Thanks for your posting - I fully agree with every word.
I am a lobular lady too, now with secondaries, and I can look back and identify factors that both increased and decreased my risk, but the bottom line is that I am one of the unlucky ones who did develop lobular cancer. I don't blame myself for the factors which increased my risk -including being female! - and I don't begrudge the lucky people with higher risk than me who still go on to avoid cancer.
I was told they would compare previous mammograms with the current one. Therefore, it would be easier to detect lobular bc the next time, as they are looking for any changes. If they find any, then they investigate further.
Lulu - I agree with your sentence: "so if you never drank yes you may have reduced your risk slightly of getting lobular cancer but you would still be more likely to develop ductal cancer in the first place." I said something similar in one of my earlier posts: "Although the research says that alcohol doubles the risk of ILC, it is also showing that the risk of IDC is higher in both drinkers (double) and non-drinkers (three times) than of ILC."
although there may be an increased chance of getting BC if you drink alchol this will be for women who drank before diagnosis... its not research on whether you would get a subsequent cancer, a recurrence or secondaries if you drink alcohol.
the single main cause of getting breast cancer is being female... 46000 women a year are diagnosed compared to 300 men... thats over 150 times more chance if your female.
the second main cause is getting older.... 20% of breast cancer under age 50, 80% occur after age 50... unfortunately these two risk factors we can do nothing about.
you can cut down alcohol, reduce your weight, eat a health diet and they may make you feel better but in the grand scheme of things they probably wont really have too much of an effect on your risk of future cancers.
in addition lobular cancer isnt so common and we dont know what kind of cancer we may develop until we get it... so if you never drank yes you may have reduced your risk slightly of getting lobular cancer but you would still be more likely to devlop ductal cancer in the first place.
some people feel they need to be doing something proactive to help reduce the risk of breast cancer so if your happy to live without alcohol/dairy products/chocolate etc and that makes you feel better then i say its all good however if you want to continue with your current lifestyle wine and all enjoy it... we only get one chance at life and there is no point being miserable.
im much more of a supporter of quality over quantity... id rather live my life fully even if it means i wont live to see old age than stop doing things i love just to gain a few more months or years feeling miserable.
be good to yourselves and do what feels right for you xxxx
I had a radical mastectomy and then opted for a prophylactic mastectomy on the other breast. However in discussions beforehand when we were talking about how they would keep a check on the non-cancerous breast they said that they would not do mammograms but rather two-yearly MRIs with contrast. I did actually have this done prior to all my surgery.
I would ask again about this and about MRIs. They are considerably more expensive but if you can afford it you may decide to have this done privately for peace of mind.
I had a look at this link http://www.breastcancercare.org.uk/upload/pdf/invasive_lobular_breast_cancer__mar_08_0.pdf
I only found out a few weeks ago my cancer was lobular and wanted to find out about it. Seems there are a few differences and diagnosing is one of them.
When i was in hospital my surgeon said a god way to feel one is by holding the skin either side rather than just feeling (hope that makes sense). He said sometimes you couldn't feel anything by just feeling the area but if you have it between 2 fingers you could feel something there, more of a thickening.
I'm interested in this post as I am also a lobular lady, and hadn't come accross much about it. To be honest I'd never heard about it before I got it. Does anyone have any useful websites or articles I could read, as 'google' doesn't have very much.
As for risk factors and protective factors; well I fully breast fed three children; lot of good it did me!
Also, my lobular cancer didn't show up on mammogram last year, but I had two tumours and needed a mastectomy. Now they say that they will do annual mammograms on the other breast, but I have no confidence in this. Any advice?
When I met with the onc I started to talk of life style changes and he said "Don't beat yourself up thinking you have caused this' He went on to talk about the higher rate of incidence in the western world and that if we were living in another area having babies from 15 years old (or less) every couple of years and breast feeding all that time - one after another as they do we wouldn't have the problems of BC. We would be using breasts for what they were designed. I will still watch the wine a bit and go for more walks but otherwise I'm with The Prof!
