Stage 1, Grade 2, ER+ PR+ HER-, Node-Negative, Onca 20 Chemo????

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limegreen
limegreen Member Posts: 124
edited June 2014 in Stage I Breast Cancer

I am on the fence and don't know if anyone else out there is in my boat.  I had a single malignant tumor removed, .9cm during a biopsy in Oct '09.  All tissue and a lymph node removed during my bi-lat mast a few weeks ago was clean.  ER+ PR+ HER- and doc wants me to take tamoxifen, which is okay.  But he wants to hit me with TC for 4 rounds and I am not sure if the risks outweigh my benefit for my diagnosis.

I am seeking a second opinion, but want to know if there is anyone in the same situation out there with any thoughts?  It would really help.

Comments

  • LISAA401
    LISAA401 Member Posts: 130
    edited February 2010

    I was in your same situation I was 38 and 1.8 cm tumor onco 21 and 0/2 node erpr + her 2 -. plan initially was to do rads and tamox but my bs wanted me to see med onco for 21 score. I decided to do the chemo give it my all and never look back and say I should have. I was well premedicated.... never got sick.... never had low wbc and made it thru the 4 tx standing strong. I worked as Rn full time nights and completed rads today. I know I gave it my all and hope I gave it a a....... whipping. I am a mother wife and I wanted to increase my success even it was a little. You can be the only to make that decision. My onco and bs said after I made the decision they would have done the same but every one is different. I lost my eybrows and hair. but here it is 12 weeks post chemo and I have gi jane hair do. I feel good. Let me know if I can help with any other info. Take care Lisa

  • pj12
    pj12 Member Posts: 25,402
    edited February 2010

    I an older, 62 at diagnosis. Oncotype 27. Three doctors said no chemo for me. Also my Oncotype report said "chemo would be of no benefit." I was worrried to skip it. Kept asking why not. Finally it was explained to me that my mitosis rate  was a "1" which means slow acting cancer cells. Chemo does not work well on them, likes aggressive cancer cells better.

    So even though it still worries me I am glad to skip chemo for good reasons.

    I am 99% ER+ so onc says Arimidex is doing plenty for me.  I sure hope so!

    pam 

  • sheri47
    sheri47 Member Posts: 115
    edited February 2010

    hi im a little different i am a stage 1 mass was 2 cm  my oncogene  was 18 0/5 nodes grade 2

     i did 4 rounds of AC er pr pos her 2 neg   i cchoise to do chemo i just wanted to know i did all i chould  i also choise to have ovaries out. 

    i am also on arimidex  last chemo was march 17   everyone is so differant do what you want and feel good about

  • mommy2two
    mommy2two Member Posts: 130
    edited February 2010

    I pretty much agree with what Lisa said.  I have almost the same diagnosis as you and my oncotype was 21.  I finished 4 rounds of TC on New Year's Eve and I am currently doing rads.  It was very doable and I continued to work full-time during treatment, only taking a few days off if I didn't feel well.  At first, I thought of backing out and spent two days crying about my decision but in the end I decided that since I was a 34 year old mom/wife that I do everything I possibly could to make sure it never comes back.  If it does...then I have no regrets and can't say, "if only".  Of course, ultimately this has to be your decision but my onc said if it was his wife or daughter, she would definitely be getting chemo.  Please PM me if you want any additional information.

    Toyah

  • Kyta
    Kyta Member Posts: 713
    edited February 2010

    Hi Limegreen. I was 44 at dx with IDC, 2 tumours, one was 1.9cm and one was .7cm, clear nodes and also ER+/PR+/Her2-. My onc did the stats on recurrence risk and said he would only have had me do chemo (TCx4 is what he was recommending while we were waiting for hormone receptor results) if I was ER-, so no chemo for me.

  • fortunate1
    fortunate1 Member Posts: 644
    edited February 2010

    With the middle range oncotype score you will find all kinds of different decisions for all kinds of reasons.

    I assumed with a 20.5 oncotype I would have chemo. It was my onc who said the benefit wasn't enough to do it. I was scared and it took a bit of convincing, but I did not do chemo. Femara is what my onc said would be of the most benefit.

    Good luck with a hard decision. 

  • limegreen
    limegreen Member Posts: 124
    edited February 2010

    Thank you for your responses.  I am 47, peri-menapausal, so I don't think the Femara or Arimidex would work for me.  My onc says that ER+ bc tends to come back more.  Eventhough I would take tamoxifen, onco says and my chemo benefit would only be an additional 3-4% but still considered significant.

    I am surprising myself and can't believe how 'on the fence' I am about this.  This decision seems harder than my bi-lateral mast decision. 

