Possible EC

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!

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.

I'm a little late to the party and saw that cmb and ConnieSW also gave similar replies. Blame it on chemo brain...lol!

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.

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

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.

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.

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.

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.

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?

1. 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.
2. 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.
3. 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