If you were stage I, did you get chemo???

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  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited January 2011

    I am also 45 and it's been 6 weeks from my BMX.  I was freaking out, anxious, not sleeping before my surgery.  I got some ativan from my onc, and even though I only took a few, it was a godsend on those few occasions I couldn't calm myself down.

    I am also, node neg, ER+ and HER2-, and stage 1.  We will get our greatest benefit from blocking estrogen (tamoxifen).  My oncotype score is 25, solidly in the intermediate range.  It is questionable how much benefit I will receive from chemo, I'm guessing a few percentage points.  When we have the data from the TAILORx study we will know how beneficial chemo is for intermediate oncotype scores.

    I got THREE opinions.  Two recommeded TCx4 and one recommended AC+T dose dense.  I have requested to do TC x 6 after reading many papers and listening to :

    •Breast Cancer Treatment 2010:
    Medical Oncology
    Sara Hurvitz, MD
    http://www.simmsmanncenter.ucla.edu/information/insights_summaries/insights_summaries.asp

    I found that getting as much information as possible really helped me accept that I need chemo and helped me gain a sense of control.

    Let me leave you with something on of the onc's said that really struck me:  "Right now (meaning before recurrence) we have one chance to cure your disease"

     Wishing you the lowest possible oncotype score, good luck!

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

    Science girl, there is a recent study that shows for patients with positive characteristics X4 is as good as if not better than X6.

    I'm not sure if applies to you or all chemos, but I thought I would put it out there, Good luck whatever you chose.

    Sorry I can't make the link clickable.


    Vitals
    Major Finding: With a median follow-up of 4.6 years, the relapse-free survival rate was 91.6% in patients who received six cycles of chemotherapy and 91.8% in those who got four cycles.

    Data Source: The CALGB 40101 trial of 3,173 women with good-risk early breast cancer. 

    http://www.internalmedicinenews.com/news/oncology-hematology/single-article/in-good-risk-breast-cancer-longer-chemotherapy-isn-t-better/5d7486d2d5.html

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

    Mom2Kids - I have chosen BLMX and immediate reconstruction.  Already being aggressive with surgical option. 

    To all, I am sure my son will be OK no matter what - I am just having a harder time worrying about him.  So overwhelmed and surgery was just scheduled for 1/27.  I have not told him about the surgery yet.  Plan to tell him a week or so before the surgery.  I also plan to buy him some special little treats/gifts for the few days I am at the hospital with a special note/card - he will love that.  I have travelled for business so he knows sometimes I am not here for that so he should be ok for the actual surgery dates.  I am planning his first sleep over with his best friend for my surgery date.  He will have some fun things to look forward to at that time which will make me feel better if he is happy/excited.    There is so much to deal with - I hate breast cancer really. 

    I know I have to take this one step at a time and I can get through the surgery first before chemo would start if needed.  I guess I have to explain it to him one step at a time too.  Taking lots of deep breaths and starting some relaxation exercises to calm myself..............

  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited January 2011

    Cookiegal,

    Thanks for the info, it's interesting.  This study started in 2002-2003, it's comparing AC to T alone, I think?  I wonder if it would apply to TC, somehow I think it would.  With other chemos they have shown that going longer / higher doses doesn't improve outcome.  Also the endpoint was about 5 years, wonder if at 15years a difference would arise.  Problem is I'm NOT patient and I want ALL the answers NOW.

     I was thinking about TC x 6 because that is what they are using in the TIC-TAC trial.  Now I might have to rethink going for 6.

    Thanks for you post, it's helpful to me : ) 

    I see you're in NY, I'm in NJ are you getting a snow day like I am today?

  • lago
    lago Member Posts: 17,186
    edited January 2011

    Cookiegal and ScienceGirl it did state at teh end of the article:

    "Dr. Shulman said it's possible that the six-cycle chemotherapy regimen will eventually pay off in terms of fewer distant metastases in this good-prognosis group of patients. Time will tell. But to date there have been 50 breast cancer-related deaths in the six-cycle treatment group and only 41 in those who got four cycles."

    Lets face it they are still trying to figure this all out.

