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Ovacome is a national charity providing support to those affected by ovarian cancer.  We give information about symptoms, diagnosis, treatments and research. Ovacome runs a telephone and email support line and works to raise awareness and give a voice to all those affected by ovarian cancer.

This booklet describes how to prepare for remote appointments during the COVID-19 period.

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Preparing for a telephone or internet consultation

This is information for ovarian cancer patients who are preparing for hospital clinic appointments during the current COVID-19 health crisis. It aims to help patients understand how the delivery of care has changed because of the crisis.

You may be expecting a face to face meeting with your consultant, or members of your consultant’s team, but your appointment is now likely to be conducted by telephone or using the internet.

The COVID-19 crisis has put additional pressures on the NHS but it is important to remember that your clinical team is still available to support and advise you.  If your condition changes or you experience side effects from your treatment, contact them straightaway.  Don’t wait until your next routine appointment and don’t worry that you are bothering them.  They are still there for you.

Changing to telephone and internet appointments is to reduce the number of times you visit your hospital.  This should lower your risks of COVID-19 infection.  Your clinical team will have considered all aspects of your care and how it could be affected by the COVID-19 virus.

They may have made changes in your care and treatment to reduce risks to your immediate health and to keep you as well as possible for as long as possible.  This may mean balancing the risks of infection against the effects of delaying or changing your cancer treatment.

This information also aims to help you get the most from your appointment.  It suggests questions that you may want to ask and tells you what to expect from the clinical staff you speak with.

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Preparing for a remote appointment

Before your appointment your clinical team should let you know how you will be contacted if a face to face meeting is not possible.  This may be by phone, or using an internet video call service like Attend Anywhere, Skype or Zoom.  Make sure that it is suitable for you.

If you don’t have the equipment you need, such as a smartphone or laptop computer, make sure your team knows this.  If this is the first time you have used this technology it might help to practice beforehand.  Ask a family member, friend or support charity to talk you through.

Allow yourself time to prepare. Around ten minutes before the appointment time find a quiet space with good wifi that is private and where there will be no interruptions. It can be useful to have a list of questions you want to ask.

You may want to have someone with you to take notes and support you.  Make sure you can use the speaker on your phone so they can listen and take part if you want them to.

If you want to you can have someone else to take the call and speak for you, but do let the clinic know if you are planning this.

Be prepared for a delay.  Clinics can be very busy and new ways of working might alter timings.

It would be helpful to keep informed about the current health crisis and how it may affect ovarian cancer patients and you can do this using the Ovacome website.

This has up-to-date, clear information from the government, the NHS and the British Gynaecological Cancer Society.

You can also call the Ovacome support line if you want to talk about your appointment or any issue concerning ovarian cancer and your care.

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Questions you may want to ask

What are my treatment options?

What is the team’s recommendation for my treatment?

What are the risks and benefits of the treatment?

How long will it go on for?

How often will I need to attend hospital?

Will you be able to remove all of the cancer?

What will happen if I don’t have treatment?

Can my fertility be preserved?

Will my treatment have side effects?

How do I get support to manage these?

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Dr Susana Banerjee, Consultant Medical Oncologist at The Royal Marsden NHS Foundation Trust explains:

"We have received positive feedback about telephone and video consultations from patients and families in these difficult times. It has allowed loved ones to be part of important consultations where otherwise COVID-19 restrictions would have meant that they could not have been present for the hospital consultation."

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What to expect from clinicians

When you are in your appointment there may be points that the doctor or nurse wants to raise because of the public health crisis.  

They may explain that changes in services and practices that affect cancer patients are to minimise the need for you to come to hospital and so reduce your risk of exposure to COVID-19.

They should reassure you that they are fully informed of your diagnosis and treatment, that they attend the multi-disciplinary team (MDT) meetings that discuss your treatment and can provide the support and information you need. 

Remember that the meeting is an opportunity for you to get the information you need.  The clinician is there to listen to you as well as to speak with you.

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Patients say:

“I wasn’t worried. I had written out my questions and was assured that I would get the same amount of time as I would in a face to face meeting.  I have found it very efficient and it saves me the stress of travel.  I put it on loud speaker so my husband could take part.  If we were in hospital he wouldn’t  have been allowed in with me.”

“It does add anxiety to an already anxious situation.  There you are sitting waiting but no one can see that.  I had to receive news I didn’t want to hear over the phone.  It is hard not to see someone’s face and how they are reacting.”

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If this is your first hospital appointment

Your first hospital appointment with your oncology team is usually after tests have shown that you may have ovarian cancer. You may be expecting to talk to your consultant to get more details about what will happen next. This is often surgery to confirm the diagnosis and remove as much of the cancer as possible, or chemotherapy to shrink the cancer before you have surgery.

You may be able to see your consultant face to face for this important first appointment. Your consultant might want to see you to assess you. They might need to meet you in person to begin your doctor/patient relationship.

If a face to face meeting is not possible the appointment will be conducted remotely, by telephone or using the internet.

