DCIS Treatment Options?

FresnoD · February 2003

I have been reading so many discussions since I was diagnosed January 16 with Extensive DCIS (non invasive) so I decided to post my question. Thank You in advance for any and all responses.

I am having a hard time deciding between my 2 options. Option 1 is to have another biopsy because my margins weren't clear and if they are then clear, follow up with Radiation and tomoxifen. Option 2 is to have a Mastectomy with reconstruction and then Tomoxifen.

I have been reading all the discussions about DCIS and I was wondering if you could share what helped you make your decision. My DCIS is Multifocal/Extensive and has comedo patterns present. In addition, the Nuclear grade is 2/3. My mom died from Ovarian cancer 2 years ago. My maternal grandmother also died from Ovarian cancer. My other grandmother died from Breast cancer that went untreated because she didn't tell anyone.

I feel like I should have a strong commitment to either saving my breast or getting rid of the DCIS entirely by having a Mastectomy but I keep going back and forth in my head which is driving me crazy. The doctors say the survival rate is the same with either option but it seems to me that a chance for reoccurrence would be lessoned by having the Mastectomy. I am awaiting getting in to have the test for the BRCA genes but probably won't get results before I need to make a decision.

Help - How did you make your decision? I have been reading the Dr. Susan Love book but wanted to get some advice from others that have been were I am right now.

Thanks again,
Diane

deb2 · February 2003

Diane - My sister and I were diagnosed with breast cancer in Fall 2001. My sister Kat had stage 1 invasive ductal carcinoma. I had DCIS, LCIS and a large benign tumor. (Family history - mother thyroid cancer & melanoma; maternal GM breast cancer; paternal great GM breast cancer; my mother's first cousin breast cancer.) Both of us decided to have bilateral mastectomies with reconstruction because we decided we did not want to wake up every morning for the rest of our lives and wonder 'Is today the day the cancer comes back?' My pathology after the surgery indicated that multiple sections of both breasts had prolific hyperplasia. As the oncologist put it, I had time bombs on my chest and it was just a matter of time. My sister's pathology showed some LCIS and no cancer in her lymph nodes. Neither of us regret our decision. We've met too many people who opted for lumpectomy, chemo, and radiation and had a reoccurrence 15 or 20 years later. Good luck on your decision making. Deb2

cruf · February 2003

Hi Diane! I was dx. with DCIS with same high grade qualities as you in 2000. I had a lumpectomy and was expecting to have radiation and Tamoxifen following. My margins weren't clear so I was given the same option as you. To me, this was a no brainer. The radiation would get rid of the cancer cells if there were any still lerking around but there was no guarantee one didn't get away. I chose the mastectomy with Tram Flap reconstruction and knew that all the breast tissue was gone. No, there is no guarantee it won't come back but I feel I did all that was possible at that time. I couldn't sit around and worry! It has been 2 1/2 years now and I'm happy with the decision I made and would do it the same way if the other side needs it(God forbid!)Please feel free to e-mail me with any questions. You can write here or at RPT1206@aol.com. Good luck with your decision. Whatevewr you chose is the right decision for you. HUGS!! Cathy

jamac · February 2003

Hi Diane. I was diagnosed with multicentric high grade DCIS in 2001. The the information I found indicated that because the disease was present in multiple quadrants of my breast with additional areas of calcifiactions in between that mastectomy was my best option for "cure". I decided to have simple mastectomy with immediate reconstruction. I think that if my disease had been confined to one area, I would have been offered surgery followed by radiation as an additional option. As it turned out, my plastic surgeon suggested a mammogram on my "healthy" breast before surgery and it showed newly formed microcalcifications too. I opted for bilateral mastectomies with reconstruction. One breast did have disease in mulitple areas and my "healthier" breast showed numerous areas of atypical ductal hyperplasia. I, too, have felt comfortable with my decision and happy with the outcome both cosmetically and in terms of a future with less chance of recurrence. I also still have the option of radiation if I were to develop a recurrence.I found a lot of info on the internet site done by the University of Pennsylvania called Oncolink that was specifically related to DCIS treatment options. I'd encourage you to ask and ask and ask your MD's for as much info as you can. Hope this helps. Jamac

laurajean · February 2003

After watching calcifications not change for three years, a biopsy was suggested. My GYN sent me to a 'hand picked' surgeon. I had a negative stereotactic biopsy in Nov2001. Six months later I had another biopsy and was diagnosed, to the surprise of many...with non-evasive DCIS. In August2002 I had a mastectomy and and TRAM flap reconstruction. I am on TAMOXIFEN. My surgeon who was responsible for insisting that the biopsies to be performed when other thought it was not necesary...told me that even though there are no guarantees of removing the cancer 100%, that a mastectomy was the way to go. I have had no need for radiation. I feel very lucky that I was able to catch this early and 'take care of it'. I guess my decision was made by the support and help of my surgeons.
I am unsure how the survival rate is the same for both your options, unless you are going to wait until the DCIS is invasive which could be five to eight years. That's a lot of stress to put yourself through. My rational was that after 'watching for three years', having a negative biopsy...the six months later possitive with only one of the two designated sites biopsied.
I think you are right in asking for help and opiions...maybe a second medical opinion would help. I am extremely fortunate because without the phenominal medical personel I have have as a support network, I wouldn't be in such a 'good' place. Feel free to email me at laurajean.palma@verizon.net. Just a note: I was suffering from depression which was not diagnosed until about a month before my second biopsy. Support is very important. Have you spoken to an oncologist?

