday, 7/27. I did since find out that the cancer is Grade 1. My question is: If the grade is low, does it usually follow that the stage will likely be low as well, or not necessarily?
Just trying to gauge my expectations. Unfortunately I won’t know staging for at least 10 days afterwards.
Thanks!🤗
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Hi, Elyce - I hope your surgery goes well. You've learned a lot already and I'm sure are making preparations.
The stage doesn't necessarily follow the grade, although we hope you will have a low stage as well. You may find you don't really need a lot of help if you have things set up before you go. Generally they will tell you not to drive for some period of time, so take that into consideration. I had robotic surgery and my restriction was for a week.
Nobody told me to carb load ahead of time. That's one instruction I would have enjoyed. Keep us posted!
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I'm glad to hear it is grade 1. I think most of those require no treatment after surgery. So good luck on your surgery recovery. Keep in touch!
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I just found this great article on those mutations. And easy to read
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I have another question that I should have thought to ask the gyn onc at the time.
He said that there would be five laparoscopic holes in line with my navel and then five more under my rib cage. I forgot to ask if both sets were on the same side or if one set was on the right and the other on the left. What’s the answer?
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That is quite a few. I had 5 and they were across my abdomen about the level of my umbilicus, one was a little above. I just wonder about the 5 under your rib cage. I like the Cleveland Clinic website. https://my.clevelandclinic.org/health/treatments/4852-hysterectomy
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Thanks! Hmm, maybe I misunderstood? Maybe he meant a total of five located both in line with my navel and under my rib cage? That would definitely be an improvement. It does seem remarkable that all my female organs (uterus, ovaries, fallopian tubes and cervix) can be removed solely through those five holes!
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That is different from what I had as well. I had five total, one just under the navel and two on each side. Two were just slightly lower than the navel one (which was largest) and two were lower.
You might ask to be sure, but generally the uterus is removed through the vagina. The incisions in the abdomen are for inserting instruments. Especially where cancer is involved, they do not want to cut the uterus due to the risk of releasing cancer cells.
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