I joined the club.

Kiantae
Kiantae Member Posts: 29
edited March 2014 in Breast Cancer #1
Hello all,

I just joined the breast cancer club in December and thought I would join the network. There seems to be good information here.

My story (kinda long):
I am 49 years old and during my annual Mammogram the beginning of December,an anomoly was noticed. Followed up with second mammo, ultrasound and then a biopsy before it was confirmed to be cancer (12/23). Had a breast MRI to see if there was anything in the other breast. Nothing there, thank goodness. Thought I was in for a lumpectomy on my right breast, radiation and I would be one my way. Tumor was only .7 cm but had spread outside of the duct and to 2 of the sentinel nodes they removed. My surgeon was shocked that something that small had spread. Had radical modified mastectomy and removal of additional 12 nodes on 1/14 then another surgery 1/15 due to some complications. The rest of the nodes were clean. Yay! I returned to work 2/1 and that has been going ok so far. Get tired, but I seem to be healing well. Visited oncologist for the first time 2/3 and he encouraged me to do the Oncotype DX test to see if it was necessary to do Chemo. He said in the past it has been primarily used for ER+, HER-2- and Node-negativce patients but studies have shown that it is believed to be valid for ER+, HER-2-, Node-positive (1-3) patients as well who can benefit from the recurrence score it provides. I decided to go ahead even though it is a very expensive test and not usually covered by my insurance. I really struggled with the cost, but then remembered that I have put that much in to my car when it needed repair, so I should be worth at least that. LOL. I have not received my recurrence score yet. If low, then the oncologist would not recommend chemo. Has anyone else that is node-positiive not had chemo? It is scary to think about making the wrong decision. If the score comes back med, or high I think it will help me mentally to deal with the chemo process knowing I am actually fighting something. My family has been very supportive. My Grandmother (age 99) lives with us and my husband has been great about taking over care for her and me during this time. Just need to figure out what the next steps are going to be.

Comments

  • sbmly53
    sbmly53 Member Posts: 1,522
    #2
    Welcome
    I am sorry for the reason you are here, but now that you are, you are warmly welcomed. I am new, too, but am so fortunate to have found such a wonderful wealth of support and information from the sweethearts on this site.

    My bc (IDC) was found at routine mammo and with the sentinal node, Er+,Pr+ and slightly Her +, my Onco came back with low risk. My onc stated he didn't believe chemo would be of benefit to me. As much as I didn't want chemo, I didn't not want to have it if I needed it, either. My rad dr and surgeon have both assured me that rads followed by a 5 yr plan, to be determined after rads, will be all that I need.

    Sue
  • canoegirl
    canoegirl Member Posts: 169
    #3
    Welcome Kiantae
    Welcome to the site! Sorry about your diagnosis. I'm fairly new also (surgery 1/14) and don't know anything about the Oncotype DX, but there are so many supportive, knowledgable women here I'm sure someone can help you out. Good luck!

    Hugs,
    Marcy
  • Tux
    Tux Member Posts: 544
    #4
    Welcome to our discussion
    Welcome to our discussion board. Although I have not had your dx, there are many very knowledgable sisters on this board who have. I wish you the best of luck in your treatment.

    Hugs & prayers sent your way...
  • jbug
    jbug Member Posts: 285
    #5
    Hi Kiantae
    Welcome to the site! You'll find a wealth of info and support here...your story gives me a little bit of chills as I realize that I'm fortunate...similar story to yours...been in the game here since Nov 09, 0.4 mm tumor (except neg nodes). ER/PR + and Her negative; my surgeon and onc also told me that they didn't expect spread w/such a small tumor...but i see that w/your story it can happen. I opted for a lumpectomy had rads and am on tamoxifen.

