Low-grade serous ovarian cancer guide
Being diagnosed with low-grade serous ovarian cancer (LGSOC) may feel scary and overwhelming.
Because it is a rare form of ovarian cancer, it can be more difficult to find information and resources or to know where to turn for support.
We’ve created this comprehensive, easy-to-understand guide to serve as a helpful resource for people newly diagnosed with low-grade serous ovarian cancer, those experiencing a recurrence, and the caregivers, family, and friends of those diagnosed with this disease. Additionally, gynaecological oncologists and medical oncologists who treat patients with LGSOC may find this guide helpful.
This guide was created to:
- Be a go-to resource after diagnosis and provide an overview of LGSOC.
- Give people impacted by LGSOC an understanding of the fundamentals of the disease, along with the basic knowledge they need to recognise and access good medical care.
- Help people diagnosed with LGSOC be informed and feel empowered to take an active role in their medical decision-making.
- Introduce women diagnosed with LGSOC to our organisation and the resources we provide.
About the LGSOC Initiative
The Low-Grade Serous Ovarian Cancer Initiative’s mission is to radically improve the survival of people with low-grade serous ovarian cancer through research and to provide good information to enable and empower women to make informed decisions about their care.
On this page:
What is low-grade serous ovarian cancer
Low-grade serous ovarian cancer (LGSOC), also called low-grade serous carcinoma (LGSC), is a unique type of ovarian cancer that disproportionately affects younger women. It develops in the surface cells of the ovary, fallopian tube, or peritoneum (lining of the abdomen), often from a precancerous condition called a serous borderline tumour.
LGSOC is the fourth most common subtype of ovarian cancer. Approximately 2% to 5% of people diagnosed with ovarian cancer have LGSOC and, worldwide, it’s estimated at least 65,000 people are living with LGSOC.
Though LGSOC is typically a slower-growing form of ovarian cancer, it can be challenging to treat if the cancer has spread beyond the ovaries. Diagnosis at stage I, when the cancer is contained to the ovaries, is rare. This is because the symptoms tend to be vague and nonspecific (for example, abdominal bloating and fatigue), and may be mistaken for less serious issues.
LGSOC is completely distinct from the more common high-grade serous ovarian cancer (HGSOC) subtype, and it is treated differently. Generally speaking, LGSOC does not turn into HGSOC, though a small percentage of people will be diagnosed with both cancers at the same time.
How is low-grade serous ovarian cancer diagnosed?
People may experience symptoms for months, sometimes even years, before they are diagnosed. Though less common, it is also possible to be diagnosed with advanced LGSOC and only experience symptoms for a short time.
Symptoms
The symptoms of LGSOC are the same as those of other ovarian cancers, and may include any of the following:
- Bloating
- Eating less and feeling fuller
- Abdominal/pelvic/back pain
- Needing to urinate frequently or urgently
- Bowel habit changes
- Indigestion
- Painful intercourse
- Abnormal vaginal bleeding or discharge
- Unexplained weight change
- Fatigue
Tests
If someone is experiencing symptoms consistent with ovarian cancer, a pelvic exam, CA-125 blood test, and imaging (transvaginal ultrasound, CT or MRI) should be performed.
CA-125 is a protein that can be elevated in people with ovarian cancer. CA-125 is said to be elevated if the blood test result is a number greater than 35 units/mL. However, CA-125 levels are generally less elevated in people with LGSOC compared to people with HGSOC.
Occasionally, someone with LGSOC may have a normal CA-125 level, so it is crucial that testing includes some form of imaging too.
Diagnosis
LGSOC affects the fluid-producing cells that line the surface of the ovary or peritoneum. Serous carcinoma means cancer of the serous epithelium. LGSOC is an invasive, destructive cancer, but its cells look more like non-cancerous cells than HGSOC cells do, and LGSOC cells divide at a slower rate than HGSOC cells.
To determine the type of ovarian cancer a person has, a sample of the cancer will be examined under a microscope by a pathologist. Because LGSOC is a rare cancer, the pathologist will often get a second opinion to confirm the diagnosis.
