Abnormal biopsy and anxiously waiting - update for appt #2
Last update until the results are in. This morning I had my hysteroscopy, polypectomy, colposcopy and biopsies followed by the clean sweep of the entire lining. He took pictures and shared them with us, looks like an alien atmosphere, couldn't really understand it but he said there is a lesion next to the polyp and then the polyp, and I think another mass that was a fibroid? I was still a little loopy and didn't catch it all perfectly about the other one. The cervical tests were because they haven't been able to get a pap smear on me due to always having blood involved, and the ECC that was done earlier also came back as unreadable. He didn't seem to think it was any issue other than some inflammation but he took those samples and took a look at it again. The more concerning area is the lesion and the polyp, so will wait and see. A week or two, just try to stay busy. Definitely sore and feeling it tonight but they sent me home with Tylenol and Motrin so hopefully will not get too painful. I'm at least somewhat assured that if it is cancer, it is unlikely to have spread, because they were working up a few things at the same time I have had a pelvic ultrasound, abdominal ultrasound, neck ultrasound, lots of blood work, colonoscopy and endoscopy, all of which came back good/ok. One pre cancerous polyp in the colonscopy that he removed and it was on the small side. Told my husband I'm exceeding grateful that those tests all preceeded this. I did have a thyroid nodule, likely benign, had none of the risk factors for being anything else. Heptatic liver cyst still looks like a simple liver cyst. Did have what they belive is non alcohol fatty liver disease so having more tests for that and waiting on results, and a high ANA, so seeing a rheumatoligist in January (long wait!), but none of the tests identified any type of suspicious masses that implied cancer.
Thinking of all of you battling this disease, I know from reading some of you have a much more serious disease and a much bigger hurdle and sadly seen the posts regarding those that lost their lives to this disease. My heart goes out to all of you!
************** update for pre-op consult below**************
Just an update, had my pre-op consult this morning and it went much better than I thought it would. I was really worried I'd go in and the doctor would downplay the results, refuse to provide any foward direction, but got the exact opposite. He was very clear and actually raised his eyebrows at what the doctor said on the call last week, which was hyperplasia. He said you have EIN and the purpose of Wednesday's procedure is for him to go in, it's a hysterscopy, so he will take a good look, do specific biopsies on anything he sees as concerning, will biopsy my cervix since I've had a string of unsats due to blood interferring with their ability to view the samples, and then he will do a clean sweep of the lining and he will be taking the polyp. He said Wednesday's goal is to see if there is detectable cancer vs. precancer, but regardless he wants me to be uterus free by the end of December. So I feel reassured but nervous regarding the hysterectomy. There is one gyn onc in our area but he said while he hasn't had many interactions, she is the doctor they send all the patients too and he has heard nothing but good things so that was also good to hear. He said the results should take a week or two but he is going to ask them to expidite them, but it's the holidays so will just hope it's close to a week than two. Appreciate all the insights provided.
********original post below************
Hello everyone, I had a biopsy done during an SIS procedure a couple of weeks ago. At the time the doctor said she'd request they get me scheduled for a polyp removal and I didn't think much about it. I've been dealing with issues for over a year and last summer a biopsy was normal and all they found was a fibroid. This fall they found a 12 mm stripe, fibroid and a fibroid or polyp which is what prodded them into offering me the SIS procedure. I've felt very unwell in my pelvic area so I said yes please to ease my worry.
They wound up calling and scheduling my polyp removal pre-op appointment on Dec. 1 about a week ago. Then this Wednesday the doctor called and said my biopsy results were abnormal and indicated hyperplasia and she had scheduled me for a pre-op this Monday and a D&C this coming Wednesday. The speed at which she did this worried me. I got my pathology report from my chart on Friday and the results are not great I think (see below). It mentions an expert consultation but the only other document for this pathology says results are unavailable and to contact doctor. I googled (I know, the worst thing to do) and cribriform seems to be indicative of cancer. I am turning into a ball of knotted worry. I haven't shared this with anyone except my husband and I hate to worry him but he is going with me on Monday and he knew of course that I've been having issues and pushed me to go back to the doctor this fall.
My symptoms have been abnormal bleeding, bloating, discomfort and pelvic pain. Because of the abnormal bleeding they haven't been able to perform a pap but I had a colpscopy that looked good, but her attempt at an ECC was unreadable as well. Ironic that my bleeding has actually become lighter and less frequent but I mentioned to the doctor that the consistency and appearance was worrying me because it's sometimes watery/streaked, sometimes like a clump of tissue, sometimes looks like a fresh wound bright red. It just has really made me unsettled. I'm 49, so when this started they thought perimenopause, then the firbroid, and I didn't follow up again for over a year and it was the pain, bloating that drove me back for help.
