What causes 100% Hormone receptive breast cancer??

Hi all,

I was diagnosed with breast cancer in nov of last year had lumpectomy and now about to finish Chemo next week, then onto rads and hormone therapy.
my pathology report showed that my cancer is 100% receptive for both hormones, I was on the pill from age of 14 due to severe periods and stopped it when found the lump in june last year (am 32)the lump never grew from finding it in June till it was removed in Nov (Doc thought it was just a cyst hence the delay)my question is could the pill have caused this??? I also just prior to this had my second daughter so thinking pregnancy, breastfeeding and the pill lots of hormones there. I cant seem to get a straight answer from my medical team to if the pill could have caused it so was wondering if anyone else has more info from their medical team???

J xx

Interesting question.

I took the pill for about 6 yrs but hadn’t taken it for almost 10 yrs prior to my diagnosis. I am 100% positive for both ER and PR. Wouldn’t care but as I said to a friend today, trust me to get a very hormonal cancer and it being bc, when I’ve never had any maternal instincts!!! Have to laugh at the irony. I was 42 at diagnosis by the way and am 45 now.

Oh and I was having such side effects from my hormonal therapy that I asked my onc if I could have a month or two break from them but she said it would be too risky as I have such a hormonal cancer and at the end of the day, I would rather have something for the side effects than have the cancer spread (I have small bone mets)

Be interesting to see posts on here.

Liz

i read on a website ( i think it was breakthrough breast cancer) that your breasts do not fully finish groing until you are pregnant with your first child, and there was a suggestion that that finishing growth could be linked. Also pill users do have a higher risk, though am not sure what percentage. The breakthrough breats cancer article was interesting though.

I’m 100% positive, too, for both ER and PR. Never had a pill, never had a child - never had a husband… answered “NO” to every single higher risk factors: eat well, some exercise, not over weight, no drinking, no smoking … I’m just UNLUCKY!

m1yu,

Snap !!!
Think you have bone mets and are on same stuff as me.

Liz

deleted

(am 32)the lump never grew from finding it in June till it was removed in Nov (Doc thought it was just a cyst hence the delay)my question is could the pill have caused this??? I also just prior to this had my second daughter so thinking pregnancy, breastfeeding and the pill lots of hormones there. I cant seem to get a straight answer from my medical team to if the pill could have caused it so was wondering if anyone else has more info from their medical team???

Hi J

I was diagnosed with BC last June at the age of 42,I had a quadrandectomy,then 6 x chemo followed by radiotherapy.
My cancer is also 100% receptive for both hormones, however I only took the pill for about 5 month at the age of 19.
My children are adults now, 22 & 21 yrs therefore I was not excessively hormonal.
I think it is just down to bad luck, we have not done anything wrong. The way I look at it now is that i have been fortunate as discovering I had BC has made me realise just how lucky i have been throughout my life.
My glass is definately half full whereas it has ALWAYS been half empty.
Big hugs & half full glasses to you all! :slight_smile:

Stella X

NBF your team arent being awkward on purpose… the reality is they just dont know what causes BC…

the main risk factor for getting BC is being female… the second highest risk factor is getting older… unfortuanetley those two things we cannot do anything about… all the other risk factors put together wouldnt come any where near the risk of just being a woman.

the past research relating to the combined pill was that it did increase the risk of BC by a small amount but it was diagnosed at an earlier stage when it was found and more easily treated… this could be incidental eg perhaps women who were on the pill were also more likely to be self aware… however more recent research published in 2008 has found that there isnt a real increase in the risk of BC from being on the pill.

you might find this info sheet helpful…
breakthrough.org.uk/breast_cancer/breast_cancer_facts/risk_factors_general_information/contraceptive_pill.html

i had strongly hormone positive cancer which was a grade 1 and have been an avid pill taker (and ex family planning nurse) part of me thought it was probably down to the pill however 3 years later i got a 100% negative cancer.

some people can do everything right… dont drink, dont skome, breastfeed for a year have kids when they are young, excercise have a health diet and keep a healthy weight and still get cancer and you can get somebody who does all the wrong things and wont get it.

some people will do all the healthy things to minimise the risk of recurrence as a means to helping themselves fight cancer and this is an effect way of dealing with a diagnosis of BC for some people.

others maybe feel that life is for living and a little bit of what you fancy does you good.

its up to you how you approach things but for the majority of women they may never know what actually caused them to get cancer in the first place.

