Breakthrough Breast Cancer

breakthrough logoMumsnet are delighted to be working with Breakthrough Breast Cancer during October, Breast Cancer Awareness Month.

Back in September, we asked you to send us the questions you'd like to ask Breakthrough's expert panel. Here they are - with the answers you were waiting for...

Signs and symptoms | Breastfeeding  | Breast screening  |  HRT | Deodorant | Bigger breasts and underwired bras | IVF | Prevention | Incidence rates | Breast cancer in the family | Genetic testing | Breast screening in family with breast cancer history | Male breast cancer | BRCATA | Breakthrough Generations StudySecondary breast cancer | DCIS | Breast cancer treatment and researchMiscellaneous

THE EXPERT PANEL
Dawn Symonds
is the lead breast care nurse at Buckinghamshire Hospitals NHS Trust. 
Every day, Dawn helps women come to terms with the fact that they have breast cancer, helping them through their treatment and beyond.
Dr Sarah Cant
is policy manager at Breakthrough Breast Cancerand an expert on a wide range of subjects, including what we currently know about the causes of breast cancer, breast-cancer services and treatments, and how to be breast-aware.
Dr Kai-Keen Shiu is a medical doctor who specialises in cancer treatment. He is taking time out from his clinical work to carry out vitally important research as an Avon Clinical Research Fellow at the Breakthrough Breast Cancer Research Centre in London. His research looks HER2-positive breast cancer, which accounts for one in four cases of breast cancer, and why some women in this group become resistant to treatment.

 
Signs and symptoms of breast cancer


cookielove: I have quite small breasts and, although I like to think I know what they are meant to feel like, I'm not sure. When I feel them, especially my right one, I can feel something almost like a plate that's about an inch long and wide, maybe, and feels bumpy and sore if I prod it too much. I can sort of feel one on the other side, too, so I assume it's meant to be there?

cocolepew: Do you have to have a lump to have breast cancer? I've had an ache in one of mine for a few months - the pain goes up into my armpit.

TracyK: I have always had lumpy breasts, so never know if I have a 'lump' or not. I've noticed recently that I have a stronger than usual underarm sweat smell from one armpit only (weird!). Is this anything to worry about? Soap doesn't really take the smell completely away but it's OK on the other side!


ggirl: I have itchy, flaky nipples. A few years ago, it was investigated and nothing was found. I am assuming that, because it affects both nipples, it is nothing serious. Is that correct?

dingdong05: What is a worrying lump and what is normal? Or is it safer to say 'get all lumps checked'?

VeryHungryLennipillar: Other than an obvious lump, are there any other breast changes that could indicate cancer? I have quite large breasts and it's pretty hard to feel right through them.


Being breast-aware simply means being on the lookout for any unusual changes and getting them checked out by your doctor. It's as simple as TLC...

  • TOUCH your breasts. Can you feel anything unusual?
  • 
LOOK for changes. Is there any change in shape or texture? 

  • CHECK anything unusual with your doctor.

No one knows your body better than you and everyone will have their own way of touching and looking for changes – there's no special technique and you don't need any training. It's important to check the whole breast area, including your upper chest and armpits. Try to get into the habit of doing it regularly, maybe in the bath or shower, or before getting dressed in the morning.

Lumps are vital to look out for but, even if you do find one, in nine out of ten cases, they turn out to not to be cancerous. And remember: you're not just checking for lumps. Look for unusual changes to your nipples, in the size or shape of your breasts or in skin texture. There's plenty more information on our website. 
You can also call the Breakthrough Breast Cancer Information Line for free on 08080 100 200.

If you've noticed something unusual and are worried, go to your doctor as soon as possible. It might not be anything to worry about but it's better to get it checked out.



Breastfeeding and breast cancer

NotSoRampantRabbit: I am breastfeeding and have recently started getting pains in both breasts (not blocked duct/mastitis) which feel deep in the breast tissue. Should I get it checked out?

bronze: How are you supposed to tell what a lump is if you are breastfeeding? This scares me a lot, as someone I know died last year. She was breastfeeding and didn't notice the lump and, by the time anyone realised, it was in her bones.

Caz10: Breastfeeding has made me very confused in terms of breast awareness. Like others, I worry I am ignoring lumps and bumps and pain, and just attributing them to breastfeeding. Maybe I shouldn't?

whomovedmychocolate: Can you actually get breast cancer while you are breastfeeding? I've always assumed any lumps are related to breastfeeding but perhaps that's daft and I should be going to the GP? Also, since starting breastfeeding, my nipples are very different: sometimes, they are puckered in and sometimes out. I know that can be a sign of breast cancer, but is that normal for breastfeeding? I'd also like to know why breastfeeding reduces the risk of breast cancer and if that effect is quantifiable: if I breastfeed for a year, say, does my likelihood of getting breast cancer go down by 10%, 80% or what? What about those who only feed a few days: does the protective effect still kick in?