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Clinicians say:

"If patients do end up seeing the doctor or nurse face to face then they will have to visit alone  so may want to prepare questions with a family member/carer in advance. The healthcare professional will be wearing full PPE (personal protective equipment) gear and will not be able to hold their hand or comfort them physically but they are there to support and treat the patient in the best way possible."

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Planning your treatment

You may have further appointments to plan your treatment and these may be conducted remotely by telephone or using the internet.   The hospital should let you know how the appointments will be arranged.

It is also likely that you may not be able to speak with your consultant and will instead be meeting with another member of your clinical team.  This may be a specialist registrar, a clinical nurse specialist or other clinician who is a member of your multi-disciplinary team that attends the MDT meetings and helps to plan your care and treatment.  It may be someone you have not met before. They will still know about you and your treatment and will be able to discuss this with you on behalf of your consultant.

These appointments are to discuss your treatment which may be surgery followed by chemotherapy.  You may be recommended to have some chemotherapy before surgery, or you may be treated using surgery alone or chemotherapy alone.

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Chemotherapy and other drugs

To plan chemotherapy or other drug treatments, such as Avastin (bevacizumab) or PARP inhibitors such as olaparib and niraparib, you will need to meet your oncologist, or members of the oncology team.  

This may be the first treatment following your diagnosis of ovarian cancer (with or without surgery) or it may be treatment when your ovarian cancer has come back.

This may be an appointment that is conducted remotely.  Your hospital will tell you if this is the case.

If a face to face meeting is not possible, you should still be able to discuss your treatment, ask questions and make decisions with your oncology team.

Decisions about your treatment will take into account your diagnosis, your individual circumstances and your local situation to assess the risks of COVID-19 infection.

This may mean having fewer cycles of chemotherapy to minimise the number of times you have to visit the hospital. Your chemotherapy may be postponed until after the COVID-19 crisis or you may be recommended to use another drug therapy that can be taken at home.

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Questions you might want to ask

How will I know if the treatment is working?

What side effects should I expect? How do I manage these at home?

How often will I have to visit the hospital?

How long does each chemotherapy session take?

Who do I contact if I have problems when I’m at home?

Will I lose my hair?

Will I have to shield or self- isolate during my treatment because of COVID- 19?

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Patients say:

“If you have physical symptoms it is hard to explain over the phone.  In a face to face meeting the clinician can feel your body and see it, you can just point.  When the doctor can see your face they can read you and see that you might need a little more time for things to sink in.” 

“I am very happy to stay in the comfort of my home.  In the end the appointment depends on the relationship you have with your clinicians.  I have faith in mine and the telephone consultations have been relaxed.”

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Follow-up appointments

When you have finished the main part of your treatment (such as surgery and chemotherapy), you will be invited to follow-up appointments.  At this time you may be taking medication at home. 

You may also be having follow-up appointments if you are being treated for relapsed ovarian cancer.

Follow-up appointments would usually be face to face with your clinician; but now, because of the current public health crisis, the appointments are likely to be conducted over the phone or using the internet. 

When you are preparing for your follow-up appointment remember that any blood tests need to be done at least 24 hours before the appointment so that the results are available to be discussed.  Your hospital will let you know how they are arranging this.

The questions you ask will depend on your individual circumstances as well as how long you have been having follow-up appointments.  Although hospitals tend to have their own follow-up programmes ovarian cancer patients are commonly followed up for five years beginning with appointments every three months to four months.

Remember that the meeting is an opportunity for you to get the information you need.  The clinician is there to listen to you as well as to speak with you.

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Questions you might want to ask

Your follow-up appointment gives you the chance to ask questions and get the information you need.  Ask for anything you don’t completely understand to be fully explained.

Here are some questions that ovarian cancer patients often ask at follow-up appointments, depending on their individual circumstances.  They may help you decide what you need to ask.

How long am I being followed up for? 

How will I know if the cancer comes back?  

Can I have CA125 tests and CT scans? 

Who can I contact when I am at home?

Is my treatment still intended to cure the cancer?

Is my cancer now being managed rather than cured?

If I stop having active anti-cancer treatment can my symptoms be controlled?

I am feeling very anxious, is there support available?

Where can I find more information?

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By the end of your appointment you should know the time and date of your next follow-up appointment and whether it is face to face, by phone or online. 

You should also be clear about any action you need to take with regard to your cancer and what to do if your condition changes. 

If you are using treatment that requires blood pressure monitoring your clinician may suggest that you buy a monitoring device to use at home.

You should be given contact details for the appropriate points of contact for you within the Trust.

After the appointment you will be sent a letter detailing the consultation and a copy of this will be sent to your GP.

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Clinicians say:

"Patients need to be clear and honest about any side effects they are experiencing so the clinician can manage them when they occur, if left these side effects can become severe and more difficult to treat." 

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Patients say:

"My experience so far has been really positive.”

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If you would like to discuss anything about ovarian cancer, please phone our support line on 0800 008 7054 (phone calls only) or 07503 682311 (phone calls, text messages, Whatsapp). You can also email [email protected] . The support line is staffed Monday to Friday between 10am and 5pm, and until 8pm on Tuesdays.

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