If you have just been diagnosed....

dlb823

Hi, peppopat ~ I'm so sorry you're joining us, but I can really relate to the Prempro situation.  I also attribute my bc to Prempro, which I was on for more than 10 years, in spite of repeated questions to my PCP about its safety, especially after my sister was dx'd with bc.

Aside from that, I think a real concern about DCIS is, is there any invasive bc hiding within it, which is fairly common.  Someone on BCO's surgeon compared it to biopsying a piece of raisin bread. You may hit a rasin, but you may not.  So, unless the DCIS is surgically removed, I think you do face the risk that something more could be hiding.

Sorry to be the bearer of this information, but I would certainly talk to your surgeon about it, and maybe even get a second opinion, since you're obviously not in any hurry.  The other thing you might do is post what you have above as a new thread within the DCIS section (Forum Index above).  I think you'll find more input from those who have experience with DCIS and the decisions you have to make if your question appears there.

Good luck, and please keep us posted on your situation.   Deanna

DebbieLynn

Hey everyone hope your feeling well today.

I saw the bs again today he refered me to a medical oncologist today. I still dont know what my treatment will be. waiting until monday to make appt.

leelee32

I was just diagnosed DCIS  due to radiation therapy I had done when I was 14  (Hodgkins Disease surviver).  I have opted to get a Bi-lateral mastectomy, since I am high risk, with nipple sparing. I am very nervous and was wondering if anyone went through the procedure and any info. would be great. Thanks   

chrissyb

Hi leelee32, I can't help you with your diagnosis, but I just wanted to welcome you to the best place because everyone here really understands you and your fears, worries and emotions.  Someone will be along shortly I am sure who will be able to give you information on your diagnosis.  Hang in there.

Love n hugs.  chrissyb

DebbieLynn

 Just back from Med Onco, no chemo just rads and Tamoxifen. Tomorrow I make my appt. with the rad onco and have the BRAC1 BRAC2 test. 

PLF130

I got the call this past Friday while I was school shopping for my daughter. Kind of surreal to hear you have IDC as your sitting on the floor under a dress rack. Don't think I'll ever be able to go to that store again. I don't know much more yet except that I will need chemo and surgery.  I can't get my head around this. And there's so much information to absorb. I'm a single mom with an 11 yr old. We just moved so I don't have a wide support circle. I have to tell my daughter soon. I wanted us to have a nice weekend first. How much do you tell your kids? What do you say if they ask if you're going to die? Any advice on buying a wig? I don't think I can tell my boss without bursting into tears. Would it be unprofessional to tell him in an email?

dlb823

PLF130, I'm so sorry that you're dealing with a breast cancer diagnosis.  My heart really goes out to you.

As far as what and when to tell your daughter, I would strongly suggest that you wait until you have some more facts and a treatment schedule.  As scary as the unknown is for us, it can be especially terrifying for our children. I would really try to wait until you know more, so that you can give your daughter factual information, as well as have a few days to get your head around the news yourself.  I know there have been some excellent threads here on this subject.  You might try using the search feature (upper right); or, feel free to start a new thread asking for input from other single Moms. 

Wigs are kind of a personal preference thing, but the best advice I can give you is go to a wig shop or salon where you can try on several with the help of a stylist.  Also, the American Cancer Society offers free wigs, so that might be something to check into. 

Gosh, as far as telling your boss, I think that depends a lot on your relationship with him.  If he's in the same office as you are, I would try to do it in person.  And here, too, waiting a few days until you have more detailed information and a bit of a game plan might make it easier for you and for him.

As far as support, you might be surprised at who steps forward to help you.  And many of us have found this website and our BCO sisters the best support system ever.  We're here for you, and you will get through this, I promise.    Deanna

TracyD

Peppopat, sorry you're here (this is my first post ever, btw,) but I wanted to tell you that I had a contrast-enhanced MRI before my biopsy-- along with the pathology report, it gave my doctor a very good picture of how widespread the DCIS is. I don't think it's unreasonable for you to request a breast MRI before agreeing to a total mastectomy to see if that will give you-- or your doctors-- a better understanding of what is really going on in there.

TracyD

The "Your Diagnosis" link was very helpful. My head is spinning-- after trying to get answers about a bloody discharge and a "yam" in my breast for more than two years, can you believe that I'm *totally* unprepared now that I have an actual diagnosis? So I'm glad to have found a no-nonsense guide to what I need to take away from my next appointments. I've been so confused, because my dx is DCIS but my doc told me it would require a total unilateral mastectomy with sentinel node removal (I wrote "removal" in my notes from the phone call from my doctor, but I truly don't remember if it was going to be a sentinel node biopsy and the removal was a note about the breast tissue! See! So a big thank you all who've contributed to this site!) So anyway, I've been revising what I thought I knew about DCIS and trying to figure out what else I'll need to learn.

