Does Everyone with IDC have Chemo

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DebRox
DebRox Member Posts: 437

Still new here and researching.  My pathology results come in on Wednesday this week, so far what I know 1.7 cm lump IDC, an enlarged lymph node benign.  I will be seeing 2 BS in back to back appointments to discuss the path results.  Of course it is hard to research without the path information, and then the following path information from the surgery I know plays a role in treatment.

However, wondering this, how many women diagnosed with IDC require chemo?  Based on what I know today, I believe it is a given that it will be necessary.  But I did come across a woman who did not receive chemo, she was PR+, ER+ HER2- no nodes.  She was placed on a hormone drug.  Anyways just a shout out for those of you who know.  Thanks

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  • Latte
    Latte Member Posts: 1,072
    edited March 2011

    i think it depends on your stage, type, grade, etc. plus your oncotype score - this is a fairly new test that shows the benefit of chemo to you. before this test was available, they would throw chemo at everyone because there was no way to tell who would benefit from chemo and who wouldn't, but now quite a few women are not doing chemo based on their oncotype results. I did chemo before surgery (neoadjuvant) because of my stage, and did not do the oncotype test - maybe others on the board who did the test can explain more?

  • mb2226
    mb2226 Member Posts: 37
    edited March 2011

    Latte is correct -- whether chemo is required will depend on hormonal markers, oncotype DX (if hormone +), etc.  That said  - I had 1.2 cm IDC, ER+/PR+/Her2-, grade=3, oncotype=20, no nodes, Stage 1B and I did not have chemo. My oncotype was intermediate, my grade was high, and many people would have chosen to do the chemo but I chose not to - it's a pretty personal decision. I have done hormonal therapy (femara) and am almost finished with that... 5.5 years out and so far... so good.   best of luck,,,,,  embee

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2011

    I also had a 1.7 cm IDC, grade 3, no nodes, barely ER+.  I chose no chemo even with a high Oncotype score.  It's an individual decision and much depends on your overall general health, age, etc.  I am 60 and have Type 2 diabetes and chemo could have caused long-term side effects that I considered very dangerous.  Do your research, understand your options and make the decision that is right for you.

    Hugs,

    Michelle

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited March 2011

    Deb .. I had IDC, Stage I, Grade 2, Er/Pr+, H2-.  I was 51 when I was diagnosed.  I had a lumpectomy and radiation.  I did not have chemo.

    I did try Arimidex and Tamoxifen, but had trouble with both medications, so I stopped taking them.

    Good luck with your decision,

    Bren

  • mb2226
    mb2226 Member Posts: 37
    edited March 2011

    Deb - I forgot to mention, but yes, I also had lumpectomy + radiation in addition to femara.  I was 50 when diagnosed. Age I think is also a factor -- if younger, chemo may be additionally helpful. In my case, the % risk reduction with chemo was something like 2-3% (I think?) and I decided to take the risk.  your oncologist will go over risks etc with you and you may have the *choice* to decide on chemo, like I did, or you may not have a choice in the matter. in some ways, a choice is more difficult but one bit of advice is to select a choice that you will be comfortable with.. i never felt bad about my decision..... best, embee

  • jo1955
    jo1955 Member Posts: 8,543
    edited March 2011

    DebRox - Those that have chimed in already are correct in their information.  It is best to go over everything with your oncologist.  Based on my path report, I was told I did not need chemo and I might add my MO did not do the oncotype dx test.  He said in my case it was not required.  I had lumpectomy, rads and am now on Tamoxifen.  I was 55 when diagnosed.  

    The decision to have chemo is entirely yours to make but listen to what your oncologist says and recommends.  

    Good luck with your decision. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited March 2011

    I did chemo but thought I'd throw in my 2 cents because of my choices since then and the results. When I was diagnosed, the HER2 trials for Herceptin hadn't reached any conclusion yet. I was considered high-risk because I was HER2+++, and with a tumor over 1 cm at the time even though my hormonal status of ER95%, PR50% helped enough to significantly reduce my risk, I ended up doing the chemo. If I knew then what I know now I would have refused it. As someone else mentioned, younger patients get more benefit out of chemo, and I was diagnosed at age 50. There was no Oncotype Dx when I was diagnosed, and even the aromatase inhibitors were still only recommended for use for those with mets. Even with a high Oncotype Dx I would have refused it, knowing what I know now about hormonal status. Anyway, here's my signature, just to throw in for consideration when you get your results back.

