Not sure which option to take?

Nightmareshope

I had invasive ductal carcinoma. The surgeon did a lumpectomy. The pathology report came back that the margin was clean but out of the one centimetre margin .05 was DCIS . it is high grade comedo and has dead cells. He doesn't know how Much Is in the right breast. He wants to do a re-excision and then have me do radiation and hormone therapy. I was going with the right breast mastectomy, until my brother who is an anaesthesiologist said he would save the breast and do the same thing as the surgeon. I have no idea if I have DCIS in my left breast at all. Some women with DCIS are having both. Breasts removed and reconstruction. If you have DCIS in one breast how do they tell. If its in the other one? And how do people make a decision on when to have double mastectomys? Rather than. One mastectomy? Thank you Nightmareshopek

disneyfan2008

I had DCIS 2008 and Had a

I had DCIS 2008 and Had a lumpectomy-followed by radtion-no reconstruction-5 yrs of Tamoxifen.

 

I had 2nd lumpecomty (same side due to something suspicious) and it was just scar tissue from 2008.

 

 

 

Denise

Clementine_P

Opted for double mastectomy

Hi Nightmareshopek,

I had DCIS and Invasive Lobular Cancer in the same breast which totaled about 5 centimeters of cancer.  The surgeon told me, since I was small breasted, that there was no way that he could save my left breast.  I had pretty much already decided to do a double mastectomy at that point though and when I told my surgeon he agreed that it was the right thing to do.  The rationale I used to decide on the double was that I had a very strong family history of breast cancer (mother and both grandmothers), I had dense and difficult to diagnose breasts, I was young (40) and my cancer was aggressive, I wanted peace of mind (I would have to get an MRI and a Mammogram every 6 months and that would cause me anxiety), and I wanted to look symmetrical (I had reconstruction).  So, I opted for the double mastectomy. 

I hope this helps,

Clementine

Nightmareshope

disneyfan2008 said:

I had DCIS 2008 and Had a

I had DCIS 2008 and Had a lumpectomy-followed by radtion-no reconstruction-5 yrs of Tamoxifen.

 

I had 2nd lumpecomty (same side due to something suspicious) and it was just scar tissue from 2008.

 

 

 

Denise

Getting rad treatment n hormones

Hi Denise thank you for responding. I would like to ask what your rad treatment was like. Were you happy with your breast after radiation?

 

lintx

Clementine_P said:

Opted for double mastectomy

Hi Nightmareshopek,

I had DCIS and Invasive Lobular Cancer in the same breast which totaled about 5 centimeters of cancer.  The surgeon told me, since I was small breasted, that there was no way that he could save my left breast.  I had pretty much already decided to do a double mastectomy at that point though and when I told my surgeon he agreed that it was the right thing to do.  The rationale I used to decide on the double was that I had a very strong family history of breast cancer (mother and both grandmothers), I had dense and difficult to diagnose breasts, I was young (40) and my cancer was aggressive, I wanted peace of mind (I would have to get an MRI and a Mammogram every 6 months and that would cause me anxiety), and I wanted to look symmetrical (I had reconstruction).  So, I opted for the double mastectomy. 

I hope this helps,

Clementine

Hi Nighmareshope

I had invasive ductal carcinoma, aggressive.  In my case, the breast surgeon said it almost always goes to the other breast and suggested a bilateral to save me from another surgery down the road.  They only know for sure if your other breast has cancer when it is sent to pathology after removal.  My other one had no cancer.  The word aggressive spoke to me clearly, and I chose bilateral w/immediate Diep flap construction. No regrets here at all.  Gather info and make your most educated decision.  We are here for you and will answer any questions.  Hugs, Linda 

Nightmareshope

Clementine_P said:

Opted for double mastectomy

Hi Nightmareshopek,

I had DCIS and Invasive Lobular Cancer in the same breast which totaled about 5 centimeters of cancer.  The surgeon told me, since I was small breasted, that there was no way that he could save my left breast.  I had pretty much already decided to do a double mastectomy at that point though and when I told my surgeon he agreed that it was the right thing to do.  The rationale I used to decide on the double was that I had a very strong family history of breast cancer (mother and both grandmothers), I had dense and difficult to diagnose breasts, I was young (40) and my cancer was aggressive, I wanted peace of mind (I would have to get an MRI and a Mammogram every 6 months and that would cause me anxiety), and I wanted to look symmetrical (I had reconstruction).  So, I opted for the double mastectomy. 