The first link (coping with fear?) is broken, looks like the page was moved last month? I think I found it anyway from the home page, just thought I'd mention it in case a mod peeks in the thread sometime soon.

ogreen

I can understanad the what happen if any girl/women heard that she had breast cancer... As my Anty was facing the same. But yes, After the operation she is now fine and able to do their work or she can leave her life normally. I am also worried about the same as my breast is big and some time while my husband and me do the sex by takeing sildenafil citrate, in beginning i feel good but after some time i get the pain on my breast while he surabiing it.

msphil

Hello and my prayers are with you and all of us,God Bless.msphil

linfer7358

Hi, I have just been diagnosed with BC DCIS..My oncologist told me that i need to see a BS because she requested me to have lumpectomy, radiation and followed by Tamoxifen..Have already seen the surgeon, and he briefly explained to me about the situation..He showed me the mamo film and explained what is "DCIS" and how it looks on the mamo..It scares me a little bit when he told me that it's not yet so confirmed that i only have this DCIS or early stage non-invasive cancer cells..Because the cells appeared so close to the end of the film and he said he couldn't confirmed that that's the end, it might still have further that the film wasnt able to get..I hope there is no more to that extend..I prayed! Or he said that it migth have some invasive cancer cells..He scheduled me for lumpectomy in 3 weeks, coz he cant do ASAP due to lump developed after the stereotactic biopsy..I havent told my family except my husband, because i dont know where to start and how to tell them, because their themselves have health problems as well..It's killing me slowly..I am feeling so alone, when my husband is out for work, i stayed home cried all day and praying for strength for me to get through with this..It's just so scary to know that I have cancer and don't know what tomorrow can bring..It's the unknown..Now am thingking of how painful the treatment would be if i can handle it..I am praying for all of us here who has the situation that GOD will protect us and keep us under his care..Hugs to all!..

linda

lulubrooks

Hello Everyone...

I'm a 30 year old woman with a mother with a history of breast cancer...I felt a significant sized lump in my left breast, and immediately went to the dr, and got the ultrasound...they then said I needed a biopsy. Today I got the word that the results came back cancerous. They couldnt tell me anything more than that, and want to do a mammogram on both breasts on Thursday this week...I feel like I've been crying all day, and I really am shaking like a leaf.

I'm looking to go to Sloan-Kettering for my treatment : my boyfriend's mother was treated there and I know its one of the best places...

 I'm sure this sounds cliche....but I just never thought that this could happen to me. Especially not at my young age.

And I agree with everyone who I've seen posting that the waiting is the hardest part...I can't sleep tonight at all...I'm looking forward to meeting with a surgeon at Sloan, as my radiologist isn't exactly the warmest person in the world...and I think having that bedside manner is SO important- especially to an already anxiety-ridden person who is scared out of her wits...

But I wanted to say hello to everyone...and I'm sure I'll be coming back here for support!

BarbaraA

Oh sweetie, I am sendng you cyber ((((HUGS)))))). This time is the worst. The waiting is excruciating. Once your meet with the surgeon, you will come up with a plan. Once you have a plan you will feel so much better because you will be back in control.

We are here for you 24/7 so please come back anytime you need some hugs and please let us know what the surgeon and you decide.

lulubrooks

Thank you so much, Barbara...I live in NYC, and it was so intense...I forced the dr to tell me over the phone while I was on the street heading to get lunch. (intstantly, no appetite, of course...) And after I talked to my mom, I was crying in this little doorway off of the sidewalk...and a woman came up and asked me if i was ok...I wasnt sure what to say, but I told her what happened...and she asked if I was religious- I said I used to be moreso but I was raised Lutheran...and she just came over and put her arms around me and held me while I cried and prayed for me. It was totally unexpected from a total stranger, but it was touching in a way I can't even articulate.

 I know I'll be coming back here as I learn more...which, god, I hope is soon! I can barely function with this waiting!

dlb823

Hi, lulu ~ I just wanted to welcome you to BCO, although I wish with all my heart you didn't have a reason to be here.  Learning you have breast cancer is never easy, but I can't imagine having to deal with it at your age.  I'm so sorry. 

I'm so glad you told us about the woman who comforted you in the street.  I, too, had an angel stop and comfort me at a very early point in my journey, and I often think about her -- that she didn't have to take the time, and how much it meant to me that she delayed where she was going to focus on me and listen to my rambling, just because she saw how distraught I was.  

I'm also glad that you're thinking about going to Sloan Kettering.  As you may know, it's absolutely one of the best places in the country for treatment for bc, and I know you'll get top-notch care there. 

