invasive ductal carcinoma.....what now?

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  • julieped
    julieped Member Posts: 81
    edited October 2013

    Ainniee  - I was diagnosed on August 28, 2013.  The waiting and the unknown are the most difficult part.  I met with my breast surgeon the next week (a wonderful doc) and surgery was about a week and a half later.  I decided on a bilateral mastectomy with reconstruction.  I was also a good candidate for a lumpectomy but chose the mastectomy.  I know exactly how you are feeling.  Your mind tends to think about the negative and I asked my husband only to tell me postives.  I also stayed away from negative people in my life.  I am fortunate that I have had good test results (weird to say when you have cancer).  Ask your oncologist to have the oncotype dx when you get to that point.  I will be thinking about you.  Waiting is so hard.  Many nights I cry when I am falling asleep.  You will ge through this.

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  • Bounce
    Bounce Member Posts: 574
    edited October 2013


    Dear wrenn


    Thank you so much for the link to the article.


    It was to the point and spot on.


    It explained in a simple sentence what I have been feeling but have been unable to describe: I lost "... not only (my) health but also a sense of well-being and security about the future."


    My distant family keep saying how well I am doing and I resent it because it makes me feel like they don't appreciate what I am going through.


    Now I have a sentence to add for them so they will understand that I am not the same person I used to be.


    Very good link.


    Thanks again


    Sorry about the grey lines I can't get rid of them.











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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2013


    I also loved the link Wrenn. When I was first diagnosed I put on the happy face for the family, not wanting to worry anyone, then I wondered why they weren't concerned. About two months in, I crashed big time. I felt like I was all alone in the ocean. We ARE forever changed, but that doesn't have to be in a bad way. I am a few months short of two years, and I feel like my life is richer than it ever was. 

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  • Jo6202
    Jo6202 Member Posts: 372
    edited October 2013


    AnnieeC-Hi, sorry you have to join us. I just wanted to say that the best advice I got was ...it is ok to cry. I had been trying to hold it all in and be strong for my husband,children,friends and relatives and then my SIL (10 year survivor) knew what I was trying to do and gave me that advice, ok to cry. And the flood gates opened. It had been just below the surface. So go ahead and cry until you can cry no more. You will feel better after each cry...it is a stress relief valve.


    I have a second SIL who is a 13 year survivor. She is a stage IV survivor. I'm telling you this because I want you to know you haven't been handed an instant death sentence. I also have two sons who are cancer survivors ( one 11 years and one 4 years). One son's doctor told us " I found no expiration date on you anywhere". So I have four survivors in my immediate family and I plan on being number five.


    The third thing I wanted to tell you is you will learn the meaning of the word patience. We have the same type of personality. I want to know worse case scenario and I want to know everything now! Well I first saw my PCP July 2nd and I chose lumpectomy so I could get on with my life and travel to our winter home and get this all behind me. Well after mammograms, ultra sounds, biopsy, meetings with doctors the day of my lumpectomy FINALLY came. I did not get clear margins so had second lumpectomy then did not like my MO so had to find new one. I was all set for radiation, have had my tattoos, simulation and everything and new MO put everything on hold because she says I'm in a gray area and she sent tumor for more testing (oncotype DX) to see if I should have chemo first. I'm suppose to get results Oct.24th and then I can finally start some type of treatment. So you see July 2nd to Oct. 24th and still waiting. You will learn to HATE waiting.


    Sorry to go on and on. Best of luck to you and stay with these boards, you will find lots of info and make friends who truly know what you are going through. Blessings.

