What now, another choice to make!

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emath
emath Member Posts: 92
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

After having the SNB and lumpectomy on the 23rd of July, I mended for about 4 days and then started at it again. I had a mammosite in my left breast, during the lumpectomy they installed a "dummy" and you go back to the surgeon's office a few days after surgery and have the "Dummy" taken out and the "Real Thing" shoved back in. Yes, SHOVED back in. No pain meds or anything, not fun! Then the next day off to see the radiation doctor. Then for the next 5 days 2 times a day I had internal radiation done. Yesterday I completed my last session and yes they had to remove the Mammosite! YEA....was looking foward to that! Took the doctor 3 tries to get it out. Scar tissue had already started growing around it causing it not to come out to easy! But I did survive it!  So today even though I am still in pain and very sore head out to the oncoligist. Hoping that I would hear, your are cured! Take a pill every day for 5 years and you will be fine. WAKE UP! Not!!!!  Instead I was told a percentage of relaspe. So, now I need to make a choice of what next. I was told 25% of relaspe within 10 years if I do nothing, take an "AI" for 5 years and have a 12% relaspe, take chemo and the AI's then I have 6% relaspe. I was told to take my time as long as I made a choice by Aug 13, 2008. Qaulity of life or better odds. What do you do? Please everyone, give me some input here to help me decide. I was dx on 7/7/08, had surgery 7/23/08 and have completed rads. Stage 1b grade 2,  2.0cm, 0/5 nodes. Please help me by telling me your choice of treatments and why you choose it.

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  • EmaRosa
    EmaRosa Member Posts: 8
    edited August 2008

    My tumor was grade 2/3, 1.9 cm, HER2 , nodes 0/4, clear in the margins, estrogen and progesterone positive. Like you I was given a series of statistics.  I chose to go without chemo and herceptin, I was induced menopause but I could stand the treatment, so at the end I only have tamoxifen. The latter's cumulative SE are not easy to live with, but I'm hanging in there. Since I chose masectomy, I didn't need radiation.

    Why did I chose no chemo? because quality of life is more important to me than quantity. I also thought that I should keep the "big guns" for a recurrence, if any.  The most valued advice I received was from my surgeno-oncol: "do what you can live with everyday; make sure you won't have regrets." My beliefs helped me. I've never been afraid of death and only my maker knows when is time for me to go. Not regrets, only thankful for the blessings I received from my love ones and those who I didn't know cared. Hear your heart and you're the only one who knows "what you can live with". Best wishes. 

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  • emath
    emath Member Posts: 92
    edited August 2008

    Thank you EmaRosa. Just hearing from others give me more "Food for Thought". You said alot, and you are right....I should listen to my heart! Thanks again and Best Wishes to you as well!

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited August 2008

    Have you had an OncotypeDX test run? It gives an objective finite number, and a range - low, med, high - of recurrence rates. Sometimes it even surprises the oncologist when it comes back different than s/he would have expected. Was your Her-2 neg? That is a vital piece of information.

    You might want to look at it this way, also - AI for five years 12% chance of relapse. Add chemo, cut the chance in half. That mattered a lot to me (of course I didn't have the option of AIs but anyway...Wink)

    Chemo did affect my quality of life for some nasty weeks there. But they are a memory now. I believe 2cm is the cut-off for many oncologists so you really are on the edge for decision-making. I'd ask for an Oncotype test.

    Good luck with the tough decisions you face.

    Lisa

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  • ritajean
    ritajean Member Posts: 4,223
    edited August 2008

    Hi emath....

    Since you're a Stage 1, you might be a candidate for CMF chemo.  This chemo is easier on the heart and has less side effects.  Your hair thins but you don't lose it all, and most people tolerate it better than AC.  You might ask your oncologist about this.  If you have other questions, go to the CMF Questions thread under Help Me Make it Through Treatments and ask away.

    I did 6 CMF infusions, followed by radiation, since I had a lumpectomy.  It's a very "doable" regmiment.  I did the chemo because I felt that every percent was important when it comes to this terrible disease.  This is such a personal decision and only you can decide what is right for you.  In my situation, I didn't really debate too long because I know how I would feel if I didn't do some type of chemo and then had a recurrence.  I'd always have wondered if the chemo might have kept it away. This way I know that I have done all that I could do to try to keep the beast away.  I am now taking Arimidex (and have been for about a year). 

    The decisions are so hard to make along this journey.  I always found that I coped better once the decisions were made and I had a plan in effect.  I wish you the best and am sure you'll make the best choice for you.