Any words of advice are welcomed.
"Sections show background weakly proliferative endometrium with areas of metaplastic glands (eosinophilic, mucinous and tubal) which exhibit crowding and complex architecture, including cribriforming. This raises the concern for hyperplasia vs. endometrial intraepithelial neoplasia (EIN). To further characterize these areas, this case has been sent for expert consultation, the results of which will be reported separately. "
Comments
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dear kodiak, it sounds like
dear kodiak, it sounds like you have been listening to your body and demanding some answers so I want to congratulate you for that!!! Once the D&C is completed I suspect they will get a better idea - and if necessary - have you work with a gynecologic oncologist to determine what is needed - and if they don't - ASK FOR ONE. As you are finding out, waiting is the hardest part in any diagnostic testing, but try to take a breath and please let us know how everything goes.
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Welcome, kodiak_bear
We are here to support you through this diagnostic phase. I know it can be so hard to talk yourself down off the cliff. but please do try. It's great that your doctor is on the ball and is jumping on getting the D&C done. Try to be pleased that there is an opening in the schedule to get this done early instead of perceiving it as an indicator of certain news. You simply cannot know what the situation is until the D&C is completed and the pathology comes back. You should know something concrete soon. And we here can be wonderfully supportive of your emotions and certainly there will be information readily shared if your results come back and indicate something more needs to be considered. You don't need me to tell you the obvious: what there is there to be analyzed and perhaps diagnosed already exists and you can't change that. Worrying won't make a bit of difference. So please just try to be easy on yourself and honor your efforts to get some answers. Surround yourself with whatever brings you peace and pleasure for the next few weeks. Certainly, share what's on your mind, including your fears (rational or otherwise!), with your husband and/or others in your life to whom you go for a caring shoulder to lean on. Keeping a swirling mess of "what ifs" in your mind all alone is not healthy for you. You are in the process of getting answers and that's a good thing. We will await your results with you, and call on us anytime you need to. Best wishes, Oldbeauty.
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Welcome, Kodiak
The waiting is the hardest part. Do whatever you can to ease your stress,and you know what works best for yourself. Whatever comes up for you, we have a lot of women here with a host of issues, and we've got a great crowdsourcing of knowledge and experience. Well done finding your way here. Just take things one step at a time if you can.
Deb 2
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Thank you, I was looking up
Thank you, I was looking up what specialists are in network near me and there were zero for GYN ONC. There is one out of network, which they will allow in that situation but I'd like more options so I may be travelling for this care and it helps to hear another voice saying what I got the strong feeling is that I need to see that type of specialist next. We are retired military and our military hopsital here does not have those specialists so I hope to find out what is the next step after the D&C. I wish I'd asked for all of this last summer but last summer I wasn't having the pain, just the bleeding issues.
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This is true, and I think
This is true, and I think normally I would be calmer but I submitted an application for a new job literally two days before I got the call and they reached out to me two days after hearing from the doctor to schedule an interview. I am currently employed, it's a good position, but we had some change in management that has made the environment less enjoyable and we lost our ability to telework and be flexible so this new position has those options. At least I do have a good job but I don't know how to proceed with this other position. I guess at a minimum I won't have to figure it out until I get an offer, might not even get the job so it won't be a concern. So I'm following through on the interview Tuesday but I really wish I'd gotten this news just one week earlier. I wouldn't have applied.
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Thank you! I have really
Thank you! I have really learned the importance of finding a good support group and I spent hours last night reading through the posts. Some of it is inspiring, some heartbreaking, but I knew this was what I needed and was looking for.
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It's an opportunity!
Well, Kodiak_bear, look at it as something to occupy your mind. No reason why you can't do your due diligence prep for the interview. It may help you feel more in control right now, and it never hurts to polish your interviewing skills. And, no reason to stop answering ads or otherwise conducting a job search.
And you are correct. If surgery is recommended you must get yourself a gynecological oncologist. Do not let a OB GYN do more than the D&C. Once that pathology is complete, if you have to go on, your current doctor most likely will refer you on. So, if it makes you feel more in command, contact your insurance and find out how to get the specialist you may need on the same terms as an in-network provider.
And most importantly, try to enjoy the holiday this week. Get some rest, get outdoors if weather permits and enjoy the fresh air and holiday cheer.
