“A Journey of a Thousand Miles Begins With a Single Step.” – Lao Tzu
Most women diagnosed with uterine cancer will have surgery as the first step. The goal is to remove the tumor and some lymph nodes to get definitive answers as to what type of cancer it is, the grade and also the stage. These parameters are what are used to decide on adjuvant therapy, which includes chemotherapy, radiation, immunotherapy, hormone therapy or combinations of these.
The initial diagnosis via a uterine biopsy is somewhat limited as it cannot tell you the stage of the cancer and some things may be inaccurate. In fact, my initial biopsy showed grade 2 endometrial cancer, but after surgery it was classified as grade 3. Besides grading and staging, surgery will also remove a large portion or all of the tumor burden (called tumor debulking), which can prolong survival and make further treatments more effective.
1. FINDING THE RIGHT SURGEON AND PRE-SURGICAL PLANNING
The first thing to do before surgery is to make sure you are working with a good gynecologic oncologist. Pre-surgical care and planning is so important for the best outcome. This surgery should not be done by just any surgeon. A gynecologic oncologist specializes in care for women with uterine cancer.
2. DON’T RUSH INTO SURGERY IMMEDIATELY, BUT DON’T WAIT TOO LONG
I was so terrified after my diagnosis, that I rushed into surgery within 10 days without even knowing what was happening. I regretted that later when the doctor ordered a CT scan three weeks after surgery, which showed a tumor still in my body!
In one study, it was shown that women who rushed into surgery in the first 1-2 weeks after diagnosis had a lower survival rate than those who waited 3-4 weeks. However, if you waited too long, 8 weeks or more, the survival rate also dropped.
If you rush into surgery, the pre-planning and further testing and imaging may not be adequate, which is what happened to me. More on this below. If you wait too long, the cancer can spread making it more difficult to treat. Read More
3. ADVANCED IMAGING PRIOR TO SURGERY
Please talk to your gynecologic oncologist about doing some advanced imaging with a CT or Pet scan or MRI of the abdomen and pelvis or even the whole body to check for metastasis prior to surgery. Depending on your circumstances, this may not be offered. The doctors told me it was not necessary and I could go right to surgery.
I was so anxious to have the tumor out of my body, that I didn’t question this, but afterwards I really regretted that it wasn’t done. I found out the truth later. The only reason it wasn’t done is because insurance dictated that I didn’t fit the criteria for imaging before surgery. It had nothing to do with good medical practice. If you ask, many times doctors can make exceptions to these “rules” and still have insurance cover costs.
The reason for imaging prior to surgery would be if they find the cancer has already spread or invaded other organs this will help them to know what they are going to need to do in surgery and inform you ahead of time. It could also change their approach to surgery.
In my case, 3 weeks after surgery when they did a CT scan, there was still a small tumor present. It’s possible this would have been seen on a CT scan aiding the surgeon in where to look for it. I know a woman who went in for a hysterectomy and came out with a colostomy bag because they had to remove part of her colon due to spread! Had they done imaging prior to surgery, they may have known this and been able to discuss it with her ahead of time.
This may also save you from having more than one surgery. I have heard from women who had ovaries left in, only to find out they needed to be removed later on due to the grade and stage of cancer, which required a second surgery.
4. LYMPH NODE REMOVAL
Some lymph nodes will be removed during your surgery for staging purposes. The most common lymph nodes that are removed are the pelvic and/or para-aortic lymph nodes. Sometimes surgeons want to remove dozens of lymph nodes in an effort to eradicate spread of a cancer, but this is often unnecessary and can lead to major problems down the road. While it is important to take some lymph nodes for staging, by removing lymph nodes with cancer cells you are not increasing your chances of survival.
- WHAT ARE LYMPH NODES?
Lymph nodes are a part of our circulatory system and they maintain fluid balance by filtering and returning fluid from the tissues to the bloodstream. They are a very important part of our immune system forming antibodies to bacteria and viruses among other things. Cancer cells can pass from the tissues into the lymph nodes and then be spread elsewhere in the body.
Removing lymph nodes for biopsy can give prognostic information and guide treatment recommendations. However, excessive lymph node removal (depending on the location) can lead to chronic, painful conditions and loss of part of your immune surveillance in that area.
- CONS OF REMOVING LYMPH NODES
There are conflicting reports out there about whether extensive lymph node resection (also called pelvic lymphadenectomy) to effectively remove any residual cancer is necessary. Removing numerous lymph nodes adds to the surgical and anesthetic time, which can lead to a higher risk for complications. There are also complications that can occur after surgery, such as lymphedema or lymphocele formation. I will attach some studies here for your reference.
In my case, I specifically asked the surgeon not to remove multiple lymph nodes. I only wanted two removed, if possible, to know what stage of cancer I had. These studies show that performing pelvic lymphadenectomy does not improve disease-free interval or overall survival. I would discuss this with your surgeon prior to surgery.
Both early and late postoperative complications occurred statistically significantly more frequently in patients who had received pelvic systematic lymphadenectomy. Read More
Although systematic pelvic lymphadenectomy statistically significantly improved surgical staging, it did not improve disease-free or overall survival. Read More
Our results show no evidence of benefit in terms of overall or recurrence-free survival for pelvic lymphadenectomy in women with early endometrial cancer. Pelvic lymphadenectomy cannot be recommended as routine procedure for therapeutic purposes outside of clinical trials. Read More
5. WHAT YOU NEED TO KNOW ABOUT THE SURGERY
Uterine cancer surgery will be one of the following:
- TOTAL HYSTERECTOMY – The uterus and cervix are removed.