VeryHungryLennipillar: I would also like to know what the incidence of breast cancer is in breastfeeding mothers. I am having a lump checked out at the moment which is probably breastfeeding-related. It is very confusing to know what to look for. Also, why are mammograms not effective for screening in breastfeeding mothers?

JulesJules: I read somewhere that the risk of breast cancer is reduced by 7% per baby and 4.3% for each year of breastfeeding. Is this right? Does it make any difference if a woman is older when she starts a family? Is the rising incidence of breast cancer in the UK partly due to having fewer children and lower breastfeeding rates, or mainly other risk factors, such as poor-quality diet and lack of exercise etc?

It is important to remember that four out of five breast cancer cases occur in women who are over 50, so breast cancer in women who are breastfeeding is uncommon. Breastfeeding women should examine their breasts for any unusual changes. It is common for breasts to be lumpy during breastfeeding but, if you notice anything unusual or have any concerns, talk to your GP. Breastfeeding slightly reduces your overall risk of breast cancer, and the longer you breastfeed, the more your risk of breast cancer may be reduced. This includes breastfeeding one child or more than one child at different times. Breastfeeding one child for one year, for example, would lower your risk of breast cancer as much as breastfeeding two children for six months each. 
For more information on how breastfeeding reduces the risk of developing breast cancer and by how much, see our factsheet Breastfeeding and Breast-Cancer Risk: the Facts.



Breast screening

Doobydoo: I read that women over 40 should have mammograms. I am 40. Should I go for my first mammogram? How often should I go? How much would it cost?

Dazmum: I am now 50, so would I be eligible for a regular mammogram screening? Does my surgery automatically notify me of this or do I have to arrange it myself?


Breast cancer is more common in older, post-menopausal women. Four out of five breast cancer cases in the UK are in women over the age of 50. Women over 50 are offered free, routine breast screening (also known as a mammogram) every three years through the NHS Breast Screening Programme. Mammograms (special X-rays of the breast) are not available to younger women as it is not as effective in detecting any unusual changes. This is because breast tissue is denser in younger women, which makes it more difficult to see any cancer on the X-ray. Your first invitation to attend breast screening will arrive between your 50th and 53rd birthday, and will be sent from your local NHS Breast Screening Service. It's important that you attend. 

For women over 50, breast screening can pick up changes at a very early stage - even before you might see or feel anything. If there is something there, the sooner it's found, the better the chance that you will be successfully treated. Breast screening is quick, straightforward and free, and usually takes place at a health centre, hospital or a mobile screening unit. All NHS breast screening units are staffed by women. 

It can sometimes feel a little uncomfortable or awkward, especially the first time, but you will always be treated respectfully and sensitively. You can take a female friend or family member with you, if you would like to or need to. If the appointment that you're are offered for screening doesn't suit you, just contact your local screening service. Information on how to re-arrange your appointment and contact details will be on your invitation letter. You'll continue to receive invitations to breast screening every three years until you reach 70. Thereafter, you can make your own appointments through your doctor or local breast screening unit. In 2007, the Government announced an extension to the current screening age limits and, by 2012, all women aged 47 to 73 years will receive invites. The NHS Breast Screening Programme website has further information.

whomovedmychocolate: Why do they smush your boobs so hard against the plates when they do a mammogram? It's very uncomfortable and, much like a smear, I think a lot of people put it off for that reason. Is there a reason why they have to squash you in this way?

A mammogram is an X-ray of the breast that can pick up breast changes before they can be seen or felt by hand. In order to get the clearest image possible with the lowest amount of radiation, it is necessary to compress the breast with a clear plate. Two views of each breast are needed. Some women find the procedure uncomfortable or painful but it only last a few seconds and won't damage your breasts. It's important to remember that breast screening saves around 1,400 lives in England each year.



HRT and breast cancer risk 


Prettycandles: It's my understanding that post-menopausal women taking HRT are at increased risk of breast cancer. What about peri-menopausal women? I am 43 and have had to start HRT because I could not cope with the severity of my menopausal symtpoms.

Taking hormone replacement therapy (HRT) to treat severe menopausal symptoms can increase the risk of breast cancer and that risk increases the longer it's used. But the evidence shows that short-term use of HRT (less than five years) is likely to have only a small overall effect on breast-cancer risk. The risk is greater with combined HRT (oestrogen and progesterone) than with oestrogen-only HRT. The good news is that the increase in breast-cancer risk begins to fall as soon as HRT is stopped, no matter how long you've been taking it for. Within five years of stopping HRT, your risk of developing breast cancer is about the same as if you had never taken it.

