CONFUSED
CONFUSED Hi All
I have been lurking for a while but have now decided to post my queries.
I feel so deflated at the moment and so confused I can’t fathom anything out.
To cut a very long story short.
I had a mastectomy on 26th April this was due to an atypical tumour. I have also had DCIS.
Following the operation the consultant saw me and told me that there was in fact another tumour growing behind my nipple on the breast they removed. This may well be DCIS again.
The doctors say I am not a cancer patient.
I know the stress has gone by having the left breast removed and I have not opted to have a reconstruction as I have had so many lumps in the past I want to make sure I notice any further changes.
My breast care nurse told me my benign lumps may well have been contributed to by wearing ill-fitting bras when I was younger.
I am confused as to how I feel and what has actually happened to me.
It’s nto cancer so why can’t I get life/health/travel insurance.
I just wish I could understand how I feel and come to terms with what has happened.
I feel I am making a fuss about nothing yet something major has happened to my body.
Does anyone else feel like this?
Desperate
Fee
Hi Fee
I have been discussing this very subject with another dcis lady on the phone today…i felt very odd with dcis at the beginning until my breast nurse assured me despite it being classed as precancerous changes, dcis is in fact cancer but it is contained and if left would evetually invade and become invasive idc…it is cancer as far as i am aware…it just has not left the ducts thank god!!!
I had no invasion at all yet have had my breast removed as well as a large area of breast skin…as in the words of my breast surgeon " i want to do the safest cancer reducing operation i can"…sounds like cancer to me…i really know where you are coming from tho…
Am about to try and sort out travel insurance for my next holiday…eeeek cant they just cross cancer off the list of ailments covered??? Guess im about to find out!!!
I guess like me you are no longer a cancer patient as you no longer have it in your breast and require no further treatment…prior to surgery we definitely were tho!!! Had it been left untreated eventually it would have invaded out of the ducts…and the consequences of that can be dire!!
I was discussing earlier how DCIS is a horrible no mans land where you arnt classed as having a life threatening cancer but end up having massive amounts of surgery…esp if you opt for recon…its a weird situation…i completely know what you are saying…
I hope my ramble helps
Anna xx
CONFUSED Hi Anna
Thanks for your reply.
I have an e-petition set up to help people with chronic illness and cancer get health/life insurance.
I also have put in a request last week for one for travel insurance. I will hopefully have the link for that by the end of next week.
petitions.pm.gov.uk/Cancer-Penalty/
I am so confused about the information my breast care nurse has told me about ill-fitting bras.
If we all wear correct fitting bras and this does in fact reduce the risk of lumps then promoting correctly fitting bras is surely a good thing.
Sorry to ramble on, but I am so confused.
Fee
query ill fitting bras Sounds rubbish to me - you could ask where this bit of research comes from i.e. the evidence for it - and the size of sample etc
Mole
Confused tenovus.com/index.cfm?UUID=797F3CCB-65BF-7E43-37F3E8C7343F5996
This is where they have got their information from.
Honestly I am totally confused.
Fee
dear fee fee Nowhere in the tenovus article does it say that wearing ill fitting bras causes breast cancer. All it advises is getting rid of ill fitting ones. They are uncomfortable so that makes sense. I went to rigby and pellar, the queen’s bra maker and they measured me by eye. I am now a 34B, I was always a 36A before! NB beware of rigby and pellar as their bras are extortionately expensive, maybe just go there to be measured and buy from m and s or a cheaper supplier.
The tenovus article is strange as it refers to bras and alcohol as if they are both risk factors but don’t quote any evidence for either.
As I understand it, there’s meant to be a loose association between risk of breast cancer and number of alcohol units consumed. I don’t think it’s much of a risk factor though. The biggest risk factor is being a woman and age, i.e. the older you are, the higher the risk becomes. And how much oestrogen you have been exposed to seems to be important, so women who start menstruation early and have a late menopause are most at risk, especially if they don’t have children thereby upping the number of menstrual cycles they experience. Breast feeding is meant to lower risk particularly if you have children early in life as it is supposed to mature your breast tissue in some way.
There’s a load of complete b*ll*cks written about breast cancer which you will find. Plus lots of doctors, nurses and others tell you lots of out of date info on occasions. I check everything out. There are some good websites, e.g. breastcancer.org, which is an american site, Breakthrough Cancer, Cancer Research UK, and this site.
I like evidence from randomised controlled trials - the larger the better. Otherwise you can’t trust the results. Also I like to know how well run the trials were. It is quite difficult to get randomised trials of sufficient size. often results of smaller trials are added together and they don’t always match up.
Hi Fee
I have always taken it, that with DCIS, I have had cancer because when I went for my results I knew I was going to be told I had cancer, my mammogram was totaly black, so when they said it was non invasive cancer I breathed a big sigh of relief and the doctor then said ‘but it is still cancer’. When they examined the breast tissue I had an area of microinvasion and was told that if I had left things another 6 months I would have been in serious trouble.