I hope this helps,

Clementine

Getting rad treatment n hormones

Hi Clementine. Thank you for your post. I also wondered if I should have a double mastectomy. But am waiting to see if the surgeon knows if I have DCIS in left breast as well as the right one. Made a call today. My mother also had a mastectomy and is an 11 year survivor. I asked them if I would have to get mammogram S every six months also. Thanks again. Kathleen

Nightmareshope

lintx said:

Hi Nighmareshope

I had invasive ductal carcinoma, aggressive.  In my case, the breast surgeon said it almost always goes to the other breast and suggested a bilateral to save me from another surgery down the road.  They only know for sure if your other breast has cancer when it is sent to pathology after removal.  My other one had no cancer.  The word aggressive spoke to me clearly, and I chose bilateral w/immediate Diep flap construction. No regrets here at all.  Gather info and make your most educated decision.  We are here for you and will answer any questions.  Hugs, Linda 

Getting rad treatment n hormones

Hi Linda. Thank you for your post. How large was you tumor mine was 1.6 cm. Then they found the DCIS after the first surgery. My grade was 1a. The thing that upset me was that the pathology report said the cells were dividing fast and I had comedo DCIS which is the highest and most aggressive type of DCIS. STILL  confused with Oct.29th plastic surgeon date and Oct 8th surgery date. Has anyone heard of COMEDO DCIS?

Nightmareshope

lintx said:

Hi Nighmareshope

I had invasive ductal carcinoma, aggressive.  In my case, the breast surgeon said it almost always goes to the other breast and suggested a bilateral to save me from another surgery down the road.  They only know for sure if your other breast has cancer when it is sent to pathology after removal.  My other one had no cancer.  The word aggressive spoke to me clearly, and I chose bilateral w/immediate Diep flap construction. No regrets here at all.  Gather info and make your most educated decision.  We are here for you and will answer any questions.  Hugs, Linda 

Help

Hi Linda just wrote you and it all disappeared. Rats!! I am worried as I have COMEDO DCIS. Most aggressive DCIS and has calcifications and dead cells. The surgeon did not even share this with me.?? So I was going to do a regular mastectomy. Now am confused and have too many options. Did not ever want to do radiation. Has anyone had or heard of COMEDO DCIS? Kathleen

lintx

Nightmareshope said:

Getting rad treatment n hormones

Hi Linda. Thank you for your post. How large was you tumor mine was 1.6 cm. Then they found the DCIS after the first surgery. My grade was 1a. The thing that upset me was that the pathology report said the cells were dividing fast and I had comedo DCIS which is the highest and most aggressive type of DCIS. STILL  confused with Oct.29th plastic surgeon date and Oct 8th surgery date. Has anyone heard of COMEDO DCIS?

Kathleen

Mine was 1.5cm and grade was a 2 for me.  They staged me at 1 after surgery.  I had clean margins w/no node involvement.  I didn't have rads or chemo.  Mine was aggressive but not DCIS like yours.  It sounds like you have a different kind of agressive.  All of our cases are unique.  My tumor had tentacles with Lobular features.  Just like Clementine, I had dense tissue, knew it was aggressive and needed some peace of mind.  I also didn't want to play the waiting game w/6 mo MRI's and mammos.  On the flip side, there was no cancer on either side of my family tree.  My surgeon asked if I wanted to go home and think about a decision, and I blurted out, "bilateral."  There was no decision to be made.  I felt it was made for me.  The words aggressive/lobular features alone were enough guidance. Sounds like your DRs want the surgery to take place, review the new pathology report and then send you to the PS with healing in progress.  I know exactly what you are going through.  It is such a rough road in the beginning.  Mine was three years ago and very fresh in my mind. It is so hard to see yourself coming out on the other side, but you will and may be of some help to another person here.  Linda 

Double Whammy

Dr. Susan Love's Breast Book

Was very helpful to me in understanding MY breast cancer (IDC and DCIS) and I think it might help you in spite of it being a big, big, book.  I see she has a new edition out and I'll probably buy it as I've loaned mine to a friend and ever so often, even 5 years later, I want to look something up.  I know that high grade DCIS is more concerning than mine which was sort of medium.  My tumor was smaller than yours (.9 mm) but I had a rather large chunk of tissue removed because that breast was considerably larger than the other one and so they used the opportunity to do a mini-breast reduction.  Pathology did not show clear margins around the tumor itself, but that really wasn't an issue because the margins of the chunk itself were clear.  However, it did show "widespread DCIS" and that has always nagged me, but it doesn't concern my oncologist (I've asked about it).   Her response is they treated the IDC and radiated the whole breast.  I had chemotherpy because my oncotype score was high, radiation because I kept my breast, and am almost done with hormone therapy.  I think the bottom line is there are no guarantees, no matter which treatment you choose.  If you're having second thoughts, get a second opinion.  It's really ok to say "This is not as straightforward to me as I anticipated and I don't know what to do and would like to hear another opinion before going forward".  Then do it and put your mind at ease. 