Immunohistochemical testing is a special staining test that looks for specific protein markers associated with different types of ovarian cancers; these can help the pathologist make the diagnosis of LGSOC. LGSOC has normal TP53 protein staining and usually expresses estrogen receptors (ER+).
It is critical to establish the exact diagnosis before starting treatment because LGSOC, HGSOC, and borderline tumours can look similar, but each must be treated differently.
Development and risk factors for low-grade serous ovarian cancer
People diagnosed with LGSOC may be thinking, “Did I do something to cause this?” In general, there is very little anyone can do to reduce their risk of LGSOC and, based on current information, LGSOC is not hereditary. Many people with LGSOC are young, active, and otherwise healthy prior to their diagnosis.
By all other measures, I was a perfectly healthy 30-year-old woman. My doctors even said so just weeks before my stage IV LGSOC diagnosis.
I’ve racked my brain to figure out how this happened to me. I’ve lived with my sister most of my life, ate the same meals, shared a workout schedule, took oral contraceptives — we’ve done everything together. I had stage IV LGSOC and she doesn’t. It was just random bad luck.
Morgan, diagnosed with LGSOC at 30-years-old
The median age for LGSOC is approximately 45 years old, however, it is not uncommon for women to be diagnosed in their 20s and 30s, and some are diagnosed in their teens.
60% of people diagnosed with LGSOC also have serous borderline tumours, a precancerous condition that can develop into LGSOC. This development is thought to occur in a stepwise fashion:
- Benign serous cystadenoma/adenofibroma – a noncancerous growth on the fallopian tube or ovary that is usually harmless and doesn’t require medical treatment. →
- Serous borderline tumours – a precancerous growth on the fallopian tube, ovary, or peritoneum that is rarely life-threatening but can spread and is usually treated with surgery. →
- Low-grade serous carcinoma – cancer of the fallopian tube, ovary, or peritoneum that may be life-threatening, can spread and is usually treated with a combination of surgery and cancer medicines.
The risk of developing LGSOC from serous borderline tumours is rare when the borderline tumours are found at the earliest stage, but at least two in 10 people with advanced-stage borderline tumours will go on to develop LGSOC in their lifetime.
Stages of low-grade serous ovarian cancer
After diagnosis, doctors will determine what “stage” the cancer is. The stage of cancer is typically determined by a combination of factors, including the location of the tumour, the number of lymph nodes involved, and the presence or absence of distant metastasis.
Different stages of cancer require different treatment approaches, and knowing the extent of the cancer can help doctors decide which treatment options will be most effective. Additionally, cancer staging is a valuable tool for predicting a patient’s outlook and providing information about their chances of survival.
Knowing the stage of cancer can help people diagnosed and their families make informed decisions about their treatment and prepare for what lies ahead.
Stage 1
Cancer is in one or both ovaries
- Stage IA: Growth is limited to one ovary with no tumour on the outside surface
- Stage IB: Growth is limited to both ovaries with no tumour on outside surfaces
- Stage IC: Tumour is either stage IA or IB but with tumour on surface of one or both ovaries, or rupture of the tumour before or during surgery, or cancer cells found in ascites (fluid in the abdomen) or washings taken during surgery
Stage 2
Cancer has spread to the uterus or other nearby organs in the pelvis
- Stage IIA: The cancer has spread to the uterus and/or fallopian tubes
- Stage IIB: The cancer has spread to other organs or tissues in the pelvis
Stage 3
Cancer has spread to the lymph nodes or upper abdominal lining
- Stage IIIA: Cancer has spread outside the pelvis to the retroperitoneal (behind the peritoneum) lymph nodes, or there is spread in the peritoneum that can only be seen with a microscope
- Stage IIIB: Cancer has spread to the peritoneum but the areas of cancer spread are ≤ 2 cm in diameter. There may also be cancer in the retroperitoneal lymph nodes.
- Stage IIIC: Cancer has spread to the peritoneum and is > 2cm in diameter. There may also be cancer in the retroperitoneal lymph nodes.