I hope you'll stay with us and let us know how we can help you.    Deanna 

lulubrooks

Thank you, DLB! I'm doing a bit better as I learn more about what's going on...I found out the lump is smaller than I thought (1.4cm), ductal invasive...but its likely a high grade- the radiologist said there was poor differentiation. But I go in for an MRI tomorrow...and then I finally get to meet the surgeon on the 11th! It's been amazing the support that has been coming from friends, family, and strangers...its definitely touching me in ways I never thought possible. Thank you all!

angelhealing

I was just diagnosed with DCIS stage 0 & Cystosarcoma Phyllodes tumor-malignant. The doctors thought it was a fibroadenoma. Only 1% of breast cancer patients get this. Does anyone have any experience w/ this type of cancer? My doctor recommends either a mastectomy or lumpectomy. I'm not sure what to do? I am afraid of nipple death, because I had a breast lift at the time of removal of the fibroadenoma. My doctor says, I have 30% chance of nipple death. Has anyone dealt with this? I feel confused and uneducated. I'm reading everything I can. It's quite frightening, as you all know.

Thanks,

angelhealing 

leisaparis

Sorry you have to join us. I can't help you, but I'm sure someone will come along soon who can. (((HUGS)))

Rose6

Hi I havent posted in a while. What a touching story LULU....I know how scary it is when you first get a diagnoses and how hard it is to wait for pathology reports, etc.....I was obsessed, but had a lot of support from both my Christian and friend community as well as a nurse navigator, she was precious...stayed with me and my appts. till I started radiation last week...now that is going well, alot of tenderness and you have to use cornstarch all day...PHEW, but I have an Oncologist now and my oncotype is real low....8 so that is a relief...this can really take over your life if you let it BUT I WONT...still standing strong, come here and write away, these women are really brave and comforting!

And BTW my boyfriend just asked me to marry him on Friday! I am 59 and this is so exciting for both of us!

dlb823

angelhealing ~ So sorry you're dealing with this diagnosis, and the questions it brings.  I don't have any expertise in the things that concern you, but I can make a couple of suggestions.  First, you might try posting both of your concerns (the rare Cystosarcoma Phyllodes tumor and the question about nipple death), as separate new topics.  Unfortunately, this particular thread doesn't get a lot of traffic, and both of those concerns probably would get input as new threads, where people can find them.

The other suggestion I have is to be sure to get a second opinion.  You can always stick with your original surgeon, but often a new surgeon (preferably a breast surgeon) will have additional information that can help with your decision.   Is the doctor who quoted the 30% rate to you a breast surgeon?  If not, I can give you information on where to find one.  The reason a breast surgeon is important is because of the number of breast cancer cases they do compared to a general surgeon -- which is especially important when you're dealing with an unusual or uncommon bc diagnosis.     Deanna  

rherzog906

I was diagnosed on my 64th birthday, October 7 with a lobular invasive cancer in my left breast.  Had an MRI yesterday that showed another spot in my left breast and 1 on my right breast that did not show up on mammogram.  Have decided to have a double mastectomy with reconstruction at the same time.  My husband and I are going on a week long cruise on October 31 and plan to have this all in place when we come back.  Any thoughts on mastectomy with immediate reconstruction?

dlb823

Wow -- the birthday present no one ever hopes to get!  But it sounds like you have a good grasp of your situation.  I don't hear any panic in your post, and continuing with your cruise plans sounds like a good decision.

My breast surgeon and plastic surgeon @ UCLA were totally encouraging about doing immediate DIEP flap recon with my unilateral mast.  At the time, I wasn't sure, but I'm so glad I let them guide me.  It's the best thing I could have done.  Are you thinking about implants or DIEP or something else?  Looking at photos on-line of the various types of reconstruction was very helpful to me.  There are also areas here (look in the Reconstruction Forum, Forum Index above) where women discuss their experiences with the various types of reconstruction. 

So sorry you're joining us, but I'm glad you've found us and hope we can help you think through your options.     Deanna 

SandyinSoCal

I was diagnosed three years ago, and somehow ended up on this thread, so I read a few pages.  Wow, this takes me back to that time when I was so terrified, and yet under so much pressure to make life-changing decisions, depending on the wisdom of everyone around me because you can't learn enough in 2-3 weeks to completely rely upon yourself.