FresnoD · February 2003

laurajean said:
After watching calcifications not change for three years, a biopsy was suggested. My GYN sent me to a 'hand picked' surgeon. I had a negative stereotactic biopsy in Nov2001. Six months later I had another biopsy and was diagnosed, to the surprise of many...with non-evasive DCIS. In August2002 I had a mastectomy and and TRAM flap reconstruction. I am on TAMOXIFEN. My surgeon who was responsible for insisting that the biopsies to be performed when other thought it was not necesary...told me that even though there are no guarantees of removing the cancer 100%, that a mastectomy was the way to go. I have had no need for radiation. I feel very lucky that I was able to catch this early and 'take care of it'. I guess my decision was made by the support and help of my surgeons.
I am unsure how the survival rate is the same for both your options, unless you are going to wait until the DCIS is invasive which could be five to eight years. That's a lot of stress to put yourself through. My rational was that after 'watching for three years', having a negative biopsy...the six months later possitive with only one of the two designated sites biopsied.
I think you are right in asking for help and opiions...maybe a second medical opinion would help. I am extremely fortunate because without the phenominal medical personel I have have as a support network, I wouldn't be in such a 'good' place. Feel free to email me at laurajean.palma@verizon.net. Just a note: I was suffering from depression which was not diagnosed until about a month before my second biopsy. Support is very important. Have you spoken to an oncologist?

Laurajean, Sorry you will get this response in your email also because I wasn't sure what I was doing. I meant to respond but click on the mail icon instead.

I have had a second opinion (2 oncologists) and both said that the survival rate would be the same. I think doctors tend to focus on the survival more that the risk of reoccurrence. My surgeon also told me that I could go either way. My family physician that I have been going to for over 15 years told me that although he isn't a specialist, if it was his wife he would suggest the Mastectomy.

In terms of support, I really have gotten a lot of information on this site and by reading other peoples questions regarding DCIS. In addition, I'm going to look into local support groups. At the moment I am going through a wide range of feelings. I think in some ways I am still in shock because it hasn't really hit me as bad as I think it should. I believe it will once I make my decision and we start moving forward with surgery and follow-up treatment.

Thanks for your response. I was so thrilled when I checked my posting later in the day and saw the responses. What a great group of ladies. :-)

disey · March 2003

Good Afternoon,
I have been having a feeling that I needed to go on-line to possibly help another woman who had a diagnosis of DCIS as there was no one who had too much personal information on DCIS when i was diagnosed.
The choice is yours on what to do....dont let someone else make the choice for you. I remember so clearly 7 years ago in the month of January at the age of 39 I was told from a mammogram that i had breast cancer. I actually had 5 "spots" on my film. Who ever heard of 5!!! spots???
I thought i would be dead in weeks! I got scheduled for a mastectomy by the doctor and surgeon. Then my gynecologist pulled in the reins on the run away horse and said, "you deserve a biopsy." I had a biopsy and found that i had multi-focal DCIS, with comedo and necrosis.
I also read Dr. Love's book, actually I think that book saved my life as i was very depressed. I ultimately decided to go with a wide excisional biopsy and followed up with 7 weeks of radiation. Tamoxifen was considered...but I also had fibroids and the research was not as strong as it is now for the tamoxifen and early stage breat cancer.
HERE I AM!......7 years later....I am a survivor.
I am happy with the choice i made. I feel for you and hope soon you will find peace.
GOOD luck with your decision. Whatever you decide...it is your decision..not anyone else's.
Hugs and Hope to you,
Diane

monkeyboymommy · March 2003

Hi Fresno:
I was dx with bc last April 13, after I had a stereotactic biopsy. I didn't fit any of the parameters either, no history in my family. First I visited with the surgeon who said that I was lucky. (What an oxymoron!) She said my cancer was "whimpy" and she explained the options that I faced.

First I opted for a lumpectomy, and had an additional biopsy (on the table) which proved that I had multicentric disease. They (the ubiquitous "they") all said, Mastectomy. Well that totally threw me how could I go from lucky to mastectomy? I told my surgeon that I wanted to save my breast and my life. She then consulted with the team and they all felt that I could beat this if I had an additional lumpectomy for the second site and radiation and tamoxifen.
So far I haven't regretting making the decisions I have made to date. I have been hating having this disease from the start. Its so draining. So was the radiation and the tamoxifen is no picnic either. But what are the other options?

I hope this helps you. I am so glad that there is this network. I've been dealing with DCIS for over one year without the support and input from other survivors.
Good luck and let me know what you decide.
Peace,
Lori

DCIS Treatment Options?

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