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paigelise
paigelise Member Posts: 173
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi all.  I was just notifed via phone today my 2nd biopsy shows "invasive ductal carcinoma insitu".  It is estrogen and progesten (?) positive.  I see a surgeon on Tuesday.  Any suggestions on what to ask?  The nurse today told me she thinks I will be having a lumpectomy, test on the lymph nodes, radiation and chemo depending on it's stage and the lymph nodes.  She said I would most likely be starting Tamoxifen because of the horomones. 

Any books you recommend?  Questions to ask surgeon?  I feel like I have been thrown into a totally different world. 

 Thanks for any help.  I also posted on the "waiting for results" board because I've been there before.   

Wendy

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited October 2009

    Hi All, from me too!  I too have been recently diagnosis with IDC (10/21/09).  It has been a bit of a whirlwind.  I found the lump and saw the Dr. on 10/15, they did a mammogram and core biopsy that day.  I went back for my normal gyn yearly exam on 10/21 and received my pathology report at that time.  I have an appointment with the surgeon on 11/2 to discuss my options and treatments.  I am also Estogen and Progesten positive, HER2 negative, and there are other things on the report that I don't understand just yet.  My biggest issue is telling my family, friends, coworkers....the anxiety is awful.  I have been doing better the last couple of days though.  Researching as much as I can and I did order several books from Amazon.com....I have a real need to understand as much as possible before making any decisions!  Below is a listing of books I ordered....I didn't have anyone personally recommend them but they were highly recommended by people who had purchased them from Amazon:

    Breast Cancer: The Path of Wellness & Healing

    Breast Cancer Survival Manual, Fourth Edition: A Step-by-Step Guide for the Woman With Newly Diagnosed Breast Cancer

    American Cancer Society Complete Guide to Breast Cancer: The Essential Guide to Your Breast Cancer Journey

    The Breast Cancer Survivor's Fitness Plan (Harvard Medical School Guides)

    Breast Cancer Husband : How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond

    Hope that helps!

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  • paigelise
    paigelise Member Posts: 173
    edited October 2009

    Hi Carol!  Thanks for the book recommendations.  I know what you mean about this being a whirlwind!  I know too what you mean about telling people....sometimes I think I'm handling it better than my family and friends.  People have no idea how to treat me.  I am doing my best to educate them about the disease.  Thanks to this web site I am doing a fairly good job of it I think.  My mom is coming over today and she has been a total wreck.

     I am doing emotionally pretty good.  Every once in awhile I will be doing something and it pops in my head "I Have Cancer!" and I throw a tantrum.  Then I'm back to normal. I am trying not to think too far ahead and take it a bit at a time.

    I saw the surgeon (who I really like) again yesterday.  He thinks it's small enough and early enough to do a lumpectomy.  The good news is I orignally thought it was 2.5 cm but it is actually .8 cm.  I am scheduled for the lumpectomy next Friday and they will test the nodes then.

     Good luck on your decisions!  Let me know how things go.  After my lumpectomy I will see an oncologist and radiation after it heals.  They aren't sure about the chemo yet.

     Sorry so long...I obviously like to vent.

    Wendy

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited October 2009

    Hi Wendy......vent away.  I have been doing plenty of that on my own, sometimes to myself, and sometimes to anyone I can find who will talk to me.  Now I have a question (although you will need to wade through my venting to get to it).  So far I have told my husband, a number of close friends and two out of three brothers.  I have put off telling my daughters (ages 24 & 34), one brother and my Dad (my Mom passed away over a year ago, she was 92).  I was trying to wait until after b-day parties, Halloween, anniversaries, and any other special events...but have recently decided that this Friday is "the day" I will at least tell my daughters (the special events never end).  My Dad and other brother I will tell after my appointment with the surgeon on 11/2.  I am unable to tell my daughters in person as they are too far away.  Do you (or anyone else for that matter) have any suggestions on HOW to tell my daughters?  Telling them will be the hardest.  Emotionally I am doing pretty good so far, although I absolutely understand your "tantrums".  I have taken to using words I would normally never use....although it has been rather short lived, as I have found others that are far better at using these words and are happy to use them for me whenever I ask.  Rather silly I know.....but a bit of odd humor seems to be just what I need at the moment!

    Ok, off to take my frustration out on my treadmill.

