DCIS: Lumpectomy and Radiation or Mastectomy?

JordynsMom

I was diagnosed with Atypical Ductal Hyperplasia in August of 2014 and had a lumpectomy to remove it. The pathology report came back as an upgraded diagnosis of DCIS grade 2. I am only 28 years old and my grandmother and great-grandmother died of breast cancer very young. In their 30s and 40s. I am currently being tested for BRCA 1/2 mutations. The first half of the test came back negative and I am awaiting the more complete testing (BART) to see if its a true negative.The doctor recommends radiation if its negative and a double mastectomy if its positive. I'm scared of both options. My risk of radiation cancer if higher because I'm younger and I'm just not sure which will put my mind at ease more. My RO says I could make either decision, and I feel like if the BRCA results come back negative then I will still want to just be done with cancer and just opt for the double mastectomy. Anyone else make this decision? Are you happy with your decision?

Moderators

JordynsMom-

We just wanted to welcome you to our community here at BCO. We're sorry for what brings you here, but we're glad you've found us, and hope you find it to be a place of support when you need it most.

We're sure some of our members will be around to offer their advice and experience, but in the meantime, you might want to read through our BRCA forums, where you can connect with other members facing the same decisions. You can find it here: https://community.breastcancer.org/forum/112.

Again, welcome, and please let us know if we can be of any assistance.

The Mods

Annette47

You have to make the choice that you feel you can live with, but you should know that the risk of secondary cancers due to radiation is VERY low. Most of the stats out there on google are based on older protocols and that's just not how radiation is done anymore. My radiation oncologist told me that yes there is a risk, but that it is is "too low to quantify", meaning that it happens so infrequently that they can't even extrapolate a risk level into the population. Also, choosing a mastectomy (even bilateral) does not always mean that you can avoid radiation, or that you will never have breast cancer again - it does dramatically lessen the risk but not to zero. I have a friend who had a BMX for a small area of DCIS and 8 years later was diagnosed with Stage 3 ILC (a new cancer, not a recurrence). Very rare, but it can happen.

Personally, I chose lumpectomy with radiation and have been happy with my choice. I had no "burning" or other skin issues during treatment (although my areola has since completely faded it is painless and not a problem for me). I did have some fatigue but nothing that I couldn't function through. That said, there are many women who have chosen a BMX and been happy with their choice, but I would recommend reading some of the forums on surgery and reconstruction to get a realistic idea of the process and what you would be in for before making a decision. As I said it might turn out that a BMX is the right choice for you, but you should be fully informed with accurate information before making any choice.

Best of luck to you!

proudtospin

wow, you do have a choice to make.  I had DCIS, no history and had 3 lumpies plus radiation. 6 + years ago.
after your test results, I would vote for 2nd opinions and the best surgeon in your area to help you on which ever way you opt

good luck

have2laugh

Jordyn'smom- We all make choices based on the best info we have at the time. My little one was three when I was making my surgical choice. While my first instinct was mastectomy, I ultimately chose conservation partially due to the time of recovery. I could definitely see the advantages to mastectomy, too. I am not sure what choice I would make if I could turn back time-it is one of those things you can't say until you are there and I am hoping not to be there again!

 I will say it was never mentioned to me but I wish I had also considered the stress and expense of continued monitoring. I am not that far into the process so for me each follow up study still makes me question my choice but I hold onto the fact that most women find this lessens with time. You will have follow up either way but I just switched jobs primarily because of coverage issues with my employer-which happens to be a hospital system. I wish we didn't have to consider such things but as you weigh out your options for most of us, insurance and expenses-such as deductibles and copays come into play. You may want to ask what kind of follow up they might anticipate. It seems unfair that expense has to even be a consideration when making such a choice but unfortunately that is the way our health system is set up. I hope this isn't even an issue for you but it is something I never thought about before hand.

 You are making a great choice to get all the info you can while you wait for your genetic testing to come back. I remember the wait myself and I wish I had spent more time researching. Best of luck to you!

