Node Positive and NO chemo...any of you ladies have input?

Sereena
Sereena Member Posts: 99
edited November 2017 in Stage I Breast Cancer

Stage II, Grade 1, 3 positive nodes and NO chemo. Maybe soon to come is a change in the "standard of care" for us women with stats like mine. Would love to hear some input and opinions on this. Yes, 11 oncs all agree with my treatment, radiation and AI's so I should be at ease. I guess I am but want to hear from others like me!

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Comments

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited February 2011

    That is a little weird. What was your ER/PR/Her status? And did you have micrometastases in the nodes or what? The grade 1 says it's not aggressive, but the three lymph nodes say otherwise. I had grade 2 and only one positive node (strong ER/PR positive and HER-) and my doctors decided on chemo and no radiation. I DID question the chemo part myself as by what I reserached, on strong ER/PR positive (mien was 98% and 96% respectively) chemo does nto do much good, the anti-hormone therapy does.

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    I am very strong ER/PR+ and ki67 was only 2%. Oncotype dx score was 10. My onco took my case to a clinical tumor conference and 10 oncs, a chief of oncology as well as himself agreed that I would only gain a 1% and at most 2% benefit from chemo and infact would have more benefit from hormonal therapy. The side effects not worth the risk. I think I have received more than just a second opinion and I do have a sense of relief although we all know cancer is not to be trusted so that thought does sit in the back of my head.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited February 2011

    I think it is because of your grade 1. Chemo attacks fast dividing cells, while a grade 1 tumor is very slow growing, so chemo wouldn't affect it much. It would be of value only if you had any of it "escaped" somewhere and of a different grade than the primary. Did they ever do a PET scan on you?

  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    I'm here. Grade 2. One positive node, a little larger than a micro. Oncotypd of 22. No chemo. A tought decision, but for me, not worth the 2-4 percent benefit.

    Yea thread!!!!

  • Lee7
    Lee7 Member Posts: 657
    edited February 2011

    Grade 2 . Onco 20.  I think 1 more % point up.  Same thoughts.

  • amoccia53160
    amoccia53160 Member Posts: 57
    edited February 2011

    Sorry to disagree with 11 oncs but I would go with the chemo.  If it is in the lymph nodes it could have traveled elsewhere in the body.  I like the additional 2% benefit.  I like anything that fights cancer! 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    None of us are saying this decision is for everyone.

    But based on other health issues,I was deeply concerned chemo could make other problems worse.

    My decison was made during San Antonio, and when the new studies came out making the benefit even less, that did it.

    6 or 7 percent I might have gone for it. But with a 2-4% bene and at a 14% RS...that meant there was as little as a 1 in 7 chance it would do any good.

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

    My path report just came back after a lumpectomy. I had 1 node positive. The BS was surprised. He said also they have to take out more tissue. I am really upset about this. I know he doesnt know for sure when he does the surgery but I was really blindsided. Dont understand why the Pathologist is on standby for the surgery and didnt know he needed to take out more tissue. I have decided I am going to have a mx. I wish I had done it to begin with. I had a so called classic lumpectomy case; Stage 1 and Grade 1. Now I am Stage 2. My BS said it is automatic for chemo when it is in the nodes. He said it was a small deposit but it is still there. Some of you didnt have to have chemo so I am wondering why I have to. My mother had BC at age 68 in 1987 and they did a mx. None of her cancer was in her nodes.

  • timerdog
    timerdog Member Posts: 159
    edited February 2011

    Hi Sereena,

     I had the same results with my oncologist. My tumor was small and a grade 2. I was told no chemo just tamox for 5 years. I am more then comfortable with their decision. 

  • nikola
    nikola Member Posts: 466
    edited February 2011

    Chemo would not work as well on grade I cancers as they are slow dividing cancers. Also, you are starting with AI so you are either in menopause or you had your ovaries out. Your age would also play part in deciding about Tx.

  • greenfrog
    greenfrog Member Posts: 269
    edited February 2011

    What about vascular invasion? Did you have any? That is a key prognostic indicator regardless of grading.

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    Greenfrog, I had no vascular invasion and yes that may have changed my decision.

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    edwards, your surgeon probably had you go back for surgery to get clear margins. You are stage II because you had lymph node involvement even if it is only microscopic involvement. You don't say if you are pre or post menopausal. Your doctor may not be as cutting edge as my doctors in Boston and therefore still prescribes chemo no matter what. Did he offer you the oncotype test which would tell you how much you may or may not benfit from chemo.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    @ Edwards...my BS was surprised too. I wonder why they are always so darn surprised!!!