    Thanks for your input,

     Carol 

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  • fayesap
    fayesap Member Posts: 1
    edited October 2009

    Get a book called "The breast book" by Dr. Susan Love - great book and very informative!

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  • paigelise
    paigelise Member Posts: 173
    edited October 2009

    Carol....it's not going to be easy telling your daughters but it has to be done.  After they have the initial "freak out" (as everyone I have told has done) I have found it best to educate them on my type of cancer.  I understand that people hear the word "breast cancer" and automatically picture the worst.  Thanks to my research on this site after they calm down I tell them the following:

    "I have IDC which is the most common form of breast cancer.  It is small and they believe they have caught it early.  Some cancers are hormone positive and this is acutally a good thing because this makes them more treatable.  Even in the last 5 years there have been advancements made in cancer treatments and this cancer IS highly treatable"

    My worst person to deal with has been my mom who is very high strung and thinks "what if" and jumps way far ahead when I'm not even sure of my treatment plan yet.  I was very firm with her and told her I cannot afford to let my mind run wild now and she also needs to focus her energy on the next upcoming step.  I tried to get her to read some of my brochures and come on this site but she won't do it.  Last night I went back to work and talked to my coworkers and also gave them my little education speech on it.  I also let them know as of this time I am emotionally doing well...not to be scared if I do have a little crying jag because it will pass. 

    I hope this help somewhat.  I don't have kids so I can't specifically help on that matter. 

     Good for you on the tread mill!  I really need to start exercising.  I think I've gained 5 lbs since last weeks....I never lose my appetite and it is one of my coping mechanisms.....and the worse the food the better I feel.  So I need to start thinking about lifestyle changes now! 

    Please let me know how it goes with your daughters!  I know you are anxious about it but you will feel so much better after you tell them and get it off your chest.  Also let me know how your visit is on 11/2.

     Wendy 

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  • katsOK
    katsOK Member Posts: 142
    edited October 2009

    I just sent you a Private message concerning telling your daughters.  Hope it helps.  Kat43 also known as Kathleen

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  • katsOK
    katsOK Member Posts: 142
    edited October 2009

    Realized I sent private message to paigelise rather than to Carol so I sent the same message to Carol a few minutes ago.  Sorry about the mix up.

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  • paigelise
    paigelise Member Posts: 173
    edited October 2009

    LOL...no problem.  I just have dogs....no daugthers.

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Wendy and Kathleeen....first thank you so much for your input.  I was able to finally tell my daughters on Fri/Sat.  It was difficult but also relieved a great deal of my anxiety.  Tomorrow is my 1st consultation with my surgeon.  I am putting together a list of questions and trying to be as prepared as possible.  I hope I don't miss anything!  I expect to be overwhelmed with information, rattled, confused and a varity of other emotions.    Are there any questions you wish you had asked and did not?

    OK, This next section is me venting: 

    My concerns today however are more of a practical nature....Am I going to be able to literally work (keep my job) through this?  We need my income.  We are not in dire straights but not working puts a major strain on our finances.  We are on COBRA insurance because my husband was laid off in January and my full time job went to part time (and the stimulas 65% copay ran out as of today).  I am currently working two part time jobs and he just started a temporary job through an employment agency.  I know that we will make it through this,  we have a strong support system of family, friends.  I am sure there are both better and worse situations to be in but how does one deal with all of this in addition to the BC?    Ok, I feel somewhat better now.....I just needed to get this out of my system!

     Carol T

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    Hi Carol,

    I wanted to respond to you because I, too, am in Sacramento.

    I had to have a mastectomy, and I have been off work since October 20th (mastectomy on the 21st)  No way could I go back yet.  I am having some pain problems and back problems so would not be able to work yet, although I do feel better day by day. My drain is out and that helps.

    However, I have read here that ladies who had lumpectomies only needed to take a couple of days off due to surgery and feel better quickly and with no loss of range of motion.    If you are having a sentinal node biopsy and lumpectomy - well, I don't know if you'll need a drain or not.  If you do, you probably won't want to go to work with it but it depends on your job.  I haven't paid much attention to lumpectomy since I couldn't have one.

    The rest of your treatment may be uneventful.  You have IDC so you'll probably have radiation.  Many woman seem to work through radiation, although many experience fatigue as a side effect.  You may have to modify your schedule or work with your employer to cut your hours if fatigue becomes one of the side effects you experience. 