Best wishes, Oldbeauty
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I appreciate your advice. I
I appreciate your advice. I definitely need to do some preparing for the interview because I want to do my best so all options are there. I am actually hosting the family for Thanksgiving. My husband is worried I won't be up for it as they scheduled me for the D&C the day before but my oldest offered to help out and I think it'll be okay.
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kodiak, I used to interview
kodiak, I used to interview and hire people, and there are days I think I should go back to it because I know what people actually DO vs the current 'people-people" I am seeing. I know this as I have been trying to get someone hired. So let me give you some unsolicited advice.
Do the interview for the new position and go for it like you would any job you really want. Worry about the other stuff later. You don't know what you are dealing with, and it could be nothing, so don't let an opportunity pass you by because of some great unknown.
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An update again - got my results from the D&C, hysteroscopy and polypectomy and he said just EIN continued to be found so I'm scheduled for my total hysterectomy on December 23rd and then after those pathology results come back I'll get the final answer. He did tell me that there is still the chance some will be found in that last pathology but I feel safer that if it is, it will be early enough that the treatment is the same for EIN as the earliest stage. Relieved this was found early. Thank you all again and thinking of you all on this hard journey.
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That is good news. Hopefully, and most likely, that will be all they find. I was first diagnosed as EIN. It took me awhile to learn that that is some malignant cells, but they have not penetrated the basement membrane. Or it is called in situ. Nothing in contact with blood or lymph vessels. I was upgraded by the referral hospital, but still nothing was found in the hysterectomy specimen. No treatment. So hopefully that is what you will find. Good luck with your surgery!
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I just did a lot of reading about EIN, and I will be very interested in learning how things go for you. I hope that your surgery goes well on the 23rd, although it's not the best time for many people. So sorry you have to go through this, and we can relate, for sure. My understanding of EIN is that there is a 45-fold increase in the likelihood of developing cancer, so I hope that your situation can be resolved with the surgery. I hope it all stops with the EIN, in other words. Thinking of you during this extremely difficult time. It's just so hard. All the best to you.
Deb 2
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I wanted to correct something I wrote, but learned we can edit our comments only for one hour after typing. I wrote the word malignant. That is not correct. The cells are mutated. Malignant really means invasive. And in situ cells are not invasive. Just mutated at that point.
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Deb, yes I was researching it while waiting and it's definitely not a condition to take lightly. When I had my first appointment with the OB/GYN he said his goal was to have my organs out before the end of the year. I'm fortunate that I'm 49, done having children, so know reason to take any risks by leaving them in there. I'd been having abnormal bleeding for a while and then this fall started having a lot more bloating and pain so I am really hoping once I get over this recovery I'll get some relief from it all and the added benefit of not having to worry something serious was brewing in my insides. The statistics saw there is a 39-42% chance of concurrent cancer with EIN so there is still some anxiety until after the final pathology comes back, but at this point if it's there, it's likely to be the very early stages and outcome is much better. While researching I came across some heartbreaking stories (here and other sites) so I'm very thankful for what I have.
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No worries, I know what you mean for sure. I actually did some research for pathology because I was confused about my first report and I found a few interesting things. They say that there is a fair amount of inconsistency with pathologists when it comes to EIN vs. endometrial adencarcinoma in situ, and one website referenced if there is cribriforming carcinoma should be diagnosed which I did have, but I also found information that said the treatment is essentially the same and another study showed that sentinel lymph node sampling was negative in all cases with that presentation so overall I feel comfortable with the treatment. The studies basically stated that EIN and carcinoma in situ could be lumped together because of the similarity and treatment is the same. The bottom line for me was my doctor's statement of 'your organs needs to come out ASAP' agreed to what I found online and he did advise me that if the pathology after surgery comes back positive for any cancer they will send me to the oncologist for any type of follow up.
How did you find your post op recovery? What has been your follow up after surgery (if you don't mind me asking)?
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I really hope that you don't have the concurrent cancer, and I am of course glad that they are taking care of you "fairly early," but it's so hard to wait. I had also read the articles about the incidence of concurrent cancer with EIN, and was reluctant to mention in for all the obvious reasons. Even if it's EIN and nothing more, it's hugely significant and frightening, and still hard. The continuum of "who is worse off" is real, and that can't be denied, of course. What we care about in your thread is your situation. We care deeply, and know how hard this is.
There is no situation in this site that is easy. Every woman here suffers in some way, whether it's a huge crisis at the moment, a disappointment in treatments, or loss of a friend, not to mention fear of leaving our loved ones behind. It's all hard.