    30% of tumors my size have positive nodes. 

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited February 2011

    Sereena - actually you can be Stage II without lymph node involvement - if the tumor is between 2 and 5 cm.

  • aussieched
    aussieched Member Posts: 244
    edited February 2011

    Hi Seerena,

    I think we discussed a bit of this on an earlier thread you had.  As before, count me into this equation. I was originally told I was node negative also, until a week later when they dissected the SN up and found it on the outside of the node.  They normally only cut the node in half, and look on the inside when you have the lumpectomy and they have you on the table.  If they don't find anything at that stage in the middle of the node, that is all they do.  Consequently I had to go back the following week for further surgery to get clear margins and have a further 29 nodes out.

    I was 80% for both Er & Pr.  Originally I was told it would be chemo, and at that stage in Australia, there was not a choice for Oncotype DX.  Then after some discussion, they realised after 2 surgeries that I was 52 years old, not 42 years old that the admin girl had punched into the computer at my first consult.  When I cleared up this little mistake they then said I had another option to chemo, and that was an ooophorectomy.  Went back for my 3rd surgery in 3 weeks, and had the little buggers out  I then had radiation and am currently on Femara, which has been giving me hell for the last 3.5 years.  So yes I had 1 positive node, and no chemo.  I still worry about the decision, but too late now.

    Seerena, what % were your er & pr receptors?

    Thanks for posting this, as I love to see others now being diagnosed with no chemo, as I have felt alone in the woods on this one for the last 3 years.

    ched

  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    We have our own little "node nation"

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    Day, I was only, in edwards case, pointing out why SHE was stage II. I do know other factors are involved such as tumor size and no nodes.

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    Love it cookiegal...."node nation"..........

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    ched, In answer to your question my ER was 85% and PR was 20% (weak:-() and my ki67 was only 2% which I am very happy about. The 20% PR sits in the back of my mind and kind of worries me a bit but I am still confident with my decision. Also feel more comfort knowing there are so many others who have decided the "No" chemo way. You're not alone!

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

    Sereena - I am post-menopausal. I understand about the margins just not looking forward to chopping on a already battered breast again. I do have a question for you guys. I asked my BS why if there is cancer, even it is microscopic, in a node why they are not testing the other nodes? His asst said because they have found because it is so small the likelihood of my having cancer in the other nodes is slim...anyone agree or understand that? Also he has not scheduled any of the tests some of you have had like a bone scan or petscan. Is that something the oncologist does? He said some drs schedule breast MRIs but he didnt think I needed to have that done. Although my cancer is small it is close to the nodes. I see my BS on Tuesday and hopefully the oncologist next week if I can get in. Does the oncologist schedule the test to evaluate recurrence?

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    edwards750, My first surgery was to remove the suspect area and 8 days later to find out it was invasive was a huge shock to both me and the BS. I did have a negative mammogram 10 months prior. My 2nd surgery was to  go in and get clear margins of the tumor area and a few lymph nodes. A pathologist does a quick test on the nodes (during surgery) and in my case it was 4. While he/she is doing this test the BS moves on to removing the "C" area and if the pathologist says the nodes are neg. she closes up that area, if they are positive the BS will remove all the nodes. My nodes were neg. so surgery done. There is a 1% chance of a false/negative. 10 days after surgery I found out 3 of the 4 nodes were positive. 2 of the nodes had microcopic cells and 1 node had a 5mm tumor, small but still in the nodes. Bummer!!!! I had to go in for a 3rd surgery (ALND) and the BS took out 22 more nodes. A tough recovery, very painful. It was my oncologist who ordered the CAT Scan of my chest/lungs, abdominal (kidney, liver) area. Also my onc was the one who ordered blood tests to confirm menopause and also to check liver. Yes, it is the onc who orders the oncotype dx test which will give you your recurrence score. Mine came back at 10 which is in the middle of low risk (7% recurrence) so no chemo for me. Only a 1-2% benefit at best. Not worth the risk of serious side effects. You don't say if you are ILC or IDC. How many nodes were removed and what size was your tumor? My tumor was in the upper right quandrant, very close to my underarm. I also had a 2nd area with no size just 4 microscopic spots.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited February 2011

    I had stage IIb with 2 positive nodes, 90% ER+/PR-/Her neg.  I was told the chemo would provide a 10% benefit with regard to mortality and recurrence risks, but since then I have found conflicting statistics that indicate it may have only been a 4-6% improvement.  I have had such severe side effects from the chemo that will most likely be with me long-term which have so adversely affected my quality-of-life that if I had  known how bad they were and had been offered the option of not doing chemo, I would have chosen to do only tamoxifen.  After finishing chemo, I started tamoxifen, but had such severe side effects that just compounded those left over from the chemo that I was completely nonfunctional, and so I stopped it.  I think if I had not had the chemo and had done only tamoxifen, I might've been able to handle the tamoxifen SEs, and it turns out that tamoxifen alone would have given me about the same risk reduction as the chemo.  According to statistics, the combination of chemo plus tamoxifen should have given me up to a 20% benefit, but statistics apply only to large populations and cannot be applied to any individual person. 

