I was given the diagnosis on Wednesday at the breast screening centre by the breast care nurse and told as it’s widespread in the right breast and medium to high grade the only option is a mastectomy. I’m in total shock and extremely tearful. I don’t want a mastectomy for something that may or may not develop into invasive cancer.
I’m an ex nurse so the first thing I did was research to learn as much as possible. I’m really struggling to find any studies or facts and statistics about the likelihood of it developing further and the possible rate it might grow as well as long term survival for DCIS surgery, invasive breast cancer and the normal population. Does anyone have any ideas where I might find some concrete evidence.
Ive been told that I should get to see the consultant in 3-4 weeks because of delays with Covid which I think is a long time to be in limbo.
Has anyone challenged the treatment plan and what was the response? 20 years ago when I nursed, a patient that challenged the medical view was seen as difficult.
When the nurse told my husband and I the diagnosis we both asked if there were any other options and she flatly said no. My hubby asked if we could delay and monitor more frequently but she was very brusque. I know she’s dealing with this on a daily basis but this is my breast and a very important part of me.
Mastectomy to her seemed to be like having a suspicious mole or in growing toenail removed. I know from nursing that it’s major surgery and not without huge emotional impacts.
I can’t believe women just blindly accept that mastectomy is the only way to go with something that is not an invasive cancer.
Any advice or experiences would be very much appreciated.
I’m really sorry you’re in this situation, it’s a massive shock and I too have been where you are. I have had DCIS twice … once low grade and 4mm for which I had a WLE and then 6 years later , a recurrence in the same breast, high grade 37mm for which I had a mastectomy.
I too am a nurse, so like you am used to looking at the evidence. There’s quite a lot of research out there… maybe start by looking on google scholar for research articles… just key in something like ‘ DCIS likelihood of becoming invasive’ and it will bring up a whole range of articles. But, as I found, the thing is with statistics is that they look at a whole population… but this is just about you…so, for example, I was told I had a 2 percent chance of recurrence, but it still happened, so I was unlucky, because in theory I had a 98% chance of not having a recurrence.
And the thing with DCIS is no one can definately predict whether it will turn invasive or not, in an individual case, although They may be able to tell you the likelihood,
This is why they always err on the side of caution, when proposing a treatment plan even though it seems at the time like they want to take a sledgehammer to crack a nut.
but you are very right to want to look at all the literature so that any decision you make is informed. I don’t think many people ‘blindly’ accept a mastectomy. I think most go ahead after in depth discussion with their team around what is the most appropriate treatment for their diagnosis as discussed in the MDT and a good look at the evidence. However, There are ladies that decide on a wait and watch approach, and of course you can challenge any proposed treatment plan and at the end of the day any decision will be ultimately yours to make.
Having a mastectomy is a big deal, I completely get that but for me personally, I couldn’t have lived with the worry of knowing that I had something inside me that had the ability to turn invasive…but everyone is very different and you have to do what is right for you.
Also, I would suggest asking questions around the grade of the DCIS…you mention that yours was medium to high grade…mine was too but mine was also with comedo necrosis which means that the cells had shed their dead skins…so that was an indicator that they were more likely to turn invasive.
I wish you the very best with your next steps
Hi. I was diagnosed with low risk Dcis, last year,a year on it hasn’t developed further. I was offered a mastectomy on my right breast,the area was too large to do a lumpectomy, and I immediately felt that this was way over the top for a situation that might never develop.
I tried to pull out of the system, but was made to feel like a naughty child.
If I could go back in time I would not have gone for that screening, all it has caused is emotionally and psychological trauma.
Having said that If mine had been a higher grade,I my have thought differently.
It’s very hard to find someone in a similar situation to help with emotions.
I have just been diagnosed and am finding myself in the same position now as you were then, I also don’t want a masectomy… for something which may not grow!
Did you come to peace and find a solution that worked for you?
Would you mind please sharing with me what happened?