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DCIS

Fighting4Popi2
Posts: 25
Joined: Dec 2011

Okay so today is the start of bump in the road.

I am not happy with how things were handled but it is what it is and I choose to make this as positive as possible.

I cried, my husband is a rock and very loving...

I have some questions??

What do I ask the surgeon today? How do I know if he is good?

What should I tell my children and when? (16,13,and 9) all boys...

Thoughts on lumpectomy vs mastectomy?

Thanks to you all..

Lynn

roseann4
Posts: 994
Joined: Sep 2009

I'm 4 years out but I remember how scarey it is to have all these decisions to make. My surgeon gave me information and her opinion on what type of surgery. You want to know whatever the biopsy revealed about the tumor. He/she won't know everything until they check the lymph nodes and fully examine the tumor. She recommended breast conserving surgery. That's more than a lumpectomy but leaves the breast ....just smaller and perkier. Lol. If the nodes are clear, they will recommend an OncoType DX test to look at many different features of the tumor to decide if chemo makes sence in your case. If the nodes show traces of bc, then they will most likely recommend chemo. If you like the surgeon, as for a recommendation to an oncologist. They know who's good. My treatments included radiation (no chemo)and Arimedex which I will take for at least one more year. So far so good!

This site has lots of great information. Don't go alone to your appointments. Too much to remember. Hugs!

Roseann

disneyfan2008
Posts: 5385
Joined: Oct 2010

make a list (written) since ONce you get it there all meshes together and may forget or get off the beaten path with another question. I am LIST maker for everything..

I have to see surgeon next Wed..I have to start my list as they pop in my head...

i'll check back

Denise

cinnamonsmile
Posts: 1049
Joined: Dec 2010

cancer.org has a list of prewritten questions you could consider asking your surgeon/doctor... http://www.cancer.org/acs/groups/cid/documents/webcontent/003284-pdf.pdf.
It also gives basic information about breast cancer at http://www.cancer.org/cancer/breastcancer/index.

You should be getting information from your doctors about your DCIS. Have them sit down and explain your pathology report (and get a copy of it) so you can make an informed decision about your type of DCIS.

You can also call the American Cancer Society at 1-800-227-2345. I called there after my treatments were done , and so wished I had called right away.

Breastcancer.org also has some good info on the basics of breast cancer and has pictures explaining how the cells morph into cancer at http://www.cancer.org/cancer/breastcancer/index. That will start you out at the beginning.

If you have pure DCIS and no invasion of cancer into the breast tissue outside the mild ducts, you will not need chemo. I know when I heard that I had cancer, I was thinking I would need chemo, but it is not standard treatment for DCIS.

Talk to your breast surgeon and an oncologist, I found that the two I had had different views on my treatment.

Lynn Smith
Posts: 1265
Joined: Mar 2011

I was dx with DCIS non invasive.No nodes involved.Tumor was very small(1/2 centimeter).No chemo or radiation but I have been on tamoxifin for almost 3 years.2 Surgeries(second surgery was to check margins) were in Aug 2009.Visits with my oncologist after that. I have a annual mammogram January 2013. So I'm back to every year for mammos.

I've had a few scares.One was a false alarm the other a fibroid tumor was found.It is being watched to make sure it doesn't grow.

My doctor knew more after the biopsy and he went over the report.Suggested a a lumpectomy. What is usually done with non invasive DCIS. But he always told me "Everyone is different".
That stays with me but just knowing it was non invasive made me feel better.I have friends who had invasive cancer and Stage 3.They are doing fine.One is a 18 year survivor the other going on 8 years. One had node involvement, the other had a fast growing cancer and node involvement. Both had lumpectomies and doing fine.

I'm counting the days to be off tamoxifin.Just over 2 years left. My friend who had cancer took tamox and something else for 5 years. Nothing has been mentioned to me about another pill I will need to take.

Lynn Smith

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

Hi Lynn, I am sorry to hear that you have to make such serious decisions. My advice is: follow you instincts. I was diagnosed with DCIS last year and after many twists and turns, I ended up going for a bilateral mastectomy, with reconstruction. I knew I had problems when the radiologist showed me my mammogram, the DCIS was easily seen indicated by small white dots. They were throughout one breast, but absent in the other. Considering that I am younger, age 42, I wanted both sides done. (the pathology showed no cancer was found in the other breast).
We are all different, you may or may not want to go the drastic route. I preferred major surgery to chemo, radiation, tamoxifen, and luckily, I was able to get out without any of those additional treatments. Breast cancer is so pervasive in our world, chances are that your surgeon is good just because he has been busy. You could ask how many years he has been practicing in the field? If you are not comfortable with your surgeon, look into another. They don't have great beside manner sometimes, but don't let that sway you. Know that you will get quality medical care as you have already begun that process by reaching out to this website.
Regarding telling your family, I have no kids but my nieces and nephews have been very resilient. You may feel different, but they see you as the same. I think you can take some time to get the facts straight if you are uncertain as to what to say to them.
Glad you husband is there for you. Although this a hard time, it is good to detect this early.
Take care and keep the faith.
Annie

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