Gilly's Experience
“The fear of recurrence featured heavily in my thoughts, especially at night, and it affected my sleep. When my disease did recur, I didn’t trust my body anymore. It took me a lot longer to get over the shock of the recurrence than the original diagnosis.”
What does recurrence mean?
When you are treated for ovarian cancer (with surgery, chemotherapy and/or targeted treatments) the goal is to get you to a position where there is no longer any cancer detectable and you have no more signs or symptoms of the disease. This is sometimes called “remission” or “No Evidence of Disease (NED)”.
When we talk about cancer recurrence or relapse, we mean the cancer has come back. Ovarian cancer may come back a short time after treatment, or it may come back years later.
The cancer can return in the same place as before, or it could be that you have signs of cancer growing in new parts of your body.
Depending on how long it has been since your original treatment, you may be able to have the same treatment again, or you may be offered a new treatment option.
Overall, around 70% of ovarian cancer patients will experience a recurrence of their disease.
Ovarian cancer recurrence rate
It’s important to remember that there are many factors that affect whether a cancer comes back and these are only general statistics.
On average, 70% of women with ovarian cancer will face a recurrence. This means out of 100 women, 70 will see their ovarian cancer come back at some point.
However, this varies greatly depending on the stage you were diagnosed1:
- Stage 1: 10% chance of recurrence
- Stage 2: 30% chance of recurrence
- Stage 3: 70- 90% chance of recurrence
- Stage 4: 90 - 95% chance of recurrence
The chances of recurrence also vary depending on what type of ovarian cancer you have been diagnosed with, so it’s important to take these statistics as general information only. You should speak to your cancer team for more detail about your own individual situation.
Increased risk of recurrence
Certain things can impact how likely it is for ovarian cancer to recur.
- Stage: The stage describes how far the ovarian cancer has spread, from 1 (confined to the ovaries) to 4 (the cancer has spread to distant organs e.g liver or lungs). The more advanced the ovarian cancer was when diagnosed, the more likely it is to come back.
- Grade: The grade refers to how different the cancer cells look to normal cells under a microscope. High grade cancers look very abnormal, tend to grow faster, are more aggressive and are more likely to recur.
Low grade cancers look more like normal cells, tend to grow more slowly and are slightly less likely to recur.
- Surgery: The goal of the surgery is to remove all the disease, but sometimes small amounts remain. The smaller the amount of cancer left behind in surgery, the lower the chances of the cancer recurring at the end of treatment.
When might my ovarian cancer recur?
The likelihood of whether your cancer might come back, and when, is very individual and depends on many factors such as stage, grade and type of ovarian cancer. It is important to speak to your cancer team to find out more about your own situation.
In general though, for epithelial ovarian cancers recurrences usually happen within five years, and recurrences after more than ten years are rare. For other subtypes, such as some sex-cord stromal ovarian cancers, recurrences are more likely to happen after ten years.
This is why speaking to your medical team about your personal diagnosis is important before you focus on any statistics.
Does ovarian cancer have a high recurrence rate?
It is common for ovarian cancer to recur, but it’s important to remember it doesn’t happen to everybody. In around 7 in 10 women, their ovarian cancer will come back at some point.
The chance that your ovarian cancer comes back depends on many things. One of the biggest things that affects how likely it is that your ovarian cancer comes back is the stage of diagnosis: the earlier the disease is diagnosed, the lower the chances that it will return.
Why does cancer come back?
Your cancer may come back, or recur, because the original treatment you had didn’t get rid of every cancer cell, and cells that are left behind have grown into a new tumour. Depending on the stage and type of ovarian cancer you have, you may be offered chemotherapy after having your cancer removed surgically specifically to “mop-up” any cells that are left behind and reduce the chances of recurrence.
A recurrence may also happen because some of the original cancer cells spread away from the original place your tumour began, and started to develop into a new tumour.
It’s also possible for the cancer to become resistant to the chemotherapy you are given. If you have a recurrence within six months of platinum chemotherapy, this is called “platinum-resistant ovarian cancer”. If your cancer progresses while you’re on this chemotherapy, it is called “platinum-refractory ovarian cancer”. If a recurrence happens longer than six months after your platinum chemotherapy, you are classed as “platinum-sensitive” meaning you aren’t thought to be resistant to the chemotherapy.
The amount of time since your last treatment will impact the type of treatment that’s suitable for you if you do have a recurrence.
Can ovarian cancer come back if I have had my ovaries removed?
Because an ovarian cancer recurrence can be due to microscopic cancer cells remaining in your body, a recurrence or relapse of the disease can happen even if you have had your ovaries removed, for example as part of your surgical treatment.
second primary cancer vs recurrence
A cancer recurrence is when your original cancer comes back. This could be in a part of your body that seems unrelated to your original cancer, but the cancer cells came from the original cancer and will be identified under the microscope as that type of cancer cell. For example, if ovarian cancer spreads to the liver, it is still ovarian cancer.
A second primary cancer is a diagnosis of a new, unrelated separate cancer with a different cell type to your original cancer. This would require a different treatment plan. This second diagnosis might be:
-due to chance;
-due to the second cancer having similar environmental risk factors to the first;
-because of certain gene faults that increase the person’s likelihood of developing multiple types of cancer or
-due to treatment of the first cancer increasing the risk of other cancers (e.g. platinum chemotherapy can increase the risk of developing leukaemia at a later date).
