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How to deal with waiting?

Viv2020
Posts: 6
Joined: Sep 2020

Hi ladies, a few days ago my gyno called me in to tell me a polyp she removed is suspicious for adenocarcinoma. I am scheduled for a CT scan on the 11th and will be scheduled for a hysteroscopy with biopsy ince my period arrives (based on my body signs, within a week). While she has told me thst signs point to it being at an early stage, if I even have it, I feel paralyzed. I just turned 49 last month and still have regular periods. My mind keeps going over what signs I have missed. I took a couple of days off of work to absorb the news, alternateing between panic and being somewhat normal. We have decided to not say anything to our kids, 19 and 17, until we know something for certain. I have received permission to work from home so as to avoid covid exposure, which I fear could delay testing/treatment. I have talked with the insurance and have informed my closest group of friends; I have decided to not tell my father, who is suffering from his own health issues,until I know more. What else can I do? I am a problem solver and having to wait and not having control is excruciating. I am also an optimist by nature but am trying to stifle that instinct since I am afraid it will invite bad luck.

els19
Posts: 90
Joined: Jun 2014

Of course you're worried! The biggest thing that helped me was meditation. There are some very good cds and downloads for mindfulness to help you relax. One very good one is titled Fight Cancer. Another one I had was Self Healing and another was guided self relaxation. I listened to all many times. Waiting is hard and try not to drive yourself crazy by searching the Internet. You'll just find a lot of outdated information. This site has a lot of information and it's where I found hope. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

Viv, I was 49 when I was diagnosed.  I went in for a D&C, not telling my sisters or my mom, and honestly, cancer never even entered my mind.  Thankfully, my gyn, and it sounds like yours as well, is very proactive.  Of course mine was cancer and I remember asking my gynecologic oncologist (and that is who you want to work with if it is cancer) "how did I get this?"  It is like a rhetorical question, but I have racked my brains over the years thinking if where I lived or what I did for jobs brought it on, and just can't figure it out. 

I found taking it one step at a time, because that is all I could do, was my approach.  I would suggest to wait to see what you are dealing with, it really may be nothing, but if it is you want to ask for a gynecologic oncologist.  They make the plan and you work the plan.  PLEASE be sure you let us know how everything goes, but I do hope it is nothing.

MAbound
Posts: 1101
Joined: Jun 2016

My go-to method for dealing with stress is to cook and clean house. Doesn't matter what is causing the stress, it just seems to make me feel like I have control over something when everything else is beyond my ability to control. In the case of getting tested for cancer, it was a practical way to cope because then I was ready for when surgery and treatment put me out of commission for tending to those kind of things.

At night, when I needed quiet distraction, I read trashy novels. Until you get a definitive diagnosis (which can't happen until after surgery and testing of removed tissue), reading about this cancer is pointless because there are so many variables. There's a lot on the internet that can scare you witless, so it's better to avoid obsessing about the possibilities and hold off on any research until you know exactly what you need to research. It's a one-step-at-a-time process and right now you are in the most demanding part...being patient until you know exactly what you are dealing with. See the above paragraph when the need to be pro-active strikes you.

I agree with NoTime about being under a gyn-oncologist's care whenever cancer is suspected. Go ahead and get the testing planned for you because that's what the specialist would likely send you for in any case, but if anything comes back positive or suspicious, it would be time for the gynecologist to let you go to this kind of specialist rather than doing anything more for you. Most will do that, but there are some who don't and we would make you aware not to accept that. 

Adenocarcinoma is the most common form of uterine cancer and also the most treatable. I was diagnosed with a grade 3, stage 3a endometrial adenocarcinoma (after surgery and testing of tissue), so I was not caught early. I am still here, NED, four years after treatment ended, so I am a testament to treatment being both doable and effective. I hope that can help you to cope with the anxiety you are feeling at the moment. Getting this cancer is not the automatic death sentence some other cancers can be. It's a chore to get through treatment, but there's a lot of us here that can attest to its doability and effectiveness. And now that you've found us, you'll have any help and support you need as you go through the process. 

There's a lot of really helpful information in the threads of this forum and reading as much of them as you can is recommended. It is a cumbersome site though and not easy to search when you think of a question, so don't hesitate to ask anything as you go along. The thing to keep in mind while reading, though, is that what you read may be a bit skewed toward negative experiences because many of those who recover leave to go on with their lives. That's a really good thing, but you have to keep in mind that it can make it seem like bad things happening are more common than they really are. Nobody really has the exact same experiences because we all bring our own unique circumstances to the table.

