On 29 March 2012 Gransnet hosted a live webchat with Vivienne Maidens, the lead Macmillan breast care cancer nurse specialist at the Whittington hospital in London. Vivienne provides practical and emotional support to women with breast cancer as well as to their family and friends.
Q: Are Macmillan nurses trained in the rules and regulations of DLA and AA including the 'special rules'? jeni
A: Not all Macmillan nurses are trained in this however we do recommend (and give phone numbers for) calling the Macmillan Benefits Helpline and they are trained. Some hospitals also have Macmillan Benefit advisors attached specifically to offer patients assistance, help them fill in forms etc
Q: A close friend was recently diagnosed with breast cancer. I have done my best to let her know that I am thinking of her and have sort of generically offered to do anything I can to help - but can you offer some more concrete suggestions as to ways I can make her life easier while she undergoes treatment? rosiemus
A: While she's undergoing treatment perhaps you could shop for groceries or pick up prescriptions for her. Help with chores around the house such as getting the post, taking care of pets, cleaning, doing laundry, taking care of the garden etc. You could make dinner or take round a takeaway - or even watch a movie together. If she has children you could offer to babysit to give her a break - or take them to school or arrange playdates for them.
Organise a 'phone chain' or 'support team' of friends and family to check in with her on a regular basis. Go with her to doctor's appointments, keep her company during a treatment session. Go for a walk with her somewhere nice - lots of practical things that will make a difference.
Q: I have a close friend with a recent diagnosis. The prognosis is not great but she is being incredibly positive. She has said she finds the hardest thing (at the moment) the chemo sessions...not so much for the physical effects but because she spends them with other patients some of whom have been told that they have very little time left. How can I help her not to feel a) guilty that she is not in their position and b) scared that soon she might be? FeeTee
A: Feelings of guilt happen when you think you are to blame for something. For example something you did caused this cancer. Or you can feel that it's not fair that you are surviving when the next person is having a difficult time and the prognosis might not be so good. If you help her to acknowledge those feelings that can be the first step to letting them go.
Talking about this with a counsellor who is specially trained can also help her to move forward and not have those 'guilty' feelings. Whenever someone has a cancer diagnosis we always try to help them remember that each person is unique and that we all are made up in different ways and express our emotions in very different ways. When it comes down to diagnosis and prognosis you can never compare yourself to the person sitting next to you - even in a treatment area like a chemotherapy session or a clinic - because you don't know every little detail of their journey and their diagnosis.
Q: I've had friends/relatives who have dealt with the disease entirely differently. In your opinion is it better to face up to the realities of the diagnosis or to put them to one side and try to carry on "as normal'? kittyp
A: Patients have said to me in the beginning, when told of their diagnosis, that they have found facing up to it was the best way to fight it. Frightening as it is - and a lot of people don't want to believe that they have got a diagnosis of cancer - you usually get through treatments much better if you face up to it. You have less psychological distress and anxiety than those who might just carry on as normal and deny that they have anything wrong with them at all. I have seen quite a few people like that in my practice and they often have a much harder time overall.
Q: Can you recommend anything to make life easier for someone going through chemotherapy? I'm thinking about practical stuff that may help in any way. northerngran
A: There are a few practical things I outlined earlier in my answer to rosiemus. There are also a few medical things for when they start chemotherapy and they have no idea what it's going to be like for them. So things I would like to add are:
- Make sure they are fully hydrated at the beginning of the day that chemotherapy is to be administered - at least 2 litres of fluid the day before. It helps the veins plump up and makes it less traumatic. If you are well hydrated if your urine is a pale straw colour.
- Veins: if they know their veins are bad, get them to ask to have a central line (or portacath) put in at the time of initial breast surgery
- Always get them to warm their hands under hot water (or using a heat pad) where the nurse is going to put the i/v canula (this can be done up to half an hour before)
- Anti sickness - the first 2 or 3 days don't let them get behind with the anti sickness tablets - make sure they take them. If they don't work within 24-48 hours get them to phone their chemo or breast nurse and not suffer needlessly.
- Think about some relaxation exercises or techniques - start them 3 days before chemo (this is where friends can really help!) and continue during and two days after chemo.
- Make sure they plan to do nothing for the first few days after chemotherapy - especially for the first treatment- until they see how it turns out for them.
- Get her to see her dentist before chemotherapy starts. It's not advisable to undergo dental treatment during chemotherapy when there is a higher risk of bacteria getting into the body.
- A lots of people have mouth problems - sucking on ice chips during some treatments can often fend off mouth ulcers and sucking on lemon wedges can encourage extra saliva in the mouth (as long as they don't have mouth ulcers!)
Q: I am 66 and am currently undergoing radiotherapy following a lumpectomy. I have not asked about survival rates for my particular cancer and no one has told me, which I find a bit worrying - I feel if the news were good, they would have done. As a general rule, do you think it's better for women to know their survival rates and be realistic about their chances? fritter
A: The fact you are undergoing radiotherapy and that you are 66 years of age shouts good prognosis to me with the facts that I have in front of me. You are very welcome to phone or get in touch with your breast cancer nurse or make an appointment to see your consultant breast surgeon or consultant radiotherapist and they will be more than happy to sit down and discuss this with you.