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    Oh man, I feel so bad going on and on about myself. As I look through all the responses I see so many of you are new to your diagnosis also. I just got mine Friday. I knew before that because of what the radiologist said to me and all the research I did on teaching sites for radiologist, so I was prepared to hear it Friday. My questions though is, when did you tell friends? I have told my family and 2 friends. I live in a very small town and everybody knows everybody. The town I live in is 1 block long, lol. I can't even drive down the road or go to the store without seeing a bunch of people I know. I am going to the surgeon and it has been indicated to me that my treatments will start ASAP. I am not going to be able to hide it around here and I don't want to have to explain to everybody why I'm not at work sometimes and if my hair falls out and all that good stuff. I would rather tell everyone at once and get it over with. I have grown children and through the years I cringe sometimes when i see the stuff they put out there on Facebook BUT.....I have a small friend group on Facebook. I only have family or people that I consider family on my friend list. What do you think about just putting it on Facebook? I really don't want to call each person personally. My husband and I have a very small business in town and I have to go to work everyday. The thought of having the "I have cancer" conversation over and over does not sound like fun, plus I don't even know if I could handle it. We have had our faithful customers for over 25 years but when a big box store (starts with Wal) planted it's self at the end of town our business really took a hit. We consider all of our customers family. We have been through babies being born with them, marriages, divorces, kid problems and deaths with our customers over the years. We went from doing really well to just getting by financially when "W" came to town. Anyways, do you think it's a bad idea to just get it out there on Facebook and get it over with? Should I just say nothing at all?

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    What about sending a group message on Facebook? It might make some of them feel like it is more personal than a status update? Although if they are all close friends and family on your FB then it wouldn't really make a difference. I think it might be easier on you to just have it out there so you won't have to worry or wonder about who knows and how to act. It is your reality now so sharing might make you feel a bit better.


    I actually sent an email from my Dr. office to my sisters when I got the news. I told them to not tell my daughter until I got a chance to see her in person and once I told her then I would tell anyone who would listen. I am anxious and chatter when I am nervous and since it was the only thing on my mind of course it came out when I ran into a neighbour on the elevator or in lobby. Mind you I have known my neighbours for a really long time so we are all kind of close.


    Ask yourself how it will affect you with them knowing and whether it might feel better or not.


    Sooooo hard all of this.

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    I think I'm going to do it. The people that I am closest to have already been told. That way they won't feel like they aren't important enough to be told individually. I'm just dreading going to work tomorrow because I know enough people in town know and they had all weekend to tell everyone else. So I feel like I just need to acknowledge it to take away some of the awkwardness.

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    I think some people know but pretend they don't until you have told them. It makes it awkward. Once they have the official word from you then they can talk with you about it.

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  • ndgirl
    ndgirl Member Posts: 986
    edited October 2013


    Hi AnnieeC, it is hard to know what to do isnt it? I also live in a very small town, probably would make yours look like a metropolis! anyway there is no way I could have kept it secret around here. I chose not to put anything on FB but did let close friends and relatives know.. things get around anyway especially in small towns... if we are gone for any length of time everyone knows.. sometimes this is annoying and then other times it is such a comfort because everyone is pulling for me to be well. And I figure I need all the prayers and positive energy coming my way i can get. As word got around... you would be surprised how many FB friend requests I got.. and I know it was some people being nosey thinking I would post things about my surgery, recovery, treatments etc. I feel that it just adds more stress to try to keep things secret in small towns.. almost impossible and it can also add stress to family and caretakers not knowing what they can say to others as well. But you need to do what makes YOU feel most comfortable, not just others. I know we women are used to always thinking of others and putting ourselves last, but now we need to take care of ourselves first. Not to say we cant still care for others.. of course we should and will, but our needs are on the front burner now.. hope you make your decision.. i found most people are so caring and just want the best for us.. some just dont know what to say so they pretend it isnt happening. cancer teaches us all many lessons. Best of luck in all your decisions and treatments.


    Hugs to you... Linda

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    Well, I did it. I hated my kids not being able to talk about it with others too. I actually feel better now! I'm not sure why but it felt like it took a load of my chest (no pun intended)! I know it won't eliminate having awkward moments with people but it is what it is. Trying to hide it or wonder who I see tomorrow and if they know and just aren't saying so isn't something I have the energy or desire to worry about now. My kids will need support and now there will be more people available to them hopefully. I wish this all would rewind back to last week and they would have said I'm fine but I'm not and I have to face it! I have other things to worry about now like is that bump on my ankle a swollen lymph node?! I was warned that I would notice all kinds of stuff that would freak me out thinking its related to the cancer and yes....I am already doing that. Ugh! On a brighter note, my sister has booked me a 5 hr "all the works" day at the spa! Very excited, except I'm not sure how laying on my tummy for a massage is gonna work cause I'm still a little tender from the biopsy. I already arranged to have a wig day, ordered my free scarf and I will be making a appointment to get my teeth cleaned. I read on oprahs website that you should get your teeth cleaned before chemo....not sure why but it's oprah so it's gotta be true right? I'm ready to get better and done with this now I just need to get my doctors to hurry up! I hope you all are doing good tonight! Thank you for being there for me, this forum is the only place I can go and share how I really feel!

