For many, being told that the ovarian cancer has come back or grown can be more upsetting than when you were first diagnosed. You may still be recovering from your treatment or you may have hoped that cancer was far behind you. Knowing what questions to ask and making sure that you get clear answers is important and can help you feel more in control.
Questions to ask your treatment team
These are some questions you can ask your treatment team which may help you feel more in control and decide what to do:
What treatment options do I have?
What can impact which treatment I can have? (For example, how long it’s been since your last treatment can affect your treatment options)
Will I have a different treatment if I’ve had more than one recurrence?
How will certain treatments help me and how effective are they?
Does the treatment have any risks now and in the long term?
What treatment will I have if I had an allergic reaction to chemotherapy last time?
What are the side effects of treatment? How might the treatment affect me physically, emotionally and sexually?
How long do these side effects last?
What might help me to reduce, control or recover from these side effects?
How will treatment affect my life and health in general?
Will I be able to go on holiday?
Can I continue to work?
If I stop working, when will I be able to return?
Where can I be treated?
Would a different cancer centre offer me other treatment options?
Is it possible to take part in a clinical trial at this cancer centre or any other centre?
Tips to help you get the information you need
It can be hard to take information in when you find out that the cancer has come back or grown. Here are some things you can do to help:
Write down any questions you want to ask your treatment team before your appointment. During the appointment, write down the answers so you can read them back later. You can also ask to record the appointment on your phone so that you can listen back to it.
It is always OK to ask your treatment team to explain things again or to explain them in another way. They may use medical terms which are difficult to understand.
Ask for a copy of the letter that goes to your GP if you haven’t been sent a copy directly and you feel it would help you.
Take a friend or family member with you to any appointments if you find it difficult to take information in. Talk to them about the questions that you would like to ask and ask them to write down the answers that you are given.
Your clinical nurse specialist (CNS) is there to make sure that your views are known in decisions about your treatment. Talk to them about how you feel and what is affecting your decisions about treatment. This might be things that are going on outside the hospital, like at home or at work.
Back here again
A guide for anyone whose ovarian cancer has come back.
Your team will usually recommend starting treatment when they have found clear signs of the cancer growing on scans. Sometimes your CA125 level may be rising over time but without any other sign of cancer activity. This is where there are no symptoms and no sign of cancer growth on your scans.
What is watchful waiting?
It’s unlikely your team will recommend starting treatment based only on a raised CA125 level. This is because research has shown that starting chemotherapy when your CA125 levels start rising, but before you have any symptoms, doesn’t have an effect on how successful the treatment is. Also a raised CA125 level isn’t enough on its own to prove that the ovarian cancer has come back. Your team will monitor you closely with regular reviews and scans to make sure treatment is started quickly when it is needed. This is called active surveillance or watchful waiting.
Waiting until you have symptoms or until there are signs of more significant tumour growth on scans can be worrying if you want to start treatment as soon as possible, but there are benefits to waiting:
It means you have a longer period between platinum-based chemotherapy treatments such as carboplatin and cisplatin. This may mean you respond better to the drugs, and it reduces the chances of your body developing resistance to the treatment.
It may improve your quality of life as you avoid the side effects of treatment for longer.
It’s also OK to start treatment as soon as it’s been confirmed that the cancer has come back. It’s important for you to talk with your clinical nurse specialist (CNS) or oncologist about what you want to do, as you may have a particular reason for wanting to start treatment as soon as possible.
Personal experience: how watchful waiting felt for me
Emma, who has a diagnosis of ovarian cancer, shared her experience of watchful waiting:
"When I was first diagnosed and had treatment, I remember thinking that if I ever had a recurrence I could never watch and wait. But when it happened, my oncologist explained that there actually wasn't enough disease for them to be concerned that it needed to be treated then and there. Putting my body through chemotherapy it didn't need at that point could be detrimental rather than helpful. My oncologist was very clear that if I couldn’t cope psychologically, he would jump in and treat it. But I felt a calmness around it because the team made it seem very normal to watch and wait and just see what happened.