Really sorry for those of you in your 40s who have lost libido. I will be on tamoxifen later so don't know how it will affect me but have already been through the Menopause and sadly the sex drive is not what it was because of that. Thank God for lubrication though - we can still get close!
Elinda is absolutely right. The huge increase in breast cancer rates in the UK in the last 50 years makes it clear that some aspects of modern life are causing us to have more cancer, as the genetic element seems to be relatively small and constant.
The causes are clearly very complex and there are a huge number of variables. And just as there are people with all the known risk factors that will never develop bc, and there are some with very low risk that will develop bc - by far the largest group of people with bc will like me have several of the known risk factors.
How you treat this information is I think determined by your own reaction to risk. I think some people feel overwhelmed by how many things they would have to change, and particularly if they have a good prognosis, decide to carry on just as before - and many of those will be absolutely fine. Similarly there are those that don't believe that lifestyle plays a part or are fatalistic about their outcome and make no changes - I believe they're wrong, but that's their choice.
Others may decide that just one or two aspect of their lifestyle are likely to be at fault (such as drinking too much or being overweight), and try to tackle that area. Then there are others like me, with a poor prognosis, who think it is worth trying anything and make very radical lifestyle changes. Unfortunately there is a fourth group who simply don't have any of the information on which to base an informed choice, and are unaware there are things they can do to help themselves.
My personal belief is that for many of us it is a very large number of things that combine to cause inflammation at a cellular level and leave us unable to fight off cancer cells, and this is something we can tackle. It is known that a large proportion of women have breast cancer cells but never go on to develop the disease. As Elinda says there is nothing we can do about many of our exposures to hormones, but we can take steps to make our bodies more able to fight off cancer. And I'm afraid it appears that reducing alcohol consumption is one of those things, whether lobular or not.
Frankly, it is all very exhausting and makes life very scary. I find that nearly all food and drink has some risk factor now and it is really difficult trying to decide what to eat.
I don't subscribe to the Jane Plant type of diet, ie "phyto-oestrogens are good", especially as my oncologist advises against changing to a diet which includes a large amount of them. She said to eat a varied, healthy diet - but what is that? Personally, I think they just don't know and so if your diet is varied, you don't have too much of anything bad.
If you believe everything you read, on both sides of the fence, dairy is bad, meat is bad, fats are bad, foods containing phyto-oestrogens are bad....etc. What else is there? A diet cutting all these out would be very restrictive and harmful in itself, so how do you choose?
The research isn't giving a cause for cancer it's showing what increases risk. For example the small percentage of women with a very high genetic disposition may want to have prophylactic mastectomies and some do. There are many other factors that can increase risk some of which we can't always do anything about such as starting periods young, late menopause, getting older etc
What they call lifestyle factors are those with are supposed to have some control over although breastfeeding is included and that's difficult when you can't have kids! What research has shown to date is that being overweight post menopausally and not exercising can increase risk. Drinking alcohol can also increase risk. So can things like taking the contraceptive pill and HRT.
The issues about stress, diet, deodorants etc are contentious and to date there is no research that I'm aware of that is recognised to show a significant increase in risk. That makes it much harder for us to know what to do for the best there.
I expect as work on genetics continues they will find there are other genetic predispositions that combined with 'lifestyle' factors may cause the cancer but it's not going to happen tomorrow. Research is slow and long process and I'm grateful for any crumbs of information that they find. All we can do in the meantime is look at the evidence on risk, read other things such as those on diet and make our own choices.
