Just Diagnosed

Jaebon · January 2012

Hello,

I am new to this forum. I was just diagonsed today with breast cancer. I am 37 years old and have been dealing with breast issues since the age of 19. I have been told that I have very dense breast and that I have fibro cystic breast tissues. I have had 3 surgeries to remove cyst. Last year I had a biopsy done on the left breast for a fibroadenoma which came back negative. So I have dealt with either cyst or breast lumps for awhile now. In 2010 I had a mammogram and was told that they saw some calcfications that they seem concerned about. I had a follow up mammo and was told that all was well and follow up in six months.

Dec 2011 I have another routine mamo and results come back that there are some areas of calcifications in the right breast that look suspicious. I had a biopsy done on 1/6/2012. I was told that according to my xrays that they saw two areas of concern and performed biopsy on two areas of the right breast. In the upper right section of the breast. Today 1/13/2012 I contacted the radiologist for the results of my biopsy and was told that it was cancer. I asked her was it DCIS, she said it is a form of it, she said it was a more invasive . What does that mean?? She told me that she wanted me to meet with the surgeon and they could tell me more about the stages etc. Then the radiologist calls me back and tells me that there is another area of concern that they saw right above the nipple and that I may have to have an additional biopsy. At this point Im feeling like this is too much and how much more bad news am I going to get.

I guess I want to know what I should expect once I go meet with the surgeon. If I do have a invasive form of DCIS, does that require CHEMO? I think I can deal with everything else that may come with it, but I just do not want to have to go through CHEMO. I have been searching the net trying to educate myself as much as I can about DCIS , or IDC, I guess its called. I guess I really wont know what exactly to look for until after I get more information from the surgeon.

Any information anyone can provide to me would be great.

Thank you.

tnhelen · January 2012

Hi Jaebon,

I was diagnosed with DCIS in October and have had surgery and had my 13th radiation treatment today. Mine was an aggressive form of DCIS also. I had a lumpectomy and they did not get clear margins the first time and went back in again. The second time they got clean margins. I, too was worried about chemo but my oncologist said that chemo is not usually necessary with DCIS since it is confined to duct and has not spread.

It's hard trying to sort everything out in the beginning. I am still trying to do it. That's what I was told by a couple of doctors. This board has a wealth of information and wonderful people. They will do everything possible to help you through this. They have with me. Take care.

cycle-path · January 2012

Jaebon, I'm going to give you a couple of links to get you started. After you look at this stuff, please ask whatever other questions you have.

Here's some info about DCIS and what it is: http://www.breastcancer.org/symptoms/types/dcis/

And here's some info about IDC: http://www.breastcancer.org/symptoms/types/idc/

From what you quote the nurse as having said it's impossible to know for certain what your diagnosis is, but if I had to guess I'd say it was DCIS with some IDC in it. That's a pretty common occurrance. DCIS and IDC are two different things, but you can have both.

As Helen says above, chemo is not a normal treatment for DCIS, but it may be used with IDC. If you do in fact have some IDC, whether chemo will be recommended for you depends on a number of factors. Some IDC patients get chemo, some do not.

So I suggest you read the pages I linked to above, get some more precise diagnosis information from your doctor, and then come back and ask the ladies here for help understanding whatever else you're concerned about. We're here to help.

SheChirple · January 2012

Every case is different. But, if you are like most of us, you are looking for people to compare to.

I had IDC, the invasive form of DCIS (for lack of better description). I chose BMX with reconstruction. With Sentinel Node Biopsy, they found no node involvement. With surgery we got clear margins. I had no radiation and no chemotherapy. Surgery was it for me.

Jaebon · January 2012

Thanks to everyone who posted something. Cycle-path thanks for the links. I will defintely be checking them out. Once I talk to the doctors next week, I will come back and post what my acutal results are.

Thanks again everyone.

LWA · January 2012

Best of luck, Jaebon. It sounds like you have indeed been through a lot already with breast issues! Please do let us know what you find out.

Linda

shelleydodt · January 2012

Dear Jaebon, try not to worry until they come back with your actual biopsy results. I had DCIS in one breast and then they saw multiple areas in my OTHER breast and had to do about 20 biopsies. I was petrified. But the good news is that the type of DCIS I had was also HER2 positive and I went to the University of Pennsylvania and got a VACCINE made from my own cells. I had very little side effects and when they operated to do a lumpectomy, it was all gone. Check out my website, www.shelleydodt.com. Also, I just got back from the San Antonio Breast Cancer Symposium and Dr. Hope Rugo there advised people if they need chemo to use a Penquin cooling cap on their head and they can actually save most of your hair! Don't be afraid, just find out what and then search the internet to get the best treatment possible. In the meantime, try not to worry. You have been through a lot, just know even if you do have BC, you will still be ok!

Jaebon · January 2012

Thanks LWA. Shelleydodt thanks for the words of encouragement. My radiologist is the one that told me I had BC. I will meet with the surgeon this thursday to get more infor and then after I meet with the surgeon I have to go back and have another biopsy which is at this point another blow to me. Because I have been dealing with breast issues for a long time now, I'm so feed up with my breast, a lot of times I feel like, hell just cut them off and I wont have to deal with this mess anymore. I know that is not what I really want, but to have to go through so much for so long is so overwhelming.

