DCIS

Datsy

I am new to this site.  I was diagnosed April 15 with DCIS.  I had a double mastectomy on May 5.  Is there anyone that has had DCIS?

 

cinnamonsmile

Datsy, I had a double

Datsy, I had a double mastectomy for DCIS in 2011. DCIS is the "best" breast cancer you can have. It is ONLY in the milk ducts. Since you didn't need radiation, I am assuming you had clean margins. I was told that since I "only" had DCIS and had a BMX (bilateral mastectomy) there is very little chance of it ever cmoing back. I worry more about some of my other health issues and rarely if ever worry about breast cancer coming back.

Datsy

cinnamonsmile said:

Datsy, I had a double

Datsy, I had a double mastectomy for DCIS in 2011. DCIS is the "best" breast cancer you can have. It is ONLY in the milk ducts. Since you didn't need radiation, I am assuming you had clean margins. I was told that since I "only" had DCIS and had a BMX (bilateral mastectomy) there is very little chance of it ever cmoing back. I worry more about some of my other health issues and rarely if ever worry about breast cancer coming back.

DCIS

Thank you so much for responding.  This is all new to me and I guess I am just scared.

 

cinnamonsmile

Datsy said:

DCIS

Thank you so much for responding.  This is all new to me and I guess I am just scared.

 

I was scared too until  I

I was scared too until  I learned all about DCIS and asked my doctors lots of questions.

desertgirl947

Always good to ask to see

Always good to ask to see what others have to say, I have discovered.

I had two types.  The left side, the one with the most problems, was diagnosed as infiltrating lobular carcinoma; on the right, ductal carcinoma in situ.  The right side was just at the beginning stages, but I really did not want to have to keep an eye on that after what all I would have to do because of the left side.  So, I chose a double mastectomy.  I wanted to tackle this aggressively.

Because of the trouble on my left side, I ended up classified as IIIA (0 on the right).  I had chemo, and then I had radiation therapy (directed at the left side). 

I am now three years past from when I finished surgery and chemo.  I was about to start radiation therapy.  So far, so good.  I am on hormonal therapy, the 10-year plan.

disneyfan2008

I too had DCIS with

I too had DCIS with lumpecomty and radiation in 2008.

Lolitalynn

cinnamonsmile said:

I was scared too until  I

I was scared too until  I learned all about DCIS and asked my doctors lots of questions.

I was diagnosed with DCIS in May

I just had a bilateral mastectomy last week and am waiting to have reconstructive surgery. Being diagnosed with cancer of any kind is very scary of course.

Lolitalynn

I am new to this site and just had a bilateral mastectomy on August 20th after being diagnosed in May with DCIS.  I was hoping to get some information from anyone that has had reconstructive surgery after having this procedure done.  Can anyone share their experience with me on this subject?

Kkjmck724

disneyfan2008 said:

I too had DCIS with

I too had DCIS with lumpecomty and radiation in 2008.

How are you doing now?

How are you doing now?

jbnmayo

Lolitalynn said:

I am new to this site and just had a bilateral mastectomy on August 20th after being diagnosed in May with DCIS.  I was hoping to get some information from anyone that has had reconstructive surgery after having this procedure done.  Can anyone share their experience with me on this subject?

Hi,
I'm brand new here. I was

Hi,

I'm brand new here. I was diagnosed with DCIS in my left breast on 2/3/15. Stage 1 but had no cancer in. My lymph nodes. Lumpectomy in March did not have clear margins. Had a bilateral mastectomy in May. I had expanders put in and have been having them filled bi-weekly. My exchange surgery will be in 2 weeks. The fills for me have been ok. Not too painful. After my final fill, I'm more uncomfortable at night when I sleep. I feel like I have bricks attached to my chest. I'm hoping this goes away after the implants go in.

Have you started any fills yet? How are you doing with them?

Jeanne

Ace44

Dcis with mastectomy

I am curious what everyone's reason to have a bilateral mastectomy done with a dcis diagnosis. I am considering it because I have the ATM gene mutation and am scared it will come back. (Not recurrence but a second cancer)  My oncologist thinks this is a really aggressive thing to do since not much is known about the gene but I guess I am just sick of being scared all of the time. Wondered if that's why some others have done the mastectomy too and if they have ever regretted that decision. 

button2

My sister had this

My sister decided that getting a BMX was too aggressive (she tested negative for the BRCA gene). She got a lumpectomy and she will do mammos every 6 months to keep an eye on things. If anything new comes up, she would consider it. She is starting radiation next week. BMX is not necessarily better than lympectomy even though it seems many celebrities go that route these days.....

crselby

Ace44 said:

Dcis with mastectomy

I am curious what everyone's reason to have a bilateral mastectomy done with a dcis diagnosis. I am considering it because I have the ATM gene mutation and am scared it will come back. (Not recurrence but a second cancer)  My oncologist thinks this is a really aggressive thing to do since not much is known about the gene but I guess I am just sick of being scared all of the time. Wondered if that's why some others have done the mastectomy too and if they have ever regretted that decision. 