I'm so pleased now that I did because I had 16 months of no treatment, without any kind of panic. I just went back to three monthly scans and blood tests. During that time my CA125 was going up steadily. But nothing showed on the scans for quite a few months. Then it started to show itself on CT scans, but it was doing exactly what my oncologist expected it to do, which was to show itself slowly.
Watch and wait for me was a bit of a no brainer. Every experience is different, and I think if I'd not been feeling well, my decision and my team’s decision would have been different. But for me, the decision was made to treat it when the time was right. I'm really pleased that I did it that way."
How are CA125 blood tests used for monitoring?
Once you begin treatment, it’s most likely that a CA125 blood test will be used to measure and track your response to the treatment. The level of CA125 in your blood may rise because of ovarian cancer, but it may also rise because of other causes not related to cancer. Usually, a normal level of CA125 is under 35 units per millilitre (u/ml).
A raised CA125 level isn’t a reliable sign of ovarian cancer returning for everyone. Some women may not have raised CA125 levels even when diagnosed with ovarian cancer. Others may have naturally high levels in their blood. If your CA125 level isn’t a reliable sign for you, then your team will tell you how they plan to monitor you. This may be by having CT scans and doing physical examinations.
Your treatment options
Your oncologist and clinical nurse specialist (CNS) will talk to you about the treatments that are available and suitable as well as what type of treatment you would prefer. Your treatment team should also talk to you about taking part in a clinical trial if there is one available.
This section is focused on treatment options for epithelial ovarian cancer. If you have a rarer type of ovarian cancer such as germ cell or stromal cell tumours, your team will talk to you about your treatment options. You may be referred to a specialist treatment centre or there may be clinical trials you can take part in. Ask your team about these options.
What are the treatment options for recurrent ovarian cancer?
The treatment options for recurrent ovarian cancer can include:
surgery
chemotherapy (drugs used to kill cancer cells)
targeted therapies (drugs that attack certain types of cancer cells with less harm to normal cells)
hormonal therapy (drugs that block the action of certain hormones in the body to slow down cancer growth).
radiotherapy (when beams of high energy are used kill cancer cells). Often treatment can involve a mix of these options.
What factors affect my treatment options?
Which treatment you receive will depend on:
what type of ovarian cancer you have
how well you responded to your last treatment
the time since your last treatment
whether your initial tumour had gene variants or hormone sensitivity
your personal wishes.
Surgery
More surgery may be a treatment option for recurrent ovarian cancer. This is called secondary debulking surgery.
Two recent clinical trials (called DESKTOP III and SOC1) showed that, for those whose ovarian cancer had come back once, surgery to remove all visible cancer followed by chemotherapy was more effective in treating the cancer than chemotherapy on its own. But to benefit from a second operation, certain criteria (rules) need to be met. These include:
all cancer that was visible on scans and during surgery was removed during your first surgery
the cancer has returned more than six months after your first chemotherapy
you don’t have ascites. This is a build-up of fluid in the tummy area
your surgeon believes an operation is possible and that they can remove all visible signs of cancer again.
Surgery may also be recommended in some cases to deal with symptoms such as a bowel obstruction. This is when your bowel becomes partly or completely blocked. It may involve the creating a stoma or an ostomy. This is where the end of the bowel is brought through an opening in the wall of your tummy.
You can always ask for a second opinion on whether surgery is an option or not.
Professor Agnieszka Michael, a consultant medical oncologist at Royal Surrey County Hospital, talks through treatment options for recurrent ovarian cancer:
Chemotherapy
It’s likely that you will be offered more chemotherapy. It can be given as treatment on its own or with other treatments such as surgery.
It’s common to have some side effects from chemotherapy. These can usually be easily treated. Read more about the common side effects of chemotherapy.
Try to keep an open mind that whenever a recurrence comes your body is different than it was when you last had treatment. What you expect from treatment might be different to what actually happens. I got myself organised with what I would need during chemotherapy because I presumed it would be the same as last time. The first time, I had really painful joints and feet so I couldn't do the moving around that I wanted to do. My body has responded differently this time, and I haven’t felt as badly in myself.
Emma
When ovarian cancer comes back, doctors usually describe it as either platinum-sensitive or platinum-resistant. This depends on how long it has been since you last had chemotherapy with a platinum-based chemotherapy such as carboplatin or cisplatin.
