invasive ductal carcinoma.....what now?

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


    I haven't heard anything about that test Anniec. I just know that triple negative means that we don't have receptors to estrogen, progesterone or HER2 which means the chemo used for the more common breast cancers isn't effective.


    The results were in my pathology report but I didn't know what it meant since it just named each of those hormones with the minus sign beside them. My first response was that the minus sign was better than the plus sign until I came here.

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2013


    The FISH test is used to determine or confirm HER2 status:



    http://www.breastcancer.org/symptoms/testing/types/fish

  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    thank you Beesie.

  • blissful
    blissful Member Posts: 100
    edited October 2013


    Annie.First off I would like to give you a big hug and say I'm sorry for your outcome. I can relate to what you are going thru right now as I am in the same boat... (dx oct 18 got results on oct 22 nd) I had an appt already set up for my results but knew if they called sooner to come in then it was positive for cancer...I got that call so I was ready for the results but still in shock and kind of numb...the dr who gave me the results really didn't have much to say other than looks like you have cancer...IDC. I did ask him about est and prog results and he said positive. I was so relieved at that point I didn't ask anymore other than can I have a copy of my path report. I then had to talk to the referral specialist about a bs so i didn't even look at the report till I got home . Now I'm more confused than ever!!,my her2 has also been reflexed to fish..mine says equivocal (+2).i also have an e Cadherin stain of neg.which is consistent with pleomorphic lobular ..hmmm so two diff types of bc ?....I haven't received a call I'm just sitting here in limbo..tomorrow I have an appointment with my np so I'm going to ask her about the fish test..I hate this hurry up and wait as I am a very stressful person..please update when you find out more info...hoping the best for you...

  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    Thank you blissful. I am leaving in a minute for my appointment with the surgeon. Go the link that Beesie has above my last post, maybe that will help. Also try http://pathology.jhu.edu/breast/grade.php This link helped me a little too. It's from Johns Hopkins. http://www.abcdbreastcancersupport.org/ I received this link from someone who has been very helpful to me over the last few weeks. I downloaded the app on my phone, but you can just go to the site and there is a lot of really useful stuff there. I will check back when I get home! Soooo nervous and scared! It still doesn't seem real, like we are stuck in a really bad dream we can't wake up from, huh?!

  • blissful
    blissful Member Posts: 100
    edited October 2013


    you are so right it doesn't seem real..a nightmare ...wishing you best of luck today...Bobbie

  • MarieInOntario
    MarieInOntario Member Posts: 11
    edited October 2013


    I was diagnosed with invasive ductal carcinoma four days ago and have an appointment tomorrow to see a surgeon at my local hospital. I also have an appointment next week to see a surgeon at a major city hospital. Does anyone know what the procedure is for bc treatment? Do you have surgery first and chemo later or do you have chemo first and surgery later?

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


    Welcome Marielnont, It is different for each case. Sometimes if the tumour is larger they do chemo first to shrink it so surgery has a better chance of getting it all Also I think the size of the breast relative to the tumour makes a difference. I would do as much reading here as you can today and ask questions here and then take a list of questions to your surgeon tomorrow. If you can take someone with you to take notes in case you don't remember some of it it is helpful too.


    I wish you didn't have to join us but you have come to the right place for compassion, information and support. Hang in there.

  • Ridley
    Ridley Member Posts: 634
    edited October 2013

    Hi MarieinOntario -- sorry you find yourself here.  I'm in Ontario as well (assuming you mean Ontario, Canada).  From what I have read, whether you do chemo first often depends on the size of your tumour.  If it is large, often the recommended treatment will be to do chemo first to shrink the tumor and then do surgery.  I think more often, surgery is step number 1, followed by chemo (if required) and then radiation (if required).  Surgery was my first step in the process.

    Good luck tomorrow -- post any questions you have or you can send me a PM. 

    Ridley

  • Warrior319
    Warrior319 Member Posts: 32
    edited October 2013


    Hey MarieinOntario, So sorry about your new BC diagnosis!! In my case it was surgergy first and chemo second. I did not have radiation because I elected for bi-lateral mastectomy. Hugs to you and feel free to PM me with any questions.

  • MarieInOntario
    MarieInOntario Member Posts: 11
    edited October 2013


    Thank you for all your quick replies. I am so happy to have found this website.

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


    Hopefully someone will come along with more information but I would ask what size the tumour is and whether it is hormone positive or negative and what the plan is for treatment and what the outcomes are for and against each thing.