    Rita

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  • emath
    emath Member Posts: 92
    edited August 2008

    I have no ideal, the information they gave me today sorta went in one ear and out the other. I think I was in shock again. I do know that she told me that I was N-O (which I know what that is same as 0/5 on the nodes. But she also said I was T1C bordering T2a whatever that is. I think it is the sizing of the tumor. I will call and ask if they did the Onco test, if not can they still do this test? How is this test done? How dumb we feel at times. I have never learned as much in my entire time in school as I have been learning here in the last 3 months! A lot of info out there! Thanks for all of you input...means a lot to me and I learn even more!

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited August 2008

    Ellen - What she was saying with the T1c/T2a is that a 2cm tumor is T2a, which is  Stage II cancer (even with N0, like mine) and she may be reluctant to step over that line if she hasn't said those words to you yet. The Oncotype test is an analysis of a small sample of tumor tissue embedded in paraffin. It is specifically designed to quantify the likelihood of breast cancer recurrence in women with newly diagnosed, early stage breast cancer. In addition, Oncotype DX also assesses the benefit from chemotherapy. This is an important test for ER+ women to get as much information as possible in their decision-making. Knowledge means so much when you are talking about decisions that will affect your LIFE. 

    Best of luck!

    Lisa

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  • Aggie84
    Aggie84 Member Posts: 67
    edited August 2008

    Hi Ellen,

    I saw the University of Texas shirt on your profile, but won't hold it against you.Wink

    I'm sorry that you have to go through this, you have some tough decisions to make.  I can tell you what I went through as for the chemo and Arimidex and how that effected me and my quality of life.  I was diagnosed at 40 and had 4 boys from ages 9 through 17.  I wanted to be around to see them all graduate from high school, and hopefully someday hold future grandchildren.  

    I told my onc to give me whatever he thought would get rid of this beast forever (not interested in any trials of any sort).  I had a 2.9 cm grade 3 tumor.  0 nodes. After my lumpectomy, I had 4 rounds of AC that alternated with 4 rounds of MF. Then I had 4 rounds of Taxol.  After that 36 radiation treatments, and now finishing up in a few months of 5 years on Arimidex.

    My onc told me a year or so ago, that he was 100% sure that I would never have BC again.  I told him not to say 100%, then he responded,"okay 99% sure"  I asked him why and he said, "Because of the treatment I gave you."  

    Yeah, chemo is tough, but doable as I am sure that you read many times on these boards.  Arimdex has side effects too, like achy joints, but they get better. In fact, I have been quite active exercising this past month and hardly notice the achiness anymore.   

     I don't regret any of my treatment decisions

    Take care.

    Aggie 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Hi Ellen,

    I chose a bilateral mastectomy with immediate reconstruction that let me avoid radiation, and I chose not to do chemo.  I am currently on Tamoxifen, and I am very happy that I made the treatment decisions that I did.  It seems like every time I turn around something is happening in my life that would be infinitely harder if I was doing chemo. 

    Please research the specific chemo combination which your oncologist is proposing for you...each combination has it's own set of side effects, some of which can be long term/permanent.  The set of risk factors (cardiac, respiratory, etc.) that you arrive at this point with will also affect how your body is likely to react to chemo, and could have a huge impact on your risk/benefit ratio. 

    Whichever way you decide to go, you need to make a decision that you can live with long term, not merely survive. 

    Pat

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  • emath
    emath Member Posts: 92
    edited August 2008

    Hi Aggie,

    Did not even realize tht my son had this shirt on! Tongue out Very funny! Thank you for not holding it against me!!  LOL The chem they have laid out for me is either 1 of 2  FAC or CMF. If I do this, I will choose the CMF over the FAC. Seems you go through more on the FAC for only 1% difference. Not woth it to me! I am waiting at this time for the nurse to call me back on if the did the onctype and if they did what I am. From what I have read, this means alot. Will keep you all informed. It means alot to hear from everyone!  THANKS!!

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  • Jule
    Jule Member Posts: 250
    edited August 2008

    Ellen,

    Hi. I am currently 4 out of 6 TAC. I was told to do the chemo first, then surgery then radiation. It is curious to me how different oncologists are! I was told to do it this way because odds are better when doing the chemo first for younger women. Chemo has been hard....I don't think that anyone can really say otherwise BUT you do get through it. I am thankful that I only have 2 more left, and I hope that I never have to go through it again. That being said, I would, if it meant that I could see my kids grow up. It is a hard decision...I wish you well while you  make your choices.

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