Just Diagnosed

ClearCreek1

As so many others have posted I have just been diagnosed with breast cancer. Forgive me for not being up on all the terminology. My cancer is DCIS in situ, grade 3. Initially I was not overly alarmed as I thought it would involve relatively minor surgery as my cancer was microscopic, newly formed, yada, yada. At my surgeon consultation last night I quickly realized newly diagnosed does not mean relatively small. Here I am a gal who has at least one mammogram a year and usually at least one ultrasound being diagnosed with a 2" section of the breast that needs to be removed. At my request for the BS to show me how much of a section she would remove during a lumpectomy I was overwhelmed by the spread of area. Pretty much a quarter of my breast. My questions to the community are these -

If you went with lumpectomy how much of an area was excised and were the aesthetic results better or worse than expected? My surgeon offered up three options; lumpectomy with radiation, mastectomy or a bi-lateral mastectomy (for uniformity of reconstruction). Initially I thought lumpectomy but radiation scares me worse than surgery. If you chose mastectomy why did you choose that route? And if so did you elect to have reconstruction? At 56 I am confident in my body and don't feel who I am tied to breast identity but find myself considering double mastectomy for the aesthetics but of course my long term health is paramount to my ultimate decision. I have lived the last 35 years with the specter of colon cancer hanging over me as I have ulcerative colitis and am not sure I can deal with wondering if the next mammogram will reveal issues in the healthy breast. Too many thoughts to process. Any feedback appreciated.

Beesie

ClearCreek, sorry you've joined us, but welcome!

DCIS, more so than invasive cancer, can spread out within the breast. This is because DCIS cells are confined to the milk ducts. Milk ducts are very narrow, so as the malignant cells multiply, rather than form a larger and larger solid mass in one location, the individual DCIS cells spread out through the narrow ducts of the breast. When I was diagnosed I had two areas of grade 3 DCIS that in total were over 7cm in size. With that much DCIS, I had no choice about the surgery - I would have preferred to have a lumpectomy but had to go with the mastectomy instead. I had implant reconstruction. I wanted reconstruction because I was having a single mastectomy, and didn't want to be flat on just one side. And I opted for implant reconstruction because I did not want to affect other parts of my body. I really was just looking for something to give me shape and fill my bra, and implant reconstruction fit the bill.

The good news with DCIS is that no matter how much you have, if no invasive cancer is found and the final diagnosis is pure DCIS, it is always Stage 0. That said, in about 20% of cases, an initial needle biopsy finding of DCIS will be upgraded because some invasive cancer is found. In addition to my very large amount of DCIS, I also had a very tiny microinvasion of IDC - just 1mm in size. But that tiny tiny tumor upgraded my staging to Stage IA. So until surgery is done and all the suspicious breast tissue has been examined under a microscope, every diagnosis is preliminary. Hopefully you'll land in the 80% who are not upgraded!

There are some differences between DCIS and IDC and these can factor into the lumpectomy vs. mastectomy decision. I'd suggest that you take a read through some of the threads in the DCIS forum. Here are two threads to get you started:

Topic: lumpectomy vs mastectomy - why did you choose your route? https://community.breastcancer.org/forum/68/topics...

Topic: A layperson's guide to DCIS https://community.breastcancer.org/forum/68/topics/790992

LivinLife

Welcome ClearCreek! It is important you make a decision you are comfortable with regarding type of surgery. that being said you will be able to gather a lot of information and others' experiences. there are lumpectomy forums, threads on mastectomy and bilateral mastectomy with and without reconstruction. check them out and see how these feel as you think about you, your situation and your future. It helped me a lot in my very early days of decision-making.

