Very nervous -how fast does it grow?

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4caseygirl
4caseygirl Member Posts: 18
edited November 2016 in DCIS (Ductal Carcinoma In Situ)

How fast does high grdae DCIS grow, should I push for another mammo or MRI. I was diagnosed with DCIs May 30, both breasts.  One in the left breast, dcis, micropapillary and solid, grade 2-3 with comedo-necrosis present, no invasion present -Right breast two spots-dcis cribiform, nuclear grade 2, comedo-necrosis absent no invasion present, third spot shows atypia cells-close to chest wall. I have tested negative for the BRCA1 and 2 gene.  I am 40 years old. These results were based on steriotactic biopsies, I have not had any surgical biopsies(lumpectomies).I should be having surgery in three weeks, it will be close to four months from time of diagnosis.  I'm starting to get nevous that too much time has passed and the cancer has spread.

 I'm not doing well with this at all, its my fault that so much time has passed.  I wish I had them do lumpectomies right in the beginning but it appeared that I needed to know right there and then what I wanted my course of treatment to consist of.

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  • ro-berta
    ro-berta Member Posts: 134
    edited August 2012

    4caseygirl sorry to see you here but there is a wealth of info and support from all the women here. First of all and probebly the hardest don,t blame yourself you need to be kind to yourself! I can only relate to you my experiences, my dx. is pretty much same as your but i had microinvasion( discovered from path report) As for time, i had to wait for about3-4mths due to economics  I am not a Dr. but DciS is treatable It will get easier especially when you get treatment plan into place and it gets started, things will then start moving quite quickly! So take a deep breath, be kind and gentle to yourself. I just am in the process of finishing my radiation treatment and I am O.K! Like I said before there is a wealth of info on this site also keep posting it helps you you will meet some very fine ladies. take care

                roberta

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  • SJW1
    SJW1 Member Posts: 244
    edited August 2012

    4caseygirl,

    Nothing in anything you said indicated that you have any invasive cancer. Even high grade DCIS does not have the biological capability of spreading throughout the body. So it is ok that you aren't having surgery until about 4 months after diagnosis. I waited 6 months. 

    Hope your surgery goes well.

    Hugs,

    Sandie

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  • 4caseygirl
    4caseygirl Member Posts: 18
    edited August 2012

    Thank you Sandy-

    I work at a hospital, a non clinical area, at times I see some of my care providers or others that know of my health situation. They have made me very nervous that I have taken this long to move forward with treatment. 

     I just wasn't sure based on my pathology that when they say fast growing haw fast fast was.

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  • Racer19
    Racer19 Member Posts: 2
    edited August 2012

    4caseygirl,

    They found my DCIS at my first mamogram in my life in Dec 2011.  Since they did not have a background xray, they asked me to come back in 6 months.  I was probably in denial and had a sick parent so I did not return for a followup for 7 months.  They indicated I needed a biopsy and it came back as grade 3 comedotype ER+/PR+.

    I just had my surgery last week so basically it ended up being 8 months before I got started down the path to treatment.  At the time of surgery the DCIS was still a small area only 2 spots with 2mm foci.  So only a slight change from original December finding.  My margins were clear.  The smallest clean border was 0.4cm.  Under the microscope is was still within the ducts so non-invasive so they did not take a lymphnode, and indicated I would not need additional surgery and could be treated with tomoxifen and radiation for sucessful management.  Not sure if that's what I really want but am going to call next week to get everything lined up to move forward with it.

    So even though it took me up to 8 months to get things started, things have worked out.  I know my case is not the same as yours.  Keep moving forward and get second opinions when ever you don't feel comfortable or your questions aren't getting answered. 

    Best wishes to you. 

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  • 4caseygirl
    4caseygirl Member Posts: 18
    edited August 2012

    Racer19-

    I'm glad everything is going well for you, if gives me hope that maybe my DCIS have not progressed.

    They found mine on the first mamogram as well, go figure.

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  • KellieDenise66
    KellieDenise66 Member Posts: 122
    edited August 2012

    Dear 4caseygirl,



    I'm sorry you're going through all this! I know it's frightening, I'm in the same boat. The waiting is killing me. I also have pain in my under arm on the same breast as the DCIS which keeps me up at night. My doctor keeps reassuring me that it's most likely an aggravated lymph node from my three biopsies. So naturally my mind is going crazy with fear that she's wrong and its something worse. I have a bit of a complex medical history so I've decided on a BMX which is scheduled for the end of September. Feels like an eternity away!



    So I'll tell you what I keep telling myself, stay calm, keeping moving forward and try not to let all this fear paralyze us. Easier said than done right?! Please keep us posted on how you're doing. Before we know it we'll both be on the other side of this!

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  • 4caseygirl
    4caseygirl Member Posts: 18
    edited September 2012

    Hi Denise-

    My BMX is scheduled for September 18, I'm trying to stay positive but just like you I have pains in my body that I can't explain.  My lastest symtom is the feeling of a lump in my throat.  I go for my pre-surgery physical this Tuesday, I hope there is nothing else going on.  Its funny how 3 months ago before the doctor told me I had cancer I felt perfectly healthy.

    Whats your surgical date?