    A.A.

  • shells43
    shells43 Member Posts: 1,022
    edited March 2011

    At 43, with a large IDC tumor, but no nodes, I chose chemo and radiation just to be on the safe side. 

  • thenewme
    thenewme Member Posts: 1,611
    edited March 2011

    Hi DebRox,

    Chemo recommendations depend on much more than just the type of tumor (IDC).  Here's a link to the NCCN Treatment Guidelines for Patients, which are considered the "gold standard."   It's based on the latest consensus of experts and evidence-based research.  Even so, depending on your particular (specific and possibly unique) circumstances,your recommendations may be different.

    And of course, recommendations are just that  - guidelines.  The best we can do is gather facts, talk with experts we trust, explore options, and then make choices to best balance our personal risk versus benefits.  It's hard, but try not to get ahead of yourself.  It sounds like you're doing much better at remaining calm and level-headed than I was at that stage in the process! Ask lots of questions here - it's great to discuss things and get lots of food for thought, but wait for more objective details before you get too "attached" to any particular course of treatment.

    Best of luck!  

  • DebRox
    DebRox Member Posts: 437
    edited March 2011

    Thenewme: great website information thank you for sharing.



    The pieces of the puzzle coming together for me. I am the type of person that likes to be in control and research as much as I can so i understand what the doctor is discussing with me. My bs appointment is tomorrow, so I am preparing myself with terminology, read books on various procedures, including types or mastectomies and reconstructions, I've read up on types of chemo, hormonal therapy etc. I wanted a clear understanding or hormone receptors and implications. To me knowledge is power and takes the fear away.



    That is not to say I'm not scared. I am. I look at my breasts every day and cry. I was blessed with a beautiful rack, which will be altered indefinitely. I worry about my sex life after. Read so many stories of problems but in a sense, I must deal with one hurdle at a time. Bottom line is I am young, vibrant and want to live. So one step at a time.



    My bs just called with the news she wanted to give me, er+, pr+ and her2-. She sounded positive, I'm sure they all do, but feel this is good news.

  • thenewme
    thenewme Member Posts: 1,611
    edited March 2011

    Hi DebRox,

    Oh, I definitely know what you mean about wanting information and knowledge - it's me to a "T!"

    My receptor pathology is a lot different from yours, but I'm sure others will chime in about that. It sounds like you're going about all this very methodically and sensibly. You'd be nuts not to be scared, but you'll be surprised how much strength you'll find to deal with this, especially if you keep taking it one hurdle at a time.  

    Someone on this board (wish I could remember who, so I could thank her!)  said, "Keep your head where your feet are," and I try to remind myself of that whenever I start to flounder.  Hang in there, and let us know how you're doing! 

  • flopsy
    flopsy Member Posts: 365
    edited March 2011

    DebRox,  I did 4 rounds of chemo and rads but my cancer was fairly large and I had 5 positive nodes so I felt I had to do treatment.   If I had not had a Stage 3 with +nodes I probably would not have had the treatments that I did, but that is just me.  Good luck and I wish you peace with whatever you decide.  I know how hard it is to take it all in and feel you are allowed to make some decisions about your life.  I followed your thread when you were waiting for your results and I could feel your agony and anxiety for those of us diagnosed with this disease have all been there.   Hugs to you, Ginny

  • flopsy
    flopsy Member Posts: 365
    edited March 2011

    Deb,  One more thing for you.  A group of us went through treatment together that started last June.   Someone gave us a motto  and it really stuck and has gotten me through some pretty tough days.  "YOU DON"T HAVE TO BE BRAVE< YOU JUST HAVE TO SHOW UP!!!!!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Hi DebRox and welcome to the club no one really wanted to join!  I had a lumpectomy almost 4 weeks ago (see signature for specifics) and my Oncotype just came in yesterday at 21% (avg 14% recurrence estimate with tamoxifin and no chemo).  This is an intermediate risk score (which the Genetic folks say generally looks like chemo wouldn't help but it may, so they make no specific chemo recommendation). 

