What Is LGSOC?

What Are LGSOC Symptoms?

Low-grade serous ovarian cancer is hard to detect in its early stages. That's because its symptoms overlap with those of many other conditions. For instance, you could have:

• Bloating
• Belly pain
• Back pain
• Pelvic pain
• A full feeling soon after eating
• An urgent need to urinate (pee), or a need to pee more than usual
• Fatigue
• Pain during sex
• Abnormal vaginal pain, discharge, or bleeding
• Constipation
• Indigestion (heartburn)
• Weight loss for no reason

You don't need to have all these symptoms to have LGSOC. Listen to your body. If you have concerns about how you're feeling or changes you've noticed, check with your doctor.

How Is Low-Grade Serous Ovarian Cancer Diagnosed?

There's no specific test to screen for, or diagnose, LGSOC. If your doctor suspects you have ovarian cancer, they'll do a few different exams and tests to get more information. 

The results of these tests can confirm if you have low-grade serous ovarian cancer or rule out other diagnoses. It can also help your doctor choose the right treatment for you.

It's important to note that LGSOC is hard to diagnose. Even when experts look at LGSOC cells closely under a microscope, they appear a lot like healthy cells. It's not uncommon for pathologists who study the cells to get a second opinion before they can make their final diagnosis.

Genetic testing

Other tests can help your doctor identify specific gene changes, like KRAS, NRAS, and BRAF mutations, that are sometimes linked to LGSOC. The results probably won't change your treatment. But if the cancer comes back, they can help your doctor choose next steps.

You can also be tested for the BRCA gene mutation. This is inherited. If you have it, some of your family members may have it, too.

What Are LGSOC Stages?

Like all types of cancer, low-grade serous ovarian cancer grows and spreads over time, although it tends to do this more slowly than other cancer types. Your doctor will assign it a stage, based on things like:

• Where your cancer cells have been found
• The number of lymph nodes involved
• If cancer cells have broken free and traveled to other parts of your body

In stage I LGSOC, cancer cells are only in one or both of your ovaries. If you're diagnosed at stage II, cancer cells have spread to your uterus or another nearby organ. At stage III, cancer has spread into your lymph nodes or the lining of your belly.

Stage IV means that the cancer has spread to more distant organs. Usually, low-grade serous ovarian cancer is found when it's between stages II and IV.

Questions to Ask Your Doctor

You'll probably have a lot of questions after being diagnosed with low-grade serous ovarian cancer. Your doctor will be a great resource. Before your next visit, make a list of what's on your mind. For instance, you could ask:

• What stage is my LGSOC?
• Can I get a copy of my pathology report? What's in it that I should know?
• What other tests do I need?
• What other doctors will I need to see besides you?
• What treatment do you suggest and why?
• How soon should I start treatment?
• What can I expect from the treatment? 
• What risks or side effects should I be aware of?
• How will treatment affect my fertility (ability to have a baby)?
• Will I be cancer-free after the treatment?
• Am I a good candidate for a clinical trial? If so, how do I find one?
• How often do you treat people with LGSOC?
• Do I need to get a second opinion? If so, can you suggest a doctor?
• If I have questions about how much my treatment will cost, who can I talk to?
• Where can I find more resources or support?

Start with the questions you feel are most important. If you run out of time, ask your doctor if you can email the rest of your questions, or if they can give you information handouts to take home. 

Finding Expert Care

Because low-grade serous ovarian cancer is rare, not every oncologist (cancer doctor) will have treated it. If you can, seek care from a board-certified gynecologic oncologist. This type of cancer specialist has extra training and education in cancer that affects the female reproductive system.

A gynecologic oncologist is more likely to properly stage your cancer and completely remove your tumor during surgery. That can improve your outcome. 

You can ask your doctor if they can suggest a gynecologic oncologist. Some nonprofit groups, like the Ovarian Cancer Research Alliance, also have a free online search tool to help you find a doctor near you.

Being treated at a comprehensive cancer center will also give you access to cutting-edge research and treatments that you might not get at other medical centers. 

You can find a comprehensive cancer center through the National Cancer Institute.