Anyone considering taking or stopping HRT should speak to their GP. The decision to start, stop or change HRT needs to be an informed choice made by you with the help of your GP. This decision should take into account the impact of menopausal symptoms on quality of life, medical history, the pros and cons of HRT, as well as personal preference. For more information see Breakthrough's fact sheet - Hormone Replacement Therapy and Breast-Cancer Risk: the Facts.

Women who go through the menopause at a younger age have a lower risk of breast cancer, probably because they stop producing female hormones earlier. Their risk of breast cancer will be increased by taking HRT to replace these hormones but it won't be any higher than a woman of the same age who is producing these hormones naturally.  Every woman's risk of breast cancer is different and you should talk to your GP before beginning HRT.



Deodorant and breast cancer

Caz10: Is deodorant linked to breast cancer? I use a very 'strong' brand and always have a slight twinge of worry when I put it on.

There is no good scientific evidence that deodorants or antiperspirants increase the risk of breast cancer. Women are only advised to avoid using deodorant or talc containing aluminium when they go for a mammogram (breast screening) because aluminium might show up on an X-ray and give an inaccurate reading. For more information, see Breakthrough's fact sheet, Deodorants, Antiperspirants and Breast-Cancer Risk: The Facts.



Bigger breasts and underwired bras

Titsalinabumsquash: I am so concerned about cancer, especially breast cancer. This is probably a really silly question but are you more likely to get it if you have bigger breasts? Also, does the type of bra you wear affect your risk? Wearing a bra overnight, for instance, or the wrong size or underwired? I also read that if you get hit in the breast, it can heighten your chances of getting it?

There is no convincing scientific or clinical evidence that wearing any type of bra can increase the risk of breast cancer and women don't need to be concerned. However, bras that don't fit properly can cause discomfort and breast or back pain, so it's important for women to be properly measured and fitted for their bras.

There is no evidence that a bump or injury to the breast causes or increases the risk of developing breast cancer. Sometimes, a woman may notice an unusual change in her breast, such as a lump, after a knock because she checks her breasts more carefully. Additionally, there is no good evidence that shows a correlation between the size of a woman's breasts and her breast cancer risk.


sallyjaygorce: Does plucking hairs from around you nipple increase cancer risk?


There is no scientific evidence that plucking hairs from nipples increases breast cancer risk.



IVF and breast cancer risk

Carriemumsnet: Does IVF treatment increase the chance of developing breast cancer?"


Since IVF (in vitro fertilisation) treatment increases levels of female hormones, such as oestrogen, it has been suggested that it may increase the risk of breast cancer. IVF is a relatively new procedure, so we still don't know its long-term health effects.

A very small number of studies have looked at the effect of IVF on breast-cancer risk but, so far, there is no clear evidence of a link. One large study found that, overall, women who received IVF treatment were no more likely to develop breast cancer than women who had not. This study also found that, just like women who have had a natural pregnancy, women treated with IVF had a slightly higher risk of breast cancer shortly after childbirth, and this risk disappeared in the following years. Other studies have shown that IVF might slightly increase the risk of breast cancer in older women undergoing the procedure.

More research is needed. If you are worried about IVF treatment and breast cancer risk, you should discuss your concerns with your GP or fertility specialist.



Preventing breast cancer 


Fayrazzled: What would be your top tips for preventing breast cancer generally?



Breast cancer is thought to be caused by a combination of our genes, lifestyle and environment. At the moment, we don't have enough information – or the means – to prevent breast cancer completely. Although many of the established risk factors for breast cancer are beyond our control, such as our height or getting older, there are some lifestyle factors we can change that may reduce the risk of developing cancer in the future. For example, we can consider how much alcohol we drink, our weight and the amount of exercise we do. Limiting how much alcohol we drink, being physically active and maintaining a healthy weight can all help to reduce the risk of breast cancer.
 


Breast cancer incidence rates 


Saggarmakersbottomknocker: "I would like to know if, statisically, there is an increase in breast cancer rates among younger (pre-menopausal women). My maternal grandmother died from breast cancer in her late-60s, and I grew up with the impression that it was an older woman's disease. Now, in my mid-40s, I know, or know of a dozen women who have or have had breast cancer in the last five years, including a 19 year old who had to have a double mastectomy. Are rates in the younger women increasing or are we just more aware and talking more about it?"

sallyjaygorce: Have cases of breast cancer increased and, if so, why do you think this might be?

Breast cancer is the most common cancer in the UK, and nearly 46,000 women are diagnosed with the disease each year. Breast cancer in younger women is uncommon: four out of five cases are in women who are over 50. But the incidence of breast cancer is increasing. This is, in part, due to an ageing population, since the risk of breast cancer increases as you get older, but also due to changes in lifestyles that also affect breast cancer risk, and to more cancers being picked up since the introduction of breast screening. Over the last ten years, the biggest increase in incidence has been in the 65-69 age group, which is likely to be due to breast screening being made available to this age group. During the same period, the number of younger women diagnosed each year has remained steady.

