Diagnosis: Endometrial Andenocarcinoma
My personal journey with cancer has had its ups and downs, like most cancer patients. Before my diagnosis, I hated the word 'journey.' I thought it sounded so self-indulgent. Now, I think it's an appropriate word. In any 'journey,' there are ups and downs and several roads you can choose. There are several treatment plans available and so many major decisions and life changes.
I am lucky enough to have survived my diagnosis and treatment. Many women will lose their brave fight with endometrial cancer, and many will go on to live with the fear of cancer metastasizing. Through my journey, I have met so many women who have been in various stages of their fight, and I truly gained strength from all of them.
My personal journey started about a year and a half ago. I have always had very bad periods. I have experienced extremely heavy bleeding and horrific cramps, and my breasts used to be untouchable for at least two weeks before my period. When I hit forty-nine, I went into what I thought was perimenopause. I started getting my period every two weeks, and then sometimes it would disappear for a couple of months.
One day after thinking I was on the last day of an eight-day period, I walked into the kitchen, and I had a sensation of what felt like my water was breaking. I have two beautiful boys, and I remember that sensation like it was yesterday. I looked down on the floor and was horrified to see that the 'water' I felt was blood. I was hemorrhaging.
If this happens to a person, it's not normal. The problem is, if you are a perimenopausal woman, doctors tend to think that this symptom is no big deal.
After the hemorrhaging, I made an appointment with an OBGYN. I wasn't very happy with the treatment I received when I visited the doctor. She asked me some questions about my bleeding and symptoms. She did an internal exam and a pap smear. I had severe fibroids, and she simply told me that because I had just turned 50, she would be able to control the bleeding, but we shouldn't think about a hysterectomy. She suggested pills for bleeding. I wasn't happy with that. I wanted a hysterectomy. After my visit with her, I sought a second opinion.
My second opinion was with a local OBGYN. I had the results of my pap smear which was normal, and so I brought it in. I told her about the fibroids, the heavy bleeding, and at the time, I had bled every single day for two entire months. The new OBGYN suggested the same thing. 'We can give you medication to stop the bleeding.' I told her my uterus was ruining my life. I had no bladder control due to the giant size of my uterus. I pushed back.
Self-advocating when you know something is wrong with your body is so essential. The doctor finally agreed to do a hysterectomy, but she warned me it wouldn't be for a few months because the hospitals were overrun with COVID. I waited and continued to call. I became frustrated and basically threw a fit a couple of months later, so they finally scheduled a hysterectomy. I was told that they would try and do it vaginally, so I didn't have a long recovery time.
The day of the surgery finally came. The doctor came to see me before the surgery. All I knew was she was going to remove the uterus and leave the ovaries in so I didn't go into 'hard menopause.' When I woke up, I was shocked.
My doctor, who blew off my symptoms for months, went and spoke to my husband. She didn't bother speaking to me. She showed my husband a picture of my uterus that she had on her phone. It turns out that my uterus was 'the biggest uterus she ever saw.' It was the size of a basketball and weighed about 20 pounds. It was so big, that she had to leave the cervix in because she wasn't able to get to it. I ended up in the hospital for five days because I had a 12-inch incision; I had a high fever and was in copious amounts of pain.
To make matters worse, my doctor never came and talked to me after the surgery. Instead, she left and went on vacation. She forgot to call in the pain meds for the nurses to administer, so I laid in agony for about 4 hours while the nurses called over and over again to try and get a doctor to get me some morphine. I was later apologized to by the hospital and several doctors, but it was very upsetting and caused my recovery to be prolonged. I couldn't wait to leave.
Five days later, they gave me my walking papers and I didn't even wait for a wheelchair, I had my husband help me walk out of that place and hoped I would never see it again.
Two days later, my world changed forever.
Three Words No One Wants to Hear
Everyone is terrified of hearing the words 'you have cancer.' The way I learned about my cancer was pretty unconventional. I will say that once you hear the word 'cancer' you really don't hear anything else. The picture of the magnifying glass above is pertinent because it's like the words engulf your body.