There is further reading if anyone is interested on the World cancer research fund site. There is also a very indepth analysis of all types of cancer and risk factors. This is the link to the more general section on breast cancer:
I find it hard having to make so many decisions all the time from what to put in my mouth to what treatment to have etc. That's something that I really hadn't been aware of before the cancer diagnosis.
take care all
I'm not lobular but ductal anyway I just wanted to say I agree with the ladies that have said it's scaremongering, the truth is they have NO IDEA what causes it !
so lets go through the checklist
1) being overweight causes it
2) alcohol causes it
3) food causes it
4) deodrant causes it
5) smoking causes it
6) life style causes it
7) eating red meat causes it
8) stress causes it
get my drift ? that's every single one of us somewhere in the above!
So ok say you don't drink one more drop then ?
Then your gonna be miserable and stressed ! so whichever way you look at it your still at risk according to different reports.
Do yourself a favour and carry on having your odd glass of wine! (or two) Ive got a few friends who never touch a drop and it hasn't stopped them getting BC, so what caused theirs?
Be happy we need to make the most of the time we have,none of us know when our numbers up.
My surgeon and he is one very clever man said " they have no idea what triggers it off,he said "if he knew that he'd be a millionaire!
And also said " don't keep searching for why, you will never know why"
I just looked at the Glacier trial but it appears to be only for LCIS, not ILC.
Starfish - Totally agree with you that everyone is different and our causes are all a different combination of things.
I also had lobular cancer and read the recent article. i do feel that such articles are scare mongering. I only and have only ever drunk an average of 2 glasses a week if that in all my life. I am now 55. So where does that leave me. Scared. Every week there is is some article or other on cancer saying this that or the other causes it. I feel there are so many variables. We are all individuals who eat and drink differently. Cancer behaves differently in each of us. Yes, it is good they are researching and by the way for those who are lobular check out the Cancer Research site where there is an ongoing trial called "The Glacier" trial which is being undertaken at various hospitals around the country and looking for more volunteers.
Following the recent article I intend to avoid alcohol altogether now. If I am still here in 10 years time I will let you know if it is has worked.
I always check out the Cancer Research site when such articles are published and often get a more informed view.
Grace - I have zero libido and haven't done since treatment started. I hadn't had much the previous year as I'd had a hysterectomy and other surgery which seemed to dampen it somewhat. Then once I started chemo I got very ill and now I'm apparantly menopausal and on tamoxifen and it's disappeared completely.
I feel sorry for my husband who is lovely and so supportive. I would love my sex drive to return so I could feel more normal! I'm only 46 and thinking is that it for sex..
Found out my cancer was lobular the day this came out. Am not going to drink as much and have totally changed my diet. Asked for stats from my team and they said the stats are for them to guide what treatment to give so have given that up now. I love wine ....
I'm not a lobular lady and only have about three glasses of alcohol a year, so can't comment ... but I still do have an active sex life following chemo (periods stopped immediately) and on Tamoxifen, and was frustrated when it was off limits following my DIEP flap surgery. But you have had a lot more going on than me. I guess I am lucky. I have seen lots of other posts from younger woman saying that they have lost their libido though, so you are not alone. I hope that this changes for you over time.
I can't offer you any words of advice or comfort, but just wanted you know that someone read those comments relating to sex!
I'm not a lobular lady, but I have radically changed my drinking habits since dx. The only alcohol I have now is a small glass of red wine each day, because of the resveratrol it contains. Having stopped altogether during chemo, I was surprised to find I didn't miss it that much. Also as I am overweight I think it is helping with the dieting. It does seem as though all our pleasures are taken away - I think the secret is to try and replace them with non diet ones if possible.
I too am a lobular lady. My way of dealing with this is to avoid reading such articles and I have also never asked my team about statistics of survival and prognosis etc as how do we know which category we as individuals will fall into. I go with whatever my team advise is sensible...ie if you enjoy a drink, do so in moderation. I do really enjoy a glass of red every now and then and have no intentions of limiting my quality of life by never allowing myself to have this again. Having said that, since my diagnosis I have not felt like I have wanted it much at all...probably due to recovery of ops, anxiety and sickness from chemo. I am hoping to enjoy a glass or two again when I am feeling more up to it.
