Possible EC
Hello, Ladies!
My name is Ryan. My mother named me after "Ryan's Hope", the 70s soap opera. I just turned 43 this past Monday. I have one biological child, an amazing 15-year-old daughter. I live in Baton Rouge. I have been married for almost 18 years.
A little backstory to my current situation: In June 2002, I had my first abnormal pap come back. Had a colpo and biopsy done. That came back as high grade, so my GYN did a LEEP. The pathology came back as CIN3. I have had abnormal Paps on and off over the last 20 years, but nothing has ever turned cancerous. I have also had another LEEP somewhere in between.
Fast forward to September/October of 2021, I began spotting daily, which then turned into more than spotting. My periods have always been like clockwork, so when I was still having abnormal bleeding in November, I called the dr (who scolded me for not calling sooner). She scheduled a TVUS in early December that showed a thickened endometrium, but no mass. She did an endometrial biopsy a week later as well that came back negative for hyperplasia or malignancy. She started me on Progesterone to try and regulate my periods. I went from December 28-March with no period at all, not even spotting.
March 2nd, I had my well-woman and my Pap showed "Atypical Glandular Cells Not Otherwise Specified". It completely caught me off guard that my GYN is who called to tell me and not the nurse. She explained that those types of cells are high grade and either come from the upper cervix or the uterus. They are not the same kinds of cells as I had with previous Paps.
She was going to do a D&C, but decided to move straight to a Hysterectomy instead, given my past history. Surgery is scheduled for 4/27 and it will be robotic (DaVinci). I am also having an ECC (Endocervical Curratege) on 4/8.
So, while I do not actually have a uterine cancer DX, I am led to believe my GYN is still considering it even though my endo biopsy was negative. What is the occurrence of a false-negative endo biopsy? Does that happen? Can there still be cancer even if my TVUS showed only a thickened endometrium?
I am so sorry for the long post, but thank you for bearing with me! Just soo many questions and I am hoping someone has had the same kind or similar experience.
Comments
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Whoa...wait a minute!
Before allowing your gyn to perform your hysterectomy, I think many of us here would advise you to ask for (actually insist on!)a referral to a gyn oncologist. They are the experts in below-the-belt women's cancers like uterine, cervical, vulvar, ovarian, etc. and should be the doctor confirming or disproving a cancer diagnosis and performing any hysterectomy when cancer is a possibility.
Biopsies are hit or miss for sampling just the right place where a lesion might be and ultrasounds are less than reliable in picking up existing cancer, too. Those words "High grade" are very concerning.
A gynecologist just does not have the same expertise for doing this surgery under such circumstances. There are lot lot of things that have to happen in the right order when cancer is a concern and you really want a specialist who does nothing but deal with these particular cancers to catch it when you are having the symptoms that you have progressed to. I know it sounds like the best thing to do is to just have the hysterectomy ASAP so that it stops being a worry, but you do have time to get the right kind of doctor to get you through this without regrets after the fact depending on what is found when they do pathology on removed tissue. Don't let your gynecologist push you into letting her do your surgery until you at least have an opinion from a gyn oncologist about it!
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I've had two ultrasounds after I experienced vaginal bleeding, nine years apart. While both indicated thickening of the endometrium, neither report specifically mentioned either the benign polyp I had the first time or the cancer tumor that I had the second time.
In both cases, I had a D&C/hysteroscopy after the ultrasound, done by a gynecologist. The first removed the polyp, which resolved my bleeding at that time. The second time the procedure found that I did have cancer. Once I was diagnosed with cancer after that D&C, I was immediately referred to a gynecological oncologist for surgery and preliminary treatment planning.
So I agree with MAbound that if there is even a slight chance that you have cancer, the surgery should be done by a gynecological oncologist.
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My stomach knotted up when I read your post. 10 years ago I got pap results just like yours and my gyn immediately did an ultrasound and biopsy. I did have cancer and was referred to a gyn oncologist. I completely agree with MAbound and cmb. Please, please have your surgery with the specialist. My cancer was high grade and I feel I owe my life to his expertise.
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I would have to agree with MAbound on this one. I also had numerous "bad" paps as a young woman, so I always thought that I'd have to have a hysterectomy one day. But fast forward about 30 years and as soon I told my PCP that I was having post menopausal spotting (I went through natural menopause in my late 30's), he sent me right to a GYN. As soon as the GYN did the TVUS that led to me having a D&C, she told me right then and there that if the D&C showed cancer cells, she would refer me to a Gynecologic Oncologist and that is exactly what happened. I really appreciated that she sent me right to a specialist. She was an OB/GYN not a cancer specialist. Now I am being treated by a Cancer Team who does nothing but GYN Cancers. These are very hard decisions, especially when dealing with a Doc that you have such a history with . I wish you all the best and regardless of your decision, you have stumbled onto some great people here who will support you know matter what.