Although overall incidence is increasing, it is important to remember that more women than ever before are surviving breast cancer due to better awareness, screening and improved treatments. It is estimated that at least four out of five of women diagnosed with breast cancer in England and Wales will survive for at least five years, and survival rates have been improving steadily over the last 20 years.


Breast cancer in the family

Dazmum: My mother's sister died from breast cancer last year, and my great-grandmother died from it, too, so it seems to have skipped a generation. Would this mean that we only have a tenuous genetic tendency towards it, or was it just bad luck? Would this actually count as a family history of breast cancer for me?

NotSoRampantRabbit: My mum is currently undergoing treatment for breast cancer (aged 65). Both my grandmothers died pre-menopausally (maternal GM only 34) from breast cancer. Should I be pushing for early mammograms? Or should my mum be tested for BRAC? I also have a daughter - should I be requesting tests for me?

Marmaduke: Oh and another, my mother-in-law also died from breast cancer. I have two daughters: are they at high risk?

LeonieSoSleepy: My husband's aunt was just diagnosed with breast cancer this week. Will that impact our daughters and their future health?

shonaspurtle: My mum was diagnosed two years ago aged 59, and they reckon it may have been connected to long-term HRT treatment she'd been receiving. No other immediate family members have breast cancer. Should I be asking for any sort of screening given that there doesn't seem to be any sort of genetic component and she wasn't diagnosed pre-menopausally?"

ggirl: My daughter's paternal grandmother had breast cancer in her 20s, as did numerous other woman on that side of the family. Her maternal grandmother had breast cancer in her 70s. What are my daughter's risks and how often should she be checked?

Lulalullabye: My husband's mother and auntie both had breast cancer. His auntie died. We have two daughters. Can the breast cancer gene pass through my husband to them, and when do you pose the question to them of whether to get tested for the gene?

FabBakerGirlIsBack: My Nana had breast cancer and was given the five-year all clear, only to die of lung cancer which had spread. Is my daughter at more risk? My nana was my dad's mum.

Fayrazzled: My paternal grandmother died from breast cancer in her early 50s. Am I at increased risk or is the genetic link only on the maternal side?

Most women who develop breast cancer do not have a family history of the disease. The risk of having hereditary breast cancer is low. In fact, it is believed that only around one in 20 of all breast cancers are due to inherited faults in breast-cancer genes that lead to a high risk of developing the disease. For most women age – getting older - is their biggest risk for breast cancer. A person is said to have a family history of breast cancer if they have an unusually high number of close relatives with breast cancer, often at a younger age than would normally be expected (this could be on either your mother's or your father's side of the family). So, having one relative diagnosed with breast cancer at the age of 50 or older usually wouldn't mean that you have a family history.

A moderate family history means you may be at a moderate risk of developing breast cancer. Having a close relative (such as your mother, daughter or sister) diagnosed with breast cancer under the age of 40, or two family members on the same side, (mother, daughter, sister, grandmother or aunt) diagnosed with breast cancer over the age of 50 may be considered a moderate family history.

A strong family history means you may be at high risk of developing breast cancer.  Having two family members on the same side, such as your mother, daughter, sister, grandmother or aunt, diagnosed with breast cancer under the age of 50, or three family members under 60, or four members at any age may indicate that you have a high risk of developing breast cancer.

Keep in mind that blood relations on both your mother's and your father's side need to be considered separately. 
Cases of male breast cancer, ovarian cancer or cancer in both breasts in the family may also affect your risk of breast cancer. If you have any concerns about your family history, consult your doctor to discuss this. Your doctor will be able to let you know what your family history means for you or if you may benefit from screening from an earlier age. You should take with you as much information as possible.


Genetic testing 
 

TheOldestCat: My lovely (and much missed) sister-in-law had one of the BRCA mutations. Should my DH (her brother) be tested, since we have a daughter? (I know men can develop breast cancer too). He has a 'strong' family history - sister had it in her 30s and aunt in her 40s. 

Nancy66: Now that scientists have discovered a specific breast cancer 'gene', wouldn't routine screening for this make more sense and be more cost effective in the long run? 

