To Chemo OR NOT to Chemo

Gabbie99
Gabbie99 Member Posts: 17
edited March 2014 in Breast Cancer #1
This is my very first post...diagnosed with BC in October, (you know the month when all those pink ribbons are constantly in your face as a reminder) In December had a lumpectomy and sentinal node biopsy that showed NOT clear margins and a less than one mm tumor in lymph node. Just two weeks ago had a mastectomy and all margins are clear of cancer- removed 20 lymph nodes and also NO cancer. My oncologist has recommended tomoxifen therapy and still thinks I should do the taxotere and cytoxin chemo because of the micro tumor in my first lymph node. I was determined that I would only go through the chemo if there was any more cancer in my lymph nodes, but now am scared that if a few years down the road I have cancer somewhere else I will always blame it on not taking the chemo..anyone else been down this road and chose not to do chemo?
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Comments

  • mimivac
    mimivac Member Posts: 2,143
    Welcome
    And I'm sorry you had to find us. There are many reasons to pursue or not to pursue chemotherapy. Of course in the end it's a personal decision, but you want to be as informed as you can when you make that decision. That said, I would definitely go for a second opinion on your treatment. Factors to take into consideration would be tumor size, stage, node involvement, hormone receptor status, BRCA status, your age, physical condition, and probaly much more I'm forgetting now. Since your oncologist has recommended Tamoxifen, I'm assuming you are ER and/or PR positive. It's good you have that in your arsenal. Personally I think that one positive node is a good reason to do chemo. It means that the cancer has traveled a bit and the chemo is there to wipe out any microscopic cancer cells in your system. It's an insurance policy. No one will say that chemo is a party, but it is doable. Many, many women here have done Cytoxin and Taxotere. I did them both along with adrimycin. I had no positive nodes, but I was hormone receptor negative, which made my cancer very aggressive. I wish you luck in your decision. A second or even third opinion may help you achieve a comfort level with whatever you end up doing. Again, welcome. The ladies here will help you every step of the way. You're going to be fine.

    Mimi
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Gabbie, welcome to the group
    Gabbie, welcome to the group that no one wants to join. Like Mimi said, it is a very personal decision and one that only you can make. I think a second opinion and possibly even a third opinion would be a good idea if you are that undecided. I had a microscopic cell located in my sentinel node and cytoxan and taxotere were recommended. I elected to do the chemo just because it made sense to me. I am ER/PR positive and HER2 negative. My cancer was invasive ductal carcinoma. I will also be taking Arimidex for 5 years. There are many variables that go into the decision and no 2 people are alike. Take your time and get the opinions and information you need and then make your decision. Best of luck to you. Continue to post and let us know your decision. Good luck!!
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    Gabbie
    Welcome to this site, although I'm very sorry for the reason you have to be here.

    The decision about whether to do chemo is not easy, and as Mimi said, it's a very personal decision.

    I was dx last September and had a lumpectomy on October 12th. I was very fortunate that there was no cancer in my lymph nodes, but based on the results of the Oncotype DX test my doctor ordered, I decided to to chemo anyway. Even though for me the chemo is only supposed to increase my chances by 4%, that was enough of a difference for me. I also took into account the fact that I'm relatively young (just turned 51) and in good shape to withstand the chemo. I felt that if I skipped it now and had a later recurrence I might have more problems with side effects. I just finished my 4th and final round of Cytoxan and Taxotere 2 days ago, and am very happy to have this step behind me.

    Chemo is no cakewalk, but I have been pretty luck to have minimal side effects. No nausea at all (they give great preventive meds for that), no pain to speak of, just some constipation which I've learned how to manage, a really yucky taste in my mouth (but it does get better in between treatments), and feeling pretty tired toward the end, and now getting hot flashed from being thrown into menopause.

    I agree with Mimi's advise to get as informed as possible, and this is a great place to start. You need to feel comfortable with your decision either way.

    Come back ofter and we will do our best to guide you through your journey.

    (((HUGZ)))
    Cindy
  • Sher43009
    Sher43009 Member Posts: 602 Member

    Gabbie
    Welcome to this site, although I'm very sorry for the reason you have to be here.

    The decision about whether to do chemo is not easy, and as Mimi said, it's a very personal decision.