I had Grade 3 DCIS too with expansive comedo-necrosis. I have scleroderma, among many other medical issues, which meant I was unable to undergo radiation leaving me with the mastectomy option. I have issues healing; wanted to avoid additional surgeries for margins, etc. and to minimize any future surgeries as much as possible. Also, I'm older - age, gravity, large breasts are unkind lol and I have various cancers all over my family and extended family. Bilateral made sense to me soon into my time on this site. Initially it seemed like such an extreme decision. I knew prior to the DCIS diagnosis reconstruction would never be an option for me due to healing issues and autoimmune issues. I've been going flat - you will see many posts on that too - and it's been soooo nice not to have big droopy breasts - just have to say that. There are others who truly grieve.... I have not though... there's a lot for you to consider... just do what is right for you!

MountainMia

Hi Clear Creek. I had both DCIS and IDC (invasive) tumor. I was 58 when diagnosed a year and a half ago. I opted for lumpectomy with radiation (and had chemo, because of the type of cancer.) My DCIS, larger than the IDC, was measured in pathology as being 2.9cm, or a little less than 1.25 inches. With margins for both, my surgical excision was about the size of a golf ball. My breast surgeon was very good, took what she needed, rearranged tissue, and sewed me back up. There was VERY little noticeable difference in appearance, other than I was slightly smaller. That would depend on your size otherwise and perhaps where the tumor is located, things to ask your surgeon about.

I agree with the others that you will find a lot of discussion on making this decision in other posts and you can learn a lot about pros and cons of each. Good luck.

hopeful23

Beesie and LivinLife, I asked some questions on another thread that you have answered for me here. Thank you!

ClearCreek1, I had a lumpectomy and radiation for DCIS five years ago. My incision was on the bottom of my breast, going from bottom to near the nipple. My surgeon did an amazing job and the incision is barely noticeable. It does help that the incision was on the underside I think. Unfortunately I don’t know how large the excision was. There is a dimply look to the skin in the lumpectomy area, like it could use a little filling in, but it is aesthetically fine to me and I think pretty unnoticeable. I was nervous about radiation but my skin tolerated it very well. The first few days my skin was getting quite pink, but the radiation oncologist prescribed a cream that did the trick. Never had any redness at all while using it. If you are considering lumpectomy, ask your surgeon where your incision will be and also how many radiation treatments you would have. Some radiation courses seem to be quite short. I certainly understand your consideration for mastectomy. Even though recurrence can be quite low, it can happen, and I have read recurrence with mastectomy is lower. I hope with the help of your surgeon and others on this board you will be able to make the best choice for you. Best of luck!

Mymomsgirl

Clearcreek, there is also the option of oncoplastic surgery which is a lumpectomy with immediate reconstruction performed by my BS and PS. I went this route and had my other breast reduced at the same time. I needed a 2nd surgery to remove a fat necrosis that formed, but overall it was a good decision for me. Remember this is about you.

Moderators

Welcome, ClearCreek1! We're so sorry you find yourself here, but we hope you find this to be a supportive and welcoming place. We're here for you every step of the way!

The Mods

Rah2464

ClearCreek - I was also originally diagnosed with DCIS and chose a bilateral mastectomy because my breasts were very difficult to image and I was hoping not to have any additional treatments such as anti hormonals. I was 54 at the time and went direct to implant for my surgery. I also, like Beesie, had an upgrade to IDC post surgery which altered my treatment plan a bit but I do not have any regrets. Wishing you the best on your decision making and the best on your journey back to full health.

abigailj

Hi ClearCreek - I was 62 at diagnosis, had a small IDC tumor in right and ILC in left. I was offered lumpectomy for both with radiation but given that there was a large area on left, my dense breast tissue, not wanting to be anxious with frequent scans and the fact that I was a good candidate for immediate DIEP recon, I opted for a spin sparing BMX with DIEP. I was lucky, had some wound healing complications but all fine now and happy with outcome. It’s such a personal decision but as long as you feel at peace with whatever you choose and have confidence in your medical team I’m sure you’ll come through this well too

ClearCreek1

Thanks to all for your input and feedback. Based on the responses I have more questions to ask of my nurse navigator and BS during this process which is the goal I had in mind when I posted the questions. As you all stated each situation is unique and no two peoples diagnosis or treatment will be the same but it helps to hear the reasoning behind decisions.