Genetic testing is currently only offered to people who have a strong family history of breast cancer (at high risk of developing breast cancer). Genetic testing is currently only offered to people who have a strong family history of breast cancer (at high risk of developing the disease). Genetic testing looks for faults in two genes, BRCA1 and BRCA2. Faults in these genes are sometimes found in families where there is strong history of breast cancer. Women who are found to have a faulty BRCA genes are at a high risk of developing breast cancer. There are two stages to genetic testing:

  1. Diagnostic testing (mutation searching). This involves searching the DNA of a relation in your family who has - or has had - breast cancer to see if there is a fault in one of their breast cancer genes.
  2. Predictive (mutation) testing - if a family gene fault is found, other family members not affected by breast cancer can have their DNA tested – if they wish. If a gene fault is found in one of your relations, and you decide to have a predictive test, you'll need to have genetic counselling first. More information on what the results of a genetic test might mean is available at http://breakthrough.org.uk/breast_cancer/family_history/genetic_testing.html

The children of a person carrying a fault in the BRCA1 or BRCA2 gene have a one in two (or 50%) chance of inheriting that fault, regardless of whether or not that person has had cancer. This is because they inherit one gene copy from each parent, and they are as likely to inherit the normal copy as they are to inherit the faulty copy.  Genes can be inherited from either the mother or the father. If someone does not inherit the faulty gene found to be running in the family, then they have two healthy copies of the BRCA1 or BRCA2 gene, and they cannot pass on a faulty copy to their children. Breast cancer is thought to be caused by a combination of our genes, lifestyle and environment, however very little is known about the exact causes. It is important to remember that although inheriting a faulty breast cancer gene means you have a high risk of developing breast cancer, it does not necessarily mean that you will develop the disease.

 

Breast screening for women with a family history of breast cancer

avoidingthegym: My mother has had breast cancer twice post-menopause (either side), four years apart and had lumpectomies both times followed by chemotherapy. She has been clear for over 12 years now. I am 43 and my sister 40 and we have been advised to have early mammograms due to our higher than average risk but wondered if we would be eligible for these on the NHS? Also isn't the breast tissue too dense in your 40s to show anything?

yummyspottyblueberry: I have been told that cervical/ovarian cancers can be linked to breast cancer. My maternal grandmother and two aunts died from ovarian cancer, my mother and I have been treated for ovarian cancer 'cells' yet I got raised eyebrows in the breast clinic for being referred by my vigilant GP for a breast lump investigation and was told they/I were being 'over cautious'. I am also not scheduled for a mamogram until 50 (am 29) Why?  

Heated: As a woman who's already 'booked in' for mammograms starting at 40, why aren't women under 40 with a family history of premenopausal breast cancer offered MRI scans? Under what circumstances are women without breast cancer offered a preventative elective mastectomy with reconstruction?

marmaduke: My mum died of breast cancer. How do I find out if I can have early screening/checks? Is this available to me? I have read about people having both breasts removed as a prevention method as they were at high risk. How do you know if you are at high risk? Where can you go to find out? 

HerHonesty: My family carries the BRCA2 gene, for which I have been tested and get the result in November. How reliable is the test - can they get it wrong? If I am a carrier are there any known/proven ways of preventing getting breast cancer and are these any different to what they recommend to non-carriers (ie is there any point trying to prevent it, what's the point of finding out if I am a gene carrier?) Also, please, please, please can you do some lobbying to get screening programmes more uniform across the country? I currently come into ondon at least 6 times a year for mri, mammogram, ultrasound, blood tests at two different hospitals (which I acknowledge I am very very lucky to have). I live two hours out of london, so the expense and time spent is massive. It seems silly when I live about ten minutes away from three hospitals. My PCT don't offer the same screening, only biannual mammogram. 

All women over the age of 50 are offered routine breast screening through the NHS Breast Screening Programme. However, women with a family history of breast cancer that suggests they are at moderate risk of developing the disease at a younger age are entitled to yearly mammography from the ages of 40-49. Those with a family history that suggests they are at high risk of developing the disease are entitled to this and in some cases an additional yearly MRI scan from the ages of 30-49. Entitlement to breast screening from an earlier age is determined by a qualified healthcare professional and will depend on your risk of developing breast cancer, based on your family history. Some women who are at high risk of developing breast cancer, including those with a confirmed BRCA fault choose to have surgery to reduce their risk of breast cancer. Removing the breasts (prophylactic mastectomy) can reduce the risk of breast cancer developing by 90% over 14 years. This does not mean that the risk is increased after 14 years, there just isn't enough long term research to tell us what the longer term benefits are yet.

Some women also have their ovaries removed (prophylactic oophorectomy), which can reduce the risk of developing breast or ovarian cancer in the future. Risk reducing surgery is not an option that will suit everyone and if you are found eligible for this surgery you may need a lot of time, information and support to consider whether this is the right course of action for you. Your geneticist will be able to go through the risks and benefits of risk reducing surgery with you before you make a decision. For more information about what it means to have a family history of breast cancer and genetic testing, please see the answers to the previous questions.