    I was dx last September and had a lumpectomy on October 12th. I was very fortunate that there was no cancer in my lymph nodes, but based on the results of the Oncotype DX test my doctor ordered, I decided to to chemo anyway. Even though for me the chemo is only supposed to increase my chances by 4%, that was enough of a difference for me. I also took into account the fact that I'm relatively young (just turned 51) and in good shape to withstand the chemo. I felt that if I skipped it now and had a later recurrence I might have more problems with side effects. I just finished my 4th and final round of Cytoxan and Taxotere 2 days ago, and am very happy to have this step behind me.

    Chemo is no cakewalk, but I have been pretty luck to have minimal side effects. No nausea at all (they give great preventive meds for that), no pain to speak of, just some constipation which I've learned how to manage, a really yucky taste in my mouth (but it does get better in between treatments), and feeling pretty tired toward the end, and now getting hot flashed from being thrown into menopause.

    I agree with Mimi's advise to get as informed as possible, and this is a great place to start. You need to feel comfortable with your decision either way.

    Come back ofter and we will do our best to guide you through your journey.

    (((HUGZ)))
    Cindy

    Welcome Gabbie, I agree with
    Welcome Gabbie, I agree with the others and get another opinion. It will still your mind and give you more info to base your decision on. I'm IDC, ER/PR+ and HER2+ so I had to have chemo even though I have no node envolement. Good luck with making up your mind.
    Sher
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    Welcome, Gabbie
    I chose to do chemo for exactly the reason you mention -- I couldn't live with myself if 5, 10, 20 years down the road the cancer came back, and I was left wondering, what if I'd done chemo? I wanted to be able to say I'd done everything I could.

    I had tiny tumors in both breasts (4 total, none larger than 2 mm) -- I had bilateral lumpectomies and sentinel node biopsies this past June, no lymph node involvement. I did 4 rounds of Cytoxan/Taxotere, 33 radiation treatments, and am now taking Tamoxifen.

    The other factor for me was age. I'm 41, and my tumors were ER+/PR+ -- I have a lot of estrogen-filled years ahead of me before menopause, so felt it was even more important to hit this with everything I could.

    Like the other here, I can reassure you not to be terrified of chemo. They have such good drugs for side effects now -- as Mimi said, it's not a party (woo-hoo! :-), but you don't have to suffer horribly anymore.

    Please post here as often as you like -- this group of women and men are the best companions for this journey you'll find.

    Traci
  • MAJW
    MAJW Member Posts: 2,510 Member
    To do chemo or not........
    Gabbie,
    Not much more I can add.......I had a lumpectomy, CLEAN CLEAR MARGINS and NO lymph node involvement..........I was advised to have the Taxotere/Cytoxan chemo cocktail.....as many others here have said, it's a very personal decision, but like most said, I wanted no regrets down the road, if it came back.......I wanted everything and anything they could throw at this beast! Chemo is no day at the beach, but I must say, it wasn't as bad as I thought it would be or like the horror stories about from chemo in years past....Never once was sick or even nauseated.........all side effects are manageable with medication. Had 33 radiation treatments following chemo, I am 3 months out now from all treatment and I feel really good....still some tiredness from the radiation, but again, very manageable........
    I wish you well......
    Peace be with you in making your decision
  • jbug
    jbug Member Posts: 285
    Hi Gabbie...just want to add
    Hi Gabbie...just want to add my welcome. This is a great place to seek advice and support.

    God Bless....
    Julie
  • RE
    RE Member Posts: 4,591 Member
    Never fun to have to decide.
    Hello Gabbie welcome to the site, glad you found us. I had no involvement in any of my lymphnodes the first time around. I had a mass in my left breast so I had a lumpectomy, did chemo and did radiation therapy (6 weeks). Eight months later it was back and now it was in my chest wall and my sentinel lymph node, had I not had chemo the first time I am pretty sure I would not have survived. Once cancer is in your lymph nodes in now has a path to anywhere in your body it wishes to attach itself too. I cannot tell you what you should do it is a very personal decision. I can tell you that i have had cancer 3 times and have had lots of chemo and rads, it is not fun but it is doable. No matter what you decide we will be here to support you.

    RE
  • Gabbie99
    Gabbie99 Member Posts: 17
    RE said:

    Never fun to have to decide.
    Hello Gabbie welcome to the site, glad you found us. I had no involvement in any of my lymphnodes the first time around. I had a mass in my left breast so I had a lumpectomy, did chemo and did radiation therapy (6 weeks). Eight months later it was back and now it was in my chest wall and my sentinel lymph node, had I not had chemo the first time I am pretty sure I would not have survived. Once cancer is in your lymph nodes in now has a path to anywhere in your body it wishes to attach itself too. I cannot tell you what you should do it is a very personal decision. I can tell you that i have had cancer 3 times and have had lots of chemo and rads, it is not fun but it is doable. No matter what you decide we will be here to support you.