My mom died of breast cancer when she was 48, and I was 47.  I think I always knew that eventually, I'd receive my own diagnosis.  I had a 7mm tumor, and although lumpectomy and radiation were the treatment I was offered, I decided upon bilateral mastectomy.  I was only able to make that choice after seeing how nicely DIEP reconstruction can be when done immediately rather than delayed.  Radiation frightened me, as did the thought of multiple surgeries to obtain clear margins, so I really did not want to have a lumpectomy.  My older cousin had bilateral mastectomy with implant recon four years prior to my diagnosis, but was not happy with the implants at all.   When I discovered DIEP, I knew what I wanted to do and I have not regretted it at all.   Mastectomy no longer means cutting off your breasts.  It can be merely scooping out the insides and replacing them with your own fat.   I loved the tummy tuck silver lining to the whole thing.   I did have some problems with my first surgeon and I ended up heading to the flap reconstruction experts in New Orleans (DellaCroce and Sullivan) to be fixed up and finished.  Dr. D has told me that 90% of the outcome depends on how the mastectomy is done and how stage I sets up the rest of the reconstruction.   I wish I'd started with him, but now my result is close to what his patients enjoy and I am very grateful that he accepted me as a patient because it took a lot of work to get me here.  

You want to find yourself the very best surgeon possible, regardless of the type of surgery you choose.  Insist on viewing photos and even seeing results in person before you select your surgeon.  Get multiple opinions on every aspect--surgery for the cancer, reconstruction, chemo, hormonal treatments like Tamoxifen (which I've been on for three years and don't mind a bit), etc. 

Once you've decided upon a treatment plan, some of the stress is relieved and you will feel a little less terrified.  I can tell you that having had breast cancer has enriched my life in ways that I never dreamed possible and I have a deep desire and commitment to help other women get through it. 

angelhealing, according to your surgeon, you have a 70% chance that your nipple will be fine.   You do need to have surgery to remove the cancer, and that is top priority for now.  Deanna is doing an amazing job of helping out here---she is now one of those angels who stop to help us when we are lost!

juliekay49

A week ago I found a breast lump and today I was told I have breast cancer. I'm scared to death. You all sound so knowledgeable about your cancer and I know nothing except that I have it. I have an appointment on Monday with an oncologist. My doctor told me the oncologist recommends chemo before surgery. What do I need to know, what should I ask the oncologist and has anyone else had chemo before surgery?? 

leisaparis

Depending on what kind of cancer you have will determin what treatment you get. Some have chemo after, some before, like me and others don't end up having chemo at all. You won't really know what all you need until you see the onc. Anything you can think of write down in a little notebook. Take it with you so you don't forget and write the answers down.

I have chemo, 2nd round of chemo, surgery, radiation, Herceptin for a year and now getting ready to have reconstruction next month. Everything depends on your total diagnosis. It's scarry, but doable. We have all been there and made it through and you will too. Let us know how you come out. Good luck, God Bless. (((HUGS)))   Leisa

dlb823

juliekay, I'm so sorry about your diagnosis, but I'm so glad you've found BCO. 

The first thing you need to do is get a copy of your pathology report.  That will help you understand the type of breast cancer you have, because all bc is not the same.  Many women now have chemo before surgery.  It's called neo-adjuvant chemo, and one reason for doing it is often to shrink the lesion to make a lumpectomy a viable choice.

In addition to asking for a copy of your pathology report, you'll want to ask  (1) Why is chemo already being recommended for you? and (2) Which chemo regimen are they recommending?  Once you have that information, we can help you figure out if you possibly want to get a second opinion, because this is one area (oncology) where there may be more than one option, and not all oncologists think alike.

Let us know what else is on your mind and how we can help.  We all know what a stressful time it is when you're first diagnosed and before you have much information.  (((Hugs)))    Deanna

   

juliekay49

Thank you all for your quick response. After my appointment on Monday I will let you all know what the onc says. And thank you for recommending I get a copy of my path report, I wasn't thinking about that while at the dr today. I'm really all alone in this. My mother is no longer alive, I have no relatives I am very close to and my own children are two young boys 21 and 18. I am divorced for several years now. This web site might be my lifeline. Thank you all again.

dlb823

juliekay, I see you've already branched out a bit from this thread, which is what I was going to suggest to you this morning.  As you look around BCO (click on Forum Index above, if you haven't already), you'll find lots of women facing the same issues you are, and their understanding and support can be a life-line at times.  You may even find women from your area.  I did, and have developed some great friendships with them.

After you see your onc on Monday, you may want to join the November 2010 chemo group, which is probably forming now.  Look in the Chemotherapy forum.  It's a great way to ease the anxiety by sharing with other women who are going through the same thing.  

Another suggestion, especially if you're going to be doing chemo first, is to see if there's an American Cancer Society office in your area, and see if they run a "Look Good, Feel Better" class.  It's a great way to meet other women who are also going through chemo, and you get a whole bag of free cosmetics.  In some areas, they also provide free wigs, either at these events or via a coupon and visit to their office.    Deanna

msphil

Sweetie, you will be in my prayers, I know the feelings you are going through,(   we do) so we will be here for you through it ALL,BUT there is HOPE, for it kept me going to become a  yr Survivor.  msphil