  • encoremom
    encoremom Member Posts: 186
    edited February 2010

    I was 52 at diagnosis with an onco score of 24.  Two tumors - both less than 1 cm, ER+, PR-, Her2-.  My oncologist also said that given my situation, the benefits of the chemo really didn't outweigh the risks of serious side effects.  He only recommends chemo if there is a clear benefit and that usually isn't the case in the intermediate onco score range.  He recommended no chemo so none for me.  I'm on Arimidex but Tamox is an option if you're pre menopausal.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2010

    Lime it is a harder decision than surgery...they grey zone is mysterious.

    I did not do chemo with a 22, and a node, but it was a very tough decision. You have to decide what your priorities are are how comfortable you are with risk. Did I make the right choice? Most people in my boat would gave done the chemo.

    Do ask for the 3 page report from your oncotype test. Looking at the charts helped me. I looked at the node positive chart, more, those stats are a bit different.

    I would get a second 2nd opinion, if you want one.

    Good luck!

  • kellyj
    kellyj Member Posts: 75
    edited February 2010

     My situation was similar and I struggled with it also.  I had a er/pr +, her2 - , 1.6cm tumor. My oncotype score was a 15. Low chance of recurrence.  Two of my three onc opinions said that chemo would add only a 3 to 4% benefit. The third onc said do the chemo, you are only 37, and if it comes back its fatal.  Well, I did not do the chemo and two years later it recurred as a lump in the same breast. This was AFTER a double mastectomy! They say there is only a 2 percent chance of that happening.  Luckily, it has not spread and I am redoing my tx.  Eight rounds of chemo, 6 weeks of rads, ovaries out, and a new antiestrogen drug. I was on tamoxifen when it returned. Best of luck with your decision. It is a hard one.

  • limegreen
    limegreen Member Posts: 124
    edited February 2010

    The 3 page Onca report with the graphs and stats show that if I combine the chemo with the tamoxifen it adds a 3-4% benefit which the oncologist says is significant.  My BRCA is negative.

    I have appointments with 2 other oncologists within the next few weeks to get a perspective before I make the final decision.

    kellyj, Thank you for your note.  Did you do the BRCA test?  Am sorry to hear of your recurrence, I feel so bad for you.  Let us know how you are doing.

    You guys are the best.

  • kellyj
    kellyj Member Posts: 75
    edited February 2010

     Thankfully my BRCA test was negative, I have 3 little girls.  I knew it would be, we have no history of cancer in our family.  It is good you are getting more opinions, it is so hard to know the accuracy of new research.  I guess like everything else, not all things work for all people.  I promised myself two years ago that I would not look back after my decision not to do chemo.  I have of course questioned it, but no one can tell you if it would have recurred anyway.  I do think that the tamoxifen quit working for me sometime after the first year. My SEs from the drug went away all of a sudden. Oh well, it will a remain a mystery to me. Must go forward from here! Good luck to you!

    Kelly 

  • don23
    don23 Member Posts: 512
    edited February 2010

    Kelly - I have almost the same stats as you. My tumor was 1.8cm though. I too had a double mastectomy and my oncotype score was 11. I did not do chemo and have had no side effects being on tamoxifen. Did you get your ovaries out after your recurrence or before? Given the fact that you had a double mastectomy how did you find the lump. Was it noticeable by looking or did you feel it? I am nervous that I didn't do chemo but was told that it would not benefit me but I'm still scared of recurrence.

  • chasinghope
    chasinghope Member Posts: 126
    edited July 2010
    My opinion is do the chemo. I am pretty much the same diagnoses though I am grade 3, little different  but the goal is to hit it hard while you still can. I'm 38, chemo is doable, it's not pleasent but it's doable. I am half way through it. I had a bilateral as well. It's a personal choice, the hardest thing is knowing you can't go back and undo a wrong decision. I went with the chemo because if I didn't hit it hard when it came back I would only have myself to blame, thi way, if it comes back, I know, in my heart, I did everything I could. Hope I helped and good luck.
  • kellyj
    kellyj Member Posts: 75
    edited February 2010

    don23,

    I did feel the new lump at about the 11 oclock position with the original cancer being at 9 oclock.  It was sitting on top of the implant, luckily.   I will be getting my ovaries out after I am done with radiation mostly so I can be put on a new antiestrogen drug.  I realize some people never have side effects with drugs. I just know I was having many hot flashes per day and a lack of a period. My onc listened to my concerns, but said they hope that the side effects do decrease with drugs without affecting the effectiveness.  Who knows, I have no proof tamoxifen wasn't working.