Q: There's a story in the papers that even one glass of wine a day can contribute to breast cancer. Don't you feel that this sort of thing (which feels like a bombardment of rules and tellings-off) is unhelpful in lots of ways, leading those of us who have had breast cancer to feel that we must have done something wrong? floop
A: I totally agree with you. Excessive amounts of alcohol have been thought to raise oestrogen levels in both men and women - moderate amounts of alcohol will not be detrimental to your health. If you stick with the normal guidelines of healthy eating and drinking then you are not at an increased risk of breast cancer.
Q: Can you offer tips on how to react when someone is diagnosed. It's so hard to know what to say and trotting out platitudes seems so wrong. I'd like to think that I can make a more positive contribution. northerngran
A: Some of the things that you could say include
- I'm sorry this has happened to you.
- If you ever feel like talking I am here to listen.
- I care very much about you.
- Is there anything I can do to help you now?
Unhelpful things to say might be
- I know just how you feel.
- You need to talk.
- I know just what you should do.
- I don't know how you're going to manage.
- Don't worry.
- I'm sure you'll be fine.
- I feel helpless.
Q: I have a friend who has been diagnosed with second stage breast cancer and is talking about going to Mexico for treatment with Laetrile, which I understand is banned in the UK. She intends to refuse chemotherapy. I feel she is making a mistake - an expensive mistake, at that. But I feel it's her life and I feel awkward about challenging her decision over her health. What would you say to her, if you were in my position? AussieGran
A: I've had that happen a few times. I would simply listen to her reasons why she wants to do this, ask her if she has really researched this, ask her if there is any evidence that this treatment really does work and suggest that she could combine alternative treatment with conventional treatment. Ask her to speak to her breast consultant and show him what she intends to take when she goes to Mexico. At the end of the day it is going to be her decision though we will always be available should she change her mind and go back to conventional treatment.
We do know that the treatments we are offering for breast cancer have been researched and there is evidence to show that they do prolong life.
Q: What is the current advice on breast checking? I have been told to prod and to look but I have heard that the prodding, apart from being uncomfortable, doesn't usually find anything. As far as looking is concerned, I feel ridiculous doing it and I have no idea what I'm looking for. What do you advise? lurker
A: Firstly - look at your breasts in the mirror, from the neck down to the waist. Know what is normal for you. Look for any changes in the skin for example puckering, any dimpling in the skin, any rash on the breast, any scaly skin or rash on the nipple or areola. Any obvious looking lumps that you can actually see.
Then you can check your breasts in the shower or lying down. Standing up, raise your right arm above your head and examine your breast with the pads of your first, second and third fingers starting from the nipple and working in circles right up into the tail of the breast which is towards and under the armpit. Then reverse for the other side. Lying down is the same process.
The best time to examine: if you are still having periods check at the end of your period or first week of your cycle. If you are post menopausal pick the same day of each month (i.e. the first, the last etc.) If you find any abnormality you are worried about report straight to your GP.
Q: A friend in her 30s was screened regularly because there was a (genetic) family history. Her mammogram came back clear. Two months later she was diagnosed with fairly advanced breast cancer. How could this have happened? And how can you encourage me to have faith in mammograms after this? cathyl
Q: I have been having mammograms since I was 25 (now 55) because my mother died at the age of 54 from breast cancer. I now worry that the radiation has done me harm and is more of a risk for breast cancer than my genes. Can I ask for ultrasound screening on the NHS and would this be effective? cocktailstick
A: Sometimes mammograms don't pick up breast cancer and the reason is that younger women have very dense breast tissue. It's possibly better to have an MRI of the breast rather than a mammogram in these circumstances. Today we have digital mammograms and they are more sensitive and picking up many more breast cancers. But of course cancers can occur between mammograms (the screening programme is every three years) and they are called interval cancers.
Ultrasound is very good for detecting solid lumps but is not always trustworthy (you can't see things like signs of very early breast cancer such as micro calcification). It is available on the NHS.
On the radiation issue - it is only a very small amount used. I don't think it is particularly harmful for women. When a woman is diagnosed with breast cancer in the UK she automatically goes forward for a yearly mammogram for minimum five years.
Q: There has been a lot of publicity recently about mammograms picking up pre-cancerous tissue that is in fact perfectly "normal". Some doctors seem to believe that unnecessary treatments are being carried out on women who wouldn't ever have gone on to develop full-blown breast cancer. What is the latest thinking on this? solidair
A: I would always recommend women have the three-yearly mammograms under the NHS screening programme as picking up early breast cancers (i.e. early detection) means that it's easier to treat. And generally prognosis is much better. If there are pre cancerous cells within the ducts of the breast, known as DCIS, this needs to be removed surgically. Otherwise it will develop into invasive breast cancer. So this kind of treatment is very necessary.
A: The short answer is yes I'm afraid.
Q: I can't make head or tail of all the advice on the web about whether it is safe to take HRT.. I have been told by my GP that taking tibolone is not risky, but I have since read that there is an increased risk of breast cancer on tibolone. What is the latest thinking? sodastream
A: As a general rule, it is believed that HRT does contribute to breast cancer for women who are post menopausal. There is a general belief providing you have not already had a diagnosis of breast cancer, it is safe to take HRT for 3-5 years after the age of 50. But before doing so you should discuss your risk factors for breast cancer thoroughly with your GP. I can't comment on tibilone specifically.