As for the sex drive, Grace: have never really had a brill libido anyhow (lucky that you have some passionate memories!)but have not started hormone treatment yet to comment. Chemo sickness is my current passion killer! Good luck with that one....perhaps try something different- role play perhaps? 😉
Best wishes to all you strong folk out there
Elinda - Thank you for the link to the research. I had not seen the story and haven't seen what the papers say but from what Grace was saying, it appears that they are blowing this up. Although the research says that alcohol doubles the risk of ILC, it is also showing that the risk of IDC in both drinkers (double) and non-drinkers (three times) than of ILC. I don't suppose the papers mention that.
The conclusions were more to do with the hormone receptivity.
I had ILC as well, btw.
Thanks for your different postings. No one has mentioned sex at all despite my flippant remark 😞 so, the general consensus is that it is either scaremongering or we should take it seriously and almost give up our glasses of red or white.
I actualy don't think it is scaremongering. 90,000 women is a big survey. But, I am profoundly distressed that I should actually almost give up red wine in order to survive.
Can someone please comment on the lack of oestrogen and libido or am I am the only one who used to have a fantastic sex life for it all to disappear with Tamoxifen, Zoledex and Oopherectomy and Hysterectomy???
Thanks for posting about it, I hadn't seen this and I was diagnosed with lobular cancer last year too.
I'm posting a link to the research here for those who want to look more closely:
This is other research on the link between alcohol and breast cancer:
I used to absolutely love red wine and although I wasn't by any means a heavy drinker I probably had about 4 - 7 glasses a week. As soon as I was diagnosed (18 months ago) and read the research on the link between alcohol and breast cancer I gave up. I can't stand sweet drinks either so I often just go for water. I had a glass of wine at Christmas and it made me feel ill as it seemed so strong! I don't have a complete ban on alcohol but drink it rarely and very small amounts.
I actually don't agree this is scare-mongering. This is research that is being done to help us not make our lives miserable. Yes, it is horrible being told that something we enjoy isn't good for us particularly if we have a healthy diet, exercise, don't smoke etc. I'm grateful though that they are finding what is increasing risk and that, in this case, we can do something about it.
Lobular lady, too. I don't drink, smoke, eat healthy diet, exercise, etc. I think alcohol is implicated in many diseases and everyone makes choices regarding their health, or drinking or not, lifestyle etc. It's good we have access to the information. I note the study related to postmenopausal women.
Yes I am a lobular lady and I read that too and also love wine. However have laid off during summer (more or less) because i understand alcohol hinders healing (had Mx and LD flap on 8th July) and didn't want to put extra toxins in body around time of 1st chemo on 18th August. I like wine because it has a dry taste and hate sweet drinks but have found I really enjoy a glass of sparkling water with lemon juice (just a tad). I've been drinking loads of water and fluids anyway as they say you should and my experience so far has been brilliant after 1st FEC. Even more important as my Mother died the day before and we've had things to sort out. SEs were only 2 days indigestion, a tad constipated and 1 mouth ulcer so far. Husband says i have the chemo brain thing to but thats a mater of opinion!
Did you read the other article about Shrew saliva? Maybe we should try a glass of that!!
Yes I read that too and I'm a lobular lady. I think its just a bit more scaremongering and I wouldn't take it too seriously. A little of what you fancy does you good!
Has anyone seen the papers today with the report on alcohol and lobular cancer? Its stating a study of 90,000 women in the US has shown that even drinking one glass of wine a day can lead to a 1.8 times chance of developing lobular cancer once menopause is reached.There was no increased risk for ductal carcinomas.
This is very bad news for those of us who don't smoke and are not overweight as this is our last port of refuge 😞
Being a lobular lady I feel very down about this as red wine is one of my only pleasures now that sex is off the menu due to complete lack of libido 😞 😞