Don't know whether to go with chemo or not??

PinkPearl
PinkPearl Member Posts: 280
edited March 2014 in Breast Cancer #1
All of these conflicting reports have me going crazy!!! Back in August when I was first diagnosed the pathology report came back ER+, Her2+, then they read the report at the second hospital and their path drs said the Her2+ was debatable and recommended the FISH test at surgery which came back negative. My oncologist wanted to go ahead and do the oncotypeDX to confirm the Her2 negative status and now that report comes back yesterday Her2 negative which is good -but says I have a high chance for reoccurance (score of 35) which means I have a 24% percent chance of reoccurance if I don't do chemo. The onc. thinks it is probably more like 15% due to the small size of my cancer (about 0.8 cm) and with no lymph node involvement.

I just don't know what to do--chemo? I don't want to---but it could cut the reoccurance rate to maybe 8 %... or no chemo and associated risks? I thought this decision would be more clear cut for me.

Does anyone have experience with a small cancer with a high reoccurance score? The current break down for me is left breast IDC, ER+,PR-, Her2-, no lymph node involvement, and propalytic mx on right side due to family history.
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Comments

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    Thinking of you making decision
    I do not have any experience in this..just wanted to write and tell you I am thinking of you at this time...
  • joannstar
    joannstar Member Posts: 403 Member
    I'm triple Negative so
    the only option for me is Chemo and radiation. I was dx as IDC Stage 1C (1.2 cm tumor), with no nodal involvement and had similar stats given to me. I had 2 lumpectomies--the second was to get clean margins. I am choosing to do the chemo in fact my last of 6 is scheduled for tomorrow. My onc said that doing chemo would improve my odds by about 8% which is worth it to me. Also I'm going to do radiation which will also improve my chances. Because I'm a triple, there is no follow up drug for me.
    Chemo, while not pleasant, is totally do-able if you have a good support system. I was terrified, but it was not as bad as I expected...the worst was loosing my hair. I had some side effects of a rash, ankles swelling, nausea (although you will have drugs to stop that), burning feet and exhaustion. I have been able to work the entire 4 months just missing about 2 days per cycle.
    It is a personal decision of course, but for me, I wanted to use every available tool to fight for my life!!!
    Good luck,
    JoAnn
  • mimivac
    mimivac Member Posts: 2,143 Member
    It's difficult to know
    But, if it were me, I would do chemo with your stats. Your tumor is small, but a 35 oncotype is a high score and indicates that chemo may be really effective for you. Also, the fact that you are ER positive, but PR negative may mean that your tumor is less sensitive to Tamoxifen, again indicating that chemo would be a good added benefit. See this article: http://www.medicalnewstoday.com/articles/30271.php

    Good luck on your decision. I know it's difficult.

    Mimi
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    mimivac said:

    It's difficult to know
    But, if it were me, I would do chemo with your stats. Your tumor is small, but a 35 oncotype is a high score and indicates that chemo may be really effective for you. Also, the fact that you are ER positive, but PR negative may mean that your tumor is less sensitive to Tamoxifen, again indicating that chemo would be a good added benefit. See this article: http://www.medicalnewstoday.com/articles/30271.php

    Good luck on your decision. I know it's difficult.

    Mimi

    Hard choices
    My tumor was about the size of yours. I am ER+ PR+ HER- I also had conflicting results on HER I can't rem my number. My Onc. really encouraged both chemo and rads.I did 4 rounds of TC and 30 rads. My age (had just turned 49) had something to do with it, he kept telling me "because you are so young"! I did not argue with him lol. I did the chemo because I wanted to know I did everything I could to beat the beast. Chemo was not near as bad as I thought, not fun but very doable. This was just my personal choice. I am 6 mos. out of chemo and if I could go back and change my choice I would still do the same thing. God Bless
    (((Hugs))) Janice
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    Just throwing my 2 cents in
    Just throwing my 2 cents in - if it were me given the choice to do chemo or not, with the numbers & percentages you said in your post, I would take the chemo. I had no choice, I was 34 at the time of diagnosis & my Onc told me chemo is pretty standard for any women diagnosed in 30s regardless of size, etc. I was right breast IDC, and like you, ER+ and PR & Her2-.
    My mom was diagnosed 2 months after I was. Hers was so tiny, less than half a centimeter, that her onc was sure she wouldn't need chemo after her lumpectomy, and he didn't think at all she'd have any lymph nodes involved. She had her lumpectomy and when the Dr did the sentinal node biopsy the first node removed was positive for cancer, so he removed I believe 12 more, thankfully no more were positive, but that changed everyone's idea of what her treatment plan would be. She had 6 rounds of chemo which she just finished, and will start radiation in a few weeks.
    I'm glad I wasn't given the choice -in all honesty I would not have wanted chemo. It's scary. Nobody wants to lose their hair and feel sick like that. Thankfully they have meds for pretty much any side effect the chemo could give you and although not fun my any means, chemo is very do-able. Because i'm in my 30's, and have 2 young daughters, i've been aggressive in my personal fight with cancer, choosing bi-lat mastectomy with reconstruction, I'd rather come out of this feeling like i did too much to fight it rather than not enough. You have to make the decision that you're the most comfortable with and that's the best for you. Best of luck & good health to you.
    *hugs*
    Heather
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Hard choices
    My tumor was about the size of yours. I am ER+ PR+ HER- I also had conflicting results on HER I can't rem my number. My Onc. really encouraged both chemo and rads.I did 4 rounds of TC and 30 rads. My age (had just turned 49) had something to do with it, he kept telling me "because you are so young"! I did not argue with him lol. I did the chemo because I wanted to know I did everything I could to beat the beast. Chemo was not near as bad as I thought, not fun but very doable. This was just my personal choice. I am 6 mos. out of chemo and if I could go back and change my choice I would still do the same thing. God Bless
    (((Hugs))) Janice

    Welcome .. this is such a personal subject, I wanted to weigh
    in on it several times .. but I just did have the words to do so. Research, clinical trails and treatments have come a long way, but not developed enough to STOP this dreaded disease. I did and would do it again, everything possible to stop this BREAST dead in it's tracks. There is NO cure for breast cancer, or cancer for that matter. 1 women (or a man) dies every 69 seconds from BREAST CANCER .. as reported by Nancy Koomen (sister of Susan) on GMA, 11-20-10. Other media sources report that 1 women every 3 seconds dies of