JordynsMom

Thank you both so much for your feedback! have2laugh I didn't have insurance when this all started so I had to pay for the ultrasounds, breast surgeon, biopsy, ect. on my own. I did eventually get share of cost Medicaid to help pay for the lumpectomy, but I have to pay for all the regular appointments and consultations myself because they come no where near meeting my share of cost of $1800 a month. But if it weren't for the share of cost I would not have been able to schedule the surgery because I didn't have the down payments which was thousands of dollars! I know the least invasive choice is radiation but I just don't know if I will feel peace of mind afterwards. Its either am I strong enough to do the radiation and hope and pray that I wont have to go through this again and that I wont have long term side effects from it, or do I do the double mastectomy and hopefully be done with breast cancer forever?!!

JordynsMom

Annette47 I actually just realized you posted on my comment as well, thank you so much for your feedback. That does help quite a bit. I keep going back and forth on my decision so that's the hard part! I have read that with the new technologies that secondary cancers are very very rare. Im happy to hear that you are happy with your decision! I wish all you ladies the best of luck!

nmh35

hi, I'm 35 and I just had a double mastecomy with reconstruction. I was diagnosed with high grade DCIS in my right Breast in December. My initial thought was that I would do lumpectomy with radiation. But like you, I decided that the BRCA testing would end up making my decision. It actually came back negative. There was another area of microcalcifications that my doctors had been watching and I asked them if they would actually biopsy that area instead of just founding out from the DCIS surgery pathology, and sure enough that area came back as DCIS also. So my decision was made for me because the area was too great for a lumpectomy. It's definitely a very difficulty choice when both options are good choices and there's no specific factor that points you in the right direction. You will just have to see what feels right for you

have2laugh

Jordyn'smom- So sorry you have to be concerned with insurance when you are dealing with this. One of the reasons I just switched jobs was the fact that the Regional Breast Cancer center in my area was run by a competing hospital system. Instead of getting care in one place, I had to patch work between covered providers and twice information was not passed to me in a timely manner, major information. I was just looking at the services provided in my local center and I noticed they do have treatment grants for those without insurance or considered underinsured. I would encourage you to look into these resources in your area. I volunteer for head and neck cancer checks and a walk every year run by a good friend who is speech pathologist . The goal of this fundraising is to help people in our community meet the financial demands of cancer treatment. If you can benefit from assistance and it takes some stress of you, that would be great. Most regional centers also offer mastectomy classes to prepare patients preoperatively-if this is your ultimate choice I would also encourage you to take try and find one of these classes.  

JordynsMom

Thank you so much, I can't say it enough! I've felt very alone these past few weeks since no one can relate to what I'm going through! I'm sorry to hear that you had issues with insurance as well have2laugh but that is so wonderful that you volunteer! I hope once I'm past all the treatments that I too will be able to help others going through this. Mnh35 that is so scary that you had a second spot of dcis also. Are you happy with your double mastectomy? How does it look and feel? You didn't have to do radiation or tamoxifen? I have an almost 5 year old and I was ready to have another but this puts a hold on things. I can't see waiting another 5 years to give her a sibling but it is what it is!

nmh35

jordynsmom-

I'm only a week out from surgery but so far happy. I had DIEP flap reconstruction so they used my stomach tissue instead of implants. I am still waiting for final pathology, if nothing shows up beside DCIS I won't have to do any other treatment. If for some reason a surprise invasive tumor came back, I would then have to discuss with an oncologist if anything further was needed

JordynsMom

That's great news!!! I'm so glad you are happy with your DIEP flap recon, that procedure looked pretty painful so I hope you heal quickly and are feeling okay! I pray everything comes back negative with any other test results for you and that you won't need further treatment :-)

kingster

Hi. Sorry that you have to make such a big decision at such a young age. I had extensive areas of dcis in both breasts, so bmx was my only choice. If you do choose lumpectomy, just follow up closely with all of the diagnostic testing. My mother also died at age 50 with breast cancer, so I was very fortunate to have found mine at stage 0. Also, you are not alone. We are all in this together. Take care.

kingster

I forgot to mention that I was braca negative. Also, keep in mind that radiation can adversely affect results of reconstruction in the future, as the skin becomes less pliable generally.

lusciousleaves

Coming late to this thread, but wondering how everyone is doing. I just had BMX last week for DCIS. This is how it went down that made up my mind for me:

2010: Direct-to-consumer genetic testing came back showing 22% lifetime risk of breast cancer, about 7% higher than average population.

