After 25 years

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Gail48
Gail48 Member Posts: 11

Hello Everyone,

I am 61 years old and have been diagnosed with a new primary breast cancer.  I had bc 25 years ago.  Had a mast. and no other treatment since I had a total hysterectomy.  Now 25 years later I have a new breast cancer in remaining breast.  It is 1.6 cm., stage 2, er/pr +, her- and clear nodes. I chose to have another mast.  If I take  Arimidex stats show I have a 88% chance of no recurrence, but if I take Arimidex plus chemo (4 rd of C/T) I have a 93% chance of no recurrence-5% difference.  The onc recommends doing the chemo and AI but I am not convinced that the 5% benefit from chemo  is worth the risk of permanent side affects and h--- that goes along with chemo. Has anyone been faced with something similar?  Any input would be greatly appreciated. I have thought about it so much that I am ready to just toss a coin to decide.

 This site is a wealth of information and comfort.  Thanks to everyone for their unselfishness in giving of their personal experience and knowledge. 

Comments

  • idaho
    idaho Member Posts: 1,187
    edited April 2010

    I had the exact same stats....I chose not to do chemo.... I might be sorry, but I made my choice and am glad I didn't go through chemo.   5% just wasnt' worth the risk to me.   Wishing you peace and health.   Tami

  • Susie123
    Susie123 Member Posts: 804
    edited April 2010

    Hi Gail,

    My BC was just a tiny bit larger than yours, but not by much. I was stage 1, grade 1, I'm 49 years old and had the oncotype test. Based on that the oncologist said I should not have chemo. Did you have the oncotype test? My risk was about 5 to 6% and the onco said the risk from the chemo toxicity was 3 to 4% so the absolute benefit would only be 1 to 2%, not enough to do chemo. I'm taking Arimidex for 5 years, but that's all. It's a hard decision to make, and I don't think we will ever know if we made the right one. I asked my oncologist if he follows NCCN guidelines. He does, so I chose to follow his advise, no chemo, and put it in Gods hands.

    I wish you the best with what ever you choose.

    Susie

  • Gail48
    Gail48 Member Posts: 11
    edited April 2010

     Tami,

    Thanks for the information.  It helps.  I wish you many long healthy years ahead.  I think it is so doable.  All we can do is make the best decision for ourself and I am confident that you made the right decision for you.  I made it 25 years with only surgery with no recurrence.   

    Susie,

     Asked my onc. about onco test and he said that since this was my 2nd breast cancer, even though it is a new primary, that insurance might not pay and didn't feel it would be beneficial.  I know the research I have seen shows it as being a very valuable diagnostic tool.  I have also seen research stats that state chemo is not as effective on er/pr+ breast cancers with negative nodes.  I agree that we must put it in Gods hands and I am so appreciative of your response and I am sure you will have many years of healthy life in front of you, at least 40 more.     

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited April 2010

    Hi Gail, sorry you had to join us again..I wish this website had been here when I was first diagnosed ten years ago..I would really do the onco testing..I am one who has had side effects from chemo that I am still battling...so I would take my time and get a firm handle on your options..

  • pod1257
    pod1257 Member Posts: 262
    edited April 2010

    Gail,

     I 2nd the rec for the oncoptype. I believe it measures 21 features of your tumor and then gives a score that suggests risk of recurrance and wether the tumor appears aggressive. If your oncotype is favorable for risk, in my view, the AI would be totally enough, without risk of chemo.

    I was stage 1, grade 2, hormone +. My oncotype was 10, so it was suggested I would benefit more from anti-hormone therapy only. I am 4 yrs out and doing fairly well.

    Here's to wellness and another 25+ years for you. Best of luck.

    Julie

  • nonijones333
    nonijones333 Member Posts: 120
    edited May 2010

    Hi Gail, I had triple negative bc back in 1987, 23 years ago. Back then if the nodes were negative no chemo was given. Well 18 years later I like you had a new primary in the other breast, that will be 7 years in September. It was recommended that, due to the nature of Triple Negative BC that i do chemo but I opted not to. I felt the risks outweighed the benefits. Well call me a stuborn Ginny, but looks like it worked for me. I will be 64 in June and I never felt better. First time 1.6 tumor stage 1, second time 2cm, I guess that made me stage 2 but clear nodes, and I felt I was good to go. It is a crap shoot for sure and it has to be totally your decision. I prayed alot and got my answer. Feel fortunate you caught it early.