Stage 4
Cancer has spread to distant organs, such as the lungs or liver
Tips for medical appointments
It can be helpful to:
- Bring a support person to your appointments. If they are not able to attend in person, they may be able to participate via phone or video call.
- Write down your questions in advance.
You can:
- Ask to record the appointment.
- Ask to receive a copy of all of your current and future medical correspondence and records.
It’s your right to:
- Have your medical care explained in a way that you can fully understand. If you do not understand what your provider is saying, you can ask questions until you do.
Questions to ask your doctor
As mentioned, it may be helpful to write down a list of questions before your appointment. Here are some examples of questions you might like to ask your provider at your appointments:
- What treatments do you recommend?
- Will I have more than one treatment?
- What are the risks and benefits of each treatment?
- Are there any alternative treatments I could consider, and if so, what are the pros and cons of each?
- Will my age, general health, and other factors affect my treatment choice?
- Are there any clinical trials I can participate in?
- How many people with my specific cancer have you treated?
- Can you help me get a second opinion?
- How soon should I start treatment? How long does treatment take?
- Where will I be treated? Will I have to stay in the hospital?
What can I do to prepare for treatment? - Is there a possibility I will require a stoma? (Sometimes if parts of the bowel are removed during surgery, an alternative opening in the abdomen, called a stoma, is needed to eliminate faeces.) If so, do you think the stoma would need to be temporary (reversible) or permanent?
- Is fertility treatment or a fertility preservation procedure an option?
- Can you recommend a pelvic floor physiotherapist?
- Can you help me find a psychologist or counsellor?
- Can I get genetic testing?
- What are my options for genomic or molecular profiling of my tumour?
- What symptoms and/or side effects should I look out for during treatment?
- What treatment options are available for these symptoms and/or side effects?
- Is there any additional health monitoring I should have while on this treatment (e.g. heart health, bone density, etc.)?
- How much will treatment cost?
- How can I find out about financial support?
- How likely is it that I’ll be cancer-free after treatment?
- What is the chance that the cancer will come back?
- How long will I receive treatment for? What should I do after I finish treatment?
- What support services are available (e.g. cancer nurses, support groups, oncology social worker, supportive care, integrative medicine consult, physical therapy, financial assistance, charities that offer support, etc.)?
- Are there any ways that my experience could help others? (for example, sometimes cancer tissue can be used in research to understand the disease better)
Considerations when making a treatment related decision
- B: What are the benefits of making this decision?
- R: What are the risks associated with this decision?
- A: Are there any alternatives?
- I: How do I feel? What does my gut tell me? Are all the options good options? (Intuition)
- N: What if I decide to do nothing/wait and see? What happens next? How much time do I have to decide?
Low-grade serous ovarian cancer treatment
Treatment for LGSOC typically involves several different components. Here’s what to expect.
Surgery
LGSOC is usually treated first with aggressive surgery, called tumor-debulking or cytoreductive surgery. People have better outcomes when this surgery is performed by a specialist gynaecological cancer surgeon, called a gynaecologic oncologist. The goal of surgery is to determine the extent to which the cancer has spread and remove all visible cancer.
Surgery usually involves the removal of both ovaries and fallopian tubes (salpingo-oophorectomy), the uterus and cervix (hysterectomy), and the omentum (omentectomy). The omentum is a fatty bit of tissue at the top of the abdomen that does not perform a vital function but in ovarian cancer is a frequent location of cancer cells.
The surgical procedure will provide comprehensive staging information (where small samples of the surrounding areas are surgically removed) to determine the spread, or metastasis, of the cancer.
Depending on the extent of metastasis, some of the bowel, liver, lymph nodes, or other organs may also be removed.
If part of the bowel needs to be removed, sometimes a stoma (alternative opening in the abdomen to remove feces) needs to be created. This may be temporary or permanent. If this is a possibility, the surgeon will usually discuss it prior to surgery.
Fertility considerations
Surgical removal of both the ovaries and the uterus causes infertility.
