DCIS

AnnFS · Guest

I have been diagnosed with non-invasive DCIS. I am thankful that I found it, .6 cm. However, I have many questions. The plan is another sugery to get the margins and radiation. Should I look to find an oncologist? What questions should I ask the radiologist? Will there be tests to make sure that there is no other cancer in my body? Thank you in advance for your help.

Ann

Tracey · Guest

Hi Ann,
I had extensive DCIS along with invasive ductal carcinoma (full blown cancer) and I had a mastectomy. Now a recent MRI suggests that I have DCIS in the other breast. You're lucky that you have just DCIS because that means you won't be prescribed chemo. Basically, DCIS is a pre-cancer, not cancer, but since it sometimes turns into cancer it is always taken out. I'm hoping I have just DCIS, because with my first breast, thats what they thought it was but the biopsy turned up invasive cells. Have you had a biopsy yet?
Tracey

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Ann,

I think it's a good idea for you to see a medical ongologist. Your surgeon's office should be able to set this up for you. Bring a list of questions with you. It's also a good idea to bring a person you trust with you to the appointment as it provides an extra set of ears. There is a LOT of information to assimilate.

I was diagnosed with invasive ductal and the only tests ordered for me were blood work, chest x-ray and bone scan. If yours if non-invasive I don't know it they would order a bone scan. Maybe Dr. Leo could answer that for you.

Sorry you have BC, but that's really good news that it's found early, small and contained.

An excellent book: "Dr. Susan Love's Breast Book" If you don't want to buy it, the library should have a copy. She answers just about every question you could think of.

Good luck and take care.

Hugs,

Margie

AnnFS · Guest

Thank you for talking with me a bit on this. I have had the tumor itself removed. We just need to go back in to extend the margin area. I do hope that all goes well for you two (Margie and Tracey). As you well know, it's the NOT KNOWING what comes next or if everything is as the Dr. says, that causes the emotional upheaval.

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello !

Well, as you know ductal carcinoma is situ means really a very localized cancer. The treatment is controversial, but most people opt for breast conserving treatment. Adjuvant radiation is a hot topic, and individual oncologists have differing opinions, and a very individualized approach should be taken. One opinion is that if clear margins > 10 mm are obtained RT should be optional, but again, that is one opinion in the literature.

If there are no other breast lesions, staging may be unnecessary, since it is such a localized tumor, but your doctor might want to do it.

Good luck !
Leo
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Disclaimer: this information is for informational purposes only. It is not medical advice.

AnnFS · Guest

Thank you all for responding. And, thank you Leo for this site. What did you mean by "staging may not be necessary"?

seeknpeace · Guest

The reference that implies that dcis is not cancer is not correct. While some resources will still say "pre-cancer", it is widely recognized that dcis is cancer. It is not invasive, but, nonetheless, it is cancer. There is little known about dcis. But, my comedo subtype, high nuc grade 3, with extensive necrosis, 2.5 cm in size, was cancer. Not pre. The reference as pre just bothers me. It somehow belittles or makes a person with dcis feel like they should not be concerned. I just am offended by that.

CeeCee · Guest

[quote="seeknpeace"]The reference that implies that dcis is not cancer is not correct. While some resources will still say "pre-cancer", it is widely recognized that dcis is cancer. It is not invasive, but, nonetheless, it is cancer. There is little known about dcis. But, my comedo subtype, high nuc grade 3, with extensive necrosis, 2.5 cm in size, was cancer. Not pre. The reference as pre just bothers me. It somehow belittles or makes a person with dcis feel like they should not be concerned. I just am offended by that.[/quote]
Thank You for saying what I am thinking. When I had DCIS, I asked the surgeon why I wasn't getting tamoxafin, and she said "oh you aren't even a candidate for that--I don't know why you are so worried, your cancer was so early, it almost is not a cancer"
She never explained further.
My dcis was aggresive, comedo hi grade 1 cm. I had a lumpectomy and 25 rads treatments.
It is now 5 yrs 9 months later, and I just did sterotactic core biopsy for microcalcifications on the same sight as the first one was, or very close to it. I am waiting for results!
I am really upset that I was treated so blatently, after all, Cancer is Cancer!
CeeCee

lvsysme · Guest

I too had DCIS > 5cm - ER/PR -, Her2 3+, comedo type, high grade, DCIS microinvasive, and when the pathology report came back from surgery they also found LCIS ----- thankfully negative nodes. I had opted for a bilateral because my mother had breast cancer and I had a biopsy in the other breast 3 years ago (thankfully it was benign)