Lx

Hi
I too have 100% hormone positive BC, having bone mets as well :frowning: However I feel that the reasons ladies (and gents) get BC is still not fully understood and this is why research continues. Obviously there are certain lifestyles that seem to increase the risk but it’s still not clear cut. If it was why don’t all the overweight, alcoholic, unfit, meat-eating people in the world automatically get it? After all this is what we are all told to avoid. I do believe there are other genetic factors which are still being researched. Obviously 2 genes have already been identified as an increased likelihood of developing BC but when I went for genetic testing last year the researchers think there are other significant genes that cause ‘clusters’ of BC in a family history and these are what are being investigated at present. It could be if these are identified this will be the key to why we have all developed BC and why others with a similar lifestyle don’t.
Nicky

One fact that is indisputable is that the incidence of BC in the UK has risen dramatically in the last 50 years. This is the case when taking account of age adjusted figures (ie we are living longer) and allowing for more cases caught with screening. So being a woman and hitting 50 doesn’t explain why so many MORE of us are now getting BC, and the rate is increasing every year. Something is going horribly wrong.

My personal belief is that apart from the 20% or so of genetic BC’s, most of the rest is accounted for by environmental exposure to carcinogens, lifestyle and diet. And by lifestyle and diet I don’t mean that we are all smoking alcoholics living on junk food - simply that we are exposed every day to hundreds of chemicals that combined can have a devastating affect on our health. These may be the pill and HRT, or our toiletries which nearly all contain parabens (these are found in nearly all breast tumours), or our food full of additives, transfats, salt and sugar. The food we eat is now produced in such a way that we are chronically short of Omega 3 and eat way too much Omega 6 - this leads to low grade inflammation at a cellular level, which makes it harder for our natural defences to fight off cancer. Our food comes wrapped in soft plastic that leaches endocrine disrupting chemicals into the food, which we then eat. Our diet makes many of us overweight - me included - so we then produce too many hormones.

Regarding stress - I think it is a likely to be a trigger not a cause. There have been hugely stressful national events - two world wars for starters - which didn’t lead to a jump in cancer rates. I think your system has to be under stress anyway from the other factors I’ve mentioned, and then emotional stress is one more thing that suppresses the immune system.

I find it very interesting that BC is much less prevalent in the East, but also less hormone positive and less aggressive. Here we start our periods earlier and have a later menopause - so we have a longer exposure to our own hormones. This is a trend that is continuing - it is now not uncommon for girls in the UK to start their periods at 9 - in Japan it is mid to late teenage. Again, I believe our lifestyles and diet are driving this change. Early menarche is largely triggered by size. We eat too many animal products that are full of hormones and growth factors. I also think dairy is a likely cause - I now shudder to think that I consumed every day for 51 years a substance designed to make a baby cow grow at a staggering rate (full of growth hormones), but which that cow only consumes for 50 odd days. It seems rather logical to think that the growth messages from the cow’s mammary glands could eventually cause confusion in our own, doesn’t it?

I don’t think any of us will ever get an answer as to the precise cause of our BC, even if there were just one cause. I think for most of us it is likely to be an accumulation of many things. Some of these things we can do nothing about - but there are many we can change, and hopefully by doing so reduce the risk of recurrence or progression.

I was 100% for both hormones when my children were 4 and 20 months. My bcn said that it was probably my second pregnancy that was the cause, but you never really know.