2011: After sudden breast swelling with pain/redness/many lumps developing at once, started mammograms at age 42 (see, only one family member, an octagenarian, developed BC, but lots of other Cs in that lineage - stomach, 3X-lung, 2x-skin, ovarian in other family, etc.)

2011: First mammo required another visit for ultrasound, and at every annual mammo thereafter. The sudden swelling with lumps turned out to be a massive group of cysts. How odd is that? Every one of these cysts had to be cataloged at every subsequent annual breast exam, and all others that developed in the meantime.

Feb 2015: First calcifications showed up in clusters, came back for more views, then ultrasound, then biopsy.

During ultrasound testing the tech said to me, "I'm a breast cancer survivor. We have a lot of BC survivors here." How did they know before the biopsy? Apparently, they had a very strong suspicion. I'm sure they've seen it plenty of times. Up to that point, I wasn't too worried about this thing thinking, "It's just more of the fibrocystic changes they keep calling me back to look at."

During the biopsy, I hear several of them, doc, radiologist, and one other, talking amongst themselves over which target should they zero in on. Should we do this one? or this one . . . or was it this one that we were seeing on that view? No it was that one. :-O How many of these things are there peep-o?! They settle on one, remove it, take me back for the verifying mammo. Nope. Wrong target. Okay, this one looks like the one we want. Let's give it a go. Another shot of anesthetic, ow, ow, ow, ow, ow, ow, okay. That should do it. This one was a core biopsy with the larger needle, and she didn't just get the sample as the first go around, but took that thing around and around and around again, feeling as if she'd taken 1/3rd of my breast with it. Okay. I think you've probably got enough now, don't you? Mammo verified this was the one.

Path verified one as DCIS grade 2, ER+/PR+, 6mm biopsy sample, the other ADH, and one of those radial scars associated with both. Recommend MRI.

MRI came back showing no other suspicious lesions, from what was viewable. Half of the biopsied breast, and nearly the entire other breast lit up like a Christmas tree from 'florid fibrocystic changes.'

Consult with BS went down the usual way, I'm assuming. These are your options. Can't do tamoxifen - too hormone sensitive. Would prefer not to do radiation unless as a last resort at a later time. Will save that option for then. How is this cancer going to be followed with so much fibrocystic disease obscuring imaging? Take a few weeks. Talk to friends, family, hairdresser (who knows everyone and their experience, right?). Everyone says the same thing: "I'd do the mastectomy and get it over with." Too many stories of those who did lumpectomies/radiation only to have it return later more extensive and more aggressive. In ten years from now, hubs will be on medicare and who knows what I will have for insurance coverage. The time to take care of this is now. Another recurrence in ten years from now would bankrupt us. End of story. The answer is simple here. BMX it is. Let's do it.

Got it over with last week. Still have the drains. Got scolded by PS two days ago for doing too much and not playing princess, so now I sit on my duff, twiddling thumbs, looking for others in the same boat.

I'm still waiting on the final path report to be released for my review, but the BS did call to tell me there was no remaining DCIS in the biopsied breast. The other breast had some atypical lobular hyperplasia. There was more, but those were the important parts they wanted me to know before she headed out for the week. There was no more extensive cancer found, and the nodes came back benign.

I'm feeling like I dodged a bullet, and am so glad that I had the opportunity to do this and make these choices while the cancer was so early. Even another month could have meant chemo. They allowed me to have a total skin sparing mastectomy with immediate placement of expanders. Not enough tissue to use my own for reconstruction. Plus, whatever is there I need for my Copaxone injections for the MS.

This was absolutely the right choice for me. And I'm sorry to say it, but the possibility of not having insurance when/if this recurred in 10 years was a huge part of that choice.