    You are HER-, with a low-grade, so you probably won't need chemo, unless they find any cancer in your lymph nodes.  Let's hope they don't.  Make sure you get the oncotype dx test to see what your likihood of recurrance is.

    So, the real answer is it sort of depends on what they find when they do the surgery.  

    Please PM me if you like - since we are in the same city, maybe we even know some of the same doctors, etc.  :)

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Hi Ann.....thanks for the info.  I would PM you but I am so new to this site, I have no idea how to do that.  I am just meeting my surgeon tomorrow morning....have not met with any other Dr.'s yet.  I thought I would me meeting with an oncologist soon but have had no word on that yet.  Unless your Dr.'s are at Kaiser....I probably won't know them and at this point I don't really know the ones at Kaiser yet.  Ok, so I checked out your blog.....love your sense of humor, and I don't like pink either!   I hope I have a better experience with my nurses!!  I'll post tomorrow after seeing the surgeon and hopefully will get additional feedback to help navigate this mess!

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  • elizk
    elizk Member Posts: 5
    edited November 2009

    Carol, I hope all went well with telling your daughters.  I had to tell my daughter who lives out of town, and was due to give birth any day.  It was a hard conversation over the phone, but she was glad to know, and said she would have been more upset if I kept this news from her.  One question I suggest you ask the surgeon is if they do the pathology while you are under, that way they know if they have clean margins, and if lymph nodes are positive.  I consulted w/ 2 surgeons, and went with one at Univ. of FL (Shands) because they have facilities to the pathology right then & there.  I was worth the extra drive, the first surgeon said 15 to 20% of the time they have to go back because they didn't get it all the first time.  I hope they can get you into surgery ASAP, we know it's he__ to wait!!!  Please let me know how the Dr. visit goes tom.  I will send GOOD THOUGHTS your way.  I am meeting w/ the dr to put in my port tom,11/2, and then start chemo next week.  We gotta hang in there together, Elizabeth

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Thank you, Elizabeth......best of luck with your procedure tomorrow and the chemo to follow.  I'll send my best thoughts to you too and you are right, We gotta hang in this together.  I'll post tomorrow regarding the consultation.

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    Hi Carol...I'm glad you told your daughters!  I also am worried about work.  These other wonderful women who have been thru it can probably help more but since you and I look like we have a similar diagnosis this is what the nurse told me when I asked. 

    I am having a lumpectomy and node biopsy this Friday...I took 1 week off from work. I will need radiation when it heals (@ 6 weeks) and she said most women work thru that.  At the end of the course I may be fatigued.  If I need chemo she said most women also work thru that, some take 1-2 days off a week though.

    I make more money than my husband and we have benefits thru my job so there is no way I can lose it!  I'm going to try not to worry about it at this point. 

    It has helped me to have someone with me at the Drs office writing down what he says!  Because I cannot remember 1/2 of what they said by the time I reach the parking deck!

    Let us know how the consultation goes!  

    Wendy 

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Hi all,

    Ok, this is what I learned at the consultation with my surgeon.  I will have a lumpectomy (my choice) and node biopsy on 11/12, followed by radiation @ 6 weeks.  The node biospy will determine if additional nodes will need to be removed and if chemo will be necessary.  Today I had blood tests, an EKG, and a chest x-ray and I think that is all I need done prior to the 12th.  My Dr. was very thorough in explaining everything and answered all my nervous questions.  I am feeling better, at the moment anyway.  We took a digital recorder to record everything in case either of us missed/forgot anything.  The surgery is done in the morning and I would go home later that same day....is that typical?  The tumor is approx. 3cm, part of which is IDC and part is DCIS and until it is removed they will not know the exact size of the IDC.

    One step at a time,

    Carol

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    Hi Carol....so far your plan sounds similar to mine.  I am having a lumpectomy and node biospy on 11-6.  They said I would be home later that day but if they take more nodes or there is any complications I may stay over night just in case.  They also said I will have radiation @ 6 weeks later.  Chemo depends on if it is in the nodes and they will do an Onocotype (?) to test it's chance of recurrance.  I will also have to go on Tamoxifin or something for the ER positive part. 

    I'm confused about the size of mine...the mammogram said it's about 2.5 cm but on the biopsy pathology the cancer is .8 cm....so not sure what I should put for the actual size. 