When my daughter and I were first talking with the surgeon he said no radiation but definitly chemo. Then when I opted for the bilateral it ended up that I needed neither. My oncologist said she would have prescribed Tamoxifin if I was ER/PR + but she felt the risk/benefit of prescribing Herceptin or another chemo was not worth the risk.

I wish you luck. This is definitly not a "club" that anyone of us ever wanted to join. It is wonderful to have websites such as this one (thank you Leo). You will learn a lot and what ever you do - write your questions down to take to the doctors with you. If at all possible - take someone with you to your doctor visits. At the encouragement of a book i bought called Idiots guide to surviving breast cancer I started a file. I have all of my ammmography and pathology reports (be sure to ask for them), my notes from questions and answers, and I have all of those dreaded insurance forms/paperwork all in one place.

Be good to yourself Smile

Let people surround you with love --- you Deserve it!!

wayover20 · Guest

DCIS not cancer.....is that like "just a little bit pregnant?" Yea right. Thank God we're getting it taken care of!

ceegee · New User Joined: 21 Oct 2004 Posts: 8

Hi Ann,

I also was diagnosed with DCIS. I didn't have a palable lump just microcalcifications. I had the stereotypic needle biopsy and then a wide tissue excision which indicated clear margins. I am very greatful that it was caught early. I had radiation and am on Tamoxifen for five years.

I wanted to post in regards to your question about an oncologist. I originally didn't get one because I didn't have chemo. My surgeon recommended one, but since I would be going to the radiologist-oncologist every six months I didn't feel I needed another doctor in the mix. However I did start having bleeding problems which my gynocologist thought might be tamoxifin related so now I am going to a medical oncologist.

The radiologist and the oncologist schedule their appts so I am seen once every three months. The rad orders mammograms and the oncologist orders blood work and chest x-rays. I am not fond of all the drs appts I have to go to but it does give me peace of mind knowing that I am checked so often.

Good luck with your treatments.

seeknpeace · Guest

The way that I understand it is that the oncologist is the captain of your cancer health care. They are the decision makers, they are the quarterbacks, if you will.

As I said before, I had aggressive dcis, and bilateral mastectomy with tram flap reconstruct in Feb of this year. Right now, I am terrified because I have unbearable right shoulder pain, that is in the spine, the entire right shoulder blade and my right arm. I went to the emergency room on Friday and they have referred me back to my oncologist for an MRI to rule out metastasis. I have asked about the possibility of metastasis in my type of situation but, Dr. Leo has not responded yet.

So, yes, cancer is cancer.

Peggy · Guest

Ann: I also have non-invasive DCIS. First general surgeon I saw was going to take a specimen size of tangerine. I had microcalcifications. I then went to a specialist and had lumpectomy for these. One edge was not clear so I just had my second surgery and am waiting for results of it. I am hoping not to have tamoxifen because I have rheumatoid arthritis and take several meds for this including injections of enbrel and fosamax for osteoporosis brought on by prednisone use. I also fear I will not be able to take the radiation as I get so tired now and I hear it really lays you out. I would also have to drive 45 mi. each way for treatments. I am anxious to hear how your treatments, etc. turn out.

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

I must apologize for my mistake. I wrote "staging may not be necessary", as opposed to axillary dissection. I don't know what I was thinking. All the posters above are absolutely right about DCIS. The only difference is that cancer cells have become invasive, however there is still a chance of metastasis, even though it is small.

Thanks for all your comments.

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

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