In stage IA-IC, if the cancer is contained within one ovary, fertility-sparing surgery where just the affected ovary is removed (with conservation of the other ovary and/or uterus), may be possible. Uncommonly, even in cases of stage II-III LGSOC, a normal ovary and/or uterus may be preserved. However, the risks associated with this management and any pregnancy are unknown and should be discussed with your gynaecological oncologist.
For women who do have a retained ovary, periodic monitoring with ultrasound is recommended, in addition to the routine monitoring discussed later in this guide.
Women who retain their uterus and/or cervix should continue cervical screening as per local guidelines.
Fertility treatment to extract eggs prior to or following surgery may be an option. Some doctors believe that the treatment used to stimulate the ovary to produce eggs may encourage LGSOC growth but there is not currently enough evidence on this subject. An aromatase inhibitor (such as letrozole) can be given with gonadotropins during treatment to reduce exposure to estrogen, without compromising the effectiveness of fertility treatment.
If you are interested in fertility-sparing surgery or egg extraction talk to your gynaecological oncologist to see if you are a candidate for this type of procedure and consider consulting with a reproductive endocrine infertility subspecialist.
Neoadjuvant therapy
Some people newly diagnosed with LGSOC have very extensive disease, and initial cytoreductive surgery may not be able to remove all or most of the tumours. In these situations, neoadjuvant treatment followed by interval cytoreductive surgery and then further systemic therapy (such as chemotherapy and/or hormone therapy) may be considered.
Neoadjuvant therapy is when treatment is given prior to surgery with the intention of shrinking the cancer. In contrast to HGSOC, the threshold for offering neoadjuvant treatment in patients with LGSOC is very high, meaning it should only be offered when surgery is unlikely to remove all or most of the visible cancer; or in individuals who have significant co-morbidities (other serious medical conditions) where surgery is not safe or in their best interest. This is because LGSOC often has a suboptimal response, i.e. doesn’t respond as well to chemotherapy as HGSOC does.
Depending on the experience your doctor has with LGSOC, it may be worth seeking a second opinion before starting neoadjuvant treatment; ideally, you want to see a provider who has experience specifically with LGSOC.
Currently, the standard neoadjuvant treatment consists of chemotherapy (carboplatin and paclitaxel), however, in 2022, results from a small clinical trial suggested that fulvestrant (a type of hormone therapy) combined with abemaciclib (a CDK4/6 inhibitor) may be more effective than chemotherapy. This was a small trial, and it may be difficult to draw conclusions because of its size. You should speak to your oncology team if you want to know more.
Medical treatment
Treatment will vary as a result of the stage at diagnosis.
Stage I
If the cancer is diagnosed at stage IA or IB, surgery may be the only treatment that is required. If the cancer is diagnosed at stage IC, surgery alone, or three to six rounds of IV paclitaxel/carboplatin chemotherapy or hormone therapy are options.
Stage IA and IB
Surgery may be the only treatment that is required
Stage IC
Options include:
- Surgery alone
- Three to six rounds of paclitaxel/carboplatin chemotherapy +/- followed by hormone therapy
- Hormone therapy
Stages II – IV
Most people receive either:
- Six rounds of carboplatin and paclitaxel chemotherapy followed by hormone therapy (most commonly an aromatase inhibitor, e.g., letrozole or anastrozole), or
- Hormone therapy on its own (most commonly an aromatase inhibitor, e.g., letrozole or anastrozole), or
- Six rounds of carboplatin and paclitaxel chemotherapy with bevacizumab (a type of antiangiogenic therapy that blocks new blood vessels from forming in tumours, which may prevent the cancer from growing or cause it to shrink; also called Avastin) during and after completion of chemotherapy.
In 2026 a clinical trial called NRG-GY019 published results showing chemotherapy followed by a type of hormone therapy called letrozole works better than letrozole alone for stage 2-4 LGSOC, when there is visible cancer remaining after surgery. Listen to a Podcast with clinical trial lead Dr Amanda Fader on YouTube or Spotify discussing the findings.
Aromatase inhibitors are given alone post-menopause. If an ovary is retained in pre-menopause, a GnRH agonist like Zoladex will be used to induce medical menopause, in addition to an aromatase inhibitor.