    RE

    Melt Down
    Thanks everyone for the comments...you all had chemo! Isn't there anyone who elects to not do it? I have always felt like the most positive, luckiest person in the world. It's hard to find anything lucky about this and I keep thinking maybe I am in denial that this is really that bad.... It's just really hard to roll the dice on the decision of chemo. I am scared to do it and scared not to.. there's no "good" choice. Feel like crying all the time and the nerves in my arm and armpit hurt sooo bad. It's been two weeks since my mastectomy. The first week went great..positive attitude, pathology report clear, all good. Everything fell apart yesterday and I can't seem to stop bursting into tears. No one has seen me like this except my husband..he is great, thank goodness. Everyone has told me they admire how strong and positive I am and do not want them to know any different. I think two things happened that started this melt down... I saw the entire scar for the first time and I thought that because my pathology report was so good I would be told that chemo was not a recommendation in my case, instead the oncologist said he still felt it would increase my chances that it would not come back by 4-5%. I feel so selfish about all of this crying when I hear about what so many have gone through that is worse.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    Gabbie99 said:

    Melt Down
    Thanks everyone for the comments...you all had chemo! Isn't there anyone who elects to not do it? I have always felt like the most positive, luckiest person in the world. It's hard to find anything lucky about this and I keep thinking maybe I am in denial that this is really that bad.... It's just really hard to roll the dice on the decision of chemo. I am scared to do it and scared not to.. there's no "good" choice. Feel like crying all the time and the nerves in my arm and armpit hurt sooo bad. It's been two weeks since my mastectomy. The first week went great..positive attitude, pathology report clear, all good. Everything fell apart yesterday and I can't seem to stop bursting into tears. No one has seen me like this except my husband..he is great, thank goodness. Everyone has told me they admire how strong and positive I am and do not want them to know any different. I think two things happened that started this melt down... I saw the entire scar for the first time and I thought that because my pathology report was so good I would be told that chemo was not a recommendation in my case, instead the oncologist said he still felt it would increase my chances that it would not come back by 4-5%. I feel so selfish about all of this crying when I hear about what so many have gone through that is worse.

    Not for the faint of heart
    Don't feel bad about feeling bad - none of this is easy, and we've all had our moments/days/weeks of just feeling like we can't do this. But then we somehow just do it anyway.

    I know how difficult your decision is, and I so wish you weren't even faced with having to make it.

    The positive attitude you've carried with you in your life WILL help you now, even if it gets a little tarnished or cracked along the way. You are a warrior and a survivor and you will find reserves of strength you never knew you had.

    (((BIG HUGZZZ)))
    Cindy
  • dash4
    dash4 Member Posts: 303 Member
    Gabbie99 said:

    Melt Down
    Thanks everyone for the comments...you all had chemo! Isn't there anyone who elects to not do it? I have always felt like the most positive, luckiest person in the world. It's hard to find anything lucky about this and I keep thinking maybe I am in denial that this is really that bad.... It's just really hard to roll the dice on the decision of chemo. I am scared to do it and scared not to.. there's no "good" choice. Feel like crying all the time and the nerves in my arm and armpit hurt sooo bad. It's been two weeks since my mastectomy. The first week went great..positive attitude, pathology report clear, all good. Everything fell apart yesterday and I can't seem to stop bursting into tears. No one has seen me like this except my husband..he is great, thank goodness. Everyone has told me they admire how strong and positive I am and do not want them to know any different. I think two things happened that started this melt down... I saw the entire scar for the first time and I thought that because my pathology report was so good I would be told that chemo was not a recommendation in my case, instead the oncologist said he still felt it would increase my chances that it would not come back by 4-5%. I feel so selfish about all of this crying when I hear about what so many have gone through that is worse.