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I was home recovering for one night after my week in 'Hell Hospital,' which is a more affectionate name than it deserved. Don't get me wrong, the nurses were phenomenal. They can only do what the doctors give them orders for. However, once I got home, I was very grateful to be in my own bed, and I was sleepy and enjoying the hazy buzz from the hydrocodone.
I noticed that my phone had rung several times. I missed four calls from my doctor's office. I listened to the message and it said something like, 'Hi Summer, we need to talk to you right away, can you come in today? I know you just got home, please call us as soon as possible.' Before I even dialed the number, I knew what it was. They were going to tell me I had cancer. I asked my husband to come into the bedroom while I called the office and put the phone on speaker. The lady who called me answered and she said she wasn't going to make me come in because I wasn't even ambulatory with all I went through, and I had just gotten home the day prior. I had a 12-inch incision and a big incision in my belly button where she tried to do the original surgery without cutting me open. That hurt worst of all to be honest. Plus I had only been fever-free for 24 hours.
Of course, my doctor was still on vacation, so I talked to the nurse. Her exact words were, 'Your type of cancer is Grade 2.' I didn't have any sort of inkling that I had cancer in the first place. It was supposed to be fibroid tumors, not cancer. I am sure she rattled on about other things after that but I just heard CANCER CANCER CANCER over and over in my brain. I went into shock. She rattled on about the fact that I should have seen an oncologist for the first surgery and couldn't figure out why I had the surgery from a regular OBGYN because of the size of my uterus. She then told me she had to refer me to an oncologist. Wow. I feel sick even remembering that phone call.
Telling My Family
I hung up the phone with the nurse and I kind of looked at my husband but I wasn't necessarily upset. I think it was just mass confusion and wonderment that set in. Cancer was for other people who had chemo and radiation. It couldn't happen to me. I am strong, tough.. they had to be wrong.
My entire family is from Canada and of course, I hadn't seen them in over a year because Covid effectively shut down the nation and to this day Canada's borders are still closed to visitors due to a lack of vaccinations in the country. But I talk to my parents every day. And to be honest I needed their support. Maybe it was selfish of me to call them, but I don't think they would have wanted me to hold it from them. I decided to call them, and wait to find out more before I called my children and my cousins. We are a very close, very large family.
My mother is a breast cancer survivor of 21 years. She has been through it. I called on speakerphone and asked them to both get on the call. I calmly told them what the doctor had informed me. Their immediate response was silence. Then of course they had the same reaction as me which was 'How did they not know this before your surgery?' Then, they both started to cry. The hardest part was the fact that I found out about my cancer and they live 1800 miles away, and there was no way to cross the border to come to me and be here.
That conversation put my mind into a different mode. I knew right away that I had to be strong for my parents and my family. I took the attitude that I would be fine, that they probably got it all, that I am sure I could beat it, and that I wasn't afraid. And in a way, it was true. I can honestly say that at the time I was far more worried about how my parents, children, and siblings would take the news. I mean, I didn't feel any different other than half my uterus was gone and I was hopped up on a ton of pain meds.
After an emotional conversation, my mother decided that she thought my brother should know, and we agreed that we would wait to tell my boys until we knew more. My brother and I had the conversation and at first, he was a mess, but then I joked around with him and told him I would be fine. I think the cancer patient's attitude has everything to do with how others react. I was terrified but it made me feel better to be strong, and I know that strength reflected the way my family treated me and dealt with the news.
The Stress of Waiting and the Internet
After the shocking way that I was told I had cancer, I was also told that I would hear from an oncologist soon and we'd make an appointment to get to the next steps. Of course, I asked, 'Will I have chemo or radiation? How big is the tumor? What does Grade 2 mean?' I ultimately, like every other person in the world would do, sought answers on the internet.
I started reading every single thing I could find on Endometrial cancer. And when I decided that I wanted to hear firsthand from women who've had the disease, I joined an online group. Wow.. what an eye-opener.
First, I will say that the online group was probably the best decision I made in my journey. Regardless of how many great people and supportive family and friends are in your life, the only people who can truly understand what you are going through are people who are living the nightmare.
