Newly Diagnosed with DCIS

Hello, Dink,

I too have just been diagnosed with DCIS on October 8.  I had a left modified radical mascectomy on the 25th.  I understand your anger and confusion at this point with wanting more answers.  After the surgeon called and told me the biopsy was positive for cancer, told me that I needed a masectomy because of where the cancer was at next to my nipple that a lumpectomy would not be advisable.  My husband was skeptical but me wanting to just get rid of the cancer no matter what, where or how just said let's get it done.  During the wait of my surgery my mind got to wondering, am I making the right decision.  They haven't given me any information, any resources nothing except for you have breast cancer and your breast needs to come off and we don't know how much or if chemo is needed.  I started to get angry.  So I started going on the computer looking up my cancer Ductal Carcinoma.  What it was, and how it got there.  I know now that I have been having it since 1998.  That was when I had my first mamo and another in 2001 for the same lump.  But nothing was said and done about it.  I began getting angry about that too.  Just a whole lot of different emotions.  It's like I am sort of outside of myself.  Not soking it all in yet.  Yeah now my boob is gone the tape is all off and now I see what is left.  Out of 24 lymph nodes taken out only three tested positive for cancer.  Also after taking off my breast they found that there was more cancer found in other parts of it.  So the decision to get the mascectomy was a good one. I still can't believe this is happening.  I start chemo on the 28th of this month.  I have four months followed by 5 years of hormone therapy.  The most thing I am afraid of is loosing my hair. But at this point I am just praising and Thanking my God, my healer that I still have breath and just thanking him every day that my children still have a mom and that my husband still is here and loves me no matter what it looks like and what I have to go through.  After all he was the first to see them when we were 14 years old and he was the last to see it at 38.  I just had a birthday on October 17.  What a gift of life.  So I guess I said all of that to say this.  Don't stop asking questions get a second opinion if you need too.  It is your body do what is right for you.  And pray and let God lead you in your decisions.  I am blessed to have a wonderful support system here for me but most of all God.  Lean not to your own understanding.  Have faith and confidence that he will see you through.  Pray for me and I will pray for you.  Take care

Sparker38

Dink,

DCIS is non-invasive cancer.  It has to be removed from your breast, but if it's all removed, there is no possibility of invasion to your lymph nodes or beyond.  That's how DCIS differs from other breast cancer and that's why it's important to distinguish DCIS treatment from treatment other women have for breast cancer that is invasive.

The most important thing with DCIS is ensuring that all of the affected breast tissue is removed.  For smaller, less aggressive cases of DCIS, a lumpectomy with wide margins, sometimes followed by radiation, is the normal standard of treatment. Often Tamoxifen will also be prescribed to further reduce recurrence risk. For larger areas of DCIS, particularly if the DCIS is more aggressive, a mastectomy might be necessary.  Those who have a mastectomy usually don't need either radiation or Tamoxifen.  Someone who has DCIS only does not require chemo under any circumstances.

I don't know what your pathology was - how large your area of DCIS was and what grade it was - but based on your doctor's comments, it sounds as though you had a smaller amount of DCIS.  If this is true, then a lumpectomy is the normal treatment.  Some women with smaller amounts of DCIS do choose to have mastectomies and sometimes, bilateral mastectomies. Unless the woman is particularly high risk (BRCA gene, LCIS, very strong family history, etc...), usually this isn't a medical decision as much as a decision based on a desire to never have to deal with breast cancer again (although having a mastectomy doesn't completely guarantee this) and sometimes, a desire to avoid radiation and Tamoxifen.   There is no wrong answer; it's a question of which approach you can live most comfortably with both in the short term as you are dealing with the surgery, treatment and post-treatment issues, and into the future.

Hi dink,

I had a lumpectomy on Sept. 4 and my post-op meeting with the onc. on Sept 27, where he and members the radiology dept. explained what would happen next.  I'm borderline estrogen receptive, so the onc went back and forth with the tamoxifen question, and finally decided that I should take it.  He then made it clear at that point (in a nice way, but...) that he was finished with me when his assistant wrote up the prescription, and I was now in the hands of the rads folks.   