    me too...
    Gabbie,
    I feel as guilty and selfish and sad as you do --thankyou for posting your thoughts. I am so confused at this moment and I am grateful too and feeling blessed that 2/16 lumpectomy(margins clear) and sentinel node biopsy(5 nodes - negative).
    I told all yesterday how blessed I feel and today I am so "sad". I lost my husband to cancer on 9/25 and not sure who I want to share my thoughts with and so I am writing this as I cry...I feel like such a mess and so guilty for feeling that way since I have so much to be thankful for. I too am waiting to see about chemo and I know I will have radiation..oh well, I will pull it together-just felt like sharing with you.
    Keeping you in my prayers,
    Mary Kay
  • aztec45
    aztec45 Member Posts: 757
    dash4 said:

    me too...
    Gabbie,
    I feel as guilty and selfish and sad as you do --thankyou for posting your thoughts. I am so confused at this moment and I am grateful too and feeling blessed that 2/16 lumpectomy(margins clear) and sentinel node biopsy(5 nodes - negative).
    I told all yesterday how blessed I feel and today I am so "sad". I lost my husband to cancer on 9/25 and not sure who I want to share my thoughts with and so I am writing this as I cry...I feel like such a mess and so guilty for feeling that way since I have so much to be thankful for. I too am waiting to see about chemo and I know I will have radiation..oh well, I will pull it together-just felt like sharing with you.
    Keeping you in my prayers,
    Mary Kay

    I Am Sorry
    I am sorry you feel so sad. I get that way sometimes, too. Sometimes I do not know why I feel that way. Sometimes you just get sad and you should not feel guilty about it. If you ever need to get some stuff off your chest, just let me know. I am a pretty good listener.

    P
  • Skeezie
    Skeezie Member Posts: 586 Member
    aztec45 said:

    I Am Sorry
    I am sorry you feel so sad. I get that way sometimes, too. Sometimes I do not know why I feel that way. Sometimes you just get sad and you should not feel guilty about it. If you ever need to get some stuff off your chest, just let me know. I am a pretty good listener.

    P

    Hi Gabbie,
    Hey, you have bc and that gives you every reason to burst into tears at the drop of a hat, or without even a "drop" of a hat. I probably cried everyday. But I also took Ativan and that really helped and I would shed some tears but no complete meltdowns. Don't be ashamed by your emotions. It's a good release too.

    I also chose chemo. I had absolutely clear nodes too. When it was recommended I didn't think twice about it. I wanted to do everything possible to get the Beast gone and not come back. I didn't want to have to say down the road, I should of had the chemo. I also had Cytoxin/Taxotere. It wasn't fun, BUT IT'S OVER NOW and I am so glad to have done it. I've done everything possible to prevent reacurence.

    It's not easy looking at scars, I was more upset about the big depression left in my breast after the second biopsy than I was after the simple mastecomy. Why? Because my pathology report said no cancel cells found in breast tissue.

    Get a second opinion if you need to but don't refuse chemo because you're afraid of it...everyone is afraid, it's normal and we are all here to help you. For me it was worth going thru the chemo and feeling better safe than sorry.

    Good luck with your decision, let us know how you are feeling. For me, one of the worst parts was the feeling of having lost control of my life during all of this. The dx is the worst part, the waiting is horrible and the fear is horrible.

    Hugs, Judy :-)
  • ppurdin
    ppurdin Member Posts: 1,181
    chemo
    Hi,I had to make this decision also.And what you said about feeling guilty if I got Cancer again if I did not take the Chemo.So I did take the Chemo.Good Luck to you. (Pat).
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    jbug said:

    Hi Gabbie...just want to add
    Hi Gabbie...just want to add my welcome. This is a great place to seek advice and support.

    God Bless....
    Julie

    Just welcoming you to this
    Just welcoming you to this site Gabbie! I didn't need chemo, so, I can't comment on your question. Good luck to you!
  • RE
    RE Member Posts: 4,591 Member
    Gabbie99 said:

    Melt Down
    Thanks everyone for the comments...you all had chemo! Isn't there anyone who elects to not do it? I have always felt like the most positive, luckiest person in the world. It's hard to find anything lucky about this and I keep thinking maybe I am in denial that this is really that bad.... It's just really hard to roll the dice on the decision of chemo. I am scared to do it and scared not to.. there's no "good" choice. Feel like crying all the time and the nerves in my arm and armpit hurt sooo bad. It's been two weeks since my mastectomy. The first week went great..positive attitude, pathology report clear, all good. Everything fell apart yesterday and I can't seem to stop bursting into tears. No one has seen me like this except my husband..he is great, thank goodness. Everyone has told me they admire how strong and positive I am and do not want them to know any different. I think two things happened that started this melt down... I saw the entire scar for the first time and I thought that because my pathology report was so good I would be told that chemo was not a recommendation in my case, instead the oncologist said he still felt it would increase my chances that it would not come back by 4-5%. I feel so selfish about all of this crying when I hear about what so many have gone through that is worse.