Good luck to you with your testing. I hope all of the worry will be for naught. Please keep us in the loop, however, because we will be worrying right along with you.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Viv, what stood out to me was your saying you do not like not being in control. Believe me, I know what you mean. Due to my early marriage years, I learned to "practice for disaster" every day. I had fire drills, I stocked food, I had an emergency fund...I did everything I could to be ready. Well, cancer taught me something about control. Sometimes things fall apart and you must then decide how to go forward. I have dealt with cancer since 1977 and I have learned that the doctors can only give you a guess as to the future. According to my doctor, she told me last Oct. that I would probably be in hospice by mid 2020! Surprise! The June scan showed no tumor and I am not anywhere close to needing hospice. I tell you this just to say, cancer you cannot control, BUT, you can listen and learn from the ladies here and with the help of a good doctor, maybe not control cancer, but keep it locked up for a long time. You sound like a smart woman and know you will win this.

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

only one in ten polyps that are biopsied are cancerous.  YOu have a 90% chance it is not.   And it is really hard to absorb that information.   I have never read any description of polyps that "look" cancerous.  Unless it is very large.  They have to biopsy it.  And yes, I would wati to talk to your children about this.  Good luck and plesae come back and let us know how your biopsy goes. We love good news too.

Viv2020
Posts: 6
Joined: Sep 2020

I guess I should have been clearer. They did a histological exam of the polyp and the result was suspected adenocarcinoma, further testing recommended. My gyno has referred me to a specialist to perform the biopsy. I don't really know what the difference is between the two tests. Maybe to take a more thorough look inside and take various samples for testing? In any case, I have decided to carry on with normal activities as much as possible tho the temptation to stay in bed all day is great. Thanks for the encouragement.

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

I am an RN and it took me months to figure out this process.  So your gynecologist removed a polyp that said it was suspicious for malignancy.   That can mean they found pre malignant cells isolated in the polyp.  My biopsy result was something called Endometrail intraepithelial neoplasia.  It is pre cancer for endometrioid cancer.  Which is the garden variety.  Early stage endometrioid endometrial cancer often does not require any treatment and is the commonest cancer type.  You can ask your gynecologist for the biopsy report as it might give you more confidence about the upcoming procedure.  It is curious that if she thought you had a malignancy she just didn't refer you for a hysterectomy.  Which makes me think she is more inclined to think it is pre cancer.  

I would advise you to ask her for a copy of your pathology report.   And be aware that she is sending you for another biopsy, and not a hysterectomy, which would be the next step if you had a adenocarcinoma.

By the way, my pathology report was changed after I saw the gyne oncologist.  It was still early, and I chose to have no treatment.  

 

LisaPizza's picture
LisaPizza
Posts: 336
Joined: Feb 2018

I wondered the same. I had a polyp, prolapsed actually, and my first test was a hysteroscopy with D&C with polypectomy and fibroidectomy. Pathology was inclusive (AT LEAST COMPLEX ATYPICAL HYPERPLASIA, ARISING WITHIN AN ATYPICAL POLYPOID ADENOMYOMATOUS PROLIFERATION), and I was sent straight to gyn onc, and had a hysterectomy. Thank god, because as you might guess by my presence here on this board, I did have cancer at hysterectomy. I'm not sure how reassured I would be by a negative biopsy. Getting your actual pathology report would be the place to start, and may make your situation more clear. If there's atypical hyperplasia, that's the kicker, because it's considered precancerous, and 25-30% of these may have cancer found at surgery that wasn't seeen at biopsy (or in my case, even with D&C). If there's hyperplasia without atypia, that's much better, it's not considered precancerous, and doesn't necessarily need surgery.

Viv2020
Posts: 6
Joined: Sep 2020

I would like to update and ask for advice. Since ai first wrote, I have had a CT scan (showing nothing, radiologist says that if there is anything, it is microscopic). I also had a uterine biopsy, which showed simple hyperplasiaand which the doctor said to not worry about. The polyp was fully removed in ambulatory surgery and is not cancerous. In meantime, while waiting for the uterine biopsy, I made an appointment with a gyno oncologist, whom I saw today (I pushed the visit back to wait for the polyp biopsy results). He suggests that I have a hysterectomy, including ovaries, the sooner the better since the hyperplasia increases my risk for developing cancer and because there may be cancer cells somewhere in there, ginven the first biopsy. I am going to call my gyno tomorrow, but any suggestions on questions to ask or issues to raise? I really would like to start menopause naturally and maybe have a precautionary hysterectomy in 2 or 3 years' time, but yet I also don't want to risk ignoring a problem that can be resolved most easily at avery early stage.