BelleWatling: There have recently been reports that some specialists believe that the existing screening programme for breast cancer throws up a significant number of false positives and there is over-diagnosis of breast cancer. This is one such discussion at the blog of a US breast cancer surgeon and another in The Times. What are your views on this? My interest in this is: I am 35 with two close relatives (mother and aunt) who have been treated for breast tumours. They were diagnosed by routine mammograms both post-menopausally, and promptly and successfully treated with surgery and some radiotherapy. There has been no recurrence so far (6 years and 12 years since original diagnosis) touch wood. Because of this (my age/family history) I have been booked in for annual mammograms. However, as I am relatively young and symptom free (ish - I have a small epidermal cyst in one breast, diagnosed through ultrasound but going to the breast clinic led to the mammogram booking) I am concerned. Is my risk of being treated unnecessarily higher or lower than my risk of something serious being detected? Should I go ahead and have the mammogram? (I am currently breastfeeding so wouldn't have it for a while). I know this question might be controversial btw as I know how lucky I am to be offered in the first place. 

Breast screening detects cancer at the earliest possible stages, when no signs may be noticeable – and the earlier cancer is diagnosed, the better the chances of successful treatment. Unfortunately, it is not currently possible to predict which cancers picked up by breast screening will cause harm in a woman's lifetime, so treatment is usually offered to all women. It is extremely important women are given enough clear and good quality information about breast screening and, if necessary, their treatment options so they can make informed decisions. However, current evidence shows that the benefits of breast screening carried out under the NHS Breast Screening Programme outweigh the risks. The NHS Breast Screening Programme remains the gold standard in detecting breast cancer and plays a vital role in the UK's efforts to increase survival from the disease. It is estimated to save around 1,400 lives each year in England alone. Women who are offered breast screening at an earlier age should also be given information about the risks and benefits of the extra surveillance.  The frequency and type of breast screening offered depends on their risk of developing breast cancer which should have been determined by a specialist, according to guidelines from the National Institute for Health and Clinical Excellence.  If you are worried about breast screening you should speak to your GP.

 

Breast cancer in men 
 

LedodgyDailyMailstinksofp: Why do you not publicise the fact that men get breast cancer too? Also like women is the hereditary factor a concern for men too? I ask because having a mother, grandmother, and great grandmother who have died from breast cancer, I am about to undergo tests to see if I have the gene. I know if I have it then my children have a 50 per cent chance of getting the gene does this include the boys?

Breast cancer is over 100 times more common in women than in men, but each year in the UK around 300 men are diagnosed with the disease. If men have a family history of breast cancer, they may be at an increased risk themselves. Ask your GP to help you work out what increased risk, if any, the men in your family may have. Up to 2 in 5 of male breast cancer cases are due to inherited faults in the breast cancer genes BRCA1 and BRCA2. This means men with breast cancer are eight times more likely to have the hereditary form than women with breast cancer.  If a man has a confirmed BRCA mutation then his blood relatives may also carry the same genetic change, for example any of his children (boys or girls) have a 1 in 2 chance of inheriting the gene. For information on what it means to have a family history of breast cancer, genetic testing and screening for women with a family history of the disease, please see the answers to the previous questions.

 

BRCATA 


HerbertSnodgrass: A question about a rare genetic link to breast cancer. There is general awareness of the BRCA1 and BRCA2 genes and the increased risk relating to them. There is almost NO awareness of the much rarer BRCATA, which is related to a balanced translocation between chromosomes 11 and 22. This apparently results in a 'tenfold' increased risk of developing breast cancer. See link from the cancer research website. If lifetime risk of developing breast cancer is 11%, then a tenfold increase would mean 10x11% = 110%! Which is a nonsense, as it suggests an absolute certainty of developing cancer. Is this risk really comparable or even higher risk than the BRCA1 and 2 genes? Nobody (neither geneticists nor cancer experts) can advise me on what type or frequency of screening should be advised for someone with this translocation. Therefore nothing is being done at all. Please, is there someone in Breakthrough Breast Cancer prepared to read the studies showing this worrying link and advise accordingly? (There are only three studies as far as I am aware and they all show varying levels of increased risk.) Otherwise my mother and I will continue to live with the knowledge that we may have a tenfold increased risk (an almost certainty?) of developing breast cancer but no particular action will be taken to screen us other than the standard population mammograms. I'm not sure if my mother is even called up for these now that she is over 70, and I am apparently not to even bother to go for screening until I turn 40. 

Some studies have suggested that the particular genetic fault that you describe may be linked to an increased risk of developing breast cancer. Unfortunately, it's difficult to give general advice about risk from translocations because these differ from family to family. However, a genetics specialist should be able to tell you more about what the specific genetic changes present in your family mean for your risk. If this explanation is not clear to you, you can ask your doctor as many questions as you need to.

