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

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  • bahamamom3
    bahamamom3 Member Posts: 285
    edited October 2011

    I am in a similar situation.  First they said my cancer was stage 1, but as I understand it when the first sentinol node tested positive, that changed me to state 2.  The grade had been 1, and I have not been told that, that has changed.  The surgeon took out 17 nodes after the first one was positive, and none of the others had cancer cells.  The tumor in the first node was 3.5 mm in size.  They did bone anc CT scans, and no cells showed up in any organs or in my bones.  I know that my cancer is receptive to both hormones, and so I am wondering if they will choose some kind of hormone therapy for me instead of chemo.  Since I had a partial, they will definitely do the radiation.  It sounds like they are taking out and killing any cance cells that may be remaining in my breast area, but I am worried that one or more cells may have gotten through in the bloodstream and travelled to some other part of my body.  Since it is supposed to be slow growing, it seems to me that it could take several years to notice symptoms of that having happened.  I was told that they do not follow up with more scans in later years, so I am afraid that I will always be wondering if one day the terrible news will arrive that I have cancer in some major organ or the blood.  From what I was told by my surgeon, the oncologist (whom I met briefly in the hospital but will not have an appoiuntment with until 2 m ore weeks) will put into some computer all of my stats and then tell me which type of medical intervention will give me the best survival rates.  Like he said she may say chemo gives you 4% recurrence and hormone gives you 3%.  Then they would let me decide.  Part of me says that the numbers are not significant to matter-just go with the one for which I will have the least side effects, but then I don't ever want to look back on this and say I should have picked the other one.  Any of you who have more stories to tell or advice I would appreciate hearing it.

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

    I also had been told I had a stage one tumor but then a trace amount of cancer showed in one node (.38mm).. and I had chemo (6 tx of TC) and will also take tamoxifen for 5 years. I also chose to have a bilat MX instead of radiation... the MX was my choice .. all doctors said the radiation after lumpectomy was all that was medically necessary, but I wanted to do all I could do for survival... the chemo and tamoxifen have never been a debate.. doc says it was necessary... anytime cancer travels to the nodes there's a risk of it spreading, so chemo was my insurance... and I don't regret it all.

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2011

    bahamamom3, you don't mention your age or if you are pre-menopausal or post. These bits of information have a lot to do with your choices.  Also, you probably read about the Oncotype test.  Your MO should talk with you about this.  Even with one positive node, the test can be done.  That test will tell you and your doctor if YOUR tumor will respond to chemo.  Ladies with your stats do not have to always do chemo unless perhaps you are young... say 30-40ish then they will tell you to do the chemo because you are probably healthy and you shouldn't have got cancer to begin with (so to speak).  There is also family history to consider.

    My BS explained to me in the beginning that way too many women were being treated with chemo when they didn't have to.  I would have NEVER taken the chemo route unless ALL THE CARDS pointed toward it.  Who the heck wants to over medicate themselves?  Early stages, low grades and nodes that would have never even been caught a few years ago because of technology are all good signs.

    RADS and hormone therapy are definitely in your future and if you really want to see your stats, go to cancermath. com and put in all your information.  You can see for yourself the chemo versus no chemo route even without the Oncotype score.  Good luck in your decisions.

    BTW,  I'm 47, pre-menopausal, my stats are below and my Oncotype was a 23.  2 nodes and a tumor that was hanging out very close to my axillary kinda left me with no choice.  I also have young children and although I tried everything (including getting a 2nd opinion on my final pathology from Johns Hopkins), to stay away from chemo... here I sit getting ready for my 3rd treatment of  TCx4.  Oh ya... kept the breasts... like them and glad I did ;-).

  • jehannebc
    jehannebc Member Posts: 2
    edited October 2011

    First of all, I want to say how grateful I am to have found these boards and this topic. I have been reading regularly since I was diagnosed, but this is my first post. I just swallowed my first tamoxifen tablet, having decided this morning with my oncologist not to do the chemo. I just wasn't persuaded that it would do any good, based almost entirely on my oncotype score of 16 and almost obsessive reading about the studies, the test, etc. Now, no more of that. I've made the call and am ready to move forward. Appointment with the radiation doc at 2:00 pm. Has anyone else who decided to skip chemo had their doctor start immediately with tamoxifen?

  • jehannebc
    jehannebc Member Posts: 2
    edited October 2011

    I thought the particulars of my diagnosis were going to show in the signature, but I don't see them. Anyway, the relevant part here is that I had one positive node, but elected not to do chemo.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2011

    After skipping chemo, I went to RADs & started Tamox afterwards. I have read of Tamox & RADs at the same time. The majority seem to start after RADs.