I am 100% ER positive, although I’ve never been told PR score- it wasn’t listed on my path report. I wonder if this means it’s negative?? I agree with everything Finty has so eloquently said. In the 1960s 1 in 20 got breast cancer and now it’s 1 in 9. Something has happened to change this statistic and I think all the factors Finty has suggested are relevant. Our food production is highly industrialised and we are swallowing the effects every day. I have changed my diet radically but I do allow myself the odd treat because life is for living. However, I buy organic products, have reduced dairy to the bare minimum and have stopped using anti=perspirant. It makes me feel better to know I’m being proactive as I hate it when people tell me I was unlucky. Maybe I am but I want to be able to feel I’m doing something to reduce my risks. I’m 51 and I don’t want to think over the next 20 or 30 years when will I be unlucky again? Good luck to all of you in your personal searches for reasons. Annys x

It seems to me that the hardest thing about cancer is accepting that even if we do all the “right things” it possibly won’t make the slightest bit of difference. At this stage I don’t really care why I got this disease because there is nothing I can do about it now. All I need to do is concentrate on preventing mets. I have done all I can with available treatments and I avoid proven risk factors like alcohol. And I just hope I fall on the right side of the statistics. Life is a crap shoot.

Hi

Just to add to what msmolly said about IVF. My Mum was diagnosed with BC September 2006, I definately checked my breasts thoroughly at this time and found nothing untoward. Late October I began IVF and was bombarded with different hormones. Then December 2006 I went to scratch an itch and found quite a large hard lump! (when it was measured a couple of weeks later it was 3cm, then it grew a little more before chemo started, but obviously I’d had to abandon the IVF by this point!.) So I knew that it had grown very quickly and the only thing to have changed was the IVF hormones! 3 years ago I wrote something about this on here and quite a few people were on IVF or just finished it when the BC was discovered. No medical evidence but I believe too strong a conincidence to not be relevant.

As for the genetic link, to reiterate what Nick said, I tested negative for BRCA 1 and 2, but was told they were keeping a sample as they believed that there was a possible genetic link that hadn’t yet been discovered!

I too took the pill for about 10 years and my Oestrogen receptor was 100% I think the progesterone was also very high, can’t remember details, but don’t think it was as high as 100%. Out of interest does highly hormone sensitive have a better prognosis for secondary cancer, or does it just give a wider variety of treatment options?

Take care and thanks for posting, this is a very interesting post

Regards Nicky

Hi all,

What a great response thank you all.

I have been doing some research tonight and came across some interesting facts about the pill and breast cancer on a web site canceractive.com

It stated Women who take the pill increase their BC risk by 26% those who take it into their 30’s increase the risk by 58% and those 10% who take it into their 40’s increase the risk by 144% this basicaly means the odds go from 1 in 8 to 1 in 3 for pill takers.

That seems more than a slight risk to me.Have been looking into other causes and have came across a few that some of you have mentioned

look out for parabens which seems quite a intense subject so any hints rather than looking at all my deodrant, shampoo, shower gel etc ingredients what do you all use?

Dairy to go organic basically to reduce meat intake and increase green veg and pulses, avoid Phyto oestrogens.

Lose weight which is not good as put on a stone and a half through chemo so a diet is looming.

Alcohol as ms molly said is also something to avoid, as it converts to a chemical called acetaldehyde which is a highly toxic by product and increases oestrogen in the body so increases the risk of BC BY 11 - 22 %

My wee brain is in overload now with information do I do a massive overhaul of my lifestyle as do probably eat too much red meat, otherwise pretty healthy, enjoy the occasional glass of wine which helps me to relax which i think is very important as stress itself is a trigger, I jog 3 times a week will up this when start my diet. Itwould mean basically everything in my life would have to be reassesed or do I put it down to the Pill coupled by weak breast in my cancer side having had 2 loads of mastitus and abcesses which doc said could have weakened my nerve endings

Take care all J X

Nicky - my understanding is that the more ER+ you are then the better your response to hormone therapy. But secondary tumours do not always have the same pathology as the original tumour - it is known for women with ER+ primaries to develop ER- mets. A recent study I read urged for secondary mets to be biopsied if at all possible.

The other problem with hormone therapies is that some tumours are resistant to them. The Americans are particularly keen on testing to see if women metabolise Tamoxifen well before it is prescribed. The CYP2D6 gene is essential for Tamoxifen metabolisation. If it is absent then women are less likely to respond well. And of course some cancers become resistant to treatment over time. They are trying to find ways to beat hormone therapy resistance - once they do it will be as near to a cure as we have come.

I am sorry you are part of the IVF gang too. I have no doubt that all my cycles plus the pregnancies were at the heart of this. I think I was always destined to get bc - but the IVF and pgs expedited the process.