Just my humble opinion, please keep us posted,
Ginnie
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Thank you all for your responses.
I need to clarify that the high grade PAP was 20 years ago. I've not had another high grade since my first LEEP, but have had some low grade/moderate PAPs. Also, the GYN I have now is not my original dr. We moved from Dallas to Baton Rouge in 2012 and I had to find a new GYN. I have had one, maybe two abnormal PAPs since moving to BR though, but they resolved on their own. The abnormal results of my most recent PAP two weeks ago is the first time I have ever had AGC-NOS. Also, my HPV test done at the same time was negative, which has me really confused but also leads me to believe the AGC could be of the Endometrial variety. Thoughts?
Another issue that has come up within the last 6 weeks or so is a pain in my right hip. It hurts from my hip inward towards my lower right abdomen. I have not injured myself, so I am not sure what to make of it. It hurt so bad Monday. Advil and Aleve did not help.
Am I making any sense? I feel like I'm just rambling and confusing everyone.
Anyway, I will put a call into the GYN tomorrow morning and ask about an Onc referral. Regardless of what she says, I feel I need a hysterectomy no matter what, given my history and current symptoms. This has been a long roller coaster ride and I am ready to get off.
I soo appreciate all of your kind responses and advice!! And thank you for being patient with me. <3
~Ryan
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Along with the others, I agree that you should insist on a referral to a gyn oncologist. My gyn did a D&C but told me beforehand that in the case of cancer she would refer me to a gyn oncologist. As for the timing, my hysterectomy was only two weeks after the D&C, so it doesn't have to extend the waiting time.
In addition, despite having the common, non-aggressive form of endometrial adenocarcinoma, and despite having a quick surgery by a gyn oncologist soon after diagnosis, followed by brachytherapy, I still ended up with a late recurrence 6 years later. Any kind of cancer can be dangerous.
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Pap smears will not detect uterine cancer. Mine always came back negative right up to before I was diagnosed with advanced stage, high grade endometrial cancer.
Endometrial adenocarcinoma is the most common type of the different kinds of uterine cancer and it is quite treatable and curable, especially when caught early. But it's still cancer and you still need the expertise of a specialist to have the best chance for a favorable outcome like survival, particularly when high grade cells are detected. (I'm looking at your Mar 2 paragraph) This cancer is a very sneaky, tricky beast with a lot of variables to contend with and while an ob/gyn is a specialist, she is the wrong specialist for what you are having a hysterectomy for. She's like a general practitioner compared to a gyn oncologist as far as expertise in cancer goes. My diagnosis was 6 years ago and I'm still here, but I had an experienced, gyn oncologist to get me through it. The progression of your issues is so similar to what I went through before diagnosis that I'm hearing alarm bells going off in my head, thus my urging that you go to a gyn oncologist for any hysterectomy you have. You won't regret it.
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Good morning, Friends!
Ryan, I’m so sorry you’re having to deal with this, but you have definitely come to the right place for sound, compassionate, and helpful advice!
Like my sisters here, I agree that if there’s the slightest chance of a cancer diagnosis, you should NOT allow a GYN to perform hysterectomy. You can click on any of our names to get to our profiles to read our stories. I am one of the few unlucky ones who allowed a GYN to do my hysterectomy and then ended up with a SECOND surgery by a GO for staging. My GYN was so sure that I didn’t have cancer…and I was so desperate to believe him….that I agreed to it. Big. Mistake. The GO spent 5 1/2 hours cleaning up the mess the incompetent GYN left behind. Not to mention my 4 little tumors were bright, neon orange…like, how does one miss those??? GO’s answer: “We’ll, he’s a good doctor, but not a cancer doctor.” Great. Just Great.
I write this with great empathy and kindness, unfortunately, there’s no quick exit from this roller coaster. I think that’s part of what got me into a bad situation with the GYN. I wanted it all to be over. Now. And it didn’t occur to me to insist on a GO. I found this board after my first surgery, so it was too late.
We’re here for you and are very happy to help! And if it all turns out to be nothing we will cheer loudly!
❤️, Alicia
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I spoke with my dr a few moments ago. At this time, she does not feel Oncology is needed. She really wants to see what my ECC on 4/8 looks like. Those results will tell her if the glandular cells found on my PAP were of cervical or uterine origin.
My hysterectomy is scheduled as planned and the ECC should let her know how aggressive we need to be. Oh! Also, she said if anything looked suspicious once she's in there, she would stop surgery and Oncology would be called in to take over.
