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New Diagnosis - Help

samari
Posts: 12
Joined: Mar 2002

I have just been diagnosed with ductal carcinoma in situ. This is all new and I am now considering my options. Has anyone else had this diagnosis? Any advise? I am afraid and want to make an informed decision - thanks.

blackbandana
Posts: 65
Joined: Apr 2001

I was first diagnosed with DCIS. I had no lump nothing, was caught on baseline mammo, but when they did the biopsy it had extended my margins. I did a lot of reading and research myself, but decided that a mastectomy was right for me after the recommendations of my doctors. I was very lucky I did, my cancer was growing behind my breast and I was node positive. Its to long a story to write now, but I would recommend you read as much as possible... I found this really interesting article in time magazine. http://www.time.com/time/covers/1101020218/story.html
If you can not access it from here, go to www.time.com and click on health and select the story on "Rethinking Breast Cancer" its a very good read. I wish you the best and hope you will post often and keep us updated. This is a wonderful site and we are your friends, don't hesitate to ask any questions, no matter how stupid you may think it is... we have already asked them .... take care

ktinkey
Posts: 173
Joined: Mar 2001

Hi Samari,

Welcome to the site. I was diagnosed with carcinoma in situ in 1990. I had two lumps, but no node involvement. Because of the size of the lumps, I had a modified radical mastectomy at age 35. Talk with your doctor and ask any questions you can think of. You can even get a second opinion. Your doctor knows your situation. We are here for you and feel free to ask anything. We can't give you medical advice, but we can hold your hand and tell you what we've experienced. And believe you me, that helps. Just knowing that there are thousands of us out here, who have already experienced what you are going through, and are still here to give advice, is priceless.

Keep your chin up and don't let the doctors imtimidate you. Ask and ask and ask again. It is your body, not theirs.

God Bless,
Kathy

comom
Posts: 46
Joined: Dec 2001

I was diagnosed with DCIS and LCIS last Sept 2001. After two lumpectomies, in an attempt to get clean margins, I opted for a double mastectomy with immediate reconstruction. I was 37 years old at the time. Since I have two small children, I opted for the treatment that would give me the best cure rate. Had I not opted for the mastectomy and tried again for clean margins and moved on to radiation, the doc's gave me a greater than 50 % chance of developing breast cancer again in my lifetime. I have almost completed the reconstruction and feel great. I have no regrets about my decision to have both breasts removed. You have some difficult decisions to make. The good news is with DCIS, you do have a little time. My oncologist gave me 4 weeks to get my decisions made. I interviewed several surgeons, both general and plastic. I sought out the opinions of friends and family in the medical profession. I treated every appt with a new doctor like a job interview. I went to appts armed with a list of questions, I compared the answers between the doctors. If a doctor was not willing to answer my questions (which did happen) I moved on immediately. Remember - you are in charge. I also consulted with my regular gynocologist for advice. My best advice is listen carefully to your gut instincts and you won't go wrong.

I also cried alot. I decided early on that I was not going to put up a brave front or mask my emotions. I let them run their course. Everyone was ok with this except my Mom. She was convinced I was headed for the looney bin. I feel I am much healthier now because I allowed myself to feel anger, grief, fear etc..
Well I guess that is enough rambling. Please let me know if I can help in any way. I still have my lists of questions if you need a place to start.
God bless and good luck.
Trina

psmitty
Posts: 2
Joined: Mar 2002

Helo Trina,
I just got diagnosed with I think what is similar to what you have. My cancer is due to radiation I had 20 years ago for non-hodgkins lymphoma. I think I have Ductal Carcinoma Insitu and phyllodeos tumor too. I'm still a little num.

comom
Posts: 46
Joined: Dec 2001

Hang in there! Let me know if you have any questions. I read this site at least two or three times a week. It is a comforting place to visit :)
Trina

cruf
Posts: 931
Joined: Oct 2000

Hi Samari! Welcome! I was diag. with DCIS in July of 2000. I had a lumpectomy then a mastectomy with immed. Tram flap reconstruction.Didn't need radiation because I had the mastectomy. I am willing to answer any questions you may have. You can write here or e-mail me at RPT1206@aol.com. Good luck! Keep us informed about your decisions and progress. HUGS!! Cathy

maud
Posts: 183
Joined: Nov 2001

Hi Samari,
Welcome to this site it is truly a blessing to be able to share with others who understand just what you are going through.I was diagnosed in May 2000 with Infiltrating Ductal Carcinoma and DCIS.After much prayer and discussion with all my DRs. and my famliy and my Pastor I decided to have a lumpectomy and radiation. It turned out 4 lymphnodes were cancerous and there wasn't a clear margin so they went back to take more tissue and found the second cancer then I was advised that I needed to have a mastectomy followed by chemo.Ask questions as many as you need to help you make a decision it is your body.If you feel you want another opinion then that is your choice.I talked it over with all three of my Drs. and it really did help. We are all here for you and every question you have is important. I will be praying for you. Keep us posted.
God Bless
Debbie

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

Most breast cancers start in the ducts. some doctors dispute that ductal carcinoma in situ is actually cancer, but just may become cancer, while others says it is cancer that has not yet moved out of the ducts, ie is not yet invasive into other tissue, and may not ever be! Before mammograms and ultrasounds ductal carcinoma in situ was never even diagnosed, because it couldnt be seen. So the theory is that many women lived out their lives with this condition and it never progressed to anything worse, or did it? that's the trouble....no one can predict for sure whether ductal carcinoma in situ progresses. Ask your doctors lots of questions...find out if they know what the latest research shows, gather your own information from the net and you will soon feel in command of the situation and able to make your choices. Personally, I determined that my doctors knew what they were talking about, then I let them decide ( my cancer was lobular and invasive) on the best treatment once I was sure I had confidence in them. I am lucky..I am in Canada so my doctors could just decide what was best for me without any price or insurance considerations and without having to worry about how who got paid for what. Best of luck to you...you will find that the more informed you become the less fearful you become, so best of luck in your search for information. Lets us know what you and your docs decide...Susan

shirlann
Posts: 235
Joined: Oct 2001

Hi, my information on this is that you have GOOD NEWS. You will probably just need a lumpectomy, which is nothing, and be watched. If you can, get Dr. Susan's Love's Breast Book and you will have a lot of questions answered. She set up the BC Clinic at UCLA. Remember, it takes up to 12 years to detect a breast cancer, so don't feel rushed into quick decisions. Take your time and become informed. God bless you, SHirlann

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