    I did ask about the oncotype test and was told w/my tumor size and the type of tumor cell they found, oncotype testing wouldn't be necessary. I did not need chemo...i think it might have seemed like i wanted chemo! I just didn't want to miss out on any necessary treatment to help me fight the cancer. After doing some research, i had already decided if the score was intermediate - maybe chemo would help and maybe it wouldn't - I would choose the chemo in order to win the war.

    Good luck w/your decision, once you have all the info. God bless...
    Julie
  • aztec45
    aztec45 Member Posts: 757
    #6
    Welcome
    Welcome,Kiantae,

    Good luck with your tests. Hopefully your score will come back low and you will not need chemo. Have a good week.

    P
  • New Flower
    New Flower Member Posts: 4,294
    #7
    aztec45 said:

    Welcome
    Welcome,Kiantae,

    Good luck with your tests. Hopefully your score will come back low and you will not need chemo. Have a good week.

    P

    Welcome to the site
    Sorry for your situation. I did not have an oncotype test because I had positive nodes and large tumor. It has been my understanding that in case of positive nodes Chemo is recommended. So I did have Chemo. What is about radiation? have you discussed it with your oncologist? After you get your test results back you need to discuss your treatment plan with your oncologist. Usually hormonal therapy is also recommended for estrogen positive tumors. Post if you have additional questions.
    Good luck with your decision,
    New Flower
  • Kiantae
    Kiantae Member Posts: 29
    #8
    jbug said:

    Hi Kiantae
    Welcome to the site! You'll find a wealth of info and support here...your story gives me a little bit of chills as I realize that I'm fortunate...similar story to yours...been in the game here since Nov 09, 0.4 mm tumor (except neg nodes). ER/PR + and Her negative; my surgeon and onc also told me that they didn't expect spread w/such a small tumor...but i see that w/your story it can happen. I opted for a lumpectomy had rads and am on tamoxifen.

    I did ask about the oncotype test and was told w/my tumor size and the type of tumor cell they found, oncotype testing wouldn't be necessary. I did not need chemo...i think it might have seemed like i wanted chemo! I just didn't want to miss out on any necessary treatment to help me fight the cancer. After doing some research, i had already decided if the score was intermediate - maybe chemo would help and maybe it wouldn't - I would choose the chemo in order to win the war.

    Good luck w/your decision, once you have all the info. God bless...
    Julie

    Thanks for the welcome. I
    Thanks for the welcome. I have already gone wig shopping and getting myself prepared mentally if I do have to do chemo. A friend that I worked with dealt with Breast Cancer last year so she is providing resources and encouragement. She actually got support from another lady that she works with that went through it a year before she did. Goes to show you how many women are affected by breast cancer.
  • Kiantae
    Kiantae Member Posts: 29
    #9
    New Flower said:

    Welcome to the site
    Sorry for your situation. I did not have an oncotype test because I had positive nodes and large tumor. It has been my understanding that in case of positive nodes Chemo is recommended. So I did have Chemo. What is about radiation? have you discussed it with your oncologist? After you get your test results back you need to discuss your treatment plan with your oncologist. Usually hormonal therapy is also recommended for estrogen positive tumors. Post if you have additional questions.
    Good luck with your decision,
    New Flower

    Node positive
    My oncologist indicated that new studies are showing that node-positive (1-3) patients with smaller tumors that are hormone receptive also benefit from the test. It was discussed at the 2009 San Antonio Breast Cancer Symposium. My onco indicated many doctors are taking a wait and see attitude, but he feels there is enough information to support it. The fact that the data is so new is what I am a little concerned about, but I am sure that is how every woman felt as new advances in technology and treatment were introduced. The fact that the test is done on the actual tissue that was removed and assessing the genom characteristics of that tissue feels more definite than how big something is and where it falls on a chart. I don't want to make a decision out of fear except there is fear on both sides. Fear of the chemo itself and potential harm to my body in other ways, or fear of not doing it and making the wrong decision. Since I had the mastectomy, I was told I did not need the radiation, but would need to do the 5 years of anti-hormone therapy. Taking it one step at a time, one decision at a time.
  • Eil4186
    Eil4186 Member Posts: 949
    #10
    If it were me with positive
    If it were me with positive nodes, I would absolutely have chemo. If any cells traveled through the node system then chemo could kill those distant cells.
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #11
    Kiantae said:

