DCIS ONLY DISCOVERED WITH PAGETS OPERATION NOT IN MAMMOGRAM

Hi

Just wanted to see general consensus on decision needed.

I had my operation to remove Paget's (central excision lumpectomy) on 20th December. Prior to the there was no sign of any DCIS on any mammograms or ultrasound.

Pathology report on removed tissue finally through and just been told yesterday that they found 2.5cm high grade DCIS within the tissue removed with a good border. So I have been given the option now of going back in for a mastectomy or just monitor with yearly mammograms.

Well considering this one never showed up on the mammogram or ultrasound, I don't think I can risk relying on mammograms to find anymore DCIS, and who is to say if there is not another patch lurking in the rest of the breast. So most likely will go back for the mastectomy to avoid any worrying.

Overnight am now thinking I should just be done with it and have a double mastectomy, as if I have any DCIS in other breast they also may not show themselves and then may not show until it gets to the invasive stage - I know not all DCIS turns invasive, but considering I had high grade unseen on mammograms then I cannot trust yearly mammograms surely?

If I had not had Paget's then the DCIS would have remain unseen for another year and possibly turned invasive by the time it shows on a mammogram. Or am I overthinking this? Surgeon had said the DCIS and Paget's was unrelated.

Surgeon doesn't seem to think double is necessary, as low percentage of people get BC in 2nd breast, but then a low percentage of people with BC have Paget's so I can't cling to that one!

Here in the UK MRIs are not routinely used for breast screening, apparently yearly MRIs are not recommended if not necessary as recent medical info shows the dye collects in the brain, I did ask if that was just a COST ISSUE for teh NHS but they said definitely not.

So to be free of worry I feel I should just get rid of both. I am not a breast person, so that does not really bother me.

Any thoughts / insights / advice welcome, many thanks.

Eliza

eliza_246 - Your story is SO similar to mine! I was also diagnosed with Pagets and also had a clean mammogram and ultrasound. I did have an MRI before surgery that showed the DCIS directly under the pagets as well as another spot in that breast and one in the right. I did biopsies of the other two spots and those were both benign. However, I knew after the DCIS diagnosis I would be doing a BMX. I'm a total worrier and didn't want to have to constantly worry about all the future testing. I was also not trusting that mammograms and ultrasounds would find anything that could be lurking. I also had implants so was told cosmetically that it would be the only way to retain symmetry. I was previously an A cup so didn't have a lot of natural tissue. I was lucky enough to be able to do direct to implant so had silicone implants put in at the time of my BMX. Final pathology didn't reveal any surprises, my recovery was by all accounts fairly easy and I don't regret my decision for a minute! Feel free to message me if you have any other questions!

eliza_246 - I started driving about a week later. I don't have a desk job, I'm a realtor and so Dec/Jan was a great time for me to have surgery. I was pretty fit before surgery, was diligent about my exercises and started back with yoga at home about 6 weeks later. I think that was the most important thing that aided in my recovery. I had surgery the last day of November, hosted my husbands family for Xmas eve and went up North for NYE on a snowmobiling vacation. I didn't partake but my surgeon said it was up to me. I had an augmentation 7 years prior so not sure if that could have aided in recovery as well. It was a very similar experience. The recovery was definitely easier than I had imagined it would be.