This graphic shows what these terms mean based on the time passed since your last platinum-based chemotherapy treatment.
Chemotherapy for platinum-sensitive recurrent ovarian cancer
If it’s been six months or more since your last treatment with carboplatin or cisplatin chemotherapy, the cancer is called platinum-sensitive. This means that there’s a greater chance it will respond to more platinum-based treatments. In this case, your oncologist will suggest giving you more carboplatin. This is usually in combination with another chemotherapy drug such as:
paclitaxel (Taxol®)
pegylated liposomal doxorubicin hydrochloride (PLDH, or Caelyx®)
gemcitabine
If it has been between six and 12 months since your last treatment with platinum-based chemotherapy, the cancer is sometimes called partially platinum-sensitive. In this situation you’re likely to be offered the same platinum-based treatments as those who are platinum-sensitive.
Chemotherapy for platinum-resistant recurrent ovarian cancer
If the cancer needs treating again within six months of your last treatment with platinum chemotherapy (either carboplatin or cisplatin), the cancer is called platinum-resistant. This means it’s less likely that it will respond well to platinum chemotherapy again, and different drugs are used. These include:
paclitaxel (Taxol®), which is usually given once per week rather than every three weeks
pegylated liposomal doxorubicin hydrochloride (PLDH or Caelyx®).
In platinum-resistant ovarian cancer, these drugs are usually given on their own.
In some areas of the UK, your oncologist may also consider the use of other drugs including topotecan, etoposide, gemcitabine and cyclophosphamide. Your team will be able to talk to you about the risks and benefits of these options in more detail.
Chemotherapy for platinum-refractory ovarian cancer
If the cancer continues to grow during chemotherapy, or it comes back within four weeks of completing your previous chemotherapy, it’s called platinum-refractory. In this situation you’re likely to be offered the same treatments as those who are platinum-resistant.
Allergic reactions to carboplatin
Sometimes you can become allergic to carboplatin. If this happens, it’s sometimes possible to continue with carboplatin again later, using something called a desensitisation regime. This means that all future doses of carboplatin are given very slowly, at a very low dose. The dose is then gradually increased. The treatment takes longer than normal but there is less chance of having another reaction to it. It’s also sometimes possible to switch to cisplatin, which is very similar drug to carboplatin. But, if you have a very bad allergy, you may need to stop platinum chemotherapy altogether. If this happens your oncologist will talk to you about other treatment options.
Cancer specialists have also started to find that grouping those with ovarian cancer into platinum-sensitive and platinum-resistant may be too simple. This means that those who have platinum-resistant disease may still benefit from more chemotherapy with platinum agents. Your team will discuss this with you if they think this might be a treatment option for you. Both you and the cancer are unique. Your oncologist will suggest using the drugs that will have the best impact for you as an individual.
Targeted treatments
You may be offered targeted therapies after a recurrence. Targeted therapies work on specific genes and proteins that are involved in the growth and survival of cancer cells. These treatments specifically target the things about a cancer cell that makes it different from a normal cell.
Maintenance therapy (PARP inhibitor drugs)
In some situations, a maintenance treatment can be given after chemotherapy. A maintenance treatment is a drug that aims to increase the amount of time that the cancer doesn’t grow for. Taking a maintenance treatment means that you might be able to have a longer gap before needing more chemotherapy.
The main group of drugs used as a maintenance treatment for recurrent ovarian cancer are poly ADP-ribose polymerase (PARP) inhibitors. These are a type of targeted therapy that stop the cancer cells from repairing damage in its DNA. This means that the cancer cell will die. They are taken as a tablet at home and can continue to be taken for as long as they are helping.
If there is a good response to platinum chemotherapy for recurrent ovarian cancer, research shows that taking a PARP inhibitor afterwards can keep the cancer under control for longer than chemotherapy alone. You can currently only have a PARP inhibitor once. So if you had a PARP inhibitor after your first course of chemotherapy, you won’t be offered another one.