DCIS with lumpectomy

Hi Ace44.  I had a dx of DCIS in 2009; it was high grade and comedo architecture.  I had a lumpectomy with clear but not big margins  (probably the reason for my recurrence) and interstitial multicatheter brachytherapy irradiation.  That was followed by 1.5 years of Tamoxifen which I had to stop because of its affect on my uterus.  I had mammograms every 6 months for 5 years.  At year # 6 new calcification clusters were found and it was DCIS again.This time it was intermediate grade and comedo. I do NOT have the 2 BRCA genes or the 3 others that were checked for. I fought for and received a second lumpectomy and the surgeon tried to remove all the previously irradiated tissue (with immediate breast reduction by plastic surgeon).  The docs agreed to the second lumpectomy only if I agreed to having whole breast irradiation afterward.  After the surgery, the radiation oncologist was afraid I would have residual tissue that had already received radiation that would die if it was irradiated again and said I should have had a mastectomy (easy for him to say). That internal necrosis would leave a really nasty breast in many ways. So now I am considering skipping radiation altogether.  I have been reading studies on the subject.  I have asked for the Oncotype DX test to be done on the surgical specimen to see if my cancer has a high or low chance of recurring (again) determined by its genetic makeup.  Still waiting for the insurance to OK it and for the test to be done (this process has taken 6 weeks so far).   If the Oncotype DX score is low, I will not have radiation.  In my research I am finding plenty of evidence that DCIS is overtreated for many of us; it's just hard to tell whose DCIS is at risk of recurring and whose would not progress any further if NO treatment were done.  Having a mastectomy for DCIS is sometimes a personal preference to reduce the fear of it recurring or becoming invasive.  However, statistically, a lumpectomy and radiation is a treatment plan that is just as effective as a mastectomy in most cases (but not all).  You can find more information on this by asking your doctors.

~~Connie~~

Datsy

Ace44 said:

Dcis with mastectomy

I am curious what everyone's reason to have a bilateral mastectomy done with a dcis diagnosis. I am considering it because I have the ATM gene mutation and am scared it will come back. (Not recurrence but a second cancer)  My oncologist thinks this is a really aggressive thing to do since not much is known about the gene but I guess I am just sick of being scared all of the time. Wondered if that's why some others have done the mastectomy too and if they have ever regretted that decision. 

ACE44, I had a double

ACE44, I had a double mastectomy because my radiologist and my surgeon both recommended it.  i dont regret having the mastectomy at all.

Ace44

crselby said:

DCIS with lumpectomy

Hi Ace44.  I had a dx of DCIS in 2009; it was high grade and comedo architecture.  I had a lumpectomy with clear but not big margins  (probably the reason for my recurrence) and interstitial multicatheter brachytherapy irradiation.  That was followed by 1.5 years of Tamoxifen which I had to stop because of its affect on my uterus.  I had mammograms every 6 months for 5 years.  At year # 6 new calcification clusters were found and it was DCIS again.This time it was intermediate grade and comedo. I do NOT have the 2 BRCA genes or the 3 others that were checked for. I fought for and received a second lumpectomy and the surgeon tried to remove all the previously irradiated tissue (with immediate breast reduction by plastic surgeon).  The docs agreed to the second lumpectomy only if I agreed to having whole breast irradiation afterward.  After the surgery, the radiation oncologist was afraid I would have residual tissue that had already received radiation that would die if it was irradiated again and said I should have had a mastectomy (easy for him to say). That internal necrosis would leave a really nasty breast in many ways. So now I am considering skipping radiation altogether.  I have been reading studies on the subject.  I have asked for the Oncotype DX test to be done on the surgical specimen to see if my cancer has a high or low chance of recurring (again) determined by its genetic makeup.  Still waiting for the insurance to OK it and for the test to be done (this process has taken 6 weeks so far).   If the Oncotype DX score is low, I will not have radiation.  In my research I am finding plenty of evidence that DCIS is overtreated for many of us; it's just hard to tell whose DCIS is at risk of recurring and whose would not progress any further if NO treatment were done.  Having a mastectomy for DCIS is sometimes a personal preference to reduce the fear of it recurring or becoming invasive.  However, statistically, a lumpectomy and radiation is a treatment plan that is just as effective as a mastectomy in most cases (but not all).  You can find more information on this by asking your doctors.

~~Connie~~

Thank you for your response.

Thank you for your response. I appreciate you taking the time to explain your diagnosis to me. For me having the mastectomy is piece of mind that at this point seems invaluable. I also have a 5 year old daughter and never want her to see me go throught this again. I hope your Onco test score is low for you so that you not have to repeat radiation. I have also been reading the overtreatment of DCIS but I wonder if it's coming from people like me who just dont want to have to go through this again. If I didn't have the ATM gene mutuation I would have gone the route of radiation and Tamoxifin but I just can't risk it coming back either as DCIS or invasive.

Thank you again.

Ace44

Datsy said:

ACE44, I had a double

ACE44, I had a double mastectomy because my radiologist and my surgeon both recommended it.  i dont regret having the mastectomy at all.

Hi Datsy:

what type of reconstruction (if any) did you have?

Datsy

Ace44 said:

Hi Datsy:

what type of reconstruction (if any) did you have?

Ace44, I got tissue expanders

Ace44, I got tissue expanders during my mastectomy which was May 5. 2015.  I go back to the PS Sept. 28.  She said she would set the date for me to get silicone implants.  So hopefully I will get my implants sometime in October.

Ace44

time frame

That seems like a long time to go in and get the filliers Was there a reason it took so long? How mnay times a week did you go in? My PS said if I chose that option I would get filled about twice a week and that it probably would only take a couple of weeks...I am an A cup though and am not going any bigger. Could that be why?