I’m glad you have already had a number of responses from other forum users. Please do also remember that Breast Cancer Care’s confidential Helpline is here for you, offering support and information. Calls to the helpline are free, lines open Monday to Friday 9am - 5pm and Saturday 9am - 2pm, telephone 0808 800 6000.
No, I didn’t have ADH. I’d been hassling my doctor (and turned away 3 times with ‘nothing wrong as no lump’, after presenting with intense itching in the breast and nipple. Mamo had shown calcification and DCIS med grade ER+ was picked up on core biopsy (I must one of the ‘6 in 100’ as post mastectomy histolog showed that I in fact had 10.2 cms of mostl ‘high grade’ DCIS and 4 areas of invasive disease. As I said before, left unattended, I definately wouldn’t have been here.
I would never preach to anyone to go ahead with mast etc. It is the minority of cases of DCIS that will go on to become invasive cancer and I guess I was just one of the unlucky ones - mind you, conversely, I actually feel fortunate that at least I now have proof that the operation was an absolute necessity so there will never be any feelings of ‘what if I’d left it’, so I guess something good has come out of this … I agree with Leadie that you have to be comfortable with your decision and I reiterate ask, ask, ask. Make a thorough pain of yourself if necessary until you have all the info you need. This is your body and your life.
There is a great deal of literature on this and the reason one gets conflicting information is because the answers simply are not known. Mammography is a blunt instrument not able to distinguish between genuinely life-threatening cancers and others; the pathology of breast cancer is not currently sufficiently understood for them to know whether noninvasive and early invasive cancer is of a kind to progress or not.
Some experts now take the view that screening is doing more harm than good, and if you look at the debate on whether to introduce prostate screening you will see the same issues apply - they hesitate to introduce it precisely because of overtreatment. It is being questioned whether screening does reduce mortality from bc - this is claimed by the NHS but the literature questions this. That is, it is suggested that treatment is now improved to the point where symptomatic cancer has a much better prognosis, and screening is therefore not making much if any difference to survival.
Don’t take my word for this - the information is there, but you have to look for it. And ask your, and other, doctors about this and other things. Go away and think about it and go back and ask more. Ask for all details of your pathology and ask them to go through it with you in detail until you understand it. Then go away and think about it and go back and ask more. They are obliged to give you the time you need to understand. If you consent to surgery before that point your consent is not valid. If you are screen-detected, they have made this work for themselves, you did not have the initiative, so they cannot mind doing it: it is your body, your life, your breast.
You cannot know, either, whether your reconstruction if you go for it will be uncomplicated or not. Other people’s stories are helpful but in the end you know this: for some it is okay and for some it is not. People vary on what they expect, what they hope for, what they can tolerate, and what is possible for them, and surgeons vary on what they like to do.
It is terribly important not to be hurried into a decision and to take plenty of time to get the bigger picture and to digest the information to a point where you feel you have a perspective.
There is so much about DCIS. arguments for and against, that I think it makes any decision harder and it has to be personel. Take your time and don’t rush in to anything.
I have DCIS and Invasive DC. I had a lumpectomy/partial mastectomy 3 weeks ago and a re-excision last week. My Cons was almost dismissive of the DCIS, he wanted the tumour out as that was his “area of concern” - aggresive grade 3. The DCIS is high grade. He advised me that the survival rate appears to be no different between a lumpectomy and a mx and that they will keep an eye on me. In each surgery areas of DCIS were shown to have been removed along with either lump or bad cells but I was still not recommend a MX. The problem, as my con’s senior reg said, is that at this time no one knows which DCIS will become the full blown thing so until they crack a way of identification we are left with the dilemma. I figured that as they don’t want me to be a “bad” statistic, lumpectomys cost them more so I wasn’t being offered a “cheaper” budget driven option (does that sound hard and cynical?) and that it’s the Consultants job to know what’s best, his area of specialism, I’d follow his advice. At the moment I don’t regret it.
I’m sorry you have this hard decision to make and I’m sure you will make the right one for you.
I was misdiagnosed for six months then rushed into making a decision on surgery for DCIS. I asked how long it would be before I could make an informed decision and one of the breast cancer nurses told me it would be four months.
At the time I thought I couldn’t possibly wait this long as my understanding was that in 4 months it would spread everywhere. My knowledge is far greater now. For low grade cancer like mine I now think it would not have made any difference waiting longer. But the problem is the uncertainty and this makes people risk averse.
My conclusion is that there needs to be more research in this area. I’ve decided not to have any mammograms as I wouldn’t do anything if I did find any more DCIS - and now I’m on the cancer radar they are going to be much keener to find it
I was diagnosed last November with invasive 11x9cm I have had chemo 6 months worth and just had mastectomy with recon.
I was told it started as DCIS although after surgery the chemo made it regress back into DCIS but it had already infected 2 nodes so had nodes removed also and there was also another area in the same bust also with cancer so best to get it out (for me).
Like the other lady says the worst part is losing the nipple but apart from that it’s more or less the same as before.
I will send you a pm. love caron xx