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  • KellieDenise66
    KellieDenise66 Member Posts: 122
    edited September 2012

    Hi 4caseygirl,



    I'm scheduled for September 27th. So looks like I'll be following closely behind ya. Until then I'm going to try and stay busy. My children are 8 & 11 so there's always something to do. It's the night hours when the anxiety really creeps in. My doctor wrote me a prescription for Ativan to get me through the next few weeks.



    I purchased a special tank top for after surgery. It has little internal pockets that Velcro on and hold the drains. It also has breast pads that slip in the cup area. Have you seen them? I was told my insurance would cover 2 of them. It was a little rough trying it on, that's when it really sunk in that this is actually happening. Although I must say the design is pretty ingenious.



    If we aren't able to speak before your surgery I just want to wish you the very best! Please take the advice of these other sweet ladies and be kind to yourself. Let us all know how you're healing.



    ~denise66

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  • Mkelley30
    Mkelley30 Member Posts: 4
    edited September 2012

    Hi, I know you're nervous, but DCIS grows slowly and a few months to line things up is not unusual. I'm recovering from skin sparing M with immediate reconstruction and while it's all been exhausting, I'm really glad it's over and I look great. My first time was at 40, like you, but I had Pagets disease on the rt breast. Also slow growing and non-invasive. Wish I had known I'd get the DCIS in the left breast 22 years later. I would have had a BMX to start with. You'll be fine, and in a few months it will all be behind you. Good luck!

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  • Red11228
    Red11228 Member Posts: 7
    edited March 2016

    Hello. I was diagnosed with DCIS High Grade Solid Flat Necrosis, 1.024 inch with clear margins on right breast on Oct 28. 11 years ago diagnosed with LCIS and 10 years ago diagnosed with Atypical Ductal Hyperplasia. BRACA negative. Grandmother died at 42 of breast cancer. Mother diagnosed DCIS high at 73. Sister being watched for suspicious cellular changes. I have went back and forth on this decision. Canceled a bilateral mastectomy with reconstruction surgery and then went with a second opinion for a lumpectomy with radiation of 16 weeks and bailed out on that because I didn't like the the stats of recurrences and type of recurrence that could happen - invasive. I had the lumpectomy but no radiation. I absolutely dragged my feet in a situation like this because I didn't know what questions to ask and the doctors are not prepared for this. They are really use to invasive breast cancer situations where things have to be done quickly and questions asked later. I am now back to getting the bilateral mastectomy with reconstruction done. The date is set. Do I know if it is the right decision? No,I don't. All I know is I do not want invasive cancer - chemotherapy - radiation and/or take any estrogen blocker medications if I don't have to. I have read a lot in the few months and spoke a lot to the doctors which for some annoyed them. My feeling on that is too bad! I am very well aware of some of the social challenges that I will face such as dating - no less dating New York men. Ugh!! The thing that really really bothered me is I couldn't get an answer on how fast the DCIS high grade grows back. I figured getting the lumpectomy wd
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  • Red11228
    Red11228 Member Posts: 7
    edited March 2016

    Hello. I was diagnosed with DCIS High Grade Solid Flat Necrosis, 1.024 inch with clear margins on right breast on Oct 28. 11 years ago diagnosed with LCIS (left breast) and 10 years ago diagnosed with Atypical Ductal Hyperplasia(left breast).BRCA negative. Grandmother died at 42 of breast cancer. Mother diagnosed DCIS high at 73. Sister being watched for suspicious cellular changes. I have went back and forth on this decision. Canceled a bilateral mastectomy with reconstruction surgery and then went with a second opinion for a lumpectomy with radiation of 16 weeks and bailed out on that because I didn't like the the stats of recurrences and type of recurrence that could happen - invasive. I had the lumpectomy but no radiation. I absolutely dragged my feet in a situation like this because I didn't know what questions to ask and the doctors are not prepared for this. They are really use to invasive breast cancer situations where things have to be done quickly and questions asked later. I am now back to getting the bilateral mastectomy with reconstruction done. The date is set. Do I know if it is the right decision? No,I don't. All I know is I do not want invasive cancer - chemotherapy - radiation and/or take any estrogen blocker medications if I don't have to. I have read a lot in the few months and spoke a lot to the doctors which for some annoyed them. My feeling on that is too bad! I am very well aware of some of the social challenges that I will face such as dating - no less dating New York men. Ugh!! The thing that really really bothered me is I couldn't get an answer on how fast the DCIS high grade grows back. I figured getting the lumpectomy would give me some time to decide radiation or bilater / reconstruction? All the pressure to decide like now was overwhelming. I didn't even know there was a time limited on when you should get radiation after the lumpectomy where radiation would no longer be useful. This was not share right away. Doctors still seem to function as their word is final. Consumers are much more educated and acquisitive these days and doctors need to be prepared at least with the standard FAQs for the particular diagnosis at hand. Besides these are enormous life altering decisions.Please share your comments. Thank you.

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  • bardwella
    bardwella Member Posts: 1
    edited November 2016

    Did you have surgery? In September? How are you?

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2016

    Hi bardwella, welcome to Breastcancer.org. Members here don't post since months ago, so you may want to reach them via private message. For that, you'll have to click on the member's username, and then click on Send member a Private Message. Let us know if you need help with this or any other question, we're here for you!

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