There are three PARP inhibitors currently in use in the UK:
olaparib (Lynparza®)
niraparib (Zejula®)
rucaparib (Rubraca®)
In the UK, if you have stage 3 or 4 high-grade epithelial ovarian cancer, fallopian tube cancer or primary peritoneal cancer and you have responded well to platinum chemotherapy you may be able to access a PARP inhibitor. This is as long as you haven’t already had one before. Exactly which drug you are offered will depend on:
where you’re being treated in the UK
whether you have a BRCA gene variant
which medication your team think will suit you best.
Bevacizumab is also a targeted therapy. You may also hear it called Avastin®. Research suggests that for those with platinum-resistant ovarian cancer, having bevacizumab with chemotherapy can:
increase the chance of the treatment shrinking the cancer
keep the cancer under control for longer than chemotherapy alone.
Mitogen-activated protein kinase (MEK) inhibitors work by targeting proteins called MEK proteins that help cancer cells to grow. By blocking these proteins, MEK inhibitors slow or stop the growth of the cancer cells.
Trametinib is a MEK inhibitor drug used to treat certain types of ovarian cancer. It can be given if you have low-grade serous ovarian cancer that has come back. It can also be used if you have low-grade serous ovarian cancer that has continued to grow after platinum-based chemotherapy. This is called progressive ovarian cancer. It is given instead of chemotherapy as a tablet that you can take at home. Like PARP inhibitors, you can only have trametinib if you haven’t been treated with it before.
Targeted treatments
The way drugs are approved for use in the NHS is different across the UK. This means that there can be some differences in what drugs are available depending on where you live. For up-to-date drug availability where you live in the UK:
Call our specialist nurse-led support line on 0808 802 6000
Hormone therapy
Hormone therapy, using drugs such as tamoxifen, letrozole and anastrozole, can also be useful in treating some types of recurrent ovarian cancer.
It may be used in those:
with a hormone sensitive tumour
with a small amount of disease (low volume)
whose cancer is growing very slowly
whose cancer doesn’t respond well to chemotherapy
who do not wish to have more chemotherapy.
Low-grade serous ovarian cancer is often hormone sensitive. Your oncologist will talk to you about whether hormone therapy might be a treatment option for you.
Hormone sensitive ovarian cancer means that the cancer cells can grow in response to hormones in your blood called oestrogen and progesterone. In these cases, hormones can cause tumour cells to grow. Hormone therapies work by reducing the amount of oestrogen and progesterone in your body or by blocking oestrogen and/or progesterone and stopping them from reaching the cancer cells.
Radiotherapy
Radiotherapy is where radiation, or high-energy rays, is used to kill cancer cells. It isn’t often used to treat recurrent ovarian cancer but sometimes it can be used to control symptoms. It may also be used to treat ovarian cancer that has come back in one part of the body. Your oncologist will be able to talk with you about whether radiotherapy is an option for you.
Non-standard drugs and treatments
You may wish to ask about other ways to access different drugs that are not yet licensed or approved to regularly treat ovarian cancer. Sometimes oncologists prescribe drugs outside of clinical trials if they believe you may benefit. This means they are not yet licensed for ovarian cancer. This is known as prescribing off license or off-label.
An oncologist may also choose to prescribe a drug that’s licensed but not yet approved for NHS funding. In either case the oncologist may have to make a special application for funding for the drug. This application may or may not be accepted.
Occasionally drugs company will run a compassionate access scheme. This means you can access a drug if you meet certain criteria and the drugs company will meet the cost. Applications to the drugs company must be made by your oncologist.
If your oncologist is reluctant or unsure about talking about other drugs, you can ask for a second opinion. You will always need the support of an oncologist, as they have to apply for funding for you.
Clinical trials
Clinical trials are research studies that investigate potential new drugs, new ways of giving treatments or different types of treatments. Read more about clinical trails, how they work and where you can find out more.
Our specialist nurses are available Monday to Friday, 9am to 5pm if you have any questions or concerns. Call them on 0808 802 6000 (freephone) or email [email protected]
Cancer Research UK has detailed information about recurrent ovarian cancer
Your wellbeing
Find information and support to help improve your wellbeing when living with ovarian cancer. Learn more about diet and nutrition, managing your finances, work and education, complementary therapies and sex and intimacy.