It kind of makes you feel lost, doesn't it?  That was the time I thought, "If I just got rid of both breasts right now, I'll never have to go through this again."  I've calmed down since then, but I still get wound up from time to time and wonder what my last rads treatment will be like.  I don't expect a champagne send-off or anything, but I'd like to know that someone has put some serious thought into my case before I get filed away in the computer.

Good luck to you, dink.  I'm a third of the way through the rads (number 14 today!) , so I'm about two weeks ahead of you in the treatment.  So far, so good--a little rosy, a little swollen, but no pain!

Take care,

Lisa

hi, dink.

I wish I could tell you.  I'm in the same boat as you, except I was referred to a med onc.  He is not a fan of tamoxifen (he didn't prescribe it for his mother), but knows it has its place. I don't know what to do. There are other oncs in the practice, but no women.  My mom loved her onc, but I think he sees only more advanced-stage patients. 

Can they really say it won't come back?  My husband figured if I did rads, I wouldn't do tamox. I'm looking at it from the standpoint of not just recurrence, but the possible prevention of a new primary.

I see the rad onc for a follow-up at the end of the month & the surgeon in March w/mammo. My other doc is an internist; never have seen a regular ob/gyn, so I'm just a big, confused mess.

Anyway.  On the hormone therapy topic, there's a few things going on whether or not on tamox, including one called 'tamoxifen talk' (? or something like that) that may shed more light.

Yours in confusion

Pam

Hi Dink, I was in the same boat as you. Did your surgeon do a breast ultrasound? I found a lump during radation and completely lost it. I only had a lumpectomy done. My surgeon told me that the breast tissue is very burnt inside as he puts it. I had double radation so my breast was very red and swollen and still is post 6 months tx.

I did have a mamo done in Oct. after 3 months as a baseline and will have my 6 month done in April. Did you have lymps removed during surgery? Was your tumor ER+?

Going to a med onc is only if you are going to take meds like tamox.

But it would not hurt to get a second opinion form one.

 Hug to you

Blackjack

Dink , Glad to hear that the aspiration fluid came back ca free..good news!!. I know that the waiting part is the hardest. Glad to here things are better for you.

My thoughts are with you. Keep posting and let me know how you are doing..FYI I call my niece Dink too..Her real name is Delora.

How funny is that !

Take care,

Blackjack

Dink, How cute is that...what a special kick name for you from your dad!! Hope you are feeling better and things are going good for you now.

Take care,

Blackjack

Dink, I go to church with a woman who has an unusual nickname as well given to her by her dad. It is Punk.

I hope that you are doing well and good luck on your next appointment.

Sheila

I was diagnosed with DCIS on Dec 18th.  I had to wait for my MRI due to my delay in menstrual cycle.  I had a lumpectomy on both areas last Monday - Jan 28th

I am recovering from that.  I go for my post-op tomorrow and possibly start radiation.  I am reading this site to help me make me decision about radiation and tamox.  My Mom, my sister and two aunts on my dad's side had breast cancer. 

It is good to find people that can relate to how I am feeling, which is very emotional.  Very grateful that it was caught early, but scared.

Thanks

Carol

I had my first mammogram last June, and by Jan 29 I had a lumpectomy in my left breast because of a large area of scattered microcalcifications that looked suspicious. The resulting path report said "DCIS comedo necrosis." However, the actual tumor they found was very small - 1 mm, but the closest margin was 7 mm.

I have been to 3 surgeons and an oncologist for consulations to figure out what to do. My next step is a bilateral MRI, but then after that, the question is do I have double mascectomies or radiation, and then possibly tamoxifin. It's all so confusing, and I feel kind of in shock. Two months ago, I knew nothing about breast cancer. Now I'm faced with incredibly difficult decisions and medical issues. And advice would be welcome.

Blackjack, Was your DX very small that you did not opt for meds? I had a lumpectomy last month and am waiting for thr onco type score to see if I need the chemo. At first they were leaning towards Rad, but they want to make sure. Then it's Rads, the meds. I really have been weighing this in my mind.

Artsee

Blackjack, I do respect your judgment on the meds. I agree, who wants to ruin your QOL.I feel great, haven't had a hot flash in 5 years, went into menopause at 47. So where the heck does the estrogen come from???? I'm ER+ so it's feeding on it someplace. I don't do much dairy, no soy....

Artsee

p.s. Does your heart skip a beat every 6 months? I know mine will.