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Getting a cancer diagnosis is a bit like getting struck by lightening. It leaves you forever changed and unable to ignore a rumbling sky like you used to. The problem with uterine cancer is that there is no simple screening test for it like there is for breast or cervical cancer and certainly no education about its risks factors or symptoms like we have had in our face all of our lives for breast or cervical cancer. Most of us are blindsided when we get this diagnosis and encounter a huge learning curve to get through it as life and death decisions are thrust upon us as we are treated. The more I learned on my cancer journey, the more that this upset me and it still does. Maybe that makes me hear zebras instead of horses, but I fear that some doctors miss the zebras because they don't like to be mistaken.
The fact that your gyn thinks things are concerning enough to put you through another invasive test that only checks the cervix and then do a hysterectomy makes her reluctance to send you to a gyn oncologist first questionable. What is there to lose except a fear of sending you should it not be cancer? So what? Sometimes, as a patient facing something potentially as serious as this, you have to push yourself to be your own advocate. That can sometimes mean getting quite assertive with a doctor and believe me I know how that can be quite intimidating to do. You have a right to a more expert opinion. You have a right to multiple opinions. Any doctor who gives you a hard time asking for that should set off alarm bells. She should be welcoming a GO's expertise at this point with what is going on before progressing to a hysterectomy.
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Since the gynecologist was originally going to do a D&C, why don't you ask her to do that instead of the more limited ECC (Endocervical Curratege) on 4/8? I'd be concerned if any cancer cells were higher up in the uterus, they might not be caught during the ECC, which checks for cells around the cervix and may possibly catch some cells around the lower portion of the uterus.
If the D&C did find cancer, the gynecological oncologist could then plan for the subsequent surgery accordingly. In my case, that meant a pre-surgery CT-scan, CA-125 blood test and a colonoscopy. I can't imagine stopping an ongoing surgery mid-way through to bring an oncologist who has not been involved up to that point to "finish," even assuming they'd be available at the moment. More likely, the surgery would need to be stopped and rescheduled, which seems like an incredible waste of time and resources.
If there was no cancer, the gynecologist could do the hysterectomy later as planned.
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My gynecologist also offered to do my hysterectomy. After my initial consultation with the gynecologic oncologist, there was absolutely no way I would let a generalist gynecologist perform my surgery. My gyn-onc was the "go to" specialist who the female doctors, as well as the male doctors' wives and daughters, went when they had gynecologic issues where there was a possibility of gynecologic cancer.
Sometimes those who are less trained in a specialized area like cancer don't know what they don't know. I found your gynecologist's comment, "if anything looked suspicious once she's in there, she would stop surgery and Oncology would be called in to take over," terrifying to say the least. If I were in your shoes, I would RUN, not walk, to an experienced gynecologic oncologist.
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Welcome Ryan,
More comments from the peanut gallery. 😀 To add to cmb's points, typically if you have cancer, in order to stage a patient, you will have a hysterectomy, BSO, SLN sampling, pelvic washings, and omentum sampling plus all of the pre-surgical testing. Of course, if you do not have cancer you might still need a hysterectomy to correct your problems. You do not want to have a hysterectomy and then if cancer is found to have another major surgery to stage you. That is just backwards and would put you at much greater risk of two surgeries. I wish I could hum a catchy tune to go along with this, but pleas, please, please get a second opinion by a different gyne BEFORE any hysterectomy. It's difficult for many of us to ask for a 2nd opinion because we don't want to offend our doctor, but it is you with the problem, not the doctor. If you have confidence in your current gyne and a 2nd opinion concurs then you will know you are getting the right treatment. Preferably with a major center who also handles cancer. (Most GO will not schedule an appointment with you if you do not have cancer verified by pathology.) Good luck and let us know how you are doing.
Denise
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To give you a sense of how seriously concerned we are for you, let me explain what they are talking about when you see the words "high grade" and about staging. This is getting ahead of where you are right now and you shouldn't take this to mean you have cancer, but if you do or are heading in that direction, it would probably be helpful to understand these two things.
In cancer, staging refers to how far cancer has spread from its point of origin. The higher the number, the greater the spread. That cannot be determined until after surgery is done. Knowing what and how much to remove, and what technique to use while protecting surrounding organs from life-altering damage is an art that your gyn does not possess the skills or know-how to perform. I think Moekay put it elegantly when she said they don't know what they don't know. A GO would also be able to order an MRI, CT, and/or PET prior to surgery to guide it and determine if taking sentinel pelvic and para-aortic lymph nodes is also needed and how far to go. A gyn would probably run into road blocks from your insurance for these expensive tests. Tissue has to be removed carefully to prevent the accidental contamination of healthy cells with cancerous ones. That can muck up the staging and put you at higher risk for recurrence if they get into the abdomen. Skill and technique is everything for preventing that. It's as big a deal as getting the pathology correctly interpreted to get a complete and accurate diagnosis which determines what comes next. My GO sent my tissue to three different labs before the final outcome was agreed upon, so it's not as simple as it seems it should be. Getting it right is critical and you want somebody who knows what they are doing in charge of that.