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

    I am 60, had a 1.8 cm IDC, grade 3, barely ER+, no nodes or vascular involvement, with a high oncotype score (50). I decided against chemo because I am also diabetic and my research indicated that diabetics do not tolerate chemo as well as non-diabetics.  I spoke with three oncologists who all wanted me to do chemo.  I asked about the diabetes factor and they all said "diabetics do fine with chemo."   However, published studies in their own research publications (Journal of Clinical Oncology) indicate the opposite.  One oncologist actually suggested that MD Anderson's study of the impact of diabetes on breast cancer outcomes was "irresponsible."  Seriously???  These doctors were either dishonest or uninformed within their own specialty.  I didn't need to be a statistician to understand the situation and make a decision that was right for me.  I just needed to be able to read and comprehend.

    I opted for a lumpectomy, Mammosite radiation and Femara. 

    I have a friend who has had breast cancer three times.  The first time she had lumpectomy and radiation.  Two years later she had a recurrence and had a mastectomy and AC.  That was twelve years ago.  She was trying to get me to "throw the book at breast cancer so it wouldn't come back."  Then, within weeks of my diagnosis, she was diagnosed with a new cancer in her other breast and had a second mastectomy.   This time she opted for no chemo, no anti-hormones, no follow-up at all.

    There is no way to know if chemo will keep you safe from cancer in the future.  If an oncologist uses the word "cure" or "insurance" you should be suspicious.   Do your own research and make your own decision.  Most importantly, understand the potential side effects and decide if you can live with them, should you be the "one" who ends up with heart damage, permanent neuropathy, permanent hair loss, chemo brain, leukemia or whatever else could happen while you try to kill off the cells that "may or may not" be lurking in your body.   Looking at this side of a chemo decision is just as important as considering how you would feel if you passed on chemo and you had a recurrence.

    Michelle

  • lago
    lago Member Posts: 17,186
    edited January 2011

    when I asked my onc "how do you know if this will work" regarding chemo she was honest and said "we don't" She said "we don't even know who are the people who might not even need it. (statistically it showed 40% of the people with my diagnosis that didn't do anymore therapy after chemo were still alive and NED after ten years. She was referring to that 40%).

    For stage I your really need to understand the risk/benefit ratio. Chemo can give you other long term problems. If the risk of developing something from chemo is  higher than preventing recurrence then it makes sense not to take it. It must be so hard to be in a grey area when deciding.

  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited January 2011

    LuvRVing

    Good for you, for making your own decision and owing it!  This is our lives and we have the the final say.

    Regarding diabetes, google "metformin and breast cancer", some interesting stuff.  There are several clinical trials looking at the benefit of the diabetes drug metformin in breast cancer.  I'm sorry to hear about your friend, my Mom also had 3 seperate bouts with breast cancer.  I often wonder if she did a BMX with the first one if she would have had a better outcome, but then I remind myself that she did what was best for her at the time.  That's all any of us can do.

    All the best to you

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

    ScienceGirl - thanks for the kind words.  I am very aware of the metformin clinical trials and I am taking 2000 mg a day.  I intend to take it for the rest of my life.   We bumped up my dose when I discovered my lump because my glucose levels were running a little high and I wanted to keep that under control.  Well, by the time I had surgery, my tumor had shrunk from 3.1 to 1.8 cm, and my mitosis rate had dropped from 90 to 60 (from the pathology reports).  The 1.8 cm tumor was surrounded by dead tissue, which did not seem to be present at the time of the initial Mammotome biopsy. 

    It's interesting that metformin isn't used more extensively in conjunction with breast cancer treatment, in light of the evidence that it disrupts the cancer stem cells.  I guess everyone is waiting for the clinical trials.  I feel almost lucky that I am diabetic and taking the same dose as the clinical trial without having to wait five years for the results. By the way, it's dirt cheap - $10 for a 3 month supply at WalMart - and has minimal side effects, unlike the anti-hormonals.

    Michelle

  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited January 2011

    Oh good, I'm glad your on Metformin!  So does your onc contribute the tumor decrease in size to the increased dose of Metformin?  It must be right? How cool is that.

    My hubby takes it, so I pilfered some of his pills and took it for a month.  My oncologist wasn't really aware of it, so I spent today gathering articles that I will give her tomorrow.  After my chemo is over I'm going to look into getting in one of the clinical trials (taking the chance that I would be in the placebo arm).  Wouldn't that be great if a well studied, low side effect, inexpensive, oral drug would have efficacy in breast cancer.