I am a pretty outspoken person, but for the first week, while I was in the group, I sat and read about other people's stories. The treatments for cancer seemed to depend on what stage and grade the women were had, and I noticed some similarities in treatments geographically. There were women from all over the world in the group. I didn't know anything about stages and grades, but I am now a pseudo- expert. Some of these women were in their final days in hospice with pain control being their last comfort. Some of the women simply had to have a laparoscopic hysterectomy and no further treatment. Many women were getting radiation, or chemo, or both. Lots of women were participating in trials, and many were taking immunotherapy like Keytruda.
I won't lie, I was terrified and worried about chemo and radiation, and other illnesses and side effects. But, the one thing that all of us had in common was fear. The other thing we all had in common was encouragement for ourselves and others. And the final thing was empathy- which was the most helpful 'therapy.'
While I was filling my head with the certainty of my impending death and suffering, I was still waiting for a call from my doctor's office to schedule an appointment with the oncologist. After not sleeping for three days with worry and fret, I called my doctor's office and basically lost my mind on the phone. The conversation went something like 'You people butchered me, left me in the hospital, then called me and blurted out I have cancer and I am laying here wondering what the hell is going on!!' Anyway, that conversation produced a dozen apologies and a call from the oncologist's office to set up an appointment for a week later. A WEEK. I had to worry and look up morbid things on the internet for a whole week, and pretend to my children that I was fine!
The worst part is not knowing, the worry, and the trying NOT to worry.
The Day of the Appointment
I am not really sure how I got through the prior week leading up to my appointment. I did a lot of reassuring everyone I loved that I would be just fine. The night before the appointment I lost it and I ugly-cried, hyperventilating to my mother on the phone. My sweet husband just held me, and then my mother told me she was glad I got that out, and she thought it would make me feel better. To be honest, it really did. It felt like 100 pounds had been lifted off my chest.
My husband took me to the appointment the next day. Due to Covid restrictions, he couldn't come in, but the doctor let him listen on speakerphone. I immediately loved her.
She came in with my chart and sat down and she was about the same age as me. I read glorious reviews about her. I had a giant book full of questions for her. As it turned out, I opened my mouth and started blurting out how I felt about the surgery, and how I was told about my cancer, and how upset I had been. She handed me a box of Kleenex.
She was so apologetic and upset at what I had gone through and promised me that she would do better.
She started out by having a big picture of the outline of a woman. She then began to draw a picture of where my cancer was. What they discovered was although my 'Stage' was only 1a, my 'Grade' was two because the tumor was embedded in the uterine wall. I will explain more about Stages and Grades after this discussion.
Because there were pre-cancer cells on the tops of my cervix which was left in, and because the first doctor left in the ovaries, The oncologist said she needed to remove them as soon as possible and dissect my cervix. The other problem I had was the first surgeon left me with a giant protruding hernia in my belly button because of all the digging she did, so the oncologist recommended that I see a separate surgeon for that. She suggested that they would coordinate the surgeries so they could be done in one day. She said she didn't think I would have to have chemo or radiation but I had to get a CT immediately so she could see if there were any extra growths.
Stages and Grading (in Layman's Terms)
The information above in the pictures with the stages and grading of Endometrial (also called Uterine) cancer is confusing. I will try and make them a bit more tangible.
FIGO is the system used for grading Endometrial or Uterine Cancer by Stage. If you have been diagnosed with Endometrial Carcinoma, you will hear the term 'FIGO' frequently from doctors or when doing research. It stands for International Federation of Gynecology and Obstetrics, and it is comprised of a group of international medical experts in the OBGYN field who set the standards for various levels and stages of Endometrial cancer. It's what's normal use by oncologists to label your stage of cancer so it can be treated properly.
My cancer was Stage 1a Grade 2. If you look at the chart, you'll see that would mean:
- My tumor was confined to my uterus with less than a 50% myometrial invasion.
- The grade of my tumor had a 6% to 50% nonmorular, solid growth pattern.
The word 'nonmorular' sounds made up. To make it simpler, the higher the grading system the more aggressive the cancer. The higher the grading system the more the cancer has invaded the endometrial wall.