    I have opted to not have chemo. My reasons are in my profile, but essentially I'll be 50 in May and I have no kids or others that I would be willing to sacrifice quality of life for quantity for. I'm Stage 1 with clear nodes and no vascular invasion.  I just do not see sufficient potential benefit to offset the potential long term and/or permanent risks of chemo. 

    Besides, I have the most glorious head of hair that it would kill me to lose (seriously...someone comments on it dang near daily) and I have NO desire to have the world know I'm a cancer patient...I've told only my closest friends and family and prefer it remain that way!

    Truly a personal decision.  I think you'll find far less anxiety once you've gotten to the point the decisions are made and you just need to execute on them! Good luck to you!

  • thenewme
    thenewme Member Posts: 1,611
    edited March 2011

    Hi Ginny,

    That's a good motto too!  We need all the affirmations and positive mottos we can get :-D

    Also a great point to mention to DebRox about the treatment-starting-in-whatever-month threads for camraderie and support!

  • mdg
    mdg Member Posts: 3,571
    edited March 2011

    You can see my stats below and I was told no chemo by one med onc and chemo by the other.  My oncotype score came back at 17 which was the highest score in the low category that would not recommend chemo.  I also had angiolymphatic invasion listed as present on my pathology report which indicates that my IDC had a potential pathway to travel by blood though my nodes were clear.  My tumor was 1.4 cm.  I had to make the decision on chemo.  Because of my grade 2 tumor (intermediate) and angiolymphatic invasion plus that fact that I have a 4 year old son, I opted for chemo.  My compromise was to do cold caps to keep my hair during chemo.  I just finished my 2nd of 4 treatments yesterday and still have all my hair.  Unless I tell anyone, no one knows I am sick or am in chemo....I had a BLMX and am going through reconstruction now too and no one has really noticed that either.  The decision for chemo is so personalized.  I would study your pathology report completely and understand everything on it and question it.  I would also ask if they do recommend chemo, which one and how much.  I only have 4 treatments...it's only 9 weeks.  Just a bump in the road and I will be done the first week of May.  Maybe you will get off easy too.  It's not as bad as I thought.  Hang in there...I know how hard this is. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Take in all the information from the doctors and the pathology report, and remember that the treatments of surgery, chemo, and radiation each have their own set of risks both short term and long term that you need to take into consideration in your decision making process.  Make sure that you understand each of those risks before you choose the treatment constellation that is right for you, and always remember that the final decisions about treatment rest with you.  No one can or will force you to do a treatment against your will.   

    Also make sure that you learn the difference between absolute risk or benefit vs. relative risk or benefit.  It can distort things if you don't understand it.  If a treatment is shown to help 1 in 100 women, and another treatment is shown to help 2 in 100 women, the second treatment gives a 50% reduction in risk over the first treatment even though is only benefiting 1% more women.

  • Chickadee
    Chickadee Member Posts: 4,467
    edited April 2011

    I did not have chemo or surgery.  Reason.  Post menopausal ER+/PR+.  Onc at MD Anderson said it would not alter the statistical outcome that much and started me on Aromasin.  I also opted into a clinical trial that added the med Avandamet.  18 months stable but now I have some very small mets to the liver/lung to deal with.  We will try Tamoxifen for 2 months to see if it will respond before deciding on something more aggressive.  I'm hoping the Tamox works.

  • Thatgirl
    Thatgirl Member Posts: 276
    edited April 2011

    @Liane.....you did not have your lump removed?

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    I am in chemo, and am just fine with it... For me, as much as I loved my hair and love my breasts, I love my life more... My hair will grow back... and even though I had a lumpectomy and will most likely have PBMX instead of rads, my new breasts will look fabulous (and perkier)...

    For me I needed to know that I had done everything I could to beat the cancer. The breaking point for me was that I had a .38mm micromet, so the cancer had traveled as far as my node, even though only microscopically, I wanted to make sure it hadn't traveled anywhere else... so the chemo will hopefully zap any rogue cells...

     It is indeed a personal choice, and I am totally fine with my decision, and I am sitting here typing this with a bald head.