What are the latest treatments available for ovarian cancer recurrence?
There are many factors affecting how a recurrence of ovarian cancer would be treated, including the type of ovarian cancer, the stage it was diagnosed, where the recurrence is in your body, and how long it is since your last treatment. The goal will be to shrink the cancer, control the disease and reduce any symptoms you may have.
Your oncologist will discuss a treatment plan that is right for you; the below is for general information only.
One of the first things to consider is how quickly the ovarian cancer returned after initial treatment.
If your cancer returns more than six months after completing your chemotherapy it will be classed as “platinum-sensitive”. If it is between six and twelve months since your treatment, it may be referred to as “partially platinum-sensitive”. Platinum-sensitivity means the disease can often be treated again with platinum-based chemotherapy such as cisplatin or carboplatin. This may be the same as the treatment you had originally or it may be a different chemotherapy drug or a combination.
If your cancer recurs within six months of original treatment it will be classified as “platinum resistant”. This means the cancer has become resistant to the initial treatment. It’s important to remember that there are other options available and your clinical oncology team will discuss the best way to treat you. This could include entering a clinical trial if there’s a suitable one available or other chemotherapy options.
"It took me a lot longer to get over the shock of the recurrence than the original diagnosis. But my cancer is now under control and I am hopeful. Even though recurrence is always there in the back of my mind, I feel so lucky to still be here.”
- Gilly
In some situations, secondary debulking surgery may be appropriate. Research has suggested that this may be a good option if you are healthy enough for surgery, don’t have ascites (fluid in the abdomen), your cancer is platinum sensitive and your first surgery removed all the visible disease.
You may also be offered targeted treatments such as PARP inhibitors, anti-angiogenics (bevacizumab/Avastin) or trametinib.
In some cases of small local recurrence you may be offered radiotherapy.
You may also qualify for treatment with a type of drug called Antibody-Drug Conjugates (ADCs) which at the current time includes the drug Elahere, though please be aware that eligibility varies depending on where you live.
For some types of hormone-sensitive cancer, you may be offered hormone therapy such as tamoxifen or letrozole.
If you have symptoms that are causing you significant issues, such as ascites (fluid buildup) or a blocked bowel, your team may arrange treatment for these specifically to improve your quality of life.
Speak to your clinical team to find out what options are available to you in your situation and in your part of the UK.
Asymptomatic relapse- Monitoring suggests I have signs of recurrence but I don’t have any symptoms.
Sometimes, women find out their cancer has returned through routine bloods or scans, before they have any signs or symptoms of the disease coming back. This is because the disease can return as small clusters of cancer cells rather than a large tumour, and this means there aren’t the typical symptoms.
Research suggests that in this situation, you don’t necessarily want to rush into more treatment- that having more treatment before there are symptoms doesn’t always improve the outcomes.
It is important to discuss your personal situation with your medical team as the approach will depend on many factors- it’s not one-size-fits all.
How likely is it that treatment will be effective for my recurrent ovarian cancer?
If your ovarian cancer has come back, you will most likely still have treatment options. The goal will be to shrink tumours, manage symptoms and improve quality of life. For many women, it’s possible to manage recurrent ovarian cancer as a chronic illness, with good quality of life. The options available and how effective they are will depend on the type of ovarian cancer, what other treatments you’ve had, and how long it is since your last treatment.
FAQ's
Anxiety over your cancer coming back is incredibly common- it is very difficult to live with the uncertainty. Make sure you speak to your cancer team about how you are feeling, and reach out if you are worried about any signs or symptoms you’re concerned about. Your cancer team is there to help you, and you don’t have to handle this alone..
Feelings of anxiety often get better with time, but it is worth finding ways to help you cope sooner rather than later. Your cancer team or GP will be able to tell you what local support is available, and you can also look to national support organisations.
Michelle: “The thought of recurrence is constantly on my shoulder but I keep active and try and plan holidays to look forward to.”
One of the biggest factors that affects whether your ovarian cancer will come back is the stage that you were diagnosed. Once you’ve been diagnosed, there’s no definite way to prevent recurrence. There’s no specific diet or lifestyle plan that will stop cancer from coming back.
Generally though, the advice is to maintain your overall health as much as possible- with a healthy balanced diet and exercise, which will benefit bothyour physical and mental health.
You may be given the option of taking certain maintenance therapies, such as PARP inhibitors or drugs like Avastin, to reduce the chances of a recurrence, or lengthen the time before a recurrence might happen.
It might be that you have similar symptoms to when you were first diagnosed, so it is as important as ever to be aware of changes in your body and speak to your cancer team or GP if you notice anything.
It might be that you don’t have any symptoms, but as part of your routine monitoring blood tests or scans, your cancer team spot that there are signs of the disease returning.
If you feel you would like to talk to someone about your ovarian cancer recurrence, Macmillan Cancer Support has an anonymous support line for advice and emotional support: 0808 808 0000. You can also find useful resources on Macmillan's website.
Ovacome is the ovarian cancer support charity. It has created a helpful factsheet that answers commonly asked questions around treatment choices for relapsed ovarian cancer.
Although every woman’s experience is very different, you may find it useful to read about other women’s experiences on our blog.