    So I will keep you posted when I can after my lumpectomy this Friday so you know what to expect!  I am trying to get my house organized, laundry done, bills paid in case I'm "out of it" for a few days.  I see the surgeon for a follow up after surgery next Tues...I am hoping it will be staged by then and I get more of a plan. I have also been reading up on a new radiation technique called mammocite(?) where it's a shorter duration...sounds like they can do it if it's not in the nodes.  But like you said...one step at a time or else I get overwhelmed. 

    What a journey....

     Wendy

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Hi Wendy.....I wanted to send my Best Thoughts your way for tomorrow.   You will be in my thoughts from this point forward.  I too am trying to get things organized, laundry done, bills paid, etc.  I am doing my best to focus on each appointment (or step) as it comes and NOT get ahead of myself....not always easy.  If you feel like ranting today.....I'll be checking back to help if I can!

    Carol T.

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  • syncrsequim
    syncrsequim Member Posts: 3
    edited November 2009

    Hi I was also just diagnosed  with IDC on October 7,2009. I am having surgery on November 18 , going to have a mastectomy. The book that I have found the most usefull is " Just get me through this" Deborah Cohen and Robert Gelfand M.D. What I liked about it was it was a though she was talking directly to me in a way that was easy to understand. The DR. clarified the medical points again in a very easy to understand way. This was from Amazon.....don't we all love them!

    Cheri

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    HI Carol...thanks for your positive thoughts!  I got my hair cut this morning...I was going to hold off but thought I may as well get it done now.  I told my hairdresser and we both started crying.  She was real nice and said she would go wig shopping with me if needed.  That is hard for me to hear because I also just focus on one part of this at a time.  But it was nice to have her offer.

    Hi Cheri and welcome!  This website has been great for research and having the support of everyone here who knows how you feel.  And I love getting book recommendations!  Carol...I just ordered one you recommended from John Hopkins about exercise.  I'm also on Amazon and have a ton added to my wish list.

    I am going to do some more laundry today.  I bought some cotton sports bras that hook in the front from Walmart...I'm mad at myself because I put them in the dryer on low and it shrunk them.   So I may have to venture out for more.  My friends are taking me out for Mexican tonight (NO margaritas LOL) and to see a movie to keep me distracted.  I guess I should go but I kind of want to go back to sleep.

    I'll log in and let you know how it goes.  Best case scenario it's not in the nodes and he gets it all out.  And I'm home the same day having a good reaction to my pain pills!

    Wendy

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Wendy....enjoy your evening out!  I love Mexican Food too, we went out last Sunday for our anniversary, and I did have a margarita.  Let's go with the best case scenario, and margaritas as soon as possible!

    Take care,

    Carol

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  • kanthony
    kanthony Member Posts: 24
    edited November 2009

    HI Wendy,

    Good luck tomorrow! I will hope and pray for the best results!

    I had my lumpectomy and sentinel nodes biopsied on 10/26 and my boss said to take two weeks off! So I did, as I have lots of sick time that I have never used.....but I could definitely have gone back to work after 1 week : )

    I took the Lortab a couple of times a day for the first couple days, but I definitely needed prune juice to counteract the side effect!!! Be sure to remember that! : )

    Take care, Karen

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  • Ozzi
    Ozzi Member Posts: 80
    edited November 2009

    Hi Ladies, I just thought I'd weigh in and let you know that I am 9 years out of my diagnosis with IDC.  As far as work is concerned - there is no one answer for anyone.  I had a bilateral mastectomy and chemo and was fortunate to be able to take a lot of time off.  However, I could have worked thru some of it and it might have been good for my mood if I had.  Don't forget about FMLA which protects individuals in this situation if you work for a larger employer.  You have joined a group of extremely strong women (that doesn't mean we don't have our bad days).  You will do what you have to do and will march through this.  All will be well.   

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    HI all....good news so far....they biopsied 2 nodes and they were negative!!!  The lumpectomy went well...they let me home that afternoon.  That night it swelled way up to my collar bone and was tight so I went to the ER...they said that was normal but I was also dehydrated.  The pain is much better today...it actually was never too bad.  I have been on Vicodin every 4 hours...Karen you are very right about the prunes!

    I go back to the surgeon on Tuesday and hopefully will have my final path report.  He thinks he got it all. 

    I will check in later and hope you are all doing well!