Remember that you'll be working closely with your doctor. A good relationship with them is key. It's OK to seek a second opinion and talk to more than one doctor before you decide which one will manage your care.

How Is LGSOC Treated?

Treatment for low-grade serous ovarian cancer usually happens in stages. It will also depend on your cancer's stage, your overall health, and your preferences.

Surgery

Aggressive surgery is often the first step. Your doctor will need to remove any tumors that they can see. Often, they need to remove your:

• Ovaries (one or both)
• Fallopian tubes
• Uterus 
• Cervix
• Omentum, a layer of fatty tissue that covers your abdominal organs

During surgery, your doctor will collect small tissue samples from different areas. These will be tested at a lab to confirm your staging and get a better sense of how far the cancer has spread. Surgery and staging is often followed by monitoring for stages IA through IC.

Fertility-sparing surgery

If you have early-stage LGSOC in only one ovary, your doctor may be able to only remove it and the fallopian tube that connects to it, as well as your omentum and nearby lymph nodes. Your uterus and the other ovary will stay intact. This will preserve your fertility, allowing you to still be able to get pregnant one day.

Chemotherapy

After surgery, or if you can't have surgery right away, your doctor may treat you with several rounds of chemotherapy, like:

• Carboplatin, or
• Carboplatin with paclitaxel

Since LGSOC doesn't respond as well as other ovarian cancers to chemotherapy, your doctor may follow this with maintenance hormone therapy after surgery and chemo. 

Hormone therapy

After chemotherapy, or sometimes instead of it, you'll get a type of medication that affects the hormones in your body. They try to block cancer cells from using estrogen as "fuel" to grow.

Many of these drugs have been used as estrogen-sensitive breast cancer treatments for years. How they work depends on the type that you're prescribed.

Aromatase inhibitors, which keep fats and other tissues from making estrogen, include:

• Anastrozole (arimidex)
• Exemestane (Aromasin)
• Letrozole (femara)

Selective estrogen receptor modulators (SERMs) prevent estrogen from going inside cancer cells. Tamoxifen is often used for LGSOC.

Selective estrogen receptor degraders (SERDs), like fulvestrant (Faslodex), break down the estrogen receptors on cancer cells. 

Gonadotropin-releasing hormone (GnRH) agonists stop your ovaries from producing estrogen and progesterone. They include:

• Goserelin (Zoladex) 
• Leuprolide (Lupron)

You may need to stay on hormone therapy for the long term. Some clinical studies have shown improved progression-free survival with the addition of hormone therapy.

Targeted therapy

When LGSOC is diagnosed at an advanced stage, it's more likely to come back after treatment. If so, your doctor can prescribe a targeted therapy. These are newer drugs that can target specific cancer cells. 

Avutometinib and defactinib (Avmapki Fakzynja Co-Pack) are drugs that work together to block three pathways – MEK, RAF, and FAK – that cancer cells need to grow. It's the first FDA- approved treatment for LGSOC.

Avutometinib and defactinib are most effective if you have a KRAS mutation. But research is ongoing to see how much this treatment can help with other types of LGSOC.

MEK inhibitors, which block the MEK protein that helps tumors grow, are another treatment if LGSOC comes back. Your doctor could prescribe:

• Binimetinib (Mektovi)
• Selumetinib (Koselugo)
• Trametinib (Mekinist), which is approved to treat other types of cancer but can be prescribed "off label"

Researchers keep looking for more targeted treatments for recurring LGSOC. One type that shows promise is CDK 4/6 inhibitors. CDKs are special proteins that cause your cells to divide too quickly when you have LGSOC. This type of medication would block them.

Clinical Trials

Clinical trials test new medicines, treatment approaches, or treatment combinations. When you volunteer to be part of a clinical trial, you may get access to new treatments that aren't yet available to the public. You'll be under the care of a doctor and you won't be given a placebo drug (fake medicine.)

Talk to your doctor about how to find one that may be helpful for you or search for trials in LGSOC at ClinicalTrials.gov.

What are Low-Grade Serous Ovarian Cancer Treatment Side Effects or Complications?