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited April 2011

    Hi Ladies,

    Bdavis, I'm in the same school of thought as you are and decided to throw everthing I got at this disease including alternative medicine, I take lots of supplements (told onl what I take and he approved), go for healing, reflexology, massage, also doing FEC chemo with herceptin. At least then I feel I've done everything within my power to heal myself. Also I haven't experienced really bad SE the first night was really bad and I was sick, then 2 days ago I had my period which made me feel bad for about a day, but since then I've been fine I'm on day 11 now.

    My lump is large and I'm at Grade 3 with lymph node involvement although I dont how involved, had results back from my bone scan and heart scan both clear, just waiting for CT scan results, so hoping and praying it has not spread anywhere else, will the CT scan show how involved the nodes are?  The plan is chemo first (just finished my first round once every 3 wks) then mastectomy, then rads.

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    I don't think any scan can show node involvement... only a node dissection can... When you have your mastectomy and they removes your node(s), then you will know. I only had a SN removal (2 were attached together) and I had microscopic involvement, so they didn't take any more to avoid lymphadema and the odds of more involvement was less than 1%.... and a MX for me means no rads...Did they do an lymph node removal yet> How do you know nodes are involved? And your grade? Is that from a biopsy?

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited April 2011

    bdavis

    Hi No surgery at all yet just started chemo, they said it was in my armpit as they could see from the MRI scan on my breasts obviously still dont know how many nodes are involved, the grade was done by the 2 biopsys one on the lump in my right breast and the other on the lymph nodes. 

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    well.. since they know you have node involvement and can see it on the MRI, you will probably have a few removed and not just the SN... Pre-surgery, my BS couldn't feel any swollen nodes and the MRI didn't show any node involvement, so it was just SNB for me...

    So for you, the chemo will shrink the tumor and start attacking the stray cells which is good since yours is aggressive. I assume you are also on Herceptin?? Which chemo are you on? I am on Taxotere/Cytoxan x6... Are you TCH?

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    DebRox... I meant to add earlier (since someone mentioned cold caps) that my onc did not want me using cold caps. He said that mets can go to the scalp and using cold caps can prevent the chemo from working properly on the scalp... so if that is something that you would consider, please discuss it with your doctor... Saving your hair isn't worth risking your life... in my opinion.

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited April 2011

    I'm on FEC chemo with herceptin once every three weeks for up to 6 rounds they are giving me a dense dose which is quite high not sure whether or not were gonna do 4 rounds chemo, surgery and then 2 chemo, then rads or whether its gonna be 6 rounds chemo surgery then rads. Sorry dont know what TCH means??

  • judyfams
    judyfams Member Posts: 148
    edited April 2011

    I also was IDC stage 1, onco score of 20 and decided to have chemo.  I was 67 last year at time of diagnosis.  I decided to do chemo because I found out that breast cancer mets to the liver, lungs, brain and bones and did not want to take a chance with those organs getting cancer.  I had 6 rounds of taxotere and cytoxan and felt that I had no problems doing it because of my diet.  I totally changed my diet to many small meals of high protein, lots of organic fruits and veggies, soups and a lot of water. No processed or fast food.  Rested and did not push the doing of shopping, laundry, cleaning etc.  Had friends and family help with that.

    I am now on an antiestrogen drug called Fareston as I refused to take any aromatase inhibitor due to the side effects.  There is a thread here about Fareston.  I don't know why this drug is such a secret.  It costs about the same as Tamoxifen and is a SERM like Tamoxifen but with fewer and less severe side effects that Tamoxifen.  I too have had no problems with Fareston.

    Whether or not to do chemo is a very personal decision that you alone should make with all your research.  One question to ask yourself is how would you feel if you did not do chemo and in a few years had a recurrence.  I just decided to give myself the best chances - did chemo - and if there is a recurrence - then I did all I could and would still have no regrets!

    Judy

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    Sarah... TCH is Taxotere, carboplatin and Herceptin I believe...

    Judy... where in NJ are you?

  • judyfams
    judyfams Member Posts: 148
    edited April 2011

    bcdavies,

    I live in Ramsey, NJ.   Had surgery and chemo at Valley Hospital and radiation in West Nyack, NY. Where in NJ do you live?

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited April 2011

    I was told I did not need chemo - radiation was a possible, but since I'm 75 I decided not to take it. I will be starting on Aromasin soon. My tumor was 9mm and the sentinel node was clear.

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