The optimal length of time for receiving hormone therapy is unknown, and the general advice is that people should continue taking it for as long as it keeps working.
Learn more about hormone therapy in our guide to hormone therapy.
Clinical Studies
Clinical studies are a type of research for which people with low-grade serous ovarian cancer and low-grade serous peritoneal cancer can volunteer. They help doctors gain a better understanding of how to treat low-grade serous ovarian cancer (LGSOC).
Clinical studies include clinical trials and observational studies. They can be for newly diagnosed, recurrence or any point from diagnosis.
For more information visit our clinical trials page.
Genetic testing
Genetic testing provides doctors with further information that can sometimes identify additional treatment and clinical trial options for people with ovarian cancer.
There are two main types of genetic tests commonly performed in patients with LGSOC:
BRCA testing
Mutations of the BRCA gene occur in fewer than 6% of LGSOC cases and are thought to be incidental, rather than contributory, to the development of the cancer. However, because BRCA mutations can be hereditary and therefore have implications for both an individual and a family’s risk of cancer, testing is often recommended. This is usually performed via a blood test, and sometimes through a saliva test. At the time of writing, there is no data on the use of PARP inhibitors (a targeted treatment approved for HGSOC in women with BRCA mutations) in BRCA-mutated LGSOC.
Genomic Tumour Profiling
More extensive genetic testing of the tumour is possible through some hospitals, and is also offered via some commercial tests such as Foundation One and Caris Life Sciences. Testing is usually done on a preserved sample of tumour, like that routinely removed during cancer surgery. The most commonly found mutations in LGSOC are mutations in the KRAS, NRAS, or BRAF genes.
Generally speaking, the initial treatment of LGSOC is not changed by the results of the tumour testing. However, in recurrence, the results can sometimes influence treatment choice or the availability of clinical trials.
Use of supplements and complementary therapies
Before considering supplements and complementary therapies, people should always discuss them with their gynaecological oncologist, medical oncologist, and/or pharmacist.
Some complementary therapies can reduce the effectiveness of cancer treatments or increase the risk of complications.
For general information about common herbs, vitamins, and supplements and their efficacy and safety in a cancer setting, see Memorial Sloan Kettering Cancer Center’s online guide and database About Herbs, Botanicals, and Other Products.
Side effects
As with other cancers, treatment for LGSOC can result in other side effects. Here are a few of the most common ones.
Menopause
In people who have not been through menopause, surgery to remove both ovaries will induce surgical menopause. If the ovaries are not able to be surgically removed medical treatment to induce menopause will usually be given.
In age-related menopause, hormone levels decrease to a low base level slowly over a period of years. Conversely, in surgical and medical menopause, hormone levels drop suddenly in a matter of days or weeks, while additional anti-estrogen hormone treatment may reduce estrogen levels even further than natural menopause.
This sudden drop in hormone levels can cause symptoms that are much more severe than age-related menopause. These could include:
- Hot flashes (tips to manage hot flashes)
- Cognitive and memory changes (tips to manage cognitive changes)
- Vaginal dryness (tips to manage vaginal dryness)
- Reduced bone density
- Painful sex (tips to manage painful sex)
- Pelvic floor muscle dysfunction (tips to manage pelvic floor changes)
- Joint pain (tips to manage joint pain)
- Anxiety and depression (information about ACT therapy – a type of talk therapy that can be helpful)
- Hair thinning
- Insomnia
- Increased blood cholesterol levels
- Other side effects
People who experience surgical or medical menopause should receive monitoring for bone density and cholesterol.
Non-hormonal treatments can assist with many of the side effects.
Read more about hormone therapy side effect management in our guide to hormone therapy.
Hormone replacement therapy (HRT) is not recommended
Systemic hormone replacement therapy (such as tablets and patches) is not recommended. This is because LGSOC is sensitive to estrogen and HRT may encourage or stimulate LGSOC growth.
It is unknown whether local vaginal estrogen is safe in LGSOC. In theory, vaginal estrogen does not raise the levels of estrogen in the blood, but it may be absorbed locally into surrounding areas where cancer cells could be present.
