I have recently found a lump in my non BC breast. I saw the surgeon today but he says he is sure it is a fatty lump but is sending me for an ultrasound just to check.
The nurse said to me that it is very rare for cancer to come into the previously unaffected breast, however I am not sure how accurate this is because I have met a couple of women who have had BC in both breasts and there seems to be quite a few on these forums. I wondered if anyone had any more information.
thanks
nightowl
Hello nightowl
Invasive lobular cancer has a 20% chance of occuring in the other breast at a later date or at the same time. Dont know about the other types of breast cancer.
Hope you get youre scan soon. The waiting for these results is horrible.
Lyn x
Hi Nightowl
Bilateral breast cancer is very rare. My mother had bilateral BC - I dont know what type of cancer she had. First tumour when aged 60, then second aged 65. Because of its rarity plus some other factors in our family, we are being gentically screened. Also, tamoxifen wasnt offered to her after the first tumour - no idea why, maybe it wasnt available then. With regards to there being a lot of women on the forums with bilateral, I think that there maybe a disproportionate number of women on these forums with rarer or more advanced cancer than in the general population, possibly because those with “common” cancer either dont feel the need to join a forum or dont stay on the forums as long? I may be totally wrong and it is only my assumption but it does give you a skewed perspective on the realities of the disease. You will get a much more accurate idea of your personal risk from your oncologist who knows your histology, history etc than from these forums.
Hi Nightowl
I’ve had breast cancer in both breasts. First time in 1993, second in 2004.
I’ve been told that it IS rare to get it twice - and I have been invited to take part in a genetic research project. We don’t have a history of breast cancer in my family, but we do have a lot of different cancers that keep popping up.
X
S
I’ve been googling and it is very difficult to get information on numbers affected with breast cancer in both breasts.I have read that any woman who has had breast cancer may have a slightly increased statistical risk of breast cancer in the second breast. It is the case that BRCA1 and BCA2 breast cancers and lobular breast acncer is more likely than others to appear in second breast but can’t find figures on this.
I did find a study done in Sweden of 123,757 women diagnosed with bc between 1970-2000 and 6550 of these has breast cancer in second breast which is just over 5%,
I also read a report from the States (Oct 2007) that thousands of women are electing for bi lateral mastectomy and that there are concerns about this given the relatively unusal incidence of bi lateral bc (I think relatively unusal is more accurate than the word ‘rare’.)
Far far more women are at risk of metastatic recurrence after primary breast cancer than they are of a second primary. I think information about this needs improvement.
Cathy: people who use these forums tend to be those who are familiar with the internet and who are undergoing active treatment, or recently out of active treatment. I don’t think at all that these forums include more people with rarer or more advanced cancer than the general population. 44,000 women are diagnosed with breast cancer in the UK every year and over 12,000 die annually. A tiny number of those deaths are women who post on these forums.
Jane
I think bilateral at the same time is fairly uncommon, but I was told that any bc does put you at higher than average risk of a contralateral bc (ie other breast). Tamoxifen is one of the ways to reduce the chance of contralateral bc.
A second bc is unfortunately quite possible - I’ve been looking for good stats but haven’t found any as I was diagnosed with a second (different type) of bc in the same breast as my original one - that one was ductal, in 1991, and I had lumpectomy. This time I have a lobular cancer, and had a mastectomy. And I tell you, the remaining breast better watch its #### step or it’s gone too!
Lyn
Cathy - interesting point. Both of my surgeons and bcn are resolutely anti-forum because they are dealing with the fallout of an increasing number of women fretting over issues which don’t apply to them.
My surgeon told me her heart sinks whenever she hears: “I was on the internet at the weekend and this woman said …”
I think there is a tendency on these kinds of forums (miscarriage and IVF ones are the same) for veterans that have been using the site for a long time to be most prolific. As in any grouping of humans, the contribution of more confident participants may skew perception.
Molly
Molly, I don’t want to be confrontational, but I think if your surgeon’s heart sinks, it’s time she realised part of her job is training her patients in just how individual bc is and why something may not apply - not just rubbishing forums. And you’re lucky to have time to have that sort of conversation with your surgeon - trying to get hold of a BCN at all at my hospital is a big deal. The surgeon I won’t see again till next March.