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  • blackcat2012
    blackcat2012 Member Posts: 242
    edited October 2013

    Do get your teeth cleaned before chemo as the chemo lowers your immune system and opens you up to all sorts of bugs. Maybe take a small pillow/rolled up towel to the spa to alleviate pressure on the biopsied area and enjoy your day.

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    thank you blackcat!

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  • mankatostate
    mankatostate Member Posts: 231
    edited October 2013


    Anniec-We too live in a very small town, and we've moved so much that the only way I might be able to let some friends know about the cancer was from fb. Still I felt funny just blurting it out on Fb so I said something about getting some bad medical news and told anyone interested to private message me. Big mistake! Got so many it was so hard to keep up. I wish I would have thought of sending a group private message. That is a great idea...oh well, eventually it's made it's way on to my post and every so often I will have some still ask on fb who hasn't seen what's going on but that is OK with me now.


    A few weeks ago I ran into an old friend at a sporting event where she was running concessions. She hadn't heard and the look on her face...well it reinforced why it was good of me to share and warn friends first. We couldn't even chat then because she was working.

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited October 2013


    Annie, where in Michigan are you?

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    I have my lab report!


    Moderately differentiated invasive ductal carcinoma


    Tubule formation: Score 2


    Nuclear grade: Score 2


    Mitotic Count: Score 1


    Total Score: 5 (well-differentiated)


    I think the tubule score and the nuclear score are in the middle. Mitotic score is good??? I Still can't figure out why it says MODERATELY at the top (right below where it says **Alert Malignant Diagnosis**) but then at the bottom next to my total score it says WELL-DIFFERENTIATED? Any input? Any idea of what this means as far as what they will suggest for treatment?

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    I am not sure what your report means. I think well differentiated is a good sign though. Seems to me it means the cells look the same and so it is better than if they are poorly differentiated. Not sure why they have confusing information. Someone will come along with answers.


    Wish you didn't have to deal with this but you are in the right place for support. Take care of yourself. xo

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  • blissful
    blissful Member Posts: 100
    edited October 2013


    http://breastcancer.about.com/od/diagnosis/tp/tumor_grade.htm....see if this helps you....on one of the pics you can click on it and it will give you the total feature score..3-5 grade 1 Tumor..6-7 grade 2...8-9 grade 3 look under Tumor grade and path

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited October 2013


    Hi Annie I'm sorry you are going through this, but I think after you have a PET scan? The oncology team will be able to give you more information. It is all a blunder in the beginning and it is like joining a club that you didn't ask to join. I pray that every thing will work out and take one step at a time.


    Amylynn

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited October 2013


    I found this on John Hopkins medical website, "5. What does it mean if my carcinoma is well-differentiated, moderately-differentiated, or poorly differentiated”?



    These terms are used to indicate how aggressive your carcinoma is likely to be. They are assigned by a pathologist looking at the cancer under the microscope. Well-differentiated carcinomas tend to be more slowly growing, with a better prognosis. Poorly-differentiated carcinomas are the most aggressive tumors, with a worse prognosis, and moderately-differentiated carcinomas have an intermediate prognosis."


    That is good news!
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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    http://pathology.jhu.edu/breast/grade.php


    I found this site and from what I can see it looks like I might be kind of in the middle on tubule formation and nuclear score but the mitotic count is a good thing. I Still don't understand why the top says moderately differentiated and by the final score it say well-differentiated. I hope it is well-differentiated! It also has a note about doing reflex to fish test. From what I can find it has something to do with chromosomes. I wonder if this test is typical procedure. My husband said that he still thinks that a fall I took caused the cancer. I was decorating a wedding cake and instead of turning the cake I kept walking around it trying to figure out where to add more flowers. My kitchen has a step right where I was standing and I stepped too far to the right and fell down the step but my boob caught the counter while I was going down. It hurt so bad when it happened, I actually thought I ripped by boob off! My breast was black and blue and purple for a couple of weeks. Not quite two months later I find the lump EXACTLY where the breast had been bruised. By the time I found the lump all of the bruising and pain had been gone from the fall and I had forgotten that I even had injured that spot. I have read that some injuries to the breast can result in cancer forming around the place of the injury. Has anyone else heard of this?


