TALKING ABOUT CANCER
Support to help talk about and understand your diagnosis
Having a diagnosis of cancer can mean you learn and use lots of terms you haven’t heard of before. How your friends and family talk about cancer can be upsetting. You may want to find some words that you feel comfortable with and let them know what these are. Some people name their cancer something funny and this helps them manage the treatment and psychological impact of cancer. Please also ask your medical team to explain any terms you do not understand.
Sometimes, talking about having cancer can help you to understand what is happening to you and it can also help ensure you get the right help and support.
If you find talking about the physical and psychological impact of cancer difficult with your friends and family, there are lots of cancer support centres and groups as well as online forums where you can do this. Sometimes it’s easier to talk to people we don’t know than it is to people who we are closer too.
Frequently asked questions
Who will support me and help me understand what is happening with my cancer and treatment?
Your local hospital and/or specialist cancer hospital will have a dedicated team to support you. These are often known as a Multidisciplinary Team (MDT). It is normal for all cancer cases to be discussed at a MDT meeting.
This team may include specialist cancer nurses, clinical oncologist, radiologists, pathologists, specialist surgeons including plastic surgeons, and research teams.
Dependent on the type of cancer and your needs during and after treatment, this team could also include other health care professionals such as dietician, physiotherapists, psychological support and genetic specialists.
You have the right to request to be involved in your MDT meeting where you care plan is being discussed.
I have been diagnosed with cancer and have an appointment with my consultant. What should I ask?
Here are some questions you might like to ask your doctor if you are pregnant and have recently been diagnosed with cancer. It is a good idea to have a someone accompany you to your appointments for support, so that someone else knows what has been said. You can ask to record the consultation on your phone as another way to help remember everything. Clinic appointments can be overwhelming, especially if there is a lot of information to remember.
How much experience does the team have in treating pregnant women with cancer?
How will you work with my obstetrician (a doctor who specialises in pregnancy and childbirth)?
Do you recommend any special tests?
What treatment plan do you recommend? Why?
In your opinion do I need to begin treatment right away, or should I wait to start treatment?
Could delaying treatment affect the outcome of my cancer?
What are the short- and long-term risks of my treatment plan to me? To the baby?
Will treatment affect my delivery? How?
Will treatment affect my fertility? What choices do I have around future fertility?
What support services and resources are available to me and to my family?
Will I be able to breastfeed?
Can I breastfeed if I have cancer or recently been through treatment for cancer?
The safety of breastfeeding will depend upon whether you are actively undergoing treatment at the time. Chemotherapy treatments have a significant risk of passing drugs that are potentially harmful to the baby through the breast milk, therefore breast feeding would not be advised during most chemotherapy.
We realise for many women this is added distress that they did not expect to have to consider.
If breast tissue has been treated with radiotherapy (after a diagnosis of breast cancer) the breast tissue may not be able to make milk due to damage to milk-producing glands. It would be safe to breastfeed from the other breast. If other parts of the body have been treated with radiotherapy it would usually be safe to breastfeed.
Some cancers (e.g. thyroid cancer) are treated with radioactive isotopes that are taken into the body. A mother could not breastfeed until after these isotopes have been completely cleared from the body. This can take several weeks but the radiotherapy team can advise.
If you have had breast surgery, it still may be possible to feed your baby from the remaining breast depending on other treatments given.
Depending on your individual circumstances; there may be other options available to you. Please speak to your midwife or health visitor for advice and support. There may also be a Specialist Midwife for Infant Feeding at the hospital and they may be able to assist in planning your feeding options for you and your baby.
Donor breast milk is something you can consider and discuss with your healthcare team. For further information please look at The Association for Milk Banking (UKAMB) on their website ukamb.org
What does having cancer mean for the birth of our baby?
The team caring for you will discuss the options for your baby’s birth. Options are likely to based upon where you are in your treatment schedule. Effective communication between the obstetric team and your oncology team are essential to ensure optimum outcomes for both you and your baby.
If you would like us to contact your healthcare team on your behalf or are worried or upset about anything please do contact us on firstname.lastname@example.org and we will do everything that we can to support you.
How will I cope with a new-born baby while undergoing treatment or recovering from treatment?
Mummy’s Star is very aware of this additional challenge for a family going through cancer treatment while caring for a baby.
Firstly, make a list of what you think you might need. Some examples are:
Food shopping and food prep.