My first time round, there was so little in the way of information and support - the 24 hour support available on forums, as well as the breadth of experience, is invaluable. I wish I’d had that for the night heebies at 3am back then. BUT - it is also every patient’s responsibility to understand that asking “what happened in your case” on a forum does not mean that it applies to you personally, it’s only someone else’s experience. (Sorry, I’ve had a really rubbish morning and I’m crabby!)
Lyn
I’m crabby too. Good on you Lyn. As one of those prolific veterans I fell really angry and have no intention of skewing anyone’s perception.
Jane
And think of all the things the medics forget to mention, or do not consider important, or spin to prevent worry or make it easier for themselves in the consulting room rather than saying straight, or actually say inadvertently wrongly, or positively refuse to answer - just another example of them wanting to maintain control over our decisions. How else are we to find out what we need to know?
I was told radiation affects you “a bit like sunburn.” I was told “you will probably be okay” (that’s me, personally) - and in spite of that sentence being actually meaningless I actually did what the guy wanted and believed it because I thought he knew. I asked about the incidence of womb cancer, and of stroke, when taking tamoxifen, and the likelihood of these in my case, and the surgeon refused to answer. I had to “Ask a BCC nurse”. I am now asking about reconstruction and am getting so much more information from here than from the surgeon who, for example, almost forgot to mention, and just pipped in at the end because of something I said, that with a DIEP he would have to rearrange my navel. Horrified. Hadn’t twigged, and he hadn’t mentioned before. Listen to what women on here say about what they were told before, and what they discovered after. How dare those people suggest that only they should provide information. I am so grateful for the forums.
So I hope her heart sinks through the floor to the antipodes and she goes with it, together with the conspiratorial surgeons.
I was told that having had cancer in one breast meant I was more likely to get it in the other breast, but they didn’t give me a number. Taking tamoxifen reduces that risk somewhat, at a price. I was also told that lobular cancer in situ raises the likelihood of cancer in either breast, but again, they did not say what kind of cancer, and no number. I suspect Jane is right and that ‘rare’ is too strong, ‘relatively unusual’ might be better - although I wouldn’t be astonished if it is actually more common than that suggests - there must be some figures on this, and I would hope an oncologist would know - I hope, nightowl, you are getting more information.
I am not endorsing my surgeon’s opinion I am reporting her position on it.
Following on from Cathy’s comment I thought it may be of interest to hear what someone on the other side of the fence thinks about the effect of information that is swirling round in cyberspace.
She is an exceptional surgeon and the reason her heart sinks is because she FEELS for her patient who has been stressed by misinformation or downright bollocks she has read on the internet. Or been exposed via forums to elements that have no relevance to her specific condition and so worried herself unduly.
I am at a complete loss to understand why you have chosen to interpret my comment as some kind of negative swipe as that was certainly not the intention.
Why the hell would it be? What could I possibly gain from seeking to anger or alienate people on this forum?
Veterans in my book are the ones with the knowledge and experience.
I was making that very basic generic point that in closed environments like an internet forum the most confident voices may be dominant and their opinions the most prominent.
And you know what? I am pretty bloody crabby too.
Thanks and good luck.
I’d love to know the answer to this too and I shall ask my consultant surgeon when I see him in 3 months as he’s been great re information. I feel a total non entity with my oncology dept having never met the onc who designed my plan (guess that wasn’t necessary) but I did actually finally see him on Monday, he saw me reading his name badge and clocking who he was but no recognition of me of course on his part which did kind of disturb me seeing as I’m going through so much treatment on his recommendation but I tangent, back to the consultant surgeon who was the one who gave me my diagnosis.
I discovered a lump in 1 breast so they scanned that, yep cancer, so they scanned the other breast as a matter of course… yep another cancer (but took several biopsies to be sure) so I did have cancer in both breast but in my case at the same time, same grade but actually different histology ie certainly not a spread of the first cancer and unusual.
I asked him about this this and he said it’s not common but it’s not unheard of.
A few days after I started thinking about options and googled his name and found he’s written a paper on screening women under 50. It reasures me to find out about people who I’m supposed to trust and in this case the internet helped me trust him. 8 months in and he’s one of 3 people who I get advice from who I trust. I have an open minded GP and an informed breast care nurse too. I like them all a lot.