I will check out your blog, and I will post what I find out on thursday after I meet witht he surgeon.

Thanks again everyone.

Hailey12 · January 2012

I was diagnosed in Nov. with the same and chose to have a bilateral masectomy with reconstruction there is less than one percent the cancer will come back and no chemo or radiation involved if it is still in the milk ducts and not spread. Hope this helps. It is a long road and I am still going through recovery I still have the drains in.

Jaebon · January 2012

WOW. Hailey what exactly was your diagnosis? I will find out tomorrow for sure what exactly I have and what stage I am. I'm prayerful that It wont be too bad. I am still maintaining a positive attitude about this whole thing since learning the news of having cancer.

Jaebon · January 2012

Hello Everyone,

So I met with the breat surgeon today and she told me that my diagnosis is DCIS stage zero, and not invasive breast cancer. She told me some of my options were a mastectomy, or lumpectomy with raditation. She recommended that I get a MRI because my breast tissue is so dense they cant see what may possibily be hiding behind my breast tissue. Said that the MRI would/could reveal possibily more than I want to know. There is a possibility that there could be something else, but we wont know until we get the MRI done.

I guess my question to the community is the same as I asked the doctor, if I am at a stage 0, what happens if I do nothing.. What if I just wait.. ?? I mean I am thinking about doing the lumpectomy, but from what she is telling me I will end up having one small breast and one normal size breast. Is breast reconstruction normally done with a lumpectomy or is it just with mastectomy?

I tentatively have my surgery scheduled for Feb 17th, 2012 where the surgeon is requesting that we do something with my sentinel nodes. I just dont know what I should do.

tnhelen · January 2012

Jaebon, sounds like we have the same diagnosis. I had a breat mri and nothing else showed up. But the BS did the first lumpectomy and did not like the margins an went in again to achieve better margins. Now I am in radiation for 33 trips and after radiation will start tamoxifen for 5 years.

I asked all the same questions. Even asked my primary care doctor why I should do anything and she almost went nuts and told me they didn't know whose dcis would become aggressive. I did read that at the San Antonio breast meeting that they said there was a new oncotype test that could tell them if a woman would benefit from radiation. My doctor said she was there at the conference but she felt like it was too new for her to use and she like to wait. I didn't get to benefit from that but hopefully other when will.

I got a great book called From 0 to mastectomy by Jackie Fox. It goes through all those feelings that you are having. It's an easy to read book and I got it on amazon for just a couple dollars. It helped me to understand.

Take care.

Helen

elliegk · January 2012

Hi I am the same stage as you and only in one breast, but in more than one area in that breast so lumpectomy not an option. From your earlier posts, it sounded like you also had more than one area involved. Is that right? From my own perspective, I would not wait, because until they do more research they don't know which forms of DCIS grow and which don't. I don't want to take the risk that mine is on the wrong side! GL Wink

Jaebon · January 2012

Hello everyone.

I just recieved a copy of my path report and here is what it says. I had two areas biopsied.

Source of specimen

A Right inferior and Anterior Catt 9 G

B right superior and posterior Cat 9G

Final Diagnosis: Breast right inferior anterior with calcification, biopsy (specimen "A) - extensive intraductal carcinoma, high nuclear grade mostly solid type, with focal comedonecrosis with micorcalcifications .

- many foci showing cancerization and lobules and some stromal fibroctic reation.

- small scelorsed fibrodenoma.

Breast right superior posteror with calcification, biopsy(specimen intraductal carcinoma, solid type with microcalcification associated with comedonecrosis and lobular canceration.

Comment: Although there is no clear cut morphologic evedience of stromal invasion, there are intraductal carcinoma showing stromal reation, wihch makes suble stromal invasion difficult to rule out. Futher immunohistochemical investigation of myoepithelial markes as well as ER and PR will be performed and an an addedum will be issued.

So, there you have it my path report. Any thoughts? I do not understand any of this. Does this mean that I have IDC, even though the breast surgeon told me I have DCIS stage zero.?? I am going for a second opinion on thursday.. Will keep you posted.

cycle-path · January 2012

I'm sorry to say that yes, you have IDC (intraductal carcinoma) rather than DCIS.

I have to say that it concerns me a little that a BS told you that you have DCIS stage zero when the radiologist pretty obviously thought otherwise. I'm glad you're going for a second opinion.

Let us know it goes on Thursday!

dsj · January 2012

Intraductal carcinoma IS DCIS stage zero. Your biopsy nowhere states that you have invasive cancer. It does, however, point to areas of concern. The DCIS is extensive; it's high grade; and it has comendonecrosis. All these suggest the DCIS at the aggressive end. Also while there is no direct (morphologic) evidence of invasion, there are features that make invasion hard to rule out.

I am guessing that your BS will suggest you treat this aggressively. But at this point, I do not think anyone can say that you definitely have invasive cancer.

beacon800 · January 2012

This is a complex path report but so far it appears they do NOT find invasive cancer. That is good.