Care should also be taken with natural menopause supplements, as these often contain compounds that mimic estrogen — and therefore, similar to HRT, could also potentially drive LGSOC growth. Always talk to your doctor before taking any remedies for menopause systems, whether they be pharmacologic or holistic.
Infertility
Many people struggle with feelings of grief and regret relating to infertility. Even if someone does not want children, it can be difficult or painful if that choice is taken away, and seeing a psychologist, counsellor, or social worker may help process these feelings. Additionally, a support group specific to infertility in cancer survivors could also help by connecting with others with similar experiences. Some adolescent and young adult support groups or programs may offer sessions specifically about fertility challenges.
While biological children may not be an option, some people with LGSOC pursue surrogacy (with or without egg donation) and adoption.
Like many others, the diagnosis of ovarian cancer was devastating unto itself, but the loss of my fertility and dream of carrying a child plunged me into intense grieving. Fast-forward five years, I am a mother against all odds through surrogacy.
My son is the product of love, hope, faith, and perseverance. I couldn’t have reached where I am now without my husband’s strength, sacrifice, and resolve. We faced and overcame a range of challenges on our way to parenthood.
In the end, my sister-in-law carried our baby boy for us, adding yet another layer of beauty to our story. Friends, family, healthcare professionals, and strangers have showered us with compassion and kindness. I am so grateful for the silver lining of our journey.
Spring, diagnosed with low-grade serous ovarian cancer at 39 years old
Monitoring
There is no universally agreed-upon monitoring for LGSOC after completing first-line, or primary, treatment, but most people will receive CA-125 blood tests and chest/abdomen/pelvis CT scans every three to four months for the first two years after diagnosis, then every six months. After five years with no evidence of disease, the frequency of scans may be reduced.
About one-third of people with LGSOC who experience recurrence will have a normal CA-125 level. This is why some form of imaging is strongly recommended in addition to the CA-125 blood work.
The radiation from CT scans can in rare cases cause secondary cancer; because of this, some doctors prefer MRI scans, though with MRIs the actual scan process takes longer, and they are more expensive than CT scans.
PET-CT scans are not commonly used for monitoring, but if a recurrence is found, they can sometimes help surgeons decide whether to perform secondary cytoreductive surgery.
Recurrence
Recurrence, when the cancer regrows following treatment, is thought to be decreasing with advances in surgery and the increased use of aromatase inhibitors (a form of hormone treatment). Even so, at least half of all people with LGSOC will experience a recurrence at some point.
Recurrence is most likely to happen within the first five years after diagnosis, but it is still possible after five years.
Secondary surgery
If the cancer returns, secondary surgery may be considered. On average, people who have a recurrence live longer if the visible cancer is able to be fully removed with secondary surgery. The prevailing thought is those with a limited number of tumour sites that can be removed are the best candidates for secondary surgery. If someone has recurrence with several small implants (small areas of cancer growth) scattered throughout the peritoneal (abdominal) cavity, secondary surgery may not be recommended. However, different doctors have different views on this.
At the time of writing, there is no data on the use of hyperthermic intraperitoneal chemotherapy (HIPEC) surgery, which can be used to treat some cancers in the abdomen, and involves pumping heated chemotherapy drugs into the abdominal cavity during surgery, in LGSOC.
Possible medical treatments for recurrence and progression include the below.
Availability of treatments varies by country.
- Avutometinib and defactinib (AVMAPKI FAKZYNJA CO-PACK) – a MEK/BRAF + FAK inhibitor – approved in the US by the FDA in 2025 for KRAS mutated LGSOC
- Trametinib (a type of MEK inhibitor)
- Different types of hormone inhibitors (aromatase inhibitors (AI) (if no prior disease progression on AI), fulvestrant, tamoxifen, Depot Lupron)
- Bevacizumab (Avastin)
- Chemotherapy (such as re-treatment with platinum-based regimen [if still considered to be platinum-sensitive], pegylated liposomal doxorubicin, weekly paclitaxel, gemcitabine)
- Clinical trials
- Off-label treatments (treatments that have regulatory approval for use in diseases other than LGSOC)
Prognosis of low-grade serous ovarian cancer
Survival statistics for stage I LGSOC
Early-stage LGSOC has a very good prognosis; it is estimated that 90% of people diagnosed with Stage IA/B and at least 50% of people diagnosed with Stage IC will experience cure, meaning, the cancer never returns after treatment.