In my case, the cancer was confined to the uterus, but since I had my uterus cut at the cervix and the ovaries were left in, my oncologist wanted to remove both immediately.
So, just to delve into the FIGO staging system and the grading system a little more-
- Example 1: If someone is diagnosed with Stage IVA, G3, that means the tumor is not contained within the uterus, but it has spread to the bladder or bowel, and that the type of cancer is aggressive.
- Example 2: If someone is diagnosed with Stage IIIC1, G1, that means that the cancer has spread to a lymph node(s) in the pelvic area, but the cancer is slow-growing and not aggressive.
It's important to know the stage and the grade of cancer for proper treatment. If for any reason your oncologist doesn't give you one or the other, be sure to ask. Several women on the forum I am in do not know their grade, and it's very upsetting, so I am not sure why some oncologists explain it and some don't. For example, stage 2, grade 1 is much different than Stage 1, grade 2.
My Personal Story Continued: Stage 1a, Grade 2
Knowing exactly what I was dealing with was a tremendous help. So was meeting my doctor. I had shopped for doctors originally, and I liked the second doctor and second opinion. I didn't like how everything turned out and I was mad at myself. I knew she didn't do a lot of things she should and to be honest, I was relieved because I didn't want to go through any more tests. However, this oncologist made me feel like I was her only patient and was awesome.
If you find yourself in a situation where you aren't comfortable with your doctor, it's definitely worth getting a second opinion if possible. I know that's not a possible scenario many times with people who live in countries with socialized medicine, but I would urge anyone who doesn't feel comfortable with her oncologist to try and get a different one. It's your life in their hands—not just a cold or the flu.
I had to go to the hospital and have my CT. I got to drink two giant milkshakes that tasted like berry flavoured chalk (so gross), and then when I was done, they put in an IV and injected me with iodine so the CT could be seen better by the radiologist. This is called 'contrast.' The iodine really just feels a little warm, especially in the groin area, and the process is painless.
My oncologist called me and said that the radiologist thought he found a big mass in the area but he didn't realize my cervix was left in so she was sure that was what it was. She was a bit worried that it was cancerous and 'mushy' (apparently she said she could 'feel' cancer by the consistency of tissue), so she told me that when she did the surgery she was going to perhaps do a lymph node dissection with a pelvic wash. After they did the 'wash' it would show if there was any cancer on my lymph nodes and if they looked suspicious, they would do a biopsy or 'dissection.'
They scheduled me for surgery about 4 weeks later because I needed time to heal from the first surgery. I had a team of three surgeons, the oncologist for the ovary and cervix removal, the general surgeon for the hernia repair, and then I had a urologist who was responsible for putting stents in my bladder tubes to get them out of the way for the surgery. They all came and met me beforehand, and they were all smiles and very kind.
I woke up, and I won't lie. . .I was in agony. But, my oncologist was happy to report that the cervical tissue felt firm and noncancerous and my lymph nodes were fine. I had told the doctor repeatedly that I didn't want to stay in the hospital and I wanted to go home. Well, I got my wish because of my previous experience but I ended up back in the hospital for a couple of days due to uncontrollable pain. I was never so glad to be back in a hospital bed in my life because I needed morphine.
I had 'robotic' surgery for the cervical dissection and the oophorectomy (ovary removal). It left 7 scars, all about an inch long in a sort of half-circle around my belly. I also have a big scar over my pubic bone from the botched hysterectomy.
The pain from the first and second surgeries was just too much for me to bear so they got it under control at the hospital and then sent me home when I was more comfortable. This is another thing I recommend- don't argue with the doctor if they say you need to stay because you probably do. Hospitals are miserable, but so is uncontrolled pain!
The above chart shows what the experts in endometrial cancer say the risks are for getting the disease.
My Personal Experience:
- I first got my period when I was 11 years old (early menarche).
- I was overweight.
- I eat a protein diet with little to no carbs (animal fat).
- I was 50 when diagnosed (age greater than 50).
- I am white (Caucasian women).
- And another one not mentioned on the list is I had polycystic ovarian symptoms, which is said to be a risk factor as well.