What is concerning them is that some of the features of the pathology make it hard for them to be sure there is no invasive component so they are doing more work and will give you an addendum on this.

I wonder if the "lobular canceration" means? Is this LCIS or atypical lobular hyperplasia?

In any case, I would not suggest doing nothing. It's a lot going on in your breast and so far it is totally treatable with excellent prognosis for total recovery. They'll want a lumpectomy on this at minimum, my guess. Hang on to the roller coaster cause it gets crazy but so far so good.

fitzdc · January 2012

The abbreviations can get confusing, but second dsj - intraductal carcinoma is DCIS. IDC is invasive, not intraductual - as intra means inside, so it is, for now, contained in the ducts.

cycle-path · January 2012

Oh, dear, I'm very sorry about having posted incorrect info. I'm going to delete my post so it doesn't confuse anyone in the future.

Jaebon · January 2012

Thanks Everyone for your comments. I just finished getting a second opinion at the cancer treatment centers in Philly. I met with the surgical oncologist today and he gave me some news that I was not really prepared for. His recommendation is a mastectomy. He said that I would not be a good candiate for lumpectomy as the area of concern is too large and that after removing that tissues, i would not have a normal looking breast anymore. To say I was in shock is an understatement. My first meeting with a breat surgeon, she told me I have either option of lumpectomy or the mastectomy. She did tell me if I got the lumpectomy, that my breast would significally smaller than the left.

I am devestated because I just felt like a mastectomy was so extreme. I understand the reasoning behind getting a mastectomy, but I am just still trying to process all the information I just recieved. I mean I can look at the up side where I can get a great breast reconstruction, but i guess I am dealing with the fact of having a piece of meet cut off.

Anyone in my age range (37) gone through this? I feel like I am so young and the thought of getting my breast cut off is terrifying.

Any thoughts?

sanbar8771 · January 2012

Jaebon, I had a BMX at the age of 33. I am now 34. It is not that bad and I love the new silicone implants.

Jaebon · January 2012

Hi Sanbar8771, wow. 33 now that is young. So how did you feel when they gave you the option of mastectomy? How did you prepare for the surgery. Where you able to save your nipples? What was your recovery time?

tnhelen · February 2012

Sanbar8771

You have such a great outlook. I am so happy for you. I met a nurse when I had my lumpectomy that told me the same thing and showed me her new 'boobs'. They were beautiful and so was she.

Thank you.

Helen

mayentes · February 2012

I'm in the same place as you. When my primary care said one possibility was mastectomy I completely zoned out. No Way! Too radical. after the MRI came back with the same recommendation, I was really frightened. Got into Boston of second opinions and got the good (?) news that they would recommend lumpectomy and 6 weeks radiation. That was one happy car ride home. Lumpectomy came back as ALL DCIS, but no clear margins. I am scheduled for mx on 3/12. Will see the PS on 2/23 to discuss reconstruction options. I go from accepting and grateful it's not invasive to suddenly being anxious, frightened, and angry.

Blessing to you during this difficult time.

beacon800 · February 2012

jaebon, did they tell you to get the mastectomy after they saw the results of your MRI? That MRI is also an important variable in your decision. If the area is really large, sometimes they have no choice as the lumpectomy will look bad and might not get clear margins.

I had a bilateral MX and it was no problem, not painful, and I had total recovery. Do not be too fearful of the surgery. What is important is that they get to this before it becomes invasive. That is much more important. They can make you look good again with reconstruction, so hang in there. I hope you are getting better news these days.

sanbar8771 · February 2012

Jaebon,

My situation was a little funny. I first had a lumpectomy and then chemo. During that time I found out I was BRCA2+ (unspecified variant) so that made me think about having a bmx. After chemo my oncologist wanted me to have radiation but I did not want it because they were going to have to radiate both sides. (IDC left, DCIS, rt). I asked my onco if it was her and she was in my position would she have a bmx and not gt radiation... she said yes. Thank god for her and being so honest. I also spoke with the radiologist and she told me she does not like to radiate young women because of the potential chance of cancer in other parts of body. That sold me to get a bmx. I am not going to lie. It was a horrible experiance. I have 3 infections from the expander (pseudomonas) and I had the TE's in for over a year. It sucked so bad as I was also a newly wed. But... dont fret, it will be fine. I love my silicone implants. And now, I don't have to worry about getting mammos every 6 months. I dont need to wear a bra and dont have to worry aobut my nips showing..lol/ I did not save the nips because there was a small chance the cancer could still be in there. I wanted everythng out. For me it was an anxiety thing. I knew if I kept my breasts I would worry all the time.

I didnt really prepare for the surgery. I think the lumpectomy was worse than the bmx. I had 15 nodes removed from the left side and can you say ouch. Pain pills did nothing so I had to ice. The bmx was painless. If you are going to have recon right away it will be more painful but nothing a few vicoden cant fix. Anyways, I would not be too nervous. The bmx is easy.... at least easier than the lumpectomy. I am still rocking the nipless boobs and still unsure if I am going to have nipples put on. My hunney loves the new girls and does not care that there is no nips... he is such a man..lol. Take Care and I hope you are well. Julie

Just Diagnosed

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