    I have been wondering if I need to go to counseling. I think I'm doing ok most of the time but I wake up every single morning and cry straight out of bed. I don't get that and I hate it. I hate that my husband has to start his work day seeing me crying, I know it has to upset him. He hugs me for a little bit until I stop crying and then I'm ok again. I cry when someone tries to talk to me about it too. I can spend my day like nothing is different than before they told me I have cancer, but mornings and someone trying to comfort me through the day upsets me. The only time I don't get upset is when I talk to you guys. I can talk all day long on here and be fine but with family, friends and mornings....I cry. I know it's not my fault this has happened but I feel like I have changed everyone's life and turned them upside down. I just want them all to be happy and it sucks that I am causing them pain. I'm strong and I know I can fight it but it's the effect it has on my family that kills me. I just want to do what I have to do to get rid of this cancer and not have them have to deal with it too. I don't even want my husband to go to appointments with me, I can do it alone and I would be fine. I just want everyone to keep their lives going normally and let me handle this. I'm a strong person and I know I can.

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  • jbdayton
    jbdayton Member Posts: 700
    edited October 2013


    Annie my husband goes to every appointment with me. I think this is his way of feeling like he is helping. Our spouses need to feel needed. He missed one chemo but my daughter went with me. Yesterday I actually went to a radiation appointment by myself he went to a funeral of a dear friend of his mothers and took her.


    I know it is hard to be in this part of your journey. Cry when you need to. As your treatments get determined and you start getting the plans in place the stress should reduce and you will switch from crying to fighting mode. Your strength will take over. Many ladies said they took Ativan to help. Ask your doctor for help.


    I am praying things get better quickly and you begin your fight. You did not cause this to happen so you are not allowed to feel guilty about it. I felt the same way in the beginning like I was a burden but as time went on I decided to use my energy to fight instead and my core support group was happier with me. They fight right beside me and encourage me. They want me around a long time and they will do whatever it takes to help me get there.


    Hoping you can relax a little today. (((((HUGS)))))

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2013


    Annie - A 5 is good! That means low grade. Woo hoo. Cry when you need to cry, feel what you need to feel. My church has a Stephen Minister program, and I met with a SM for several months after my diagnosis. SM programs are offered in many types of denomination, you don't have to be a member of that particular church. The SM is typically a trained lay person who meets with you about an hour a week. My SM happened to be a cancer social worker for a local teaching hospital. She was amazing and she saved me. SM don't try to convert you, they're not preachy. Their role is just to meet you where you are in a confidential and safe enviroment and just listen.


    Also my PCP put me on antianxiety meds and an antidepressant. Meds were made for times like these. I'm still on the antidepressant but weaned off the antianxiety med as I began to feel better.


    It is going to be rough going for a little while.


    I hope this message is clear -I'm writing in flight headed to Baltimore to get 3d nipple tattoos from Vinnie.


    Big hug!


    Ps if you are interested in a SM and can't find one I would be glad to help you.

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    I don't feel really out of control, I just randomly start crying and I have a really hard time talking to anyone about it without crying. I am taking ativan and it does help and I probably would be out of control without it. I think once I know that it hasn't spread to other parts of my body, I will feel a lot better. That is my biggest fear right now!!! I have kind of accepted the breast cancer part, it's just the spreading part that scares me. I don't even think they will know that till after I have surgery or the bone scans and other test, right? It seems like a long time to have to wait to find out. I feel like I'm actually doing fairly well for all of this just starting, but I'm just scared about the spreading part. If it's in my other organs, then I am not as confident about the outcome. I would think that with invasive ductal carcinoma that a lot of women worried about this....or is it just me overthinking the whole thing?

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  • Warrior319
    Warrior319 Member Posts: 32
    edited October 2013


    I am so sorry to hear of your IDC diagnosis. You can and will get through this! I just joined the forum yesterday and have already found tons of support. I had bi-lateral mastectomy and it was the best choice " I " ever made. It was a little uncomfortable the first couple months with expanders, but I eventually got use to them and then it was time to exchange them with for my new breasts. I elected to stop at not have nipples replaced and I love it, I can wear many of my shirts without a bra.