Women over the age of 50 are entitled to breast screening every three years as part of the NHS Breast Screening Programme. Up to the age of 70, women will be invited automatically, after this age they are still entitled to screening and can make their own appointment via their GP or local breast screening service. Some people determined to be at a moderate or high risk of breast cancer at a younger age may be offered screening before age 50. The benefits of screening before age 50 are calculated against the risk of developing breast cancer during this time. Your doctor should be able to tell you what screening is appropriate for you and why.

Regardless of your risk it's important for all women to be breast aware. This means knowing what your breasts look and feel like normally so you can be aware of any unusual changes and check them out with your doctor as soon as possible. For more information on the signs and symptoms of breast cancer please visit our website breakthrough.org.uk/tlc.

 

To see Mumsnetters' top-ten list of the best piece of advice they've ever had (about anything, life, love, health, children - whatever), click here.

Breakthrough Generations Study 


 bronze: I've signed up and given my blood samples etc. Are you still actively pursuing candidates? A lot of people seem to want to know how family links who should be tested etc. For example both my aunt and great aunt (maternal side) have and had breast cancer is this too tenuous a link to worry about being tested? 

The Breakthrough Generations Study, in partnership with the Institute of Cancer Research, is investigating the causes of breast cancer and in particular will collect and examine information on the causes that might be preventable. This study aims to follow 100,000 women in the UK over 40 years. The Breakthrough Generations Study includes women from all walks of life, from age 18 upwards, and aims to be of benefit for preventing breast cancer in present and future generations. Although the study has now met its target for recruiting 100,000 women you are still able to join. For more information on the study and to order an information pack please visit http://www.breakthroughgenerations.org.uk/index.html. For information on family history & genetic testing please see previous answers.

 


Secondary breast cancer

Carriemumsnet: Do you think more should be done to educate people who have had breast cancer about what secondaries they are likely to get so they can be on the lookout for them? No-one told us anything about this when my mother had her mastectomy back in '89, so we ignored the unexplained aches and lack of appetite/ swollen belly which turned out to be fatal bone and liver secondary cancers. We'll always wonder if these might have been treatable if they'd been caught earlier. 

After breast cancer treatment all women should agree to a follow-up care plan with their doctor. The purpose of follow-up is to detect and treat any local recurrence of breast cancer, deal with the side-effects of treatments and provide psychological support. Most doctors would agree with patients being seen every six to 12 months for the first one and two years, and once a year after that. Some patients at high risk of their cancer returning may be seen more often. It is recommended that most patients have follow-up appointments for five years.

In England and Wales, guidelines from the National Institute for Health and Clinical Excellence (NICE) published earlier in 2009 state that as part of this follow-up, women should be offered annual mammography to detect if the cancer comes back in the same breast (local recurrence) or a new cancer starts in the other breast. Patients in Scotland should also receive regular mammography.

In addition to this all women should be told, and be given written information, about the symptoms to look out for. Routine tests to detect metastatic cancer (cancer that has spread further than the breast and lymph nodes in the armpit) are not usually carried out unless there are symptoms that need investigation. This is because performing routine tests in women without symptoms has not been shown to increase survival and may worsen quality of life by causing extra anxiety. 

porolli: My mother had breast cancer 12 years ago, had a mastectomy and radiotherapy and appeared to recover fully. Last year she was diagnosed with breast cancer secondaries in the pleura (lung lining) and bones. Doctors are apparently saying she's 'well' and she seems quite well. I want to know what her realistic chances are at the moment. what is the prognosis once you have secondaries? No-one will discuss it and I feel I can't bring it up anywhere, but I feel I need to know. Also, I was told originally that it was not an inheritable type but I have recently read that having any close relative with breast cancer increases the risk, regardless of whether you carry the gene. Is this true? Should I get checked? I'm 40. 

If breast cancer spreads from its original place in the breast to a different part of the body it is called secondary or advanced breast cancer. These new tumours are called metastases. Unfortunately, once it has spread, breast cancer is not curable, but it can still be treated and controlled. Many women live with secondary breast cancer for many years, however this will vary from person to person and is difficult to predict. Some women want to try every treatment they can. They may also want to take part in clinical trials of new treatments. Other women don't. Every cancer treatment has side-effects, and some women are prepared to put up with these if there's a chance that the treatment will help them to live longer. Other women decide they've had enough treatment, and prefer to have palliative care to relieve their symptoms, make them comfortable, and help them with any practical or emotional problems they are having. For information about family history please see previous answers.

 

DCIS 
(Ductal Carcinoma in Situ)

silentcatastrophe: My first lump didn't show on the mammogram and when it was investigated I was diagnosed with DCIS. I've just had a clear mammogram but now they would like to give me an MRI scan. How common is this? 