- RADICAL HYSTERECTOMY – The uterus, cervix, ovaries, and fallopian tubes are removed.
Typically a radical hysterectomy is performed, and some lymph nodes near the uterus are taken out for biopsy to see if the cancer has spread. There are some exceptions to this. For instance if you are of child bearing age and want to have children, speak to your doctor about this. They may opt for different options to allow you to have a child or save embryos before a hysterectomy.
For younger pre-menopausal women, they may opt to leave one or both ovaries in so as not to induce early menopause. Some women are unable to undergo a major surgery like this due to underlying health conditions and other treatments may be done first.
For the majority however, this is the first line of treatment.
- LAPAROSCOPIC VS. OPEN APPROACH
Surgery can be done via an open approach with a large incision or via laparoscopy with small incisions in the abdomen. My surgeon performed robot-assisted laparoscopy so I only had 5 small incisions instead of one large one to recover from. Laparoscopy is the ideal situation, but in some cases they may start with laparoscopy, but have to convert to an open approach if the cancer has spread and there is more to resect.
- OTHER INTRA-OPERATIVE PROCEDURES TO KNOW ABOUT
Depending on the extent of the cancer, other procedures may be done besides the hysterectomy. I mentioned the lymph node removal already. Some surgeons may opt to perform an “omentectomy”. The omentum is the lacy tissue surrounding your abdominal organs, holding them in place, and it is also an important part of the immune system. They sometimes remove this if there is concern that the cancer has spread there.
Sometimes pelvic and abdominal washing may be done. This is where they fill and flush the cavities with saline solution and then remove the fluid and check it for cancer cells.
If there is invasion of the cancer into the rectum or bladder, they may remove part of these organs. Sometimes a colostomy bag has to be placed if they remove part of the colon or rectum. Usually, this is a temporary situation.
6. POST-OP RECOVERY, WHAT IS IT REALLY LIKE?
Speaking from experience, while the post-operative recovery was not easy, it was not horrible. I do wish they would have kept me in the hospital the first night. I had a rough recovery with nausea, dizziness, pain and it was hard to get my breath because my abdomen was so distended. Not only that, but I had to suffer through a long car ride to get home. Every bump in the road was torture. If your insurance will allow it I would advise spending the first night of surgery in the hospital.
If doing laparoscopy, they have to fill your abdomen with a C02 gas to be able to see everything. Although they try to remove as much of the gas as possible before you wake up, there is still gas present and it is uncomfortable. Imagine being really bloated up after a giant Thanksgiving dinner for several days. Some women experience shoulder joint pain if the C02 gas migrates to the joint.
I found it difficult to eat much and get comfortable sitting or laying down. Fortunately, it only lasted about a week. As for pain, they did not give me any opioid medications. I was only supposed to take Tylenol and Ibuprofen, which didn’t really help much. Fortunately, I had laparoscopic surgery, so that is not as painful as a full open approach.
The incisions (if laparoscopic) heal quickly, but it is important to get enough protein in your diet and really take it easy for at least 4-6 weeks. This is also from experience. I did not eat enough protein, I started exercising too vigorously too soon and I wound up with an incisional hernia that has been very unpleasant and will need to be surgically corrected at some point! I haven’t done it yet.
So please go easy on yourself after your surgery and don’t be afraid to eat meat! Your recovery will be even longer if you have had an open approach to your abdomen or more extensive surgeries.
Many women suffer from fatigue after this surgery. I did not experience this, but that is likely due to the severe anxiety I felt. I did experience frequent urinations, difficulty emptying my bladder all the way, and cramping and pain in the pelvic area for a few weeks. The doctor will recommend stool softeners and a bland diet to keep your bowels moving. You do not want to have to push to have a bowel movement!
If you were pre-menopausal, you may start to suffer from menopausal symptoms if the ovaries were removed. These symptoms can include insomnia, hot flashes, night sweats, brain fog, and fatigue.
7. IMPORTANT SIDE EFFECTS TO BE AWARE OF
Side effects can occur immediately, within a few days, a few weeks, or even months and years after surgery. It is important to know about these potential side effects and discuss any problems you may be having with your surgeon right away.
a. Fatigue
b. Pain
c. Vaginal bleeding (you will need to wear thick pads for several days to a week after surgery)
d. Infections
e. Internal bleeding
f. Blood clots
g. Bladder or bowel problems
h. Although rare, damage to the ureters, the tubes that drain urine from the kidneys into the bladder, can occur leading to kidney problems later
i. Incisional or abdominal hernias
j. Scar tissue formation, which can lead to bowel obstruction later
k. Bowel obstruction. I know of at least 3 women that developed a bowel obstruction years after their surgery. This can happen anytime and is a major complication
l. Vaginal dryness, atrophy, scarring, painful intercourse
In conclusion, I would recommend that you discuss all of these things with your surgeon prior to surgery. You can get through this! You are stronger than you think!
ONE THING YOU CAN DO TODAY TO CONTINUE ON YOUR HEALING JOURNEY
Since you will be recovering from surgery, I recommend reading the following books. These books helped me tremendously when I was going through this whole process.
- Radical Remission – Surviving Cancer Against All Odds by Kelly A. Turner
- The Metabolic Approach to Cancer by Nasha Winters and Jess Higgins Kelley
- Dying to Be Me – My Journey from Cancer to Near Death to True Healing by Anita Moorjani
- Love, Medicine & Miracles – Lessons Learned About Self-Healing From A Surgeon’s Experience With Exceptional Patients by Bernie S. Siegel, M.D.
As for me, I will call upon God; And the Lord shall save me. – Psalm 55:16