NBF can i just point out that the site you posted is not a reputable unbiased site.

anybody can make a website and post any information on the web… for reputable sites look at .ac.uk .gov.uk and those from academic journals etc… not everything you read on the web is true or reliable.

remember things are often reported in a sensationalst way to catch your attention… eg at age 30 4 women in 10000 would get BC but if you stopped taking the pill 5 years earlier then around 5 women in 10000 would get BC aged 30… this is an increase of 25% but but saying 1 extra case of BC in 10000 doesnt quite have the same ring as saying an increase of 25%… at 50 the rate is about 160 cases of BC in 10000 but if you were on the pill this increases to around 180 which is a rise of about 13%… dont know where the website gets its information from… 1 in 3 pill takers do not get BC…

also 1 in 9 is the lifetime risk… that is upto age 85… not many 85 year olds will be on the pill or will even have been on the pill… the pill does cause an increase but it is only a small risk.

however can i just add that although it does increase the risk for BC it is actually protective for other types of cancer and reduces your risk of ovarian ca, bowel ca and endometrial ca.

also the amount of oestrogen in the combined pill is much less now than when it was first introduced as in the 1960s and 70s they contained over 50 micrograms of oestrogen but since the 80s they have contained around 30 and some even contain 20 so if it was entirely hormone/pill related i guess we would be expecting to see a reduction not an increase.

hope this helps reassure you a bit.

ms molly i agree with what you say too about tumours being resistant to certain treatments… cancer is a sneaky wee bugger and does morph so that it can keep growing under the radar… even wonder drugs like tamoxifen and herceptin are only effective in a certain number of cases… you will always get some ‘whatever’ resistant tumour.

hopefully in time more information will make it easier to treat but currently the research just seems to be bringing up even more questions rather than determining answers.

btw brca 1 and 2 cancers make up only around 5% of all breast cancers too.

Lxx

Lxx

Lulu - well said on the stats. I despair at some of the nonsense out there in cyberworld.
All cancer diagnoses should come with a beginner’s guide to interpreting relative and absolute risk and a lifetime membership of Ben Goldacre’s site.

J - I decided to ditch all the chemical loaded shampoos etc not only because of breast cancer but because it seemed to be common sense. Plus I have sensitive skin and have absolutely no problems now.
I buy shampoo in bulk from my local health food shop which orders it in for me and I get a 10% discount. I use Faith in Nature shampoos. I shop around for conditioners and get them either from health food shops or Waitrose. Soaps I again use Faith in Nature, Ecover or buy bars of soap such as those from Florame which use essential oils. I tend to pick them up when I find them.

Face and body cream and suncream I use from Pure nuff stuff which I love as it doesn’t make my skin itch. I also use organic coconut oil on my body which is really cheap and lasts ages.

I use makeup without parabens etc. Makes include Nvey, Green People, Lavera and Logona. This has the added bonus for me of not having a reaction to it as most ordinary makeup brings out allergies. I do most cosmetics by online orders and I can give you websites if you’re interested.

Deodorants - my husband uses Tom’s and I use Lafes which you can pick up from health food shops or via internet.

Also use Ecover products for washing liquid, washing up liquid, dishwasher tablets etc.

I get quite a bit of stuff from a shop in Rye called Organnics of Rye. They send out the next day and are very helpful if you have any queries. I usually place my order over the phone.

Hope that helps but if anyone wants more details please let me know.
Elinda x

msmolly

Thanks for reassuring me that the bone biopsy was necessary :slight_smile:
I have just made a painful journey down the stairs after yesterday’s biopsy!!

glad to know that the consultant was correct in recommending it, as I’m sure that not all do! but I was referred to an orthopaedic hospital re my bone mets and the consultant specialises in bone tumours and she likes to see the ‘make up’ of the cancer, she also told me that the hormone status can change and too many people are treated based on the original hormone status of the primary cancer.

I am a testimony to what you said about not all hormone treatments working for everyone, I was 100% oestrogen+ yet after 2 years of Tamoxifen and 6 months of Aromasin my cancer had spread to quite a few places. Not sure which one (or both) wasn’t working. I have been changed to Femara, just keeping fingers crossed that this will work!

Regards Nicky xx