DCIS and MRI reveals AREA OF UNUSUAL DENSITY BEHIND left nipple

zeldabug

Oh dear. I am so tired of asking questions. But here I am to ask yet another.

In October I was diagnosed with DCIS Grade 2. The surgeon suggested a lumpectomy. I said I would think about it...(rolling my eyes now). I did a lot of research in medical journals. I think I have read all the latest articles on DCIS and all the controversy about it. Ive been having a difficult time (and I really don't want to offend anyone) with understanding having surgery for something that might be cancer. I have become interested in active surveillance. I asked for an MRI. I had an MRI last Thursday, met with the surgeon yesterday.

Apparently the MRI showed a large area (5cm x 2cm x 3 cm) of suspicious density (think that is what they called it) right behind the left nipple. Given the fact that I am a 34A this is a huge part of my breast. The surgeon is now recommending a mastectomy because it is too big an area for a lumpectomy. They cannot tell for sure if it is cancer. The radiologist apparently said she would be suprized if it wasn't.

I don't know what to do. Another biopsy? Move to another planet?

I am having a very distressing time accepting the idea of a mastectomy to see if I have cancer.

I also have found it very difficult to discuss this with friends....I know they are caring but all of them are saying just have a mastectomy and get it over with.

I feel I am being a huge pain in the butt to everyone. So today I thought I would write this and be annoying to people I don't know.

Has anyone else felt like this? What are your thoughts?

MBPooch

Joined: Oct 2017Posts: 5

zeldabug - I was diagnosed with DCIS behind the nipple in October that also presented as Pagets on the nipple itself. I am thin and had a breast augmentation almost 7 years ago, like you, I was a 34A. Because I didn't have enough breast tissue for a lumpectomy I was told I would need a mastectomy as well. Everyone has different opinions about this but I knew the second I was diagnosed that I would want a bilateral mastectomy. Knowing that there were already abnormal/pre-cancerous cells present (my mass was 1.7 cm) and there was no guarantee they wouldn't become invasive at some point, I wanted it out as quickly as possible. I am young, have two teenage girls and didn't want to have to continue to worry about the what-if's . I chose a double as I knew I would lose the nipple on the left, I didn't want a reoccurrence on the right and with my previous implants wanted them both replaced at the same time. I'm almost 2 weeks out, was able to get direct to implant on the day of my surgery and I feel great. Got the all clear from my surgeon that only the one area of DCIS was found, I have clean margins and my nodes were clear. The amount of relief I have has been completely worth it for me!

MTwoman

zeldabug, "I am having a very distressing time accepting the idea of a mastectomy to see if I have cancer" that sounds as if it might be a good idea to get another biopsy (or 2) of the area so you know what you're dealing with. I ended up with mx due to multi-focal dcis. I know it is a lot to take in, I had elected lx, but after a post lx mri found 2 more areas that were also proven to be DCIS, I was out of options.

there is a thread "cancer/not cancer what to you say to people" that might be helpful for you right now. (https://community.breastcancer.org/forum/68/topics/853479?page=1)

I'm sure others will weigh in soon, but in the final analysis, you have to choose what seems to be the right thing for you, given your personal risk profile and your personal risk tolerance.

zeldabug

Thank you both for your comments. They are very helpful.

I spoke with the surgeon again today. She is going to make a referral for a second opinion. She is hopeful that I may be able to have it before Christmas.

When I spoke to her yesterday...when she was giving me all the news, I asked her, on a scale of 1-10 how concerned she was about the new information. She said 6. I thought it was a pretty low number for the information I was hearing. But then I thought.....maybe in terms of the things surgeons see every day...this is a 6/10.

During our conversation today we were talking about the chances of the area actually being cancer and she said ‘well as I said yesterday I think there is a 60% chance it’s cancer.’ I suddenly was blank....just blink blink....! That’s what she meant by 6/10. So I’ve been much more worried this afternoon. I’ve calmed down now ( sort of)

Im glad I will get a second opinion. Plus (she said grabbing at straws, trying to reassure herself) ..... I think it is good (not much fun though) that I asked for an MRI because now we know there is apparently quite a bit more of something there that might not have shown up in a lumpectomy.

Again....thank you for help. It was good to hear from you boththis afternoon when I was feeling pretty upset.

ZeldaB

MBPooch

zeldabug - One other thing to consider. While DCIS is considered Stage 0, some DCIS may lead to invasive cancer if not treated and some may not. When the DCIS is removed, whether lumpectomy or mastectomy it is then sent to pathology. The DCIS is graded and based on that info more aggressive treatment may be needed. If anyone has more info on this please chime in! I just spoke to my oncologist this evening and my DCIS was grade 3. Because I had a BMX he said there is no further treatment needed. It's considered stage 0, contained to the duct and fully removed. I also had no lymph node activity. However, he said without the BMX and some other treatment, like a lumpectomy, because of the grade being aggressive I would have needed radiation (which is needed anyway in the case of a lumpectomy) but also tamoxifen. I hope you get all the answers you need to make the decision that's best for you, please keep us posted!

zeldabug

Thank you for thinking of me mbpooch. I will let you know what happens. I’m keeping my fingers crossed that I will find out about the second opinion appointment tomorrow!

Take care

Zeldabug

MTwoman

MBPooch, regardless of the grade, DCIS treated with lx typically receives a rads recommendation. The recommendations for ER+ DCIS include endocrine therapy. A really confusing thing about DCIS is that they can't tell (yet) which DCIS cells will advance to IDC and which won't. It isn't strictly along Grade 1, 2 or 3 lines, as there are women on these boards with less than grade 3 who've gone on to have a recurrence. There is quite a bit of research currently ongoing (and recently published) that is investigating the micro-environment as a deciding factor. So until they figure out how to differentiate between what will and what won't, the vast majority of DCIS gets the same recommendations (except ER- DCIS, as there is no convincing data that endocrine therapies provide benefit)

This recent article is pretty thorough and describes the current knowledge and conflicting info to date: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660056/ . It is not behind a paywall, so enjoy

MBPooch

Great article MTwoman! DCIS is scary as there is still so much to learn. I was ER+/PR+ which is why oncologist said Tamoxifen would've been needed had I not chosen a BMX. Getting a cancer diagnosis is so scary and we have so many decisions to make with so much inconclusive information out there. I really applaud all of us for learning as much as we can and making the best decision we can for ourselves!

zeldabug

it is s fabulous article. Thank you very much.

I have a pile of articles, including one that is “ online ahead of publication” from 2018. I guess that means I am consulting the future🙄. I am not sure if there is a way for me to attach it...or make a link? I kind of live in a techno cave. I’m a bit stuck in the 1980’s as far as techno junk goes