    Wendy 

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Great News, Wendy!!  I am so relieved for you!  Did you use ice prior to the swelling?  Glad you are doing so well, you certainly give me hope!  I am trying to keep my anxiety under control for my surgery on Thursday.  Hope you feel better every day!

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    Hi Carol...funny thing about the ice is that it wasn't marked to use it on my discharge instructions so I didn't ice it when I got home from surgery.  I think once I started using it the swelling really diminshed.  Honestly the pain has never been out of control...just keep on top of it.  It looks a lot worse than it feels.  I had a little nausea from meds when I came home but crackers and coke helped.  Overall my experience has not been that bad...I'm glad to get it out of me!! 

    Let me know how it goes Thursday when you can!   I will check back if you think of any more questions for me before then. 

    Wendy

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Hi Wendy.....hope this note finds you doing better every day.  I don't really know what else to ask at this point.  I just want this step behind me.  My biggest problem at the moment seems to be getting to sleep.  Too many thoughts racing through my head as I try.  The surgery on Thursday, my last day at work tomorrow and thinking of all the things I need to get done.  I could use an off switch tonight!

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    Hi Carol...I do feel better every day. I probably could've gone back to work sooner than next Monday but I want the time off.  The surgeon moved my appointment to today so hopefully I will know more with the final path report.

    I so know what you mean about sleeping!  I am really good in the day at functioning.  When I lay down my mind wanders to the "what ifs" and my task list.  Even if I do fall asleep fast I wake up in a few hours.  And I always wake up in the morning with a pit in my stomach.  I can't remember any of my dreams though.

    I will be thinking of you tomorrow and sending positive thoughts your way!  Write when you are up to it! 

    Wendy

    **Just saw surgeon...I am stage 2A because of its' size (it's 3 cm...I need to change my profile).  He said the margains were good.  They are waiting on an Oncotype to help make my decison about chemo.  I see an oncologist 11/30 and a radiation oncologist will be caling me. 

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  • CarolT0214
    CarolT0214 Member Posts: 64
    edited November 2009

    Hi Wendy (and others too),

    I have been kind of out it since my surgery on Thursday 11/12.  Unfortunately they found it in my lymph nodes making the surgery a bit more extensive.  I spent the night in the hospital and went home late afternoon on 11/13 because I was nauseas from the anesthesia.  I slept most of yesterday and I am trying to move about more today. My arm bothers me most....but I am working on that by trying to use it a bit more.....but not too much.  It will be a week or two before I have the pathology results.  I will see the surgeon this Thursday to remove the drain.  I am pretty sure it is pain meds that are knocking me out.....I haven't been taking them as often as I can and the pain has been manageable.  I forgot to ask about the Oncotype test....I will need to do that soon.  I don't know if that is a standard test or not with my Dr.'s.  Doing better today.....I expect I will feel better each day.  Wendy - did you have a drain?  I am doing OK with mine just wondering about the removal.  Ok, all for now....my body is telling me it is time to rest again.

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  • paigelise
    paigelise Member Posts: 173
    edited November 2009

    HI Carol...I'm glad to hear from you and hope you are feeling stronger today!  I didn't have a drain because they only took 2 nodes.  I don't know if the Oncotype is a standard test....I think with mine since it was not in my nodes but so big that made me boderline for chemo.  I should know something around Thanksgving.  I see a radiation oncologist on 11-23 for a consultation but he won't start anything until I see the oncologist on 11-30. 

    I go back to work 3rd shift tonight. I could've gone back earlier but wanted to rest.  It's still a bit bruised and it itches for some reason.  It's tender if I bump it or when I wake up.  Right now I am just taking Advil if needed.  That generic Vicodin really made me woozy and I only used it the first few days.

    When do you go back to see your surgeon?  Do you know how many nodes they took?  Please rest and try not to do too much yet.  Write when you can.

    Wendy 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Hi Pagelise,  Good morning everyone,   Sunshine  Paigelise, you got a lot of excellent info fromt the ladies here.  When I was first diagnosed I was so overwhelmed with what I thought I needed to know about my IDC.  I did most of my research right here on breastcancer.org.  I was so informational and helpful.  If you look up to the top of your screen you'll see  "treatments and diagnosis"  and treatment and sid effects"  Click on those and when you get to those pages, you can also look to the left of your screen or right or bottom and there will be other areas to answer your questons.  Good luck  and God Bless you in your journey. 





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