    I had no idea what to ask when I went but the women here have been so helpful that I learned a lot and am still learning.

  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    I'm back!


    tumor size 2.5 CM


    ER + (100% of tumor nuclei are staining)


    PR+ (100% of tumor nuclei are staining)


    HER2-NEU - (negative)


    Stage IIA


    Grade I or II (she said that the grade wasn't clear yet)


    Nodal status is clinically negative (will have a sentinel lymph node biopsy during surgery)


    Will be put on tamoxifen for 10 years because of my age she said.


    Now I have to decide between lumpectomy and mastectomy. They will plan to remove an area of about 5.5 cm from left breast. Now I have to choose which to do, just the tumor and hope for clear margins or go ahead with a mastectomy (I would want both done). I asked the surgeon what her opinion was and she said that is my choice and she would not give me a "this is probably your best option".


    Tomorrow, BRCA testing


    Then I will have a MRI (breast area only). She said probably this week. No pet or bone scan.


    Then my surgery will be within the next week or two. As soon as I decide they will go forward with the surgery.


    She said that whether I have chemo or not will not be known until after the surgery and the tumor is examined but I will have radiation either way I go. My breast tissue is 50-75% fibrous tissue. THOUGHTS??? Lumpectomy vs. Mastectomy. I think I stated before that I have never liked having larger breast and they hurt all the time, I couldn't even breast feed! I know the odds of recurrence are about the same either way.

  • blissful
    blissful Member Posts: 100
    edited October 2013


    wow I bet your glad to get all the info .I hope you feel better now that you have more info..best of luck to you...is 10 yrs a long time for tam?..

  • placid44
    placid44 Member Posts: 497
    edited October 2013


    Anniee,


    That is great about being 100 percent ER positive. My mother was, too. She had ILC stage 3c with 27 out of 29 lymph nodes positive but STILL has had no further sign of disease after more than six years. They they think she did well because of the tamoxifen and now femara, which ou can take as well. That is a good pathology report.

  • shanrigg
    shanrigg Member Posts: 4
    edited October 2013


    I am new here but I just want you to know that you have to cry! I would stay up at night worrying about everything and what to do and I would have panic attacks and crying fits but my husband convinced me I needed to get a prescription for Klonopin which is like a Zanax! That helped me out so much in the beginning with all the what ifs and being anxious about everything! I was diagnosed stage IV in August 2012 at the age of 30! I did all my chemo (both AC chemo and then Taxol) upfront and then did a double mastectomy with immediate reconstruction and then had radiation after that! The thing I recommend is first, get a port put in!!!!! I cannot stress this enough! I know it is a little surgery and all but I had to have my first chemo (the red devil aka Adriamycin and Cytoxin) in the inside part of my forearm and it hurt so bad! After I got my port, it made matters sooooo easy! Also, I went to several surgeons until I found the one who would do my surgery the way I wanted it done! He worked in conjunction with a plastic surgeon and that plastic surgeon was able to skip the whole expander process and go straight to implants!!! This made it less scary for me! I went in and came out with boobs! My philosophy was I was doing all this other stuff the way my doctors told me and all so by gosh I wanted one thing done my way and I went through several surgeons and was just patient until I found them! I would cry after each visit to a different surgeons office! Some would tell me since I was already stage IV then they recommend to just get a lumpectomy at this point and others would want to have several long drawn on procedures!!! I hope this helps!!!! You can do this!!!!!!!!

  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    I do feel better. Everyone said I would feel better when I had more information and you were right! So......anybody have thoughts about the lumpectomy vs. mastectomy? Seems like such a huge decision and there's probably not a right or wrong decision. I just have to decide....

  • thatsvanity
    thatsvanity Member Posts: 391
    edited October 2013


    If it were me I would have a mastectomy because it is difficult to have correct imaging on fibrous dense.

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


    I did a mastectomy to avoid radiation and because I just wanted it gone. I had huge boobs so i had the other one taken off too and the surgeon said it was a good decision because there were pre cancerous signs in the breast that didn't have cancer. I am not having reconstruction because I didn\t want the added pain. You have to consider how you want to end up and how much you are willing to go through to get there. Mine was an easy decision. I have 3 sisters who have big boobs and all said "get them off". I didn't spend any time debating. It is different for everyone though. Some people are very attached to their breasts. I felt mine had let me down. The one had been inflamed and had an abscess a couple of times so I was done with it.


    Lots of other forums about it as well. Do lots of reading and talk to family and close friends as well as the women here.