    PS-DH gets his metformin for free at QuikChek (a store like 7-11) don't know how they can do that?

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

    I just talked to my med onc last week about clinical trials and I think she mentioned the metformin one.  I think they are doing studies at my hospital.  I have not decided if I will participate in any studies yet as I am still waiting for surgery.  Good luck gals!

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

    My onc was not aware of the metformin trials - I provided him the details last Friday.  I am not really sure there is any way to prove what shrunk my tumor, but I'm giving credit to the metformin.  I asked my breast surgeon and she didn't know.  Nothing in the pathology report gave a clue.

    Michelle

  • Desny
    Desny Member Posts: 371
    edited January 2011

    I was stage 1 and my score was 19 in the gray area.  I went into a trial at Sloan and was picked to get chemo. I had 8 treatments of CMF over 6 months.  It wasn't easy but I am glad I did it.  The last 2 treatments were very difficult for me and my hubby.  I am now starting my 4th year on Arimidex.  I also waited 18 months before I started my reconstruction and finished it last year.

    The trial I was part of was to help determine if stage 1 patients benefit from chemo.  That trial is still going on as far as I know.  Good luck to all of my sisters with their choices.

  • YramAL
    YramAL Member Posts: 1,651
    edited January 2011

    Stage 1, Grade 2, Tumor size 1.5 cm, no lymph node involvement, Oncotype score of 11.

    No chemo for me.

    Mary 

  • jezza
    jezza Member Posts: 698
    edited January 2011

    I was Stage 1 Grade 3,,,no node involvement.I opted for bi-lat mast.which was considered pretty radical back when I was diagnosed. I have been NED for 19 years,

    Tough decision when you are in that grey area. There was no oncotype testing back then and even now it is very rare in Australia.

     jezza

  • gutsy
    gutsy Member Posts: 391
    edited January 2011

    Stage 1-2, ER+ PR+ HER-

    no lymphnode involvement. Oncotype score of 20. Yes to chemo.

     Wanted to throw everything at this beast. Chemo was hard but doable.

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

    DesNY was that TailorX?

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

    I was dx'd HER2+++, ER+, PR+ in very late 2001 at age 51, no such thing as Oncotype Dx then, and trastuzumab still in trials so not available either. I did CAF x 6 (refused blood boosters) and wish I hadn't done chemo, as I feel it did negatively affect my life, and that there are far better hormonal treatments including ovarian ablation that would have been better for my particular dx.

    AlaskaAngel

  • oakley
    oakley Member Posts: 206
    edited January 2011

    Hi - not sure if you still need answers, mdg, but:

    You can see my diagnosis below, plus oncotype of 10.  No chemo.

    Good luck with your decision. 

  • nikola
    nikola Member Posts: 466
    edited January 2011

    Stage 1 (although three cancers, combined measuring 2.5 cm), no node involvement, highly ER/PR +. I had mastectomy (bilateral) and had T/C x 4.

    I had SNB and as per my onc there is always 5% of chance cancer escaped, thus chemo. And my age, I was 42 and he said that was still young. He said If I was 20 years older he would be comfortable putting me only on hormonals but not at 42.

    Re: young children. My son was 6 at the time. I had mastectomy and was in hospital for 7 days. We told him I would go to hospital and he knew I had boo-boo that had to be taken out. At first we thought I would stay 5 days and he was fine for 5 days. Then, I had to stay 2 more days and he was very upset. We decided not to tell him about chemo. I bought wig that looked like my hair and he never saw me without it. I was scheduling my chemo on Thursdays (You are usually fine first 2-3 days after chemo due to steroids) and then he was in school/daycare Mon-Frid during my SE. In the evening and night I was able even on days with worst SE to put happy face for 2-3 hours before his bed-time.

    Now, I am 15 weeks post chemo and telling him I would like to cut my hair short to be like him. At first he did not like idea as girls have to have long hair but now he likes it. It is winter and I would go with wig for another month.

    I think we made good decision of not telling our son. I think he would be more scared especially after his reaction to my hospital stay. 