- Once I met the hundreds upon thousands of women in my online support group, the biggest common risk we all had was almost all of us were overweight. I am about 30 lbs overweight now, and I have lost 50lbs. Many of the women in the group were far heavier than 300lbs, and we all talked candidly about this very difficult and sensitive risk factor.
The other thing that we all sort of agreed on was that peri-menopausal women (like me at the time), are often overlooked for endometrial cancer. The reason being, the symptoms of menopause mirror the symptoms of endometrial cancer, so women in peri-menopause are often dismissed by doctors.
I went to two doctors who both said the same thing. 'Well, at your age we can give you something to stop the bleeding but the fibroids will shrink.' I was very upset to find out I had all of the symptoms of cancer but it took six months to find out because it seemed like doctors didn't want to bother with me. The bottom line: if you feel like something is wrong with your body, don't ignore it. Check it out and advocate for yourself.
Symptoms to Look Out for
As I mentioned before, I had fibroid tumors. My fibroids were giant, and they made my uterus practically the size of a basketball. I had no bladder control because I only had twenty percent use of it. It was crowding all of my organs. My liver was swollen and hurting. However, during Covid, I wasn't exactly a priority because I was a peri-menopausal woman.
If you have any of the symptoms above see a doctor. And if you feel like your doctor is blowing you off, see another one. Push, shove, advocate until the proper tests are done. Scream, throw a fit, demand to be seen. This is your life, not the doctor's.
How Is Uterine Cancer Diagnosed?
There are several ways one may be diagnosed with endometrial/uterine cancer.
- A doctor may do a pelvic exam and find a mass.
- An endometrial biopsy is performed and if the tissue of the inside of the uterus is examined.
- An ultrasound might show thickening of the uterine wall. 5mm or thicker may be a sign of uterine cancer. A vaginal ultrasound is sometimes performed as well.
- D&C or dilation and cutterage may be performed to get a sample of tissue from inside the uterus
- Cat scan (CT) or magnetic resonance imaging (MRI), or positron emission tomography (PET) may show a mass or tumor. The PET scan is normally an option after the cancer is diagnosed another way to see if it's spread.
- Molecular testing of the tumor is often used to diagnose the specific kind of cancer for treatment purposes.
My cancer was found in the pathology of my uterus after my first surgery. It should have been diagnosed much sooner but again, the doctor ignored my pleas and symptoms because of my age and peri-menopausal state. This is a common mistake made by doctors.
Many of the ladies in my support group had biopsies to get their results. Many had biopsies because they had ultrasounds showing thickening of the uterine wall. My oncologist told me that endometrial biopsies are the most common way she tests for cancer.
Treatment for Endometrial Cancer
Treatment for endometrial cancer will almost always involve removing the uterus, ovaries, and fallopian tubes. The first thing that new members of our support group ask about is the surgery. Most women who have been diagnosed with endometrial cancer get the surgery date quickly.
Your individual treatment plan depends on your diagnosis and your oncologist. I have known some women to simply have the surgery and then no further treatment is required. I personally had an odd situation where my cancer was found after my surgery so I had to have further surgery.
Some women undergo 'brachytherapy' which is a form of vaginal radiation. Others undergo chemotherapy and radiation. Some do one or the other. It really depends on the type of cancer cells involved and how far the cancer has spread.
If you are diagnosed with endometrial cancer, you are not alone. There are thousands of women out there who are undergoing the same thing and the same treatment as you. One of the most popular topics in my support group is to ask if anyone else has the same diagnosis or has undergone a certain prescribed treatment. So many women share the stories and gain strength from one another's journeys.
I just had my first follow-up. I was declared to have NED (no evidence of disease), which is just about the best news any cancer survivor can hope for! I will need to see my oncologist every three months for the next two years, and then every 6 months for the following 5 years. This is the typical time period for most patients' follow-up appointments.
If you have been diagnosed with Endometrial Cancer, I would strongly suggest you join an online support group. I belong to three different ones. Just search the internet for an active forum or use Facebook.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2021 Summer LaSalle