Some of the most common side effects you could have from treatment are:

Menopause

If both your ovaries need to be removed, your hormone levels will drop and you'll go into menopause (no longer have periods.) This transition happens much faster than natural menopause and can cause side effects like:

• Hot flashes
• Trouble thinking and remembering things
• Insomnia
• Mood changes like anxiety and depression
• Vaginal dryness
• Pelvic floor changes 
• Pain during sex
• Joint pain
• Thinning hair
• High cholesterol
• Decreased bone density

Hormone replacement therapy (HRT) is often used to ease these symptoms during natural menopause, but it isn't safe when you have LGSOC. That's because low-grade serous ovarian cancer is estrogen-sensitive. The estrogen you get from HRT could cause cancer cells to start growing again.

Infertility

LGSOC treatment can make you unable to get pregnant one day. That can be really hard to hear, even if you don't have plans right now.

Before you begin treatment, talk to your doctor about your options. That could include:

• Freezing your eggs
• Egg donation
• Surrogacy
• Adoption

Secondary cancer

After your cancer treatment, your doctor will closely monitor you to make sure the cancer doesn't return. One way they can do that is with regular imaging tests.

Rarely, the radiation from CT scans can cause another type of cancer, or what's called a secondary cancer. MRIs have a lower risk. But your health plan may not cover the cost, and you may pay more out of pocket.

Taking Care of Yourself with LGSOC

It will take time to find your "new normal." Take small steps to take care of yourself along the way.

To stay organized:

• Ask your doctor if you can record your visit on your phone. 
• Set phone alerts so you remember when to take medication.
• Download free spreadsheets from the American Cancer Society to keep track of things like appointments, side effects, and pain levels.

To stay informed:

• Get copies of your test results and surgical reports.
• Write down questions and bring them to your doctor visit.
• Ask your doctor about anything you don't understand. You could ask, "Can you explain that in a different way?"

To manage your symptoms and side effects:

• Talk to your doctor about non-hormone treatments that can help with menopause side effects.
• Try pelvic health therapy to restore strength to your pelvic area and improve bladder/bowel function.
• Find ways to maintain your sex life, like talking openly with your partner, using lubricants to reduce vaginal dryness, or meeting with a sexual therapist.

What to Expect

After treatment, your doctor will keep a close eye on your health. There's no standard way to do this.

Generally speaking, every three to four months for the first two years after you were diagnosed, you may have:

• Blood tests (including the CA-125 blood test) 
• Imaging scans of your chest, pelvis, and belly 

After two years, you may get these screenings every six months.

After five years, if there's still no sign of LGSOC, these scans may be scheduled further apart.

If you still have an ovary, your doctor may also regularly check it by ultrasound.

If you still have a cervix/uterus, you may need regular cervical screenings.

How Your Condition Might Change Over Time

You can live with LGSOC for many years. During that time, it will be important for you to manage your symptoms while figuring out how to maintain a good quality of life.

At least 50% of the time, low-grade serous ovarian cancer comes back after treatment. This is more likely to happen within five years, but sometimes it happens later.

What are the survival rates for low-grade serous ovarian cancer?

LGSOC outlooks can vary. It depends a lot on the stage in which you were diagnosed.

Stage I LGSOC

Ninety percent of people with stage IA or IB, and at least 50% of people with stage IC, can be cured. In other words, your cancer never comes back after treatment. 

Stages II to IV LGSOC

Fifty percent of people who are diagnosed in these stages of LGSOC live 10 to 12 years or less. It's also possible that you'll  live longer than 12 years, and your cancer never returns.

What affects my LGSOC prognosis?

You may have a better outcome if:

• All visible cancer can be removed with surgery.
• The cancer doesn't grow or come back for a long time.
• You have a KRAS/NRAS/BRAF mutation.
• You don't smoke.
• You have a BMI less than 35.
• You're at least 35 years old when you're first diagnosed.
• Your LGSOC was found at an earlier stage. 

Your doctor is the best person to talk to about your specific outlook and most likely outcomes.

Getting Support

Finding out that you have LGSOC can feel overwhelming. You don't need to figure out your treatment journey alone or all at once. Your doctor can help connect you to local resources. You can also reach out to trusted national nonprofits like the American Cancer Society, Ovarian Cancer Research Alliance, and the National Ovarian Cancer Coalition.