    Also, the oncotype is validated for recurrence risk in node-negative, but my oncologist did suggest it could be used in my case, but I declined.... don't remember exactly what I was thinking at the time!  

    On the positive side, my PET scan after chemo was cancer-free, so I do think the chemo did its job of killing the cancer, and am very comfortable with my decisions for declining further therapy at this time.  I think each person is an individual, and you have to weigh the benefits and the risks of treatment, and you need to listen to that little "inner voice" that helps guide you in making your decisions.  I tend to want a very low risk (less than 1%) with a very high benefit (greater than 10%), but people like my mother are willing to take higher risk for lower benefit (she wants that last 2%!! - and she is an 18-year suvivor!)  You need to be able to talk with your onc to discuss not only benefits and risks, but also quality of life issues BEFORE you start down a treatment pathway.  Best wishes and lots of positive vibes and prayers for all of you!

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

    Sereena - I am IDC and the tumor was 2mm. Don't know what the size was determined to be after the surgery. He just said smaller than first thought. They didnt remove any nodes because according to the BS they did not see the need given the low incidence of cancer in one node. He is a well known very well respected BS but I am considering getting another opinion. Maybe the oncologist satisfy my concerns next week. After all she is really the expert.

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2011

    One thing that I learned during my chemo was that some chemotheray drugs don't target only fast-growing cells.  For example carboplatin (which I had) works on cells that are at rest.  So combining a drug that acts on dividing cells like taxotere with one that works on resting cells like carboplatin can be a good choice in some cases.

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

    Edwards... I came out of m lumpectomy being told I was node negative, but then a week later found out I had a micromet .38mm in my SN... and my tumor was stage 1 (1.9cm)... so now I am stage II and in chemo for 6 treatments. I have been told that with ANY node involvement it is the standard. I also asked about further dissection and was told that there was less than a 1% chance of any further node involvement and lymphodema was too great a risk for the minimal benefit.

    My BS and ONC both agreed on this and also agreed on the chemo. And it does help me sleep knowing I am doing the chemo... so I am fine with that.

    I am more concerned about my old ADH and pappilloma (found on an MRI) and new cancer than I am now about recurring cancer.

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

    Also, PET scans etc are usually not given to stage I or II  due to unnecessary radiation and false positives

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

    I was told it was the standard by one source and not by another. I think once I see the oncologist and evaluate what benefit chemo will or won't be I can make a rational decision. Of course we all want to fight the cancer and will do whatever is necessary to do that I just want to make sure the  benefits outweigh the side effects. At the end of the day it is our choice regardless of what the doctor recommends. One thing I have learned since I was diagnosed with this disease is to do your homework. Talk to people who have gone through it, read all the information available to you about your specific case and breast cancer in general and ask questions. I am not reluctant at all to question why something was done or not done. After all doctors are humans too. Most of the time they agree but not always. Still it is our lives - not their's at stake here.

  • Sereena
    Sereena Member Posts: 99
    edited February 2011

    Having chemo and then radiation when there is node involvement is the "standard of care" but over the last few years they have been learning that in node positive post menopausal women with a grade I tumor chemo is not beneficial and infact hormonal therapy is proving to be more effective. The oncotype dx test will give you the recurrence rate as well as showing the benefit of chemo and/or hormonal therapy. As I had posted before, my onc presented my case at a clinical tumor conference where 11 oncs including a chief of oncology (world renowned) feel hormonal therapy and radiation is my best treatment. Essentially I received 11 second opinions. Also discussed at this conference was the fact that the "standard of care" as we know it will probably  eventually change.

  • Omaz
    Omaz Member Posts: 5,497
    edited February 2011
    Sereena - You are fortunate that you got this information!  Grade 1 has very good prognosis from what I have read.  It is always the reference group when they compare with grade 2 and 3 so you are fortunate there as well.  Standard of care does seem to be always evolving as it should.  It's just tough that it's often left up to us, the patient, to make some of the critical decisions.

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