    Node positive
    My oncologist indicated that new studies are showing that node-positive (1-3) patients with smaller tumors that are hormone receptive also benefit from the test. It was discussed at the 2009 San Antonio Breast Cancer Symposium. My onco indicated many doctors are taking a wait and see attitude, but he feels there is enough information to support it. The fact that the data is so new is what I am a little concerned about, but I am sure that is how every woman felt as new advances in technology and treatment were introduced. The fact that the test is done on the actual tissue that was removed and assessing the genom characteristics of that tissue feels more definite than how big something is and where it falls on a chart. I don't want to make a decision out of fear except there is fear on both sides. Fear of the chemo itself and potential harm to my body in other ways, or fear of not doing it and making the wrong decision. Since I had the mastectomy, I was told I did not need the radiation, but would need to do the 5 years of anti-hormone therapy. Taking it one step at a time, one decision at a time.

    Warm welcome, Kiantae
    Glad you found us, though sorry for the reason.

    Yes, we travel the journey only one step at a time because there is no other way.

    My team of onc doctors taught me, long ago, that each and every decision we need to make carries risk. It's all about weighing those risks, one against the other. My own decisions have always swayed towards doing everything that is currently available to keep my own BC at bay.

    Surgery, chemo, rads, oral meds - all bring potential side effects and, perhaps, damage. Please note that 'potential' and 'perhaps' are the key words. However, breast cancer is - no doubt - a very dangerous disease.

    Though the BC experience unites us here - we are all different. Our choices are personally and uniquely individual. Only you can make the decisions that will affect your own future.

    Best wishes to you, with...

    Kind regards, Susan
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #12
    Kiantae, I just watned to
    Kiantae, I just watned to send out a welcome to our group. It's not one that anyone of us wants to be a part of but in the long run it can certainly help us understand things. There are a vast number of survivors here and one of us has probably experienced any questions or symptom that may arise. I have not had the same dx as yours but wanted to welcome you. Good luck and keep posting. We'll be here to help in anyway we can. Take care.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #13
    Kiantae
    Sorry you had to join the club, but I'm glad you found us.

    I did have to make a decision about chemo based on my Oncotype score, although I was node negative. My score came back in the intermediate range, and some might have decided to skip chemo in my position, but I decided to go through with the chemo. The oncotype indicated that chemo would increase my chances by about 4%, and for me that was enough.

    Even though chemo is no cakewalk, it has been doable, and I'm glad I made the decision that I did. I've been able to work full time for the most part, and have only taken a few days off work for each chemo session. I have my 4th and final session this Wednesday.

    One thing that swayed me was the thought that I'm relatively young (51) and in good shape to withstand the chemo now. If I didn't go through the chemo now and had a recurrence later I might not be as able to withstand any side effects. This thought was probably the main reason I chose the way I did.

    I'm sure you know that it's a decision only you can make, but I encourage you to do as much research as you can to feel comfortable in whatever you decide. I'm not much of a gambler, and in your position would probably also choose to do chemo, but I'm not you.

    Best wishes, and please keep us posted on how you're doing.

    Take care,
    Cindy
  • Angie2U
    Angie2U Member Posts: 2,991
    #14
    canoegirl said:

    Welcome Kiantae
    Welcome to the site! Sorry about your diagnosis. I'm fairly new also (surgery 1/14) and don't know anything about the Oncotype DX, but there are so many supportive, knowledgable women here I'm sure someone can help you out. Good luck!

    Hugs,
    Marcy

    Hi Kiantae! Sorry that you
    Hi Kiantae! Sorry that you are here, but, you have found a great support group.

    Wishing you good luck!

    Angie

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