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    warrior, why did you have to have expanders? I thought that now they can do the mastectomy and reconstruction all at the same time. I really want to go smaller if possible, maybe b cup. I don't know if that's possible but if given a choice that's what I would choose. Would I still need expanders if they allow me to downsize? I've always had very sensitive breasts and now they are painful and I rather dislike them. personally I don't want them large again, I disliked them before and now I really can't stand them lol. If I am not allowed to go smaller I may even not get reconstruction surgery.....I can't even imagine asking them to replace these like they are now...

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2013


    Anniee - It is completely up to you what size you go. I'm not really sure why it seems most PS prefer the expanders. I know my PS surgeon waits four months after the last fill before the exchange. In hindsight that worked out pretty well because I asked her to do some pocket work on one side and she also removed some encapsulation. Fourteen months out they are still both very soft. The "Breast Reconstruction" forum is very active and incredibly informative. Whippetmom will even give you guidance regarding sizing. She was so very helpful to me

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  • naiviv
    naiviv Member Posts: 535
    edited October 2013


    Anniee,


    I was also dx with IDC and I had a micromet to 1 lymph node. The invasive in IDC that it has broken out of the duct. Stage 2 is still considered early. Everything you are feeling is normal and it takes time to get a handle on the fact that you have cancer. Once you do that step is easier, then comes the decision about surgery. I was told 10 and 20 year life exp are the same with LPX and MX. Recurrence rate is slightly lower in MX. LPX requires radiation to the breast, MX may not. If you have a node or 2 only you may also not have to have rad.


    Chemo is probably in your future a lot will depend on the status or ER,PR and HER . This is the best place to read about all different types and treatments and surgeries. Research and ask questions. I had a Nipple and skin sparing BMX. I had cancer on left and right breast was clean. I also had a lymph node dissection on left. As time passes it does get better in one area, just to let you feel anxious about another. I am about to begin chemo this week and yes I am scared. Scared of an unknown, but not as scared as I would have been had I not been able to read and share here with this awesome group of women. I also have xanax prescription never took anything before diagnosis, I have it now. If it becomes too much I take one at night so I can sleep.


    It's very important to take care of yourself now. Eat as healthy as possible and get sleep so you are rested. Breathe and take it one second at a time if you have to. Come here and ask all of your questions, but remember we answer based on our situation and what we have been told. We are all unique and what may be ok for me , may not be for you. All Oncs are different.


    Take care


    Vivian

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  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    Thank you again everyone! I guess I need to read up and get educated on reconstruction. I hope you all are well today!

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  • Warrior319
    Warrior319 Member Posts: 32
    edited October 2013


    I had expanders because they removed all the breast tissue, and nipples. I actually in a shirt was flat-chested after the mastectomy. To even get back up to the size I was I needed expanders. After a one fill-in I was about the size before surgery. In my case where my breasts were a B cup he stretched me to a D cup to make sure he had plenty of new skin. Although I fill a full D-cup my breasts do not look huge and fit just right for my body. Hope that makes some sense.

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  • PoohBear-61
    PoohBear-61 Member Posts: 263
    edited October 2013


    AnnieeC...wish I could give you a big hug.....ive been reading your posts from day one as you reminded me of myself when i got diagnosed a few months ago......I could feel your pain and fear all the way up here in Canada ....Don't be so quick to rule out lumpectomy ....I was also wanting to go for a mastectomy at the beginning until i read someone else's post who got a mastectomy and then a regretted it . She got a re-occurrence shortly after in the scar area and was wishing that she would have gone for a lumpectomy and radiation to kill any stray cells ......Anyway goes to show that it is a roll of the dice ....Statistically lumpectomy and rads has the same reoccurence rates as Mastectomy . I am sooooo glad I kept my breast.....its actually nicer than the good side as its a little perkier looking....looking at me real quick in the shower you wouldn't know I had surgery ....I have my own nipple and sensation is still there ....I was B cup before all this ....but actually with all this stress i lost 15 pounds so now an A cup both sides ....the girls are small but still cute and spectacular ( if you watch Sinefeld youll get that joke ) Don"t make any quick decisions till you have all the facts .


    I had 2.6cm of DCIS ( with a 1.5 cm of IDC found within it ).....


    Big hug

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