    So glad you have some answers and glad you are feeling a little better.

  • ritagz
    ritagz Member Posts: 29
    edited October 2013


    Hi Annee,


    Just came back from my surgeon too, and the news is pretty good.


    estrogen +100%, Ki-67 less that 3%, Her2 neg, all the best things under the circumstances.


    Maybe because of my age, the size of the tumor and the histology, the surgeon did not even suggest that I needed anything other than a lumpectomy, and if the MRI and the nodes are clean, they have found that a short regimen of radiation for only1 week would be sufficient. She is pretty well known in her field and is in a New York teaching hospital so I am assuming this is good medical advice.


    I was not too keen on major radiation, knowing the possible side affects, unless it was really necessary, so this was really good news.


    For post menopausal women they are using another new drug instead of tomaxafin, (dont know the name yet) so overall the news is really good. I am really relieved and happy that all your information came back so well too.


    It sounds like your doctor feels that having a mastectomy would be more of a psychological decision than a medical one, so if it is not medically necessary, you might want to rethink it. Less is still less - maybe not in long term prognosis, but possibly in long term pain and the amount of time needed to adjust.


    I would speak with other women that chose that option and see if it is for you.


    For me, unless it is medically necessary, I would like to keep as many of my original parts as I can - but that is just my personal choice.


    good luck to you and I will be watching to hear other peoples suggestions.

  • ndgirl
    ndgirl Member Posts: 986
    edited October 2013


    AnnieC.. glad your diagnosis is as good as it can be, i felt that way with mine, except I didnt like the grade 3 report, but dr told me that stage was more important than grade.. and that was at Mayo in Rochester, so guess i will believe them. i chose mastectomy also because I did not want 6 weeks of radiation, or any radiation for that matter. But it is such a personal decision that one doesnt fit all. These boards have alot of great advice from women that have been through it all.. what ever way you chose. Best of luck. Keep us posted.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    ritagz - you will be receiving the same dose of radiation, just a shorter time period. If you are having Mammosite, or other brachytherapy radiation, they place a device , usually during your lumpectomy, that is both internal and external to the breast and radiate through that device for 5 days in a row. Postmenopausal women are generally given aromatase inhibitors - there are three drugs - Arimidex (anastrazole), Aromasin (exemestane), and Femara (letrozole) - while Tamoxifen blocks the cell receptors and allows circulating estrogen to continue - which is good for premenopausal women, the aromatase inhibitors suppress estrogen produced by the body. All of these drugs have side effects, but they are different for each of us, and some do not experience any noticeable side effects at all. There are active threads on all of these drugs on this site.


    anniee - why was radiation recommended if you chose mastectomy? Generally speaking, radiation after mastectomy is only recommended if the chest wall or skin is involved, or if you have positive nodes.

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


    Off topic here but wasn't sure where else to ask. What is the significance of a "differential diagnosis" of "sarcomatous differentiation (metaplastic carcinoma)" when the diagnosis is IDC?


    I am curious because the research shows that chemo doesn't work with metaplastic carcinoma and yet I have really been pushed to have chemo because of the triple negative. I am coming up on the end of the timeline the MO gives for offering chemo and still have an open wound. I have been worried about not getting chemo but if differential diagnosis is meaningful then I won't worry so much.


    Sorry if this is distracting.

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2013


    Annie,


    Take a look at my June 20th post in the following thread:

    Topic: having real trouble w/ mastectomy vs. lumpectomy choice


    I've included there some links to research that compares long-term recurrence and survival results for lumpectomy vs. mastectomy. That's followed by a long list of things to consider as you make the decision.


    No one can tell you what the right thing is for you to do. We each have different feelings about our breasts, different concerns about each of the surgeries, and different worries about side effects and future risk. So what's right for me (or anyone else) isn't necessarily right for you. That's why I put that long list together, because it can help you understand the implications of each surgical option and assess what's right for you. Hopefully it helps with your decision.


    SpecialK, from Annie's description in her first post in this thread, it sounds as though her cancer might be right up against the chest wall. So I'm guessing that's why her surgeon is saying that rads will be needed regardless of whether she has a lumpectomy or mastectomy.