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

    They want to not starts rads and tamox right at the same time, so if there are unusual SE's there are less variables.

  • TAPPY
    TAPPY Member Posts: 283
    edited October 2011

    I just felt that once it was in one lymp node it could be anywhere.  My onoc said with high ER/PR+  that chemo would give me a better chance of no reoccurance and that it is a middle of the road aggressive cancer type.  

     Well we all knows what happens when you stand in the middle of the road.

     I guess I have seen it come back to many times with other friends who had a better prognosis that I did - that I went with the chemo. My Onc  dd not every suggest NOT doing chemo.     I  am young (51) and strong enough to handle it,  if I would have been older with other issues I may have just went with the Tamox.

  • pq2
    pq2 Member Posts: 212
    edited October 2011

    With 11 oncs agreeing and you living in one of the best medical cities in the world, especially for women's cancers, I'm assuming this is the new standard of care for this dx. They will test and scan again after treatment and chemo is always an option...since it is likely not a fast growing cancer you are in good hands..methinks! 

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited October 2011

    TAPPY, I felt the same way you did.  My BS and MO both thought that if the BC reached a lymph node, it could be lurking anywhere.  I was 59 years old and otherwise in good health.  I tolerated 4 rounds of TC very well and have no regrets about choosing chemo.

  • etherize
    etherize Member Posts: 423
    edited October 2011

    Hello all,

    I am only halfway through reading this thread but I'm sure glad I found it!  I am considering no chemo, because the medications I take for HIV interact strongly/severely with most of the chemo drugs. 

    My PCP said I could stop the HIV meds during chemo, but that scares me.  For one thing, he says my immune system is in good shape -- but that will change as soon as I stop the HIV meds, not to mention hitting it with chemo and all the stress of bc treatment.

    Stopping the HIV meds would expose me to many risks, and and would require even more Neupogen shots (even if I don't stop the HIV drugs, I'll have to get more Neupogen shots than normal).  

    My MO says if I choose to stay on the HIV meds, she would give me a much, much lower dose of T/C or I could do a low dose of CMF.  The side effects would still likely be significant, but fewer, but the efficacy would be much less, too.  The added reduction in risk of recurrence would be 6-7%.  If I stop the HIV meds, I think the risk reduction would be 10%.

    She already convinced me to have ALND in case I couldn't tolerate chemo -- saying it would give me more protection against regional recurrence.   But all 15 of the nodes removed were negative.  She says hormone therapy is the most important part of treatment for me.  I can't find my path report that shows the % of ER+ and PR+ but one was 80% and I think the other was 70%.

    I do have LVI and extracapsular invasion (is that the same thing?) and a Grade 3 tumor.  I was fully expecting more positive nodes, in which case I would not be as hesitant about chemo.

    I am almost 55, and according to a recent HIV magazine, people in my situation have a life-expectancy of about 62.  I just don't know if chemo is worth it for me.  

    I know none of you are in the same situation and I have to make the decision alone, but I would love ANY input you have. 

  • TAPPY
    TAPPY Member Posts: 283
    edited October 2011

    I do think age and/or  current health situation would make a difference in this descision.

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

    FOR ME.. I agree with Tappy and Elizabeth.., I turned 48 on the day of my first chemo.. I had 6tx of TC and had no problems... I had a microscopic positive node, but node involvement is node involvement in my book and I too have known or read about too many recurrances.. and I plan to live another 50 years, so I wanted to do everything I could... Etherize, I agree that you have too many other issues and could compromise your health.

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2011

    etherize, IMO, your age and health status has a lot to do with not only your decision, but anyone's decision.  If you go to the Johns Hopkins website where they have an "Ask an Expert" section, you may find some great information there... I know I did.

    http://www.hopkinsbreastcenter.org/services/ask_expert

    Also, I wanted NOTHING to do with chemo.  I was told by my BS that way too many women are over medicated with chemo, because as it stands we just don't know enough and the doctors want to do everything they can.  If they do nothing, then there is always liability issues and of course in our society today WE OVER MEDICATE.  Not only that, I believe there are many out there who are so into over-treating themselves, rather then figure out other ways to approach illness.  Depression, diabetes, heart problems, sexual problems... the list goes on.

    I'm not saying skip chemo, in fact I'm stuck with T/Cx4 right now, but the experts at Johns Hopkins told me that micomets are nothing.  Years ago when technology was less advanced, many ladies had micromets and nothing became of them, but now that we can see them and of course doctors have to do something.