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

    Got my score back.........17.  Ok technically it is in the low range, but why did it have to be the highest number in the low range?  It makes me uneasy that at 17 they don't recommend chemo but at 18 it's a personal choice because they just can't be sure there is benefit or not.  Now what?  I am waiting for the medical oncologist to call me back to answer my questions.  I don't even know at this point what my % rist of recurrence is exactly for that score.  I was hoping it would just come back very low so it wouldn't matter.  Now I will probably seek a second opinion from the other national cancer institute just to see what both medical onc's say.  Isn't any of this going to be easy?  Geez.......I would pour a glass of wine, but it sounds like that will make my cancer come back too!  What's a girl suppose to do?

  • in_cognito
    in_cognito Member Posts: 429
    edited January 2011

    Sorry you didn't get a lower score - but you are still considered in the low range.  My score was 14, which was a 9% recurrance rate with Tamoxifen.  I chose to do 4 rounds of TC.  I'm 37 and had a newborn and a 2 year old at the time.  I got two opinions from NCI locations and both recommended chemo.  I did not have any major issues with side-effects from chemo.  No regrets.  Good luck!

  • dreaming
    dreaming Member Posts: 473
    edited January 2011

    I wanted aggressive treatments, just in case, my onco,agreed and I had dense slow drip C.F.M with a booster the following week, Two weeks free, all for 9 months.

    I was in my early 40. I am glad with my choice .

  • annettek
    annettek Member Posts: 1,640
    edited January 2011

    MDG- that;s how things go with this damn disease. We pray for a low score, we get it and we;re pissed it isn't a 1! Mine was low too (a 6) and I went with no chemo. Had I needed it, I know in my heart I would have taken it. I mean for heaven's sake, I was radical in choosing a BMX when a lumpectomy was recommended, there is a point you have to trust on some things. My choice was the BMX to avoid both worry of recurrence in other breast and to avoid rads/chemo. But the point is, I had a choice. If numbers and tumor, etc had been different, my choices might have been different. As it was, I had the BMX with immediate reconstruction and have no regrets. Your doctors sound thorough and most will err on the side of you taking chemo if they thought it best. I questioned mine a million times. It is the nature of the beast. Good luck (I was raised outside of the Motor City a Loooooooooooooooooooooooog time ago-you have some great docs up there-where areyou having your surgery? I used to work at Beaumont when I was in school...in the ER letting patients in with no insurance until they caught me!)

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

    mdg - As you can see  my dx is close to yours.  I saw my onc before surgery and based on my biopsy path report he said I would not need chemo.  I did not have the oncotype dx test done.  When I asked my onc why he did not do it he told me he did not think it was necessary and the test is very expensive.  He does not believe in ordering a test just because.  All the information that he needed was on the path report.  I do trust what he told me - my DH has had the same onc for 5 years and we are both very pleased with him. 

    Seek a second opinion if it will put your mind at ease and help you in making your decision.  In the mean time, kick back, relax and pour yourself a nice glass of wine. 

  • Pompeed
    Pompeed Member Posts: 239
    edited January 2011

    Stage I, Grade I, no nodes, ER+/PR+ HER2-.  Oncotype 21.  Diagnosed June 2010 at 60.

    13% chance of distant recurrence within ten years on hormone therapy alone.  That's 13 women out of a 100 who will have another cancer within ten years. Or put the other way round: that's 87 women who will be in the clear at ten years.  Those are good odds.

    9% chance of distant recurrence within ten years with chemo and hormone therapy.  That's 9 women out of 100 within ten years.  That's only four women of the 100 who get an additional benefit from the chemo.

    Onco No. 1: "You must have chemo -- I'm trying to save your life." 

    Onco No. 2: "Chemo is up to you.  We don't know whether it will help or not.  We also don't know where the line is between low risk and middle risk.  I won't press the chemo but I will press the hormones as we know you will benefit from those.  Without them, your risk goes into the unacceptable range."

    Onco No. 3: "Chemo is up to you but think about trying it in case it's of some benefit.  If you can't stand it, you can quit.   Hormones are essential. I understand your concerns about the side effects of those but we have choices and we can switch.  Also, you get a benefit from the hormones even if you have to stop because they last awhile in the body.  Without hormones, your risk is unacceptably high."