  • tiff2008
    tiff2008 Member Posts: 278
    edited February 2010

    I was Stage 1, Grade 2, ER/PR++, HER -. Onco score of 17 and 42 yrs old.  I had a lumpectomy with clear margins, no nodes affected.  I got 2 opinions on the chemo decision, both doctors told me they would do it, mostly because of my young age :) I remember feeling like maybe I wouldn't have chemo due to only 3-4% help, until my husband quickly said "why wouldn't you do it?" he thought it was a no-brainer.  I remember thinking "wow, okay"??  I decided to go thru with chemo.  A/C x4 , radiation and currently taking Tomoxifen.  The chemo wasn't too bad.  I tried to embrace my baldness, kept working out and working most of the time.  Now I'm 2 years cancer free still taking Tomoxifen along with Effexor.  The first year of Tomox I had alot of hot flashes and recently they've improved some.  I have a period every 4 months, which is kind of strange but I guess those ovaries don't want to give up. 

    I remember everyone telling me that the "middle ground" was a tough decision for the chemo. Today I'm really happy with my decisions. 

    Listen to your heart and you'll make the best decision for you.

    Take care,

    Tiff 

  • ThereIsHope
    ThereIsHope Member Posts: 62
    edited February 2010

    Well, this is the day I have been waiting for.  I received my Oncotype score and it is 18.  I had the feeling that it was going to come back mid-range because nothing about having this cancer has worked out as being a "white or black" decision process...always a "gray" area to muddle through.  My surgeon told me it was my choice about chemo.  I told him I needed his guidance and that I wanted to know if he would agree with me if I chose to do chemo so that I could be sure I had done everything I possibly could to prevent it from coming back.  He said that given my young age? (61), and strong family history of cancer, he believed chemo was a good choice.  He would have advised a family member with the same results to do the same. He is referring me to an oncologist and now I will have to wait AGAIN until March 8th.  I shouldn't complain because that will give me time to prepare myself for what is to come.  Actually, my daughter (who is an RN) said that she knew it was a good decision for me to proceed with chemo given the type of person that I am.  She said if your score had been lower and you didn't have the option to choose, you would have always wondered if you should have done more.  So, I'm going to "kick butt" and get through this like so many others have.  Again, so glad to have this web site to lean on.  Thanks for listening!  Karen

  • limegreen
    limegreen Member Posts: 124
    edited February 2010

    Today I faxed paperwork to the 2 docs for my second opinions next week.  I am looking forward to talking with them and getting their feedback.

    ThereIsHope, tiff 2008, chasinghope, kellyj, thank you so much for your feedback!  I thought the bi-lat mast. decision was hard......I am so borderline I keep going back and forth.  Does the risk of taking chemo outweigh the benefits?  I don't know yet.  Is the 3-4% benefit significant enough to live with chemo side effects for the rest of my life?  I don't know yet.

    I feel like I have done all the right things so far up to this point, but now I feel like I am walking on eggshells.  When I made my decision for bi-lat mast., I knew once the decision was carried out there was no going back and I felt peace with it and it was okay.  I know that is going to be the same for the chemo decision, but I am frustrated that there isn't any more testing or information that could tip the balance for me.  I don't feel peace with this yet.

  • kellyj
    kellyj Member Posts: 75
    edited February 2010

    With the additional opinions I am sure you will be able to make the best decision for yourself!  I remember how hard it was to decide if the 3-4% was worth it. I did feel at peace after my third opinion. Two against it, and one for it.  The two against chemo were from research hospitals and were well informed on the oncotype , while the doc for chemo was not.  Good luck and keep us posted on your decision.

    Kelly 

  • wallycat
    wallycat Member Posts: 3,227
    edited February 2010

    I was also an Oncotype 20.  I had ILC and my tumor was 1.8cm.

    I had 3 doctors tell me (2 oncologists and 1 breast surgeon) that typically anything less than 4% benefit of chemo is considered not beneficial.  Of course, you have to do what you feel comfortable with and you will be the one living with your decision.

    My onco said that chemo has its own risks, ups your risk of other types of cancer by 1-2%....

    I opted out.