Since breast screening has been available it is very common to detect DCIS. This is ductal carcinoma in situ and does not normally form a lump. It is a very early form of breast cancer and is non-invasive, meaning it will not spread. It does, however, have the potential to change over time, although we don't know how long it could take to develop into an invasive cancer. It is therefore important to remove those cells. Normally, women who have been treated for breast cancer are followed up with mammograms to detect other cancerous changes at the earliest possible opportunity. MRIs are being used more widely now in breast surveillance. They provide further information to the doctors treating you and helping them provide the best possible care for you.

 


Breast cancer treatment and research
 

Northernlurker: Many of us will know women diagnosed in the past who have eventually died from breast cancer. We will also know people being diagnosed now in 2009. Can you tell us how treatments have improved and what impact that will have on survival. What differences can bee seen between now and ten and 20 years ago? 

We have seen the treatment of breast cancer improve significantly over the past 20 years. Overall, survival has greatly improved over this period. In the 1970s, only 52% of women diagnosed with breast cancer survived longer than five years. Now, more than 80% of women survive longer than five years.

Firstly, screening has allowed breast cancers to be detected at earlier stages so the full range of treatment choices is available for the patient. Removing the cancer at the earliest possible stage gives the greatest chance of long-term survival.

Secondly, there are newer targeted treatments, such as trastuzumab (Herceptin) for HER2 positive breast cancer, which have significantly improved the outcome for this group of patients. Research is ongoing to find other similar therapies that can benefit specific types of breast cancer.

Thirdly, oncologists can now offer effective tailored treatment to enable more women with breast cancer to cope better with treatment, and ensure a much better quality of life during and after what is often exhausting chemotherapy and radiotherapy. This includes improved anti-sickness regimens, drugs to reduce the risk of severe infections, and reduce hair loss. This has often allowed women today to carry on with their daily lives, including continuing to work.

What is becoming increasingly important to both doctors and patients is ongoing research that shows how and why different types of breast cancer need to be treated in different ways. This is allowing doctors to individualise therapy rather than give a “one treatment fits all” approach. All these recent improvements should allow women today living with breast cancer to be more confident that the treatment they receive is of real benefit, and allow some groups of patients to avoid unnecessary treatments and side-effects.

 

Miscellaneous

hunkermonker: Why don't the breast cancer charities work more closely with the breastfeeding charities? 


Currently, Breakthrough doesn't work with any of the breastfeeding charities. However, this doesn't mean it might not ever happen. We do highlight the benefits of breast feeding, however, including that it can modestly reduce your risk of breast cancer. Find out more about how pregnancy and breast feeding can affect breast cancer risk at breakthrough.org.uk/riskfactors. 

MaryAnnSingleton: I think that it seems important, from what I've gathered from the BCC forums to tell it more like it is - a lot of people seem to think that breast cancer is a 'good' cancer to have and that breasts are not essential equipment, unlike a lung or liver - but there is a devastating side to it too - which the pinkness seems to mask -pinkness makes it easier to deal with somehow. It might be worth asking these forum members to talk about what it is really like, all the horrid bits. What a good idea this is - I was diagnosed with breast cancer in April and have since had surgery, radiotherapy and am now on tamoxifen for five years. I have been on the very good Breast Cancer Care Forum a lot, which has been invaluable with its advice and support. One of the rather heated discussions concerned the fact that the pink frilliness that surrounds the public face of breast cancer seems to treat the whole thing in a sanitised, easy to cope with package and overlooks the fact that people actually don't know much about breast cancer and just how many people go on to develop recurrences or secondary breast cancers. For example, do people know that there is more than one kind of breast cancer? This is not denying the good things that people do to promote awareness of bc and the money raised, but to perhaps look beneath the happy face that is presented by the pinkness. 

elliesue: I could not agree with you more. I have worked on PR for mastectomy bra companies for ten  years, and every year come October, I try to get the magazines to write about some of the lovely modern lingerie that is now available, and all they want to write about is pink! I have friends who have had breast cancer, and until I told them, they all thought that they would end up having to wear the kind of 'boulder holder' bras that their granny would wear! While it is great that the focus is on fund aising events, it is also important to use October to give breast cancer sufferers more practical information, about things that can make a difference to their everyday lives.

If you'd like to share your experiences and raise awareness of the real issues that affect women with breast cancer, why not become a Breakthrough Breast Cancer media volunteer? You can tell us about your experiences of diagnosis or treatment, the support you received from family and friends, how your life has changed, or the advice you would give other women at the start of their breast cancer journey – whatever you feel happy and comfortable sharing.

If you'd like to help make a difference by sharing your story in the media just fill in our online form at www.breakthrough.org.uk/tellyourstory.

Last updated: 09-Oct-2009 at 9:22 AM