DCIS - Just Diagnosed - So Many Decisions

teaka123

I am 61 and was just diagnosed with DCIS on Wednesday following biopsy Tuesday. As I understand it my options are a lumpectomy with radiation or a mastectomy. Given the size of the area to be removed I am leaning towards a mastectomy. Once that decision is made there will be so many other important decisions. Any advice and/or words of wisdom a most welcome. Thank you to each of you that have walked down this road before and now take the time to respond to the rest of us.

Clinical Report

Left Breast

Stage 0

Grade 3

ER & PR negative

Extremely dense

4 x 5.6 x 4

Ingerp

I had a large chunk taken out in 2016--8 cm x 6 cm x 3.3 cm. I never considered any kind of reconstruction--with clothes on you can't tell (and honestly I don't think about it much). If you decide to go lumpectomy/radiation, your decisions are done!

TheresaNJ08

I was also just diagnosed this week with DCIS. So I don't have any advice I just wanted to say I'm sorry you are going through this because I understand the shock and confusion. My diagnosis came after excisional biopsy/lumpectomy so I will be consulting with a plastic surgeon to discuss mastectomy with reconstruction and also with an oncologist to review the hormone blockers recommended to me. I am not a candidate for radiation.

Barrington

I was recently diagnosed with DCIS- looked to be extensive with an MRI showing a "busy" area from 12:00-4:00 on my left breast. Ductal area of DCIS seemed to be around 2:00 about 2cm from the nipple. I opted for a double mastectomy and had that completed last week. Final results DCIS extensive: 30mm area with a small area 3mm (0.3cm).

I will meet with a medical oncologist to discuss the possibility of Tamoxifen.

It's a very difficult decision to make on what to do but in my case a lumpectomy was not worth my continued worry of reoccurrence.

Surgery 4/9/19 Bilateral Mastectomy

Dx 4/17/19 DCIS & invasive Carcinoma, left, <1cm invasive carcinoma, Grade 2, ER+ PR+ Her2-

Moderators

Dear Barrington,

Welcome to the BCO community. We are sorry about your diagnosis and treatment and we are so glad that you reached out to our members to share your story. We hope that you will stay active here and benefit from the support and information that is readily shared by our members. Please let us know if there is anything we can do to help you to navigate your way around.

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ipenelope

Myusername~

Welcome and sorry you are dealing with this challenge. At first all the information can be very overwhelming. Be careful on where you research options given there are many sites that aren't reputable, American Cancer Society has really good information in addition to this site. The wait tends to be the worst between diagnoses and starting treatment.

What I was told, when I was deciding on lumpectomy compared to mastectomy, by the nurse educator was with a lumpectomy it's not if it will come back but when it will come back as the risk for return tumors is increased. I chose bilateral mastectomy due to family cancer history and knowing the thoughts of a return tumor on either side was too much mentally for me and my children.

Whatever you choose know all your feelings and questions are totally normal and you will have good days and days where everything feels overwhelming! Sending hugs and thoughts your way!!

teaka123

Barrington, I hope you are healing well - both physically and emotionally. Thank you for your response, especially given everything you must have going on. I have decided to have a mastectomy also. And hope to have reconstruction at the same time. I will meet with the plastic surgeon next week and see what he advices. Be well.

FrenchPorsche

Hi. Mine was a large area so I wasn’t offered a lumpectomy but I think I would have gone for the mastectomy anyway as it can lessen the chance of needing radiation afterwards. I was told I could possibly get away with a mastectomy and nothing else - so that appealed to me. I’m still waiting for my histology results so the need for any further treatment depends on that. It’s hard to have to go through this, but I hope you are able to make a decision you’re comfortable with.

teaka123

FrenchPorsche, thank you. This forum is such a blessing. Like you, I am going for the mastectomy. I am also a stage 0 and almost the same size. A lumpectomy would have been very large and required radiation which I did not want. No chemo or hormones will be needed in my case. Very relieved about that. I will be having the DIEP reconstructive surgery at the same time. Hope your recovery is going well and that your histology results were good.