This consultant surgeon did warn me about using the internet to get information, but he said don’t go just reading everything as there’s so much that won’t apply to you and until we get the results from surgery we don’t 100% know the grade etc. But he did also mention this very site as being a good source of info.
I said I’d start there but that I grew up on the internet, I work here, I build websites a lot like this so I know how to filter the wheat from the chaff. But he’s right you can overwhelm yourself and this is a great site.
But I will be asking for some numbers to go with how many of us have had cancers in both breasts.
I take it we’re not talking about recurrence here though, ie has to be a whole new cancer?
Sorry to go one so long… dex day makes me ramble.
deleted
I still stand by my original assumption that the women who use these forums may not be representative of the general population of women with breast cancer for many reasons, including the fact that some may not use the internet, may not feel comfortable with forums and also some for whatever reason, may use the forums longer than average perhaps becausee they may have a more rare and aggressive form of cancer. As a health professional, I pride myself on attempting to explain to my patients exactly what is wrong, facts figures etc in any appropriate method I can to ensure they have sufficient knowledge. I also very pleased when they visit bona fide websites to enhance their knowledge and discuss their findings. What I do find disheartening and I can relate to your surgeon, Msmolly, is those who google information ad hoc or visit forums and find someone who scares the hell out of them even though their condition does not apply remotely to them. If they have doubts about their original diagnosis they should seek a second opinion or ensure that the information they receive comes from a reliable, valid source. These forums are brilliant for general information but really should not be used in lieu of specialised medical information.
I think the problem with some health rpofessionals is that they can be incredibly patronsing and paternalistic towards their patients…they like to dish out their presious factos figures and opinions in carefully controlled doses often to meet their own needs rather than for any consideration of their pateints. Then wham bam along comes the internet and it is challenging some professionals sense of status. The best profressionnals acknowledge the bonuses and benefits, as well as the downsides, which the internet brings and they don’t slap their pateints down for using it. Cancer can be frightenning and internet information is frightenning…often its the accurate stuff which frightens more than the inaccurate stuff.
I agree women using these forums are not representative of the gneral population of women with breats cancer…we are over represented here by younger women (by younger I mean up to age 60) ) and breast cancer risk increases with age. (50s-60s are represented on forums but perhaps not in the numbers which reflect gen pop and many of this age group of women do have grade 1 stage 1 cancers from which they are liklely to make a full recovery.) Younger women yes are more likely have more aggressive kinds of cancer but otherwise I don’t think these forums are populated with ‘rare’ cases. Do you mean too many of us are termional and thats upsetting?
There is a wealth of information, knowledge and experetise on these forums and I have never seen anyone claiming to have superior knowledge to doctors though occasionally what forum members have said their doctors have said isounds alarming…but who’s to tell who got the wires crosed. And sometimes I think there’s some dodgy ideas on the causes of breast cancer and on alternative medicine.
best wishes
Jane
Hi all
I had bc 29, stage 3, grade 3 trip neg, left breast, lumpectomy, chemo, rads. Dx again 36, right breast, new primary but a mirror image of other, same place, same size etc. After a big c***k up by surgical team & 4 ops later, bilateral then chemo, just looking forward to 2nd part of recon in Sept. Undergoing genetic testing, waiting for results & having ovaries removed later in year hopefully!
I find when i talk to anyone of my team treating me if i am not armed with facts & questions they will not tell me anything and they most certainty will not put forward information voluntarily, which i find annoying. So for me the forum is invaluable, i read, i absorb & take note if i feel it relates to me then i ask! In Dec '06 i was dx with DCIS in right breast right side, op Jan '07 needle marker put in 4 hrs before op, when i came round from the op scar was in the middle at top (something wrong!) At appointment week later told not clear margins (surprise), again 2 weeks later had WLE, clear margins, yeah…NO! Day before due to see onc to discuss chemo find new tumour further down right side of breast. This time bilateral, only to have a massive hematoma, caused by ill fitted drain! in right side & have to go back in again. It was only when looking through my notes with bcn at my request, that i saw mammo where needle marker was put in, surprise, surprise, smack bang above a tumor not any where near the DCIS, no wonder they didn’t get clear margins, they had 4 hrs in which to tell me there was a tumor there, did they…NO! I was told someone made a mistake. Well bully for them, this is not a broken arm we’re dealing with, it’s my life!