For no cost, they offer services like:

• Help finding a doctor or clinical trial
• One-on-one counseling
• Virtual support groups 
• Caregiver support groups 
• Peer mentoring 
• Online information sessions, to help you better understand LGSOC
• Rides to cancer-related doctor visits
• A place to stay, if you need to travel for cancer treatment
• Resources that may help pay for your cancer treatment

Caring for Your Emotional Health

Managing LGSOC is different for everyone. There's no right or wrong way to feel, and the feelings you have could change minute by minute.

To care for your mental health, try these tips:

Keep living your life. As much as you can, stick to your daily routine and try to keep your life "normal."

Learn more about LGSOC. Feeling informed can help you feel more in control.

Get moving. Exercise doesn't just help you stay physically strong. It can reduce stress and boost your mood. Ask your doctor which types are safe for you to do.

Spend time in places that make you feel hopeful. For some people, that's church. For others, it's outside in nature.

Look for reasons to laugh. Watch a funny movie, listen to a comedy podcast, or ask friends to send you goofy TikToks. Laughing triggers "feel-good" chemicals in your brain. 

Surround yourself with things that bring you joy. Even the small things count, like wearing a fuzzy pair of socks or curling up on your couch with your dog.

Plan something to look forward to. Whether it's a bucket list trip or a video chat with an old friend, you'll have something to prepare for and feel excited about.

Explore mindfulness-based treatments. Yoga, meditation, breathwork, progressive muscle relaxation, and visual imagery could all help. 

Ask for more support. Consider talking to a therapist. If you feel down for more than two weeks, let your doctor know. You may have depression that needs to be treated. If you have thoughts of suicide, call, text, or chat to 988 to connect with a counselor at the 988 Suicide and Crisis Lifeline. Dial 911 for emergencies.

Information for Caregivers

If you're caring for someone  with LGSOC:

Provide day-to-day help. That could include making a list of all their medications and when to take them, babysitting, bringing meals, or running errands to keep their life, and their family's life, running smoothly.

Be there for doctor appointments. If you can't be there in person, listen in by phone. Take notes of what the doctor says, and ask questions your loved one might forget to bring up.

Offer emotional support. You don't need to always know the "right" thing to say. Keeping your loved one company or letting them vent will remind them that they're not going through this alone.

Talk to your doctor about genetic testing. If you're related to the person you're caring for, genetic testing could help you understand your own risk of LGSOC. Your doctor can help you understand if this is the right choice for you.

Don't forget to take care of yourself. Caring for a sick loved one can be physically and emotionally tough. Do your best to get rest, eat well, exercise, and find ways to relax and unwind. 

Takeaways

Low-grade serous ovarian cancer is a rare disease that's hard to detect. You may have it for years before it's diagnosed. LGSOC grows very slowly, so chemotherapy, which targets fast-growing cells, can't treat it very well. But researchers keep learning more about this rare disease, and treatments for LGSOC keep getting better.

Low-Grade Serous Ovarian Cancer FAQs

What is the typical prognosis for LGSOC?

Your outcome after low-grade serous ovarian cancer treatment depends on many things, including how early your diagnosis was made. Stage I LGSOC can often be cured, while a more advanced cancer has a 70% chance of returning after treatment. Your doctor can give you a better idea of your own personal prognosis.

What's the average age to get LGSOC?

Half of all people who get low-grade serous ovarian cancer are younger than 45 years. Generally speaking, it affects more younger women than other types of ovarian cancer.

What are the first signs of LGSOC?

Early symptoms of low-grade serous ovarian cancer are not specific but can include bloating, pelvic pressure or pain, irregular vaginal bleeding, nausea and vomiting, feeling full soon after eating, and bowel or bladder changes. If your symptoms last more than two weeks, check with your doctor.

How common is low-grade serous ovarian cancer?

LGSOC is considered a rare disease. Out of every 100 people with ovarian cancer, only two to five people are diagnosed with LGSOC. Worldwide, between 65,000 and 160,000 people live with it. One survey found that 99% of people had never heard of LGSOC before they were diagnosed with it.