Survival statistics for stage II-IV LGSOC
For people with stages II to IV LGSOC, the median survival is approximately 10-12 years. This means that with current treatments, half of all people with LGSOC live 10-12 years or less, and half live longer (some of whom will never recur).
A 2022 research study suggests that recurrence rates are reducing with modern treatments. Read our summary of the research paper which includes detailed recurrence statistics.
Factors associated with improved survival
In general, factors associated with improved survival include:
- All visible cancer removed with surgery
- Initial treatment with an aromatase inhibitor after or instead of chemotherapy
- Longer progression or recurrence-free time (i.e., the longer the cancer doesn’t grow/come back, the more likely someone will live longer or remain cancer-free)
- KRAS/NRAS/BRAF mutation
- Non-smoker
- BMI less than 35 kg/m^2
- Over 35 years old when diagnosed
- Earlier stage at diagnosis
However, individual survival can be very difficult to predict, and even with an early recurrence, it is possible for some people to have a good response to subsequent treatment.
My sister Michelle was diagnosed with low-grade serous ovarian cancer at 25 years old. Despite five recurrences she survived 19 years until her 42nd birthday, with many adventures and travels during this time.
Jessica, speaking about her sister Michelle
Finding support
LGSOC comes with unique challenges, and many people remain on constant cancer treatment, which carries side effects that can negatively affect quality of life. Infertility and the uncertainties surrounding prognosis can add additional challenges.
There is no right way to approach life with this diagnosis. For some people, being open about their diagnosis and treatment and its difficulties helps them process and find meaning in their experience, and also helps them obtain the appropriate support; others prefer to keep their experience more private. Some people make major life changes, while others try to retain as much of their original life as possible. It is important that each individual makes the best decision for themself and their situation.
Tell your story the way YOU want to. Wear your struggle on the outside, or keep it personal. There is no wrong way to do it.
Jess, diagnosed with low-grade serous carcinoma at 34 years old
In addition to the core cancer care team, a good musculoskeletal physiotherapist, pelvic floor physiotherapist, and psychologist can also be very helpful for post-surgical rehabilitation and ongoing mental well-being.
People can find comfort in connecting with others who have been diagnosed with LGSOC. The Low-Grade Serous Ovarian Cancer Initiative hosts two Facebook support groups – a peer-support group for people living with LGSOC, and a peer-support group for family, caregivers and friends of those diagnosed with the disease.
I’m so glad that I reached out to other women with my cancer when I was diagnosed. Having other people who can relate to my experience and provide support and friendship along the way is really helpful.
Alisi, diagnosed at age 24 with both low-grade and high-grade serous carcinoma
Low-grade serous ovarian cancer research overview
LGSOC was recognized as a unique and completely separate cancer from high-grade serous carcinoma in 2004. Prior to that, LGSOC was treated identically to high-grade serous carcinoma, despite responding very differently to treatment.
Since 2004, a small but growing collection of researchers around the world have been working hard to better understand LGSOC, find new treatments, and improve survival through laboratory and clinical research.
A brief history of low-grade serous carcinoma research advances
2004
Researchers prove that LGSOC is a unique and completely different cancer than HGSOC.
Researchers identify hormone therapy (used in breast cancer) and MEK inhibitors (used in melanoma and bowel and lung cancers) as potential treatments for LGSOC.
2007
The first dedicated clinical trial for LGSOC opens. Results published in 2013 show MEK inhibitor selumetinib has activity in recurrent LGSOC.
2014
The third clinical trial (known as GOG 281) for LGSOC opens. Results published in 2022. In GOG 281, the MEK inhibitor trametinib performed better in recurrent LGSOC than five hormone therapy and chemotherapy agents. It is the first positive randomised clinical trial in the history of LGSOC.