    Decided yesterday to skip the chemo.   With my health problems, which will be substantially increased by chemo immune suppressive therapy and, therefore, likely to come back with a vengenece, chemo is a risk I am not willing to take.  I do not wish to spend time making myself unhealthy and then trying to get healthy again.  I'd rather spend the same amount of time keeping myself healthy.

     Sorry I can't help with advice.  It's all a crap shoot and anyone's advice is pretty much as valuable as anyone else's advice.  When the professionals are all over the block, it's very hard to know what to do.  Science is where it is and that's all we have.

  • otter
    otter Member Posts: 6,099
    edited January 2011

    Hi, Pompeed. It's been awhile.  I hope you are healed -- physically, anyway -- and back to riding.

    I can't say I wouldn't have chosen exactly the same thing you did with respect to chemo, if my "stats" and medical history had been the same as yours.  My personal comfort threshold with the Oncotype DX test was 18.  If my score had come back 18 or less, there was no way I would have chosen chemo (and likely no way either of the med oncos I consulted would have recommended it for me). 

    Your estimate that chemo would reduce your absolute risk (of distant recurrence in 10 years etc.) by about 1/3 was exactly what my med onco told me.  In other words, your absolute risk would go from 13% down to approx. 9%.  My onco shook her head sadly when she told me that "one-third" number, and added, "I'm sorry it couldn't be better."

    Alas, and as I've said upstream from here, my score was 26; and my tumor grade was 2.  And, with 5 fewer years of sunrises and sunsets than you've seen, I decided to go with chemo.

    I still like your third oncologist.  I hope you do.  (It really helps to have one doc who will be following us closely with regard to recurrence risk.)

    otter

  • Pompeed
    Pompeed Member Posts: 239
    edited January 2011

    Hello, Otter --

     I know nothing about statistics.  But as I understand the numbers, if I am already one of 87 who will not have a recurrence, then taking the chemo is a complete waste of time at a very high risk of wrecking quality of life now.  And my chances of being one of the 87 are far better than my chances of being one of the 13. 

     And if I am one of the 13, I already know about that risk.  I don't see that taking chemo to MAYBE get that down by only 4 is worth the risk of what the chemo may do to me in terms of wrecking the quality of life I have now and very possibly wrecking it permanently.

    It could also be that I get off this mortal coil before the decade is out from something altogether different without wrecking my quality of life now. 

    I understand your situation and if I were in your shoes -- five years younger and Grade II -- I'd grit my teeth and take the chemo.  I'd be kicking and screaming and shaking my fist at the sky and all else wraught up and cranky but I would see the wisdom of doing it.  .

    I like Onco No. 2 and Onco No. 3.  They are both very calm, no nonsense and in no hurry to get the patient out the door.  I can see why they worked well together when they were fellows at FC.  I'm thinking that a mix of their advice -- get other risks assessed just in case and do the therapy we do know will be beneficial -- is probably very reasonable.  And on top of that, rigid surveillance for the rest of my life.  Which isn't new: it's not that I wasn't at risk for getting BC.  I was and I knew it and I was under constant surveillance..  I just wasn't thought to be at risk for it at this age.

    No riding yet.  Plastic surgeon's rule.  But I do get to go to the stable and brush my horse.  It's part of my PT: curry and brush, brush and curry.  I can't haul water buckets or the muck bucket or wield the barrow yet either.  Working up to that.  Have gotten all but about 2% of normal range of motion back so far (physical terrorist says it will come) and now just starting strength recovery and regaining lost muscle.  PT is HARD work.

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

    AnnetteK - I am getting treated at U of M - they are 12th in the nation for oncology.  I also have been getting second opinions from Karmanos Cancer Center.  I am going to get a second opinion on this for sure.  I may even see what the onc's at Beaumont have to say. 

  • nikola
    nikola Member Posts: 466
    edited January 2011

    My onc put it this way: You are 42, have 6-year old son. You have 25% chance of getting it back within 10 years without any Tx, 16% with hormonal therapy alone and 9% with chemo and hormonal. At 52 You would still be young and your son would still be kid. He said if I was at least 20 years older he would give me choice of doing only hormonal. Age is very important.

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