  • STLmom
    STLmom Member Posts: 21
    edited October 2013


    Anniee


    I was also offered a lumpectomy or mastectomy. I was also offered a lumpectomy breast reduction and lift. I chose the third option. My breast surgeon and plastic surgeon worked together. They were able to take out more breast tissue. They also took out a lot of tissue in the other breast because of the reduction. I was told smaller breast would be easier for radiation. I did not have any trouble from radiation. I enjoy having the smaller breast. My onco test score was good so I did not need chemo. I am sure this is not a option for everyone. Each person has to decide what is best for them. Good Luck. It was easier for me after after my facts were gathered and I could start treatment. It has been 11/2 years for me since all this began. My thoughts are with you.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    beesie - thanks - I missed that! I am surprised that they would offer a lumpectomy in that situation, but perhaps thinking that rads would handle potentially slender margins at the chest wall regardless of which surgery?

  • AnnieeC
    AnnieeC Member Posts: 117
    edited October 2013


    thank you beesie, the radiologist had told me it was almost to the chest wall. I was told today I would need radiation for 5 days per week for 7 weeks no matter which surgery I choose. The chemo decision wll be made after the surgery no matter which surgery I have either. So choosing one surgery over the other will not eliminate the possibility of either chemo or radiation. I made sure I was clear about that when I talked to her. I am nervous about extra pain from a mastectomy but I know that a lumpectomy could result on additional surgery also if they aren't sure they got enough. I'm nervous about my breasts being 50-75% fibrous and always having these bumps and lumps and not sure if it's a normal bump or something else again. I know its a decision that I need to be sure about but how is anyone ever sure?

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2013


    Annie, some people just know. I knew that I didn't want a MX but then it turned out that I had so much DCIS that I had to have one. Then I found out that I had more suspicious calcs in my other breast and needed another biopsy. So as much as I didn't want a MX, I was seriously considering a BMX. But when that second biopsy was benign, and when the MRI on my other breast was clear (my cancer breast showed up as being completely full of "stuff" on the MRI), I decided to opt for a single MX. By keeping one breast I know that I am higher risk to be diagnosed again, but I evaluated that risk and decided that it was a level of risk that I could live with.


    Some women know from the start that they want the least invasive surgical option. Other women know from the start that if they are ever diagnosed, their breasts go. The decision is harder for everyone else. I'm analytical, so I use stats and build pro and con lists. Ultimately the question I asked myself that helped me the most with my decision was: "If something goes wrong with either of those choices, which decision would I regret the most?" In other words, if I had the BMX and then developed major problems as a result of the surgery, or if I developed breast cancer despite having the BMX, would I be more angry or frustrated than if I had the single MX and developed breast cancer at some point in the future in my remaining breast? That was an easy one for me to answer. I don't want to get breast cancer again, but I view cancer as being one of the risks of life. Even if I have a BMX, I can still develop any other type of cancer. So if I develop BC in my other breast, I won't beat myself up about having made the decision to have a single MX only. My attitude will be that I took a chance and I landed on the wrong side of the odds. I will be comfortable that I made the best decision with the information I had. On the other hand, if I had the BMX and then had problems after the surgery, perhaps on-going pain or major reconstruction issues, etc, or if I developed BC anyway, I would be very angry with myself for putting myself though it all, quite possibly for no reason at all. Certainly if I developed BC again, the BMX would have been for no reason, and if I never developed BC but had problems with my surgery or reconstruction, I would wonder why I removed the other breast for something that quite possibly would never happen (another diagnosis of breast cancer). So that answered the question for me.


    My question - and my answer - is how I think; it's not necessarily how anyone else thinks. So you need to go through all the pros and cons of both surgeries, understand the benefits and the risks, and then decide for yourself which option you can live with the best, not only if things go well, but even if the worst should happen.


    SpecialK, I'm thinking that a lumpectomy is being presented as an option for Annie because the close margin will be against the chest wall, which means that it will be the same close margin whether she has the lumpectomy or the MX. On the breast side of the tumor, I'm guessing that her surgeon is confident that she'll be able to deliver good margins. And if she's saying that rads will be necessary in either case, that evens things out too. Just a guess on that.

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


    Great answer above ^^^

  • Babyswim
    Babyswim Member Posts: 62
    edited October 2013


    Hi AnnieeC,


    If you haven't already done so and there is still time, perhaps you should get a second opinion. I think it will help to reassure you if a 2nd Dr agrees with the treatment plan or perhaps another viewpoint will present a different treatment plan for you to consider such a neo-adjuvant chemo (before surgery to shrink tumor for better margins) Or a nipple-sparing/skin sparing mastectomy, or even a single procedure straight to implants vs. tissue expanders. Best of luck in whatever you decide. But as mentioned above it is a decision for you and only you to make about YOUR body, because you are the one that has to live with it (so to speak).

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