Here's the link to the NCCN site with brochures for all stages of breast cancer.  This is also very helpful (and free, and not a novel).  http://www.nccn.org/patients/guidelines/cancers.aspx#breast  If you're feeling ambitious, you can also read the guidelines for physicians, but the brochures outline the standard of care recommended for the various types of breast cancer in a language with illustrations that we can understand. (sort of).

Suzanne

Nightmareshope

Double Whammy said:

Dr. Susan Love's Breast Book

Was very helpful to me in understanding MY breast cancer (IDC and DCIS) and I think it might help you in spite of it being a big, big, book.  I see she has a new edition out and I'll probably buy it as I've loaned mine to a friend and ever so often, even 5 years later, I want to look something up.  I know that high grade DCIS is more concerning than mine which was sort of medium.  My tumor was smaller than yours (.9 mm) but I had a rather large chunk of tissue removed because that breast was considerably larger than the other one and so they used the opportunity to do a mini-breast reduction.  Pathology did not show clear margins around the tumor itself, but that really wasn't an issue because the margins of the chunk itself were clear.  However, it did show "widespread DCIS" and that has always nagged me, but it doesn't concern my oncologist (I've asked about it).   Her response is they treated the IDC and radiated the whole breast.  I had chemotherpy because my oncotype score was high, radiation because I kept my breast, and am almost done with hormone therapy.  I think the bottom line is there are no guarantees, no matter which treatment you choose.  If you're having second thoughts, get a second opinion.  It's really ok to say "This is not as straightforward to me as I anticipated and I don't know what to do and would like to hear another opinion before going forward".  Then do it and put your mind at ease. 

Here's the link to the NCCN site with brochures for all stages of breast cancer.  This is also very helpful (and free, and not a novel).  http://www.nccn.org/patients/guidelines/cancers.aspx#breast  If you're feeling ambitious, you can also read the guidelines for physicians, but the brochures outline the standard of care recommended for the various types of breast cancer in a language with illustrations that we can understand. (sort of).

Suzanne

Getting rad treatment n hormones

Hi Suzanne. Thanks for the tip about Loves breast book, I started to read it when I was first diagnoses in July 2015. That's how I read my pathology report. I talked with the second opinion plastic surgeons nurse. She is going to call me tomorrow about cleaning up the mastectomy if my surgeon doesn't do a clean job of it. Then after some time I will probably get flap reconstruction. A year down the line or maybe not at all depending on how I feel. I also am asking my surgeon if he thinks I have COMEDO DCIS in my other breast. Then another decision to go with one or two breasts. Thank you for your input. Kathleen

GlowMore

Nightmareshope said:

Getting rad treatment n hormones

Hi Suzanne. Thanks for the tip about Loves breast book, I started to read it when I was first diagnoses in July 2015. That's how I read my pathology report. I talked with the second opinion plastic surgeons nurse. She is going to call me tomorrow about cleaning up the mastectomy if my surgeon doesn't do a clean job of it. Then after some time I will probably get flap reconstruction. A year down the line or maybe not at all depending on how I feel. I also am asking my surgeon if he thinks I have COMEDO DCIS in my other breast. Then another decision to go with one or two breasts. Thank you for your input. Kathleen

Hey NM HOPE

I'm sorry but I don't know what COMEDO means    I think I am very confused about your BC.   Are we to understand that you are Definitely having a Mastectomy ?   As far as thinking way ahead I would advise you to take this one step at a time.    I have IDC...which is Invasive Ductal Carcinoma.   I have always thought that  the  'IS' part of DCIS meant  'In Situ' which means it has not spread to other tissue.   I'm sorry if I sound like I don't know much....but you have sort of put a lot on the table here.   Take a Deep Breath and take it Day by Day....God will lead you to the right decisions.  Hugs, Glo

cinnamonsmile

I think it would be a good

I think it would be a good idea for you to post and read the DCIS forum at breastcancer.org. Many women use this site and that site. You will need to join to post, just as it is here.

Here is a link to the DCIS forum at breastcancer.org:

https://community.breastcancer.org/forum/68

 

Make sure you read the topic called A Layperson's Guide to DCIS pinned to the top of the forum.

cahjah75

I had

ILC in one breast and LCIS in the other with a strong family history decided on double mastectomy.  I had 6 rounds of chemo TC and 28 rads. This was 5 years ago and I was 61.  I'm on Arimidex for 10 years. My daughter, age 39 was just dx with IDC and decided on double mastectomy especially after MRI showed the clusters were in both breasts.  Depending on pathology results for whether oncologist will recommend rads and/or chemo.  My 2 sisters, one had IDC w/7 lymph nodes involved so she had lumpectomy, chemo and rads; the other dx 2x 8 years apart with DCIS in each breast had lumpectomy with rads both times.  Everyone is so different. You need to have confidence in your surgeon and oncologist/radiologist. 

I'm wondering if you had a 2nd biopsy done or MRI??