  • Gail48
    Gail48 Member Posts: 11
    edited May 2010

    Nonijones333,

    Thanks for your support.  I finally have found an onc. that sent for the Oncotype test for me.  I am waiting on the results from that to make my final decision, but until I receive it I have been taking Arimidex.  I pray every night that it will be a low score.  I don't understand why some onc. just want to give chemo before they even have all the final results.  

     I have to keep reminding myself, like you said, to be thankful that it was caught early.  I thought I would be better prepared the second time around.  I am in some areas because I am older now and my son is grown, but I have beautiful 2 yr. old  granddaughter that I would like to watch grow. I agree with you, it is just a crap shoot and we do the best with what we have.  Warm hugs and good thoughts coming your way.

     Gail 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2010

    If you end up with a high score, and chemo is indicated; know that it is very doable, is given in doses very specific to you, with good anti-nausea drugs, and doesn't generally leave long term bad SE. My best wishes! Ruth

  • Isabella4
    Isabella4 Member Posts: 2,166
    edited October 2010

    Gail.

    I didn't do chemo. I was told it would only make 2% difference to the chance of reccurance, and that chemo was harsh stuff. I was steered away from it really. Being absolutely and totally 'green' about bc I just took the onc-at-the-time's advice. Now I can't make up my mind whether I should or shouldn't have done it !!

    Isabella.

  • u32374
    u32374 Member Posts: 68
    edited June 2010

    Each one of us tends to ask this question if it comes up as a treatment option.  All my Dr.s thought with my small tumor size that a lumpectomy and rads would be all I needed too.  Then I got a score of 25-26? from the onco type test and suddendly chemo reared its ugly little head. I decided that it was the route for me and never looked back. 

    The chemo thread on here that gets you ready was a godsend and I took all the prescribed meds and over the counter meds and worked through 6 T/C treatments. I did get tired by the third one and would take chemo week off after that one but it was not as bad as I thought it would be and it's all behind me now. It'd definitely a personal decision but when push came to shove I had no problem choosing. Everyone usually is able to make the choice that's right for them. Hugs.

  • jbaudit
    jbaudit Member Posts: 28
    edited June 2010

    Did any of the ladies that posted to this link who bypassed chemo  do  radiation? My wife is scheduled for Pet/ct today and surgery  Wed and still no positive results as to size ,stage etc

    Any thoughts? all we have after much testing is ILC ER+/PR+ HER2-/E-CADHERIN-

    We were originally thinking about surgery  only and  going to altermative clinics with natural remedies until I researched  the treatments by the holistic clinics and saw to many bad stories and negative type info its all very scary and with 3 weeks in we are both  totaly anxieity ridden..Guess you can be rational about everything thats definite but the unknown is the killer. Sorry to sound like such a wimp but I dont want to lose her after  such a long time together. She is 64 yrs old and wants to live to see grandchildren

  • jbaudit
    jbaudit Member Posts: 28
    edited June 2010

    Did any of the ladies that posted to this link who bypassed chemo  do  radiation? My wife is scheduled for Pet/ct today and surgery  Wed and still no positive results as to size ,stage etc

    Any thoughts? all we have after much testing is ILC ER+/PR+ HER2-/E-CADHERIN-

    We were originally thinking about surgery  only and  going to altermative clinics with natural remedies until I researched  the treatments by the holistic clinics and saw to many bad stories and negative type info its all very scary and with 3 weeks in we are both  totaly anxieity ridden..Guess you can be rational about everything thats definite but the unknown is the killer. Sorry to sound like such a wimp but I dont want to lose her after  such a long time together. She is 64 yrs old and wants to live to see grandchildren

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2010

    jbaudit,

    I have been reading about your wifes diagnosis today, and just had to let you know my thoughts are with you and your wife.  I was also diagnosed at about the same time as your wife.  I can see you are a very special person with how you are trying to help your wife at this time.  You can look at my prognosis as far as what I know at this time.  I also live in Florida but we will be going up to Tampa to moffit for all my care.  You had asked about just doing radiation and avoiding cemo, I am also hoping I can avoid that as well but I will do what I need to because as you said about your wife I want to be there for my 2 grandkids.  They are my life and can't even think about not being there for them.  Anyway if you would like to talk more of if your wife would send me a private message.

    Karen

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited June 2010

    JBsudit...you really need to see the pathology report after surgery before you can make

    any type of reasoned decisions...please take it one step at a time...I am

    67 now and am almost 10 years from diagnosis...

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