Shadow63

I (55) was just diagnosed with DCIS on 5/3 following a needle biopsy. It was recommended that I have a lumpectomy and radiation. It is stage 0. I have an appointment next week to find out the Grade and other information. I'm trying to keep it together as there are other family issues going on. At this point I'm trying to make a list of questions for the Dr. and not become overwhelmed reading everything online.

Moderators

Hi Shadow! First of all, we wanted to welcome you to Breastcancer.org, and tell you that while we're sorry that you have to be here for this reason, we're glad you found our Community. We hope you find the support and advice you need here.

We know it's scary and there are so many questions right now, so we wanted to recommend you the following article from our main site: Your Diagnosis: Questions to Ask Your Doctor

We hope this helps! Please, keep us updated on how you're doing!

The Mods

TeddyDog

Hi All, I was diagnosed with DCIS on May 6th following biopsy. It all happened so fast, with followup mammogram on Monday 29th, diagnostic mammogram & ultrasound on Tuesday and then biopsy on Wednesday. Result came on following Monday. I am now booked in to NOLA for double mastectomy & DIEP flap reconstruction early June. It feels very surreal! I am 51 with 4 kids and a mother who was diagnosed with breast cancer at 40 and died at 45. Trying to be positive and remember that much has changed in treatment & surgery techniques since the early 80's -my mother's mastectomy scar seems pretty horrific to a teenage! So I have about 3 weeks to get my head around this before surgery..Hygge vibes to all!

Moderators

Hi TeddyDog! Welcome to our community at BCO. It's the club no one wants to join, but we hope you find support here! The first days and weeks are difficult, and like you said, very surreal! Just take it one day at a time. There have been so many advancements in treatment and surgery, and it sounds like you're in good hands! Please keep us posted on how you're doing in the coming days, we wish you the best on your surgery!

The Mods

Shadow63

Thank you. I finally figured out how to get back here. I'm glad that I found this site and agree this is club no one wants to be in. Like many others I never thought it would happen to me. I hope to learn and contribute.

Vonda03

I too have been diagnosed with DCIS stage 0 and both my breast surgeon and oncologist recommended lumpectomy and radiation. Now after much research I'm seeing that Tamoxifen will most likely be needed if I choose lumpectomy. Radiation and Tamoxifen scare the crap out of me. I was also told that if I choose bmx with reconstruction I will not need radiation or tamoxifen, as long as the pathology didn't come back invasive after surgery. So my question is, why do my providers recommend what seems like a harder path with 5 years of hormore therapy over 5 months of surgical recovery? Am I overreacting to the side effects of hormone therapy? I know that overall survival rate is the same with both procedures but what about quality of life? Anyone have any thoughts regarding surgery over hormone therapy? I have a surgery date scheduled for bmx but looking to see if anyone has a good argument for lumpectomy instead.

Vonda03

I too have been diagnosed with DCIS stage 0 and both my breast surgeon and oncologist recommended lumpectomy and radiation. Now after much research I'm seeing that Tamoxifen will most likely be needed if I choose lumpectomy. Radiation and Tamoxifen scare the crap out of me. I was also told that if I choose bmx with reconstruction I will not need radiation or tamoxifen, as long as the pathology didn't come back invasive after surgery. So my question is, why do my providers recommend what seems like a harder path with 5 years of hormore therapy over 5 months of surgical recovery? Am I overreacting to the side effects of hormone therapy? I know that overall survival rate is the same with both procedures but what about quality of life? Anyone have any thoughts regarding surgery over hormone therapy? I have a surgery date scheduled for bmx but looking to see if anyone has a good argument for lumpectomy instead.