    There are so many Clinical Trials going on now to figure out those who really need to do chemo and those that would be fine with other treatments (surgery/RADS/HR).  Oncotype is one of the newest tests, but there are so many other Trials.  Even the types of chemo (1st generation vs. 3rd generation) and number of treatments (x4 vs x6) are being figured out to get the right people into chemo and keep the ones who it could hurt out.

    Good luck in your decisions.  I know that choosing chemo was one of the hardest decisions I have probably ever made.

  • etherize
    etherize Member Posts: 423
    edited October 2011

    Thank you TAPPY and bdavis, for your input!  I didn't realize I'd written a book up there. ;)  So much to consider!  

  • pinkchicago
    pinkchicago Member Posts: 15
    edited January 2012

    I will be meeting with my docs tomorrow.  I'm in a similar situation with 2 positive nodes, E/P+, Stage 2, ILC, but low ONCA score. I agreed to a clinical trial to get my ONCA score done and it came back as 13.   I was shocked to see so many of you out there in similar situations.

    I will keep you posted on my decision!  I am pretty anti-chemo, but also scared....

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2012

    It happened to me, but mainly because of my low Oncotype DX score. If it had been in even the questionable category I'd be getting chemo. I'm glad you posted this. People shouldn't needlessly suffer through chemo if it will not benefit them. I would have done it in a heart beat if the docs said I should, but I am relieved I don't have to.

  • pinkchicago
    pinkchicago Member Posts: 15
    edited January 2012

    Hi Yorkie Mom.  Did you get chemo? I wasn't sure who you were replying to. .  I am new to these message boards,so forgive me!

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2012

    Oh, sorry pinkchicago. No, It  have not had chemo. I am now on Aromasin and will start rads last week in January. There are numerous factors that went into this decision. My age, 63, low grade tumor, and Oncotype score. Also, the 2 nodes were minimally involved. I feel confident that this is the correct decision for me.

  • pinkchicago
    pinkchicago Member Posts: 15
    edited January 2012

    Does anyone know if you do radiation and hormone only, does the hormone ensure if a stray cancer cell left to another organ, like your liver, does the hormone therapy stop it from duplicating?  

  • pinkchicago
    pinkchicago Member Posts: 15
    edited January 2012

    What did you decide?  I'm in a similar boat...

  • pupmom
    pupmom Member Posts: 5,068
    edited January 2012

    Hi pinkchicago, not sure if you were asking me, but I am following the docs' advice. No chemo. I'm on hormonals and will start rads late January. 

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2012

    Pink... the hormone therapy basically caps the receptors from being fed by estrogen.. it won't kill the cancer if cancer cells have escaped.. only radiation and chemo kill the cancer cells... the radiation kills it locally and chemo kills it distantly... the hormone drugs will only help with the estrogen portion of the equation... and other things may feed a cancer... so I would say that if a cancer cell escaped to the liver and it was a highly estrogen fed cancer and you are on hormone therapy, it would slow the growth but not stop it... just as chemo would shrink it, but not kill it if it has already landed in the liver. Chemo only kills cells on route.

  • Chris13
    Chris13 Member Posts: 254
    edited May 2012

    Bump. Anyone else? I had one node and UMX/DIEP. ILC in all four tumors in the now absent breast. Tumors low grade and not too large, considering they were ILC, which spreads around. My oncotype is being developed,and breast surgeon and I both think it may come back in the "gray" zone.

     Any ILC ladies in similar situations?

  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2012

    Chris-You might consider the SWOG 1007 study for node positve women with low to intermediate oncotypes.(If your oncotype score doesn't sway you)

  • Chris13
    Chris13 Member Posts: 254
    edited May 2012

    Thanks, coraleliz. Not sure if they are still accepting participants, but I would need to take the chance of getting chemo. Wish the study had some answers now!

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    Chris... one positive node is enough for me... better to be safe and have chemo.

  • Chris13
    Chris13 Member Posts: 254
    edited May 2012

    Of course I will wait for more info....but chemo brain is a real problem that is finally being admitted. For some it is long lasting, even permanent. That's my biggest concern about chemo SEs.

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    I had a lot of fears about chemo and SE and in the end experienced very few SE, and took precautions... like icing my nails to avoid nail lifting, and drinking lots of fluids to help flush the toxins out. Of course there are no guarantees, but for me, I knew I needed to zap any rogue cells.. and I was willing to deal with some SE... chemobrain was also a fear, but I don't think I had any of that... but maybe I should ask my family... ha ha.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    I will admit I was straight up terrified of chemobrain. 

    I have to say I am seeing scenarios where people are not doing chemo, which 2 years ago would have been very different.

    At that time me and my one little node were rebels to decline. 

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