MAbound
Posts: 1101
Joined: Jun 2016

I am so glad that you took it into your own hands to talk to a gyn oncologist. When it comes to female cancers, letting your gyn handle your care is akin to having a generalist do brain surgery on you. This is not their area of expertise and  uterine cancer can be a killer. It's time for your gyn to turn you over to a gyn-oncolgist's care since signs are pointing to you either being on the cusp of having cancer or in an early stage of it. You'll still go to the gyn for your annual exam and mammograms, but please rely on the gyn oncolgist to fend off cancer even if he doesn't tell you what you want to hear about keeping your uterus or ovaries a bit longer.

I know that you'd like to put off having a hysterectomy because you are hoping to go through menopause naturally, but it doesn't sound like you are going to have that luxury. Hyperplasia is a precurser to cancer. Period. It can be beaten back with hormone therapy, but any history of it adds to cancer risk. Your proximity to menopause is another strike against you because your risk goes up the closer you get to it or after it. You are going to have this cancer if you delay (if you don't have it already). If you are lucky, a hysterectomy will be preventive (and how many of us wished that we could have had a preventive one!), otherwise one now will hopefully treat it without the need for chemo or radiation. The blunt truth is you don't have 2-3 years to put this off. The trade-off of natural menopause vs. surgical just isn't worth the risk of advanced cancer. It just isn't.

I imagine the thought of a total hysterectomy sounds drastic to you, but I can assure you that it is a piece of cake compared to the alternative. You are teetering on the brink and I hope you grab the opportunity to stop this cancer in its tracks before it gets any more of a foothold in your body. You will sleep so much better not having to worry about having to fight this particular beast. 

How many other risk factors for this cancer apply to you? These also contribute to endometrial cancer risk:

Overweight, periods starting before age 12, no pregnancies, never used birth control, family history, history of hyperplasia, exposure to endocrine disruptors over lifetime, pre-diabetes or diabetes, polycystic ovarian syndrome (PCOS), Lynch Syndrome, taking Tamoxifen, not a regular excercizer, history of pelvic radiation.

I'm sorry if I am being a bit blunt here, but I am speaking from the other side of experience. You can talk yourself out of anything, but when it comes to the threat of cancer, it's definitely not in your own best interest to do so. 

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

And didn't.  Now I have a gyne oncologist and 6 months checks and worry, fear of this choice ending my life.  I would have the hysterectomy. You can choose about your ovaries. I think every woman here wishes she had a hysterectomy before she had cancer.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

Viv2020, I agree with ForHerself. Also, if I were you, I would see if the onc/gyn could do the hysterectomy instead of your regular gyn. That will ensure everything will be checked and removed that needs to be to make sure you are cancer free. If I could go back in time, I would have had my hysterectomy 5 years sooner. It would have saved me from having cancer and all that comes with that diagnosis. 

Good luck and take care. 

Love and Hugs,

Cindi

alicia2020
Posts: 90
Joined: Sep 2020

But...And I don't want to scare anyone...but I agree wholeheartedly with my friends who have replied already. You can read my About Me page and see what I've gone through since the end of July. I was told probably no cancer & let regular GYN do my hysterectomy and then now am still trying to recover from a second major surgery for staging. And waiting for final pathology and staging report.

So.... I "second" my friends advice:

1) I wouldn't wait on a hysterectomy if it looks like you'll have future problems (keep your ovaries, if you want!)

2) If you decide to have hysterectomy, please get a gynecological oncologist to do your surgery 

Just my .02! Please let us know how you're doing Viv2020!

Prayers and hugs to all!

Alicia

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

Viv, first, thank you coming back and update us on what is going on.  Second, YOU GO GIRL!  Getting your own gyn onc!  I would suggest talking to the office about thoughts on keeping your ovaries.  I understand not being want to thrown in to menopause, but it is going to come so if it happens there is lots of good advice on dealing with that as well. 

To alicia, while I know you said you didn't want to scare anyone, I think your honesty is greatly appreciated.  We have to talk about it all, and we need you to keep us posted on YOU!

Viv2020
Posts: 6
Joined: Sep 2020

Update. I spoke with my gyno today, who said she has sent the original speciman out to a different lab to be reviewed again since its result doesn't fit with the other tests. She had an oncologist at the hospital she is affiliated with look at imy case, and this is what he recommended that we do before taking the drastic step of a hysterectomy. 

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

I had no idea how difficult it is to make these diagnoses of different endometrial cancers, and I am an RN.  Pathologists often make different diagnoses of slides.  I had mine changed after the gynecologist pathologist saw my slides.  So this is a good recommendation for you.  

 

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