One of the things I like about the women in this site is that we support and care for each other. Even when it's hard. We're here, good times and bad. Sometimes women come in and need tremendous support during the initial diagnosis phase, and then they leave when they get happy news. I'm relieved when that happens. I have seen it more than once, and it's uplifting. Some women have been here for years, and this site is a second home to them, a habit as routine as morning coffee., When I found this site, I felt like someone had thrown me a life ring. I'm here every day, sometimes several times. I need to check in, read, do some research, learn something helpful. I'm so glad I learned about EIN today, so I understand more about your current situation and also about the precursor to endometriod adenocarcinoma, which is what I have. I wish we'd caught mine earlier. I'm currently living with a high intermediate risk of recurrence, but I've learned so much that I'm no longer in daily crisis and extreme stress. That's good :) Anyway, here to follow your journey, wherever it may lead you. I hope you're taking good care of yourself, doing some radical self-care---bubble baths, hot tea with honey, mani pedi? Whatever makes you happy now. I'm so sorry that you have to have the TH /BSO (total hysterectomy, with bilateral salpingo oophorectomy). Surgery is never fun, not at all. I wonder if you will have a Davinci robotic laparoscopic-assisted surgery? When you know, let us know.
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I don't mind at all. That is why we are here. I had laparoscopic surgery but the surgeon decided to remove my uterus by a low abdominal incision. So I had both. I did take the narcotics because I know movement is the most important aspect of recovery, and it. made it more comfortable to move. I did have some mild delusions while on it. I had a very easy recovery. The hardest part is waiting for the biopsy results. Keep busy. I think the treatment for. you is absolutely correct. You don't want those cells to go anywhere else. After surgery I was seen every 6 months at the University of Washington. I had a wonderful Gyne oncologist. I had what is called no residual cancer in the hysterectomy specimen. But they had upgraded me to serous endometrial intraepithelial carcinoma. I was told that I might recur. But all the studies did not show that treatment decreased the incidence of recurrence. I chose no treatment because no one knows if I needed treatment or not. The doctors take an oath "First do no harm". So we will see. My chances are very low but not non existent. My surgery was over 3 years ago and no evidence of disease NED. If you look at my profile there is a link to my blog which is a diary of my experience. I was examined every 6 months for 3 years, and now yearly
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Dear Kodiak Bear,
Best wishes on your surgery. Make sure to look at the tips about what to expect post-surgery. Having things like food in the freezer may be good for you. Do you have support? A spouse or someone that can do things? You won't be allowed to lift over ten pounds for a while.
Fingers crossed that within a few weeks your health will be restored.
Best,
FourBee
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Thank you so much, you say what I wanted to eloquently for how lovely everyone is here in their responses and I think it is awesome that you are here offering your words of support and advice to so many women. One thing I found interesting when I was researching was a video where a doctor discussed how many women believe abnormal bleeding is typical and just part of perimenopause, and I was right there in that group so while I did reach out to my doctor last year it was my regular doctor, took months before I finally did go in, and I was only referred to the women's health clinic at the end and they did a couple more tests, including a biopsy, and when it came back normal I just didn't follow up like they advised even though problems persisted. I also am surprised that there is a known draw back of a biopsy missing something abnormal since it's like a 'shot in the dark' as one person put it, that they don't do a D&C/biopsy/Hysteroscopy as the first stage of tests. I know it is more invasive but better for accuracy at least it seems like. Definitely knowledge I will take with me and share with my friends and family.
My radical self care was telling my mom I would not be having anyone over for Christmas - which sounds like a no brainer but I hosted Thanksgiving the day after my hysteroscopy/polypectomy/biopsies, despite my husband giving me the 'it's a bad idea' and he was not wrong. It was rough. I'm going to put in for four weeks of time off at work and try to recover well. I rushed back to work after my craniotomy and felt so much stress and it made recovery hard. This time around going to not worry about work, put limits on the extended family, and hopefully bounce back well and be mentally refreshed when I do go back to work. Physically I recovered great before, just was very stressed/worried about work.
The doctor will be doing the laparoscopic but not robotic-assist. I researched that too and studies show they both really have equitable results except robotic shined better for obese patients because it allows better visualization and manipulation in that more challenging setting. I'm overweight but not obese, and most of my excess weight is like a lot of ladies, butt and thighs so my belly area is pretty normal and not much extra aside from a baby pooch after having four boys. Hopefully will be a straight forward/textbook surgery for the doctor. I do have on my list of questions to ask how many he has done. We are military so I'm going to our military hospital. He said it is same day which is a little scary but I'm excited about, no one likes being in a hospital!
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