I do not trust any of my team, i am not saying that my onc team are not good , but they are bound by the constraints of money, time & watching each others back. If it were not for the veterans, i would not understand my dx as i do, especially involving trip neg cancers.
Thank you
Louise xx
I will be filling a request for my medical records once my chemo and rads are finished so that I can be sure everythings there and everythings been done as per what I’ve been told and that there’s nothing in there that I haven’t been told.
This isn’t because I don’t trust the people treating me, as I said earlier I do trust most of them but haven’t really had time with some of them and we are all human and sometimes things are forgotten or there’s not enough time to cover it all. You do have a right to see your medical records under data protection act but I was wondering last night if I want to see all of it, ie there may be pics of operations in there, not sure, never could look at that stuff so think carefully if you do want to go down that route.
Angie
Hi
Just to clarify what I meant by rare and aggressive forms of cancer in my earlier posts. I meant just that - rare types, not necessarily terminal. I have a rare type and am not terminal. One of the reasons I find these forums useful is because of chance of meeting someone with a similar type or in a similar situation,. I also stress that I personally don’t find any postings from anyone with a terminal prognosis “upsetting” as I accept that by its very nature, breast cancer does unfortunately kill many women and accept that when I choose to read a particular thread as I am sure many other of the users do. I also wholeheartedly agree that communication skills amongst health professionals is extremely varied and no wonder it leaves people totally confused.
Cathy
There is a difference between information on the web, and a forum on which personal experiences are recounted. And we use both, for different purposes. And it is nothing to do with the quality of the information, how biassed or skewed or out of date or distorted it might be. It is up to us to discriminate as best we can between good and poor, relevant and irrelevant, and so on. As we do with all sources. And if I get hold of the wrong end of the stick, I am as likely to do that from my surgeon or my bc nurse as from a forum or a website. Or a newspaper article, or the radio or Panorama. Or something I share in the waiting room, or something my neighbour tells me about a friend of a friend. And if I get hold of some piece of information that I want to ask my surgeon about, if I have the wrong end of the stick, they should put me right. That is why I have asked them presumably - I consider them to be a reliable source, whereas I may have my doubts about other sources.
It is not their place to restrict the information I have access to in order to pre-empt, which it won’t, the possibility of my misunderstanding. They can’t second guess what I will or won’t understand. They have to communicate with me to try to ensure that I do understand, to the extent that I feel I want to in order to take the next step. What they are really saying is it is a blessed nuisance trying to get people to understand science that is now so complicated and took them years to learn that they would really rather we all just said “whatever you say doctor” to make it easier. They like the bits of their jobs that have to do with fixing bodies but they don’t like the bits of their jobs that have to do with communicating with persons; not many of them are good at it, and not many of them want to be, they want it to go away because they find it hard. That is their problem, not mine, they took the job and are amply remunerated, and it is our bodies and our minds, and if they don’t like the heat they should stay out of the kitchen, because there absolutely is no alternative to informing the patient as fully and truthfully as is humanly possible, given their limitations and the patients’ - and that should come out of a dialogue between equals, they the experts on medicine, we the masters of our own lives.
Sadly that is an ideal I do not see realized where I had my treatment, and, I wasn’t there when they said it but I would venture that what the above surgeon and bcn saidis an example not of concern for patients stressed by misinformation, but an all too human, but all too inexcusably underprofessional, desire to be rid of the chore of communicating difficult stuff to people who may equally have misunderstood perfectly correct information as have been misinformed and may well be in that situation whatever the source, including them. It is not the source of the information but the information itself, which is complex. Moreover, it is not the misinformation that is distressing, but the truth - and I should add, the trying to get them to tell it like it is. I have to say again, in my experience the professionals make strenuous efforts to allay distress by distorting the truth - I gave examples of that in my post above. And they do this because, again, they are bad at dealing with distress, though good at dealing with blood guts and gore. That is why they would rather control the flow of information than have us find out things for ourselves which place demands on them to communicate information that is relevant and important to us, but rather difficult.
I have removed my post