It's understandably distressing to hear that the cancer has come back. Knowing what questions to ask and making sure that you get clear answers is extremely important and can help you feel more in control.
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When does treatment start?
Treatment will usually be recommended when your team has found clear evidence of the cancer growing on scans. Sometimes your CA125 blood test may be rising without any other sign of cancer activity (no symptoms and no sign of cancer growth on your scans). It’s unlikely your team will recommend starting treatment based only on a raised CA125 level. That’s because research has shown that starting chemotherapy when your CA125 levels starts 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.
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 (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, because if the cancer comes back again over the course of time, you'll spend less time having treatment and dealing with the side effects.
It’s also okay 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.
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, unless you’re someone whose CA125 level has never risen outside the normal range. CT scans and ultrasounds may also be used to assess how well you’re responding to treatment. Your CNS or oncologist will be able to explain your treatment plan in more detail.
Your treatment options
Chemotherapy and targeted therapies are the most common treatments offered for those with recurrent ovarian cancer. Surgery and hormone therapies are sometimes offered too. Your oncologist and CNS should talk to you about available and suitable treatments and your personal preference. The possibility of taking part in a clinical trial – where available – should also be discussed with you if this is something you would like to explore.
Treatment for recurrent ovarian cancer can include options such as:
- chemotherapy (drugs that aim to kill cancer cells)
- targeted therapies (drugs that attack specific types of cancer cells with less harm to normal cells)
- hormonal therapy (drugs that block the amount of hormones in the body to slow down cancer growth)
Which treatment you receive will depend on what type of ovarian cancer you have, how well you responded to your original treatment and your personal wishes. Often treatment can involve a combination of these options.
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 containing a platinum-based chemotherapy (carboplatin or cisplatin).
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 drug, such as paclitaxel (Taxol®) or pegylated liposomal doxorubicin hydrochloride (PLDH or Caelyx®).
Sometimes you can become allergic to carboplatin. If this happens, it’s sometimes possible to continue with carboplatin at a later date, using something called a desensitisation regime. This means that all future doses of carboplatin are given at a very low dose and the dose is then gradually increased. It’s also sometimes possible to switch to cisplatin, which is very similar to carboplatin. If you have a severe allergy, it’s sometimes necessary to stop platinum chemotherapy altogether.
Sometimes the term partially platinum-sensitive is used. This is when the cancer comes back between six and 12 months after your last treatment with platinum-based chemotherapy.
Some women will have very platinum-sensitive disease when they’re diagnosed with recurrent ovarian cancer and may have multiple courses of platinum-based treatment over many years. Unfortunately, it’s common to develop resistance to the platinum-based chemotherapy over time. This type of cancer is then called platinum-resistant.
If the cancer needs treating again within six months of your last treatment with platinum chemotherapy (either carboplatin or cisplatin), it’s called platinum-resistant. This means it’s less likely to respond well to platinum chemotherapy again, so different drugs are used. These include paclitaxel (Taxol®) – often given once per week rather than every three weeks – or pegylated liposomal doxorubicin hydrochloride (PLDH or Caelyx®). In platinum-resistant ovarian cancer, these drugs are usually given on their own.
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 further chemotherapy with platinum agents. Your team will discuss this with you if they think this might be a treatment option for you. Remember you and the cancer are unique. Your oncologist will suggest using the drugs that will have the best impact for you as an individual.
Surgery is an option in the management of recurrent ovarian cancer in some cases. This is called secondary debulking surgery.
Two recent clinical trials (called DESKTOP III and SOC1) showed that for those with a first recurrence of ovarian cancer, surgery to remove all visible cancer followed by chemotherapy was more effective in treating the cancer than chemotherapy on its own. However, to benefit from a second operation, certain criteria need to be met:
- all visible disease was removed during your first operation
- the cancer returning over six months after your first chemotherapy
- your surgeon believes an operation is possible and that they'll be able to remove all visible signs of cancer
Surgery may also be recommended in some cases to deal with symptoms such as a blocked bowel (bowel obstruction). This may involve the creation of a stoma.
You can always ask for a second opinion on whether surgery is an option or not.
Radiotherapy isn’t a standard treatment for ovarian cancer that’s come back but it can sometimes be used to control symptoms. Your oncologist will be able to speak to you about whether radiotherapy's suitable for you.
Hormone therapy, using drugs such as tamoxifen and letrozole, is best known as a treatment for breast cancer. It appears it can also be useful in treating some types of recurrent ovarian cancer, especially in those with a small amount of disease (low volume), if the cancer is growing very slowly or if you don’t wish to receive more chemotherapy. However, there haven’t been any large-scale clinical trials to see how hormone therapy compares to standard treatments and who might benefit most from this approach.
Targeted (biological) treatments
Access to different targeted drugs through the NHS changes regularly. Read the most up-to-date information on targeted treatments for ovarian cancer.
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 remains inactive (where it stops growing).
The main group of drugs used as a maintenance treatment for ovarian cancer are poly ADP-ribose polymerase (PARP) inhibitors. These make cancer cells less able to repair damage in the DNA, so the cancer cell dies.
If you’ve responded well to platinum chemotherapy you may be eligible for a PARP inhibitor (as long as they haven't already received one). Which drug you’re offered will depend on which nation in the UK you live in, whether you have a genetic mutation and which medication your team think will suit you best.
Having bevacizumab (Avastin®) alongside chemotherapy has been shown to add benefit to those who are platinum-resistant. Bevacizumab targets the things about a cancer cell that makes it different from a normal cell.
It’s currently available to some people with advanced recurrent ovarian cancer in Scotland but at the moment it's not available in the rest of the UK.
Non-standard drugs and treatments
You may want to ask about other ways to access different drugs, not yet licensed or approved. Sometimes oncologists prescribe drugs outside of clinical trials (ie not yet licensed for ovarian cancer) if they believe you may benefit. 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.
Sometimes manufacturers of the drugs in question will run a compassionate access scheme that you can access if you meet certain criteria. This means the drug company meet the cost. Approaches to the drug company must be made by your oncologist. If your oncologist is reluctant or unsure about discussing other drugs, you can always ask for a second opinion.
Clinical trials are research studies that investigate potential new drugs, new ways of giving treatments or different types of treatments. Read more what clinical trials are, how they work and how you could get involved.