Never heard anything about bras before I have always assumed that mine happened because I started periods at 10. I breast fed my kids but that didn’t seem to have helped. I have taken part in a study on breast cancer that Cambridge university is doing on 6000 women in the east of England and bras didn’t come into the questions. Family history, my medical history, eating patterns were the things they were interested in. It makes me laugh when I see all these things that we are supposed to do to prevent bc. My mother’s friend was a vegetarian non smoking non drinking fitness insructor with no family history of bc and she died of it. I don’t think you can live your life worrying that if you do this or you do that you might get bc I’m just going to live it and enjoy it and hope for the best.
As for travel insurance, you can get it it will cost you more and they will exclude cancer from cover.
Something major has happened to your body and it was because of cancer.It will take a long time to come to terms with everything, I have only just come to terms with all the scaring to my body, I had a DIEP reconstruction last July, I know that if I hadn’t been able to have that recon it would have taken me a lot longer.
Take care of yourself and be kind to yourself.
Love
Beverley
confused Hi Fee and Anna and all
Just to echo your exasperation with all this. After DCIS diagnosis I recently had a left breast mastectomy and DIEP flap. I too have concluded that technically I have had cancer, albeit Stage 0, non-invasive or however you like to categorise it. The medical staff obviously regard it as cancer and have said so. Having ‘Carcinoma’ in the title seems like a dead giveaway really?
Nevertheless, when I was dianosed I checked out a female cancer insurance policy that I’d held for years - thinking ‘well if I’m going to through all of this I might as well enjoy the benefits of a nice payout’. Not a bit of it - the small print revealed that they didn’t count this as real cancer and wouldn’t pay up!
I don’t mind not getting the money - obviously I’m thankful to be healthy, But if every other kind of insurance provider is now going to say I’ve had cancer and penalise me accordingly, the words ‘having cake and eating it’ spring to mind?
Yet more proof that insurance is basically provided to benefit insurance companies and not real people.
I’ll be happy to sign any petitions going…
Jane
CONFUSED Hi Jane
Well here are a few e-petitions to keep you busy for a little while.
One of which only went live today.
petitions.pm.gov.uk/Cancer-Penalty/
petitions.pm.gov.uk/hospitalparking/
petitions.pm.gov.uk/Cancer-Travel/
I really hope that we will be able to change things for the better and for the future.
I will never be free of hospital appointments for five years so as the rules stand at the moment I will not be able to get any of the insurances.
We should not feel confused about our conditions.
I have spoken to MacMIllan today and they say every woman is different and DCIS is different from one person to the next.
Thinking of you all.
Fee
Hi Fee, Jane, Terri
Just rang my lloyds TSB travel insurance company (get it with bank account) and when i told the guy i had had dcis and mastectomy…he asked had it progressed to invasive cancer, i said no, he said thats great then you are fully covered from 3 months post op…same as if id had a major op for anything…they just take op into account as cancer not invasive!!!
Quite a shock, i was expecting the 5 year thing!!! And to be forever tarred with the big C for all things insurance…im sure life insurance would probably be different!!!
Love Anna xx
CONFUSED That’s great news Anna
Wish I had applied for health/life insurance when I was 21 but I was so young and naive and it was too late at 22 as that is when it all hit me.
Never mind. This tortoise is plodding on slowly campaigning to change the world.
All the best to you.
Have a great weekend.
Fee
CONFUSED Hi All
Following the launch of my website with my story on it, I have received quite a bit of feedback.
Some ladies have just been measured and discovered they are wearing the wrong size bra and some who have been suffering back or shoulder pain have said since getting measured and now wearing the correct sized bra their pain has disappeared.
It’s amazing that ill-fitting bras could cause back or shoulder pain.
I am absolutely thrilled that I am able to help others.
Fee
Thank you, Fee Thanks, Fee, for posting about this. I am also confused - I am lucky enough to have kept my breast, albeit with a fairly hefty chunk missing. I start radio in a couple of weeks. All for something which is ‘not cancer’ just ‘pre-cancerous change’.
Most annoyingly, my manager at work has latched on to the ‘stage 0’ thing, and, having asked if I mind people knowing what’s happening, is now busily telling everyone that ‘it’s not cancer, but it could have been!’ Grrr. I’m being pestered by people enquiring, in the nicest way, when I’ll be back at work, because they just think it was some kind of test which came back negative.
Thank you for starting those petitions. I have signed, and I have also posted onward onto other messageboards, hoping to get the message out a bit more widely.