2017
A retrospective study finds that using hormone therapy after chemotherapy for initial treatment delays cancer progression.
Another retrospective study suggests time to cancer progression may be similar when hormone therapy is used without chemotherapy.
2018
Cure Our Ovarian Cancer is founded in New Zealand, with the goal of funding research around the world to improve outcomes for LGSOC. Cure Our Ovarian Cancer creates the first published method in the world to allow people to donate directly to LGSOC research in Australia, Canada, New Zealand, the United Kingdom, and the United States.
2020
STAAR Ovarian Cancer Foundation is founded by three women in the United States with LGSOC. The nonprofit works closely with Cure Our Ovarian Cancer to improve outcomes for LGSOC by raising funds to research effective treatments.
The International Consortium of Low-Grade Serous Ovarian Cancer (ICLC) is formed, bringing together leading researchers from around the world to work collaboratively to accelerate progress in LGSOC. The ICLC works closely with Cure Our Ovarian Cancer and STAAR Ovarian Cancer Foundation.
2022
Five unique LGSOC clinical trials are recruiting patients with another three in development — more than have been completed in the entire history of the disease.
2022/23
Two clinical trials show that two types of CDK 4/6 inhibitors used in combination with hormonal therapy have activity in newly diagnosed and recurrent low-grade serous ovarian cancer.
2023
The LGSOC community reaches a milestone of over $800,000 raised for low-grade serous carcinoma research around the world through the efforts of Cure Our Ovarian Cancer and STAAR Ovarian Cancer Foundation since the formation of these two organizations in 2018 and 2020, respectively.
2024
Not These Ovaries is founded in the United States raising $1.9 million for low-grade serous and borderline tumour research.
Cure Our Ovarian Cancer relaunches as the Low-Grade Serous Ovarian Cancer Initiative, reinforcing our commitment to research to improve LGSOC survival.
2025
First FDA approved treatment. Avutometinib and defactinib receive accelerated approval for recurrent KRAS mutated LGSOC in the US.
More than ever before, a growing number of physicians and scientists have become interested in LGSC research, and pharmaceutical companies are increasingly focused on developing new therapies for this rare cancer. Although clinical trials tend to be few and far between, we are witnessing a change in the space.
An increasing number of publications on the topic, and most importantly, the tremendous effort by charities and patient advocacy groups like Cure Our Ovarian Cancer and STAAR Ovarian Cancer in promoting awareness and fundraising, have played a major role in positioning LGSC more prominently.
Though many challenges remain, I have never been more hopeful that we will significantly impact this cancer through an even greater concentration on molecular biology investigations, enhanced international collaborations, and innovative clinical trials.
Dr David Gershenson
A note from our founder, Jane Ludemann
When I was 32 years old, my life was permanently changed when I was diagnosed with low-grade serous carcinoma, an experience many people reading this guide will be familiar with.
I was inspired to create the Low Grade Serous Ovarian Cancer Initiative out of a desire to give people with low-grade serous carcinoma the option to directly support research on their cancer type (low-grade serous) through donations and fundraising online, and to help people access reliable information about low-grade serous cancer that is written for people — not PhDs.
As unbelievable as it sounds, none of these things existed when I was diagnosed in 2017. Thanks to the Low Grade Serous Ovarian Cancer Initiative, now they do.
It’s a difficult disease with huge amounts of uncertainty but the silver lining is that though this is a rare cancer, you are not in this alone. You are part of an incredible global community of people impacted by low-grade serous carcinoma with some of the most amazing and caring people you will ever meet. And collectively many of us are working together to make a difference to our cancer to help others with our diagnosis now and in the future.
Jane Ludemann
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If you or someone you care about has been personally impacted by low-grade serous ovarian cancer, please don’t hesitate to reach out to us.
Acknowledgements
Thank you to Dr. David M. Gershenson, Professor Charlie Gourley, Professor Isabel Ray Coquard, and Professor Susanna Bannerjee for their assistance in developing this guide.
This article has been medically reviewed by experts in low-grade serous ovarian cancer.
Published September 2023