Grading refers to how much the cells resemble normal tissue vs. cancerous tissue. Grade 1 is considered normal cells. Grade 2 cells are composed of a mix of normal vs. cancerous tissue, and grade 3 cells have little or no normal characteristics. Grade 1 and 2 cells that turn out to be cancer are less aggressive than grade 3 cells which are the most aggressive for spreading. While statistics can't be applied to individuals for making predictions of treatment outcomes, they do indicate a greater need for equally aggressive intervention from the get-go. Front-line treatment is one's best shot at a cure no matter when the cancer is found, so having the right specialist before agreeing to this surgery really matters.
My hope is that at worst you don't have cancer and I have mud on my face for being so concerned. But if you do, I don't want you to have the experience of having any shoulda, woulda, coulda.
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rnj679,
I composed several paragraphs and have now deleted them. I realized I was just repeating myself and what the other woman have written here.
So, I’ll just write this. I’ve been a part of this board for about 20 months. The women who give of themselves here are kind, generous, smart, knowledgeable, and have a wealth of experience. The fine adjectives I could use to describe them is endless. I trust them. So….Including myself, EIGHT women have responded to your posts and we’ve all written the same thing. That’s worth repeating….we’ve all written the same thing. I’m just sayin’…….
I wish you the best of luck ! I pray that information gleaned from your procedures render this thread moot!
😎, A
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Welcome Ryan. Lots of advice here, but I see. you said oncologist. We are talking about a different specialist. A gynecological oncologist. They are surgeons too. Your pap is questionable. IF you did have some type of cancer cells in your hysterectomy specimen, you should have surgical staging done at that time. They do biopsies right during surgery. IF there were cancer cells you have a couple of lymph nodes taken, a sample of momentum, and a sample of pelvic washings. I don't know that your gynecologist does this. You might ask her. Will she stage you? Will she do biopsies during surgery? IF the answer is no, you definitely need a gynecological oncologist. It is a strange fact that gynecological surgeons also do treatment after, hence the gynecological oncologist. They are more than a gynecologist.
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Well I am late to this chat, but let me say lots of loving support - FOR SURE.
I remember my gyn doing my D&C. They found a few polyps and I am so grateful that I was immediately turned over to a gyn onc for further surgery and treatment. I had no idea I needed such a specialist but it was critical. My heart has broken to meet women who said their gyn felt they could handle this surgery, only to find they had a recurrence they were battling and all they could ask was "what if?"
Ryan, welcome. Please take a breath. All the warriors here just want the best for you!
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Hey, Ryan!
Looks like the full team has given you a lot of information and advice to digest. Why not add a little more, ha ha?
- My doctor referred me to a gynecologist who does D & C's, as I didn't want a biopsy while awake. The D & C was done, and included removal of polyps, one of which was cancerous.
- I was referred by my doctor because I had Atypical glandular cells of endometrial origin. In other words, I had uterine cells --Atypical ones--sliding through my cervix. While it is rare to have uterine cancer show up on a pap, mine certainly did. Enough so that I could be sent for a D& C.
- As soon as pathology results showed cancer, I was referred immediately (do not pass go! do not collect 200 dollars!) to a gynecological oncologist. Then, I was examined (sigh, that's another story) and scheduled for my total hysterectomy bilateral salpingo oopherectomy etc. and a partial vaginectomy to boot.
I want to make two points here.
a. uterine cancer does occasionally "show up" on a pap smear. Mine did.
b. if you have cancer show up on your pathology report from a D & C (take CMB's advice, push for that), get thee to a Gyn Onc. Don't let your gynecologist do it. They need to refer you to a specialist at that point.
There! now you've got my two cents. Best of luck!
Deb
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My pap prior to diagnosis also found adenocarcinoma. The narrative description stated that it was most likely of endometrial origin.
I also want to mention that self-referrals to gynecologic oncologists prior to a cancer diagnosis are also possible, based on a quick search I did. As one example, in its article "When to See a Gynecologic Oncologist," Moffitt Cancer Center provides a laundry list of symptoms associated with one or more gynecologic cancers:
See: https://moffitt.org/cancers/endometrial-uterine-cancer/faqs/when-to-see-a-gynecologic-oncologist/
After the symptom list, the article states:
"If you’re experiencing any of these symptoms, you’ll want to make an appointment with your gynecologist, who can perform an examination and refer you to a gynecologic oncologist if necessary. Or, if you would prefer, you can also make an appointment directly with a gynecologic oncologist at Moffitt Cancer Center." (emphasis added).
MoeKay
2
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