Best regards
Heather
Bah Humbug Hi Fee
And everyone else out there. I had a similar experience when following my mastectomy (I had recon at the same time) for DCIS I mentioned to my consultant that I had been on the 2 day course run by Backup “Living with Cancer”. He asked my why I had been on this as it did not have cancer!! I must admit I was pretty mad to say the least. If I did not have cancer (of some sort and I appreciate it is not as bad as some people) did I have 12 hours surgery and most of my body re-arranged? Added to which I now have to have further surger on 6th July to correct some of the problems I had with the initial surgery in 2004. I know lots of people have gone through much worse than I have and the most horrible thing I have to deal with is Tamoxifen (and don’t get me started on that!!!) but it has had a major impact on my life and also my family. Sometimes I think I have had fake cancer and others I am sure I suffer from a lot of the psycolocial problems other people have.
Getting insurance has been a problem so I have decided not to say I have been treated for DCIS - at the end of the day I am not going to be rushed into hospital for this or need any critical treatment. I would be able to get home and deal with this.
I am still confused what has happened to me. Some days I am very angry, some days spend the whole time in tears but I think it is about time the medical profession actually were consistant and deciding if DCIS is cancer or not and treat you accordingly. It is difficult to come to terms with what has happened to you as you feel guilty if you feel sorry for yourself as you don’t have to do the radiotherapy or chemo lot but on the other hand other people who do have this do not have the pscological problems of loosing part of your body and how this makes you feel. On the whold it is all pretty sh**t.
I have been told so many things why I got DCIS… I am over weight (so that is my doing), I have not had children (thought that was my choice), started my periods very early (boo suck what can I do about that), had to be put on the pill due to very heavy periods at 16 (do I sue my GP?) the list is endless!!!
I am nearly 3 years on from my initial surgery and don’t feel I know where I am. I have good days and bad days (on which I am accused of being grumpy!!!) and now I have to face further surgery. Sorry if I am not being of much help but hopefully as you can see you are not the only one who is confused out there it will give you some comfort. Hang in there. Things do get better but the best advice I can give you is be angry when you need to be and be happy when you can. This ******* disease (whatever you call it) takes over your life and it is difficult sometimes to get through one day and they others you look back and it is not so bad.
Take very good care of yourself
Debx
Confused As this thread has proved. DCIS sufferers are confused.
Can someone please help us. Or do you think we should set up our own self-help group.
I feel gutted that I have lost some of my body due to this illness.
It shouldn’t be triviliased it should be made more aware of.
Hope everyone esle agrees that this confusion should stop.
Hugs to everyone sufering out there. In tears, shouting or upset.
Thinking of you all.
Fee
What help would we want? I wrote a really long post last night on this, only to find I’d rewritten it so many times, I’d been logged out by the time I got to post it, and lost the lot! 
I spent a chunk of yesterday thinking about what we would actually want in the way of help from those working in the BC field. After all, if we chose, we could appeal to the Association of Breast Surgery, which is part of the British Association of Surgical Oncology about how they refer to DCIS based on patient experience.
The main problem seems to be that we are in limbo-land - we neither have cancer nor do we not. While we have no proper status, we can be refused insurance, but also refused cancer-triggered insurance pay-outs.
We undergo fairly radical treatment, but we can’t actually say it’s cancer treatment. My own specialist keeps asking me why I’m worried - after all, I don’t have cancer! Even on this board, we’re in a separate section from the breast cancer-titled groups (although I’m sure they wouldn’t mind if we joined in - still, the distinction is there).
But, given the chance, would we really want DCIS formally reclassified as cancer rather than ‘pre cancerous change’? There seem to be pros and cons either way.
Personally, I would like DCIS formally referred to as ‘non-invasive cancer’. Some of the major support websites, like breastcancer.org, are already using this term, and I don’t think it would kill the specialists to use this term also. It would feel like vindication for me, of all the treatment I’ve received.
Views?
Heather
I can’t believe it’s not cancer… Hi,
I remember feeling a sensation of relief when my oncologist said it was cancer, I felt that the enemy had a name. Yes- carcinoma, oncologist , mastectomy, radiotherapy…please don’t anyone try and tell me that this DCIS is a tame version of cancer, cancer-lite etc
My critical illness cover also exempted me in the small print. Obviously I didn’t want invasive cancer but I didn’t want bl***y DCIS either!
Barbara xxx
Hi All
My Dr has always refered to my DCIS as non invasive cancer - not pre cancer or anything else but I do feel he takes the disease lightly. I know he sees seriously ill patients every day and although I don’t have the worry of spread of my cancer I still worry about recurrance particularly as I had a reconstruction after mastectomy which could cover it up. I know I’ve been told that its very rare - less than 1% - but when you consider how many women are dx with DCIS every year it’s quite a few people. We also have the added wammy of having a higher risk of bc in the other breast and of cancer of the womb etc so I think for professionals or any one else to play this down is very bad and makes me mad!
Well that’s my rant for the day.
Love to all
Beverley