Vonda03

I too have been diagnosed with DCIS stage 0 and both my breast surgeon and oncologist recommended lumpectomy and radiation. Now after much research I'm seeing that Tamoxifen will most likely be needed if I choose lumpectomy. Radiation and Tamoxifen scare the crap out of me. I was also told that if I choose bmx with reconstruction I will not need radiation or tamoxifen, as long as the pathology didn't come back invasive after surgery. So my question is, why do my providers recommend what seems like a harder path with 5 years of hormore therapy over 5 months of surgical recovery? Am I overreacting to the side effects of hormone therapy? I know that overall survival rate is the same with both procedures but what about quality of life? Anyone have any thoughts regarding surgery over hormone therapy? I have a surgery date scheduled for bmx but looking to see if anyone has a good argument for lumpectomy instead.

Vonda03

I too have been diagnosed with DCIS stage 0 and both my breast surgeon and oncologist recommended lumpectomy and radiation. Now after much research I'm seeing that Tamoxifen will most likely be needed if I choose lumpectomy. Radiation and Tamoxifen scare the crap out of me. I was also told that if I choose bmx with reconstruction I will not need radiation or tamoxifen, as long as the pathology didn't come back invasive after surgery. So my question is, why do my providers recommend what seems like a harder path with 5 years of hormore therapy over 5 months of surgical recovery? Am I overreacting to the side effects of hormone therapy? I know that overall survival rate is the same with both procedures but what about quality of life? Anyone have any thoughts regarding surgery over hormone therapy? I have a surgery date scheduled for bmx but looking to see if anyone has a good argument for lumpectomy instead.

Scrafgal

sorry to head about your diagnosis....just fyi:

A mastectomy is a hard surgery physically and emotionally. Don't count on a 5 month recovery only.

Second, If you would have breast reconstruction after your mastectomy, then your total surgery and recovery time could be a lot longer than 5 months. My mastectomy and original reconstructive surgery was in Feb 2017. Last week, over 2 years later, I had my final revision surgery....with a couple of surgeries in between....it takes a while to get things symmetrical sometimes...and then there is the issue of scheduling around work requirements...and I didn't even have complications like infections and such. Things went well with my surgeries from that perspective.

Just saying....

I am doing fine on tamoxifen but others do struggle.

In the end, there is no easy path...only the oath that seems best for us individually.

TB90

I want to add my experience so that the range of experiences can offer some clarity. Recovery following a mx really varies. I found it to be an easy recovery. I was not in the hospital overnight and once the drains were removed, I could easily have returned to work, but I waited to complete radiation first. All in all, I returned to work three months following a mx and rads. So it is very difficult to predict what your experience will be. I just wanted to provide both ends of the possibility spectrum. All the best to you!!

Col321

I was in your shoes last year. Dcis and chose double mastectomy. Sentinel nodes were negative so no radiation or tamoxifen were recommended. I did diep flap reconstruction and I won't lie, recovery from that surgery was very tough. But now I am on the other side (just did phase 2 of the reconstruction, which was so much easier) and I feel good and i am very glad I didn't need to do tamoxifen. I had read that many people stop taking tamoxifen before the five-year mark bec of the side effects.

MBPooch

Throwing my experience out there...I had BMX for DCIS and Pagets about a year and a half ago. Nothing else was found in my pathology and for me the recovery was quite easy. I had surgery with Direct to Implant on Nov 31, hosted Xmas eve dinner for my husbands family and took a trip up North for NYE. Yoga and stretching I think really aided in my recovery and with the Direct to Implant I woke up with breasts similar to what I had with no other surgery needed. Took a trip to Vegas 3 months later and was sitting poolside in a bikini and feeling pretty good.

Go with your gut. I didn't want to do radiation and hormone therapy and didn't want to constantly worry about imaging and whether something else could be happening. Really just wanted to put the whole experience behind me as quickly as possible!

teaka123

MBPooch,

Now if I can be "sitting poolside in a bikini and feeling pretty good" after my reconstruction it will be amazing! I haven't been in a bikini in years!

Goals.

MBPooch

teaka123 - That made me giggle! I hope it's an easy recovery for you, do keep us posted!