    HERE GOES
    Gabbie this is your decision and we all are holding you cyberly through. I wasn't going to go here but you asked the 1000 dollar question "doesn't anyone not have chemo". I personally know of two ladies who decided to have mastectomies only and forgo chemo. It did come back they went for chemo and it was too late. I also know of one gentleman who went to Mexico for spa type treatments rather than chemo and he is no longer here either. I am sure there are those who choose not to have chemo and survive I just do not know them.

    Wishing you better days,

    RE
  • CarrWilson
    CarrWilson Member Posts: 111
    ppurdin said:

    chemo
    Hi,I had to make this decision also.And what you said about feeling guilty if I got Cancer again if I did not take the Chemo.So I did take the Chemo.Good Luck to you. (Pat).

    No Chemo
    My best friend had a lumpectomy 7 years ago, chemo, radiation, the whole nine yards. The cancer came back 11/2009 this time in the other breast. So off she goes and has to have a bilateral mastectomy. She said absolutely, positively, no possible way was she going to have chemo. Her OncotypeDX said her chances were 18%. She felt those odds were good enough for her. She just finished radiation, and is looking forward to reconstruction in March. You wanted to hear if someone chose no chemo and she did. I am not sure what will happen down the road, but it was her choice with the information she had at the time. FYI, she is 56 years old.

    As for me, I am seeing my Onc tommorow and will go with his recommendations, including chemo if needed. I am like the others and want to do everything possible to beat this.

    The hardest part is there are no clear answers!

    Best of Luck no matter what your decision is.

    -Carrie
  • cathyp
    cathyp Member Posts: 376 Member

    No Chemo
    My best friend had a lumpectomy 7 years ago, chemo, radiation, the whole nine yards. The cancer came back 11/2009 this time in the other breast. So off she goes and has to have a bilateral mastectomy. She said absolutely, positively, no possible way was she going to have chemo. Her OncotypeDX said her chances were 18%. She felt those odds were good enough for her. She just finished radiation, and is looking forward to reconstruction in March. You wanted to hear if someone chose no chemo and she did. I am not sure what will happen down the road, but it was her choice with the information she had at the time. FYI, she is 56 years old.

    As for me, I am seeing my Onc tommorow and will go with his recommendations, including chemo if needed. I am like the others and want to do everything possible to beat this.

    The hardest part is there are no clear answers!

    Best of Luck no matter what your decision is.

    -Carrie

    No chemo
    My situation is so different than all of you on this board as I was treated for Hodgkins Lymphoma twice prior to my BC dx. 18 yrs later, I was dx'd w/IDC, stage 1. My only real option was a double mastectomy. Chemo would have increased my odds by 2%. I have many late effects from the rads and chemo, I didn't want to further damage my lungs and heart for 2%. Radiation was not an option I could consider because of the previous rads 20 yrs ago. After 2 mos of tamoxifen, I presented w/gyno issues and stopped that. I may have had a TIA this summer so I really shouldn't consider restarting tamoxifen. (My oncotype score is 8.) I don't know if it is better to have your options and arsenal wide open or have no real options like me. I can only wish you peace of mind with whatever you choose.
    Cathy
  • Megan M
    Megan M Member Posts: 3,000
    ppurdin said:

    chemo
    Hi,I had to make this decision also.And what you said about feeling guilty if I got Cancer again if I did not take the Chemo.So I did take the Chemo.Good Luck to you. (Pat).

    Good luck in whatever you
    Good luck in whatever you decide. I guess I would just want to be sure that I did everything possible to prevent the cancer from ever coming back. I wouldn't want to someday say, what if. It is your decision and I know you will make the right one for you.

    Hugs, Megan
  • Chemo or Not
    Wow, they took all twenty nodes? I had a lumpectomy (Jan 5, 2010)and 14 nodes removed 3 nodes had cancer one being the sentinel. Did they inject you with blue dye prior to surgery? I had my first chemo last week. So far i am doing well. I think the meds they had me take prior to and during chemo helped. They have come a long way with treatment. So were you given the option by your doctor to have chemo or not?