  • SHUSHA
    SHUSHA Member Posts: 1
    edited February 2010

    HI,

    I discovered the small lump myself and went to my gyne , who refused to check the lump as he had no charge out code to OHIP ( I am from canada) and asked me to see my GP ( took me 3 weeks to get an Appt) and showed her my little lump which was growing rapidly and she sent me for an U/S which revealed that there was something and quick tests follwed - mamm/U.s/Biopsy which revealed I had DC and it was larger than they thought it was i have ended up having to go through chemo ( worst part of it) 4 sessions of TAC and follwed by 38 sessions of radiation (30+8 targeted) and started Herceptin alongside the radition. The radiation was painful as the skin tore so easily. if anyone has it ( make sure to speak to the radiation nurse in charge and they give something like novacain mixed with some cream which helps numb the pain and helps the healing process.
    I have completed 7/18 herceptin ( have a powere port - hate it everytime they pierce it - tho i use EMLA)
    When  I told my oncologist I had severe fatigue and dryness in my nose and with nose bleeds and almost every morning have post nasal drip and i have to gargle and bring out the dried mucus with blood. It is terrible.
    Also, i hate peanut butter or any dairy products as the smell still puts me off. does anyone have that.
    Otherwise i feel fine, and have started my exercise routine with my trainer and have a great appetitie. MY hair has come back thicke than ever and i am a platinum /dark hair person and people think it is cool as i am keeping up with the latest trend in hair style. I have to tel them that all i had to do for this thick hair and color is to get cancer / have chmo /lose all my hair / and then it comes back like this.
    No one believes that i have cancer and everyone compliments me on my skin which is better than ever and no wrinkles at all as i feel the herceptin has thinned my skin a great deal.
    I do not think about what i have , i only think about how i can make my life better and feel better so i tend not to talk about it as i feel we give life to something that we dont want as permanent residents in us.
     Love reading all your posts and I mentioned to my oncologist about the many ladies who have similar problems with  fatigue and nose bleeds -  he dismissed me wiht a "HERCEPTIN DOES not casue it" . So i am really happy i came upon this site. thanks ladies and may we live and love for many years.

    The Juravinski Cancer centre i go to has a great team of professionals and the care they give is amazing. I take the relaxation treatments they give patients such as reflexology / reiki/ yoga.

    My friends and family esp my hubby was and is a gret support for me and without them i would be lost. I wish all of you had the same support as i have. I worked and work right through my treatment from home but cannot do much home work / chores like before as i am very tired and hurt a lot if i stand for long periods of time. I look fwd to better days

     Cheers

    Usha Meister

  • Plils
    Plils Member Posts: 146
    edited April 2011

    Hi everyone,

    I am so confussed, I am Stage 1, Grade 3, ER+/PR+, HER-. IDC,  Had lumpectomy cear margins and 0/6 nodes neg.  Mom diagnosed with IDC 7 months ago, grandmother ovarian cancer, other grandmother colon cancer.  Waiting for Oncotype and genetic testing to decide what to do.  Help anyone in the with the same diagonised what discission did you make and how do you feel.  Oh I am 46 years old and scared to death on what to do... I just what to get through this bad dream and live my life. You are all wonderful supporters and have helped us newbies so much and for that I thank you all and look forward to a new friendship with all of you.

     Many hugs and xoxoxxo  Pam

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2011

    Hi plils,

    It is perfectly understandable that you are confused...we all know how that feels. I dont have the same diagnosis you have but I did have a lumpectomy followed by another surgery to even the margins. I did have a micromet in the SN so I went from Stage 1 to 2. The Oncotype test is going to make a HUGE difference in your choice of treatment. That is of course TBD by your ONC. Some ONC decide on treatment regardless of the test. Mine didnt. She ordered the test and I am so glad she did for a myriad of reasons. My score came back in 10 days at 11 and my cancer was non-aggressive. Needless to say I was relieved. It meant NO chemo and I do feel a little more positive about the chance of recurrence. We all know there is no perfect science but this test is a good barometer for the ONC. You are young and even though you have a family history, as I do, the test is about the biology of your cancer. It does have some bearing on our overall chances but it won't be a factor in your test results. My discussion with my BS was that the ONC would decide the treatment.You have no node involvement which is good but your cancer is larger than mine which is Grade 1. Regardless this is not the death sentence. Yours was caught early too. Remember to be your own advocate. You need your doctors expertise but at the end of the day the decision is yours. Weigh the pros and cons and ask questions and come back here anytime for support. This forum has been a Godsend for me and it will be for you too. Good luck. Let us know when you get your test results. You are in our prayers.....diane

  • Plils
    Plils Member Posts: 146
    edited April 2011

    Hi Diane,

     I just received a call and my score was 17, which I am happy about.  She said the Dr. would call and explain everything to me and what they are thinkin, now we are waiting on the genetic BRCA to come back, which could change everything.  My next appointment is 5/12 and hope to know all the answers then. I will keep you posted.

    How are you feeling and how is radiation going for you.

    Pam 

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