Transport to appointments.
Do you have any friends, family or anyone in your local community who you could ask to help you?
Other suggestions for things that family or friends can do to help – asking them to come to mind the baby while you get some rest or you need to take a break and spend some time with your partner or friends.
If you have older children, you might like to consider asking for help with picking up and dropping off older children at school or social activities. Other options might include using other childcare such as breakfast and after school clubs, employing a childminder or au pair, if your child is old enough you might want to think about pre-school or nurseries. If you or your partner are employed, you might like to consider tax-free Childcare Vouchers (paid as part of your salary) that can be used to pay for most types of registered childcare.
We have further information about other organisation who may be able to offer support in our resources section.
How do I talk to my friends and family about my cancer?
Telling your friends and family is a very personal experience and it is your decision who you tell and when you tell them. Here are some good articles about telling your friends and family about your cancer.
How do I keep on with the everyday things such as food shopping, cooking and cleaning?
Each person is different and what they need help with will vary dependent on their local support network, such as family and friends. Here are some tips based on our experience:
- If you have friends or family nearby, now is the time to ask them for help. They will usually be only too happy to help. Try to have something specific that they can do but also be open to their suggestions.
- When friends, colleagues and family offer “Is there anything I can do to help?” try asking them for practical help such as picking up the children from school, stacking or unloading the dishwasher, changing the beds or walking the dog. It doesn’t matter whether it is big or small – people like to help.
- Internet shopping can be a help whether it’s grocery or other shopping.
- If you don’t like the idea of a friend or family helping you out, why not consider employing a cleaner.
I would like to go on holiday or stay away from home during or after treatment. Is this possible?
As each person’s condition varies, we cannot answer this question fully. We recommend that you talk to your health care team and find out what going away from home would mean for you. Before you book or plan a trip, you might like to consider the following:
- What treatment you are currently having?
Timing a trip away between chemotherapy sessions may be possible. If it is your first treatment, you might like to see how you react before attempting to go away from home. Some people feel awful for the first couple of days but then have a few good days. Other people can find that initially they can cope well with the treatment, but as the treatment continues the cumulative impact on their body can make them more unwell and recovery time after each treatment takes longer.
- Distance from home and means of travel?
Think about whether it's a couple of hours away or longer. Some people would prefer to go by car as they can stop when they want to, and they have more choice about where and when they get there. Other people prefer the relaxation offered by going by public transport such as by train.
- Travel insurance? (when travelling abroad)
Do you need it? Will it cover you? If you already have travel insurance, attached to your bank account for example, check the details carefully. It may not cover pre-existing medical conditions and failing to tell them in advance of your travel could invalidate your insurance.
- Are you covered byEuropean Health Insurance Card (EHIC)?
You are covered by the European Health Insurance Card (EHIC) until the end of 2020. This does not replace travel insurance but means that should anything happen you should expect the same level of care as anyone else living in the country you are visiting. You need to apply for one before you travel at gov.uk/european-health-insurance-card
- What about vaccinations?
It is currently recommended that people undergoing chemotherapy do not have ‘live’ vaccines. Talk to your health care team if you are considering any travel that requires or recommends vaccinations.
- Where are the nearest hospitals and health care centres?
If something happens while you are away, where would you need to go and how easy would it be to get there? Being prepared means that it would be less stressful if you need medical assistance. We suggest you talk to your health care team for advice on anything further that you need to know or take with you?
- The emotional benefits for you and/or your family?
The impact of a diagnosis and treatment of cancer may make you rethink what is important to you. It can also be hard on your immediate family and friends and you might like to spend some quality time with them. You might like a break from the physical and emotional impact of cancer.
For more useful information:
Who can help me understand the medical language?
Your healthcare team will help you understand the medical language they use, if you have any questions please ask them. On our glossary which explains some of these terms.
What can I do if I’m not happy about my care and treatment
If at any point you are not happy with what you have experienced through your diagnosis and treatment in the first instance please speak with your healthcare team If the issue is not resolved through them you may want to contact your local PALS (Patient Advice and Liaison Service). Most PALS services can be contacted through your hospital switchboard and/or website.
There’s lots of information on the internet but which are the reputable and reliable organisations & websites, where I can find out more about cancer and/or pregnant and have cancer?
There is a great deal of information you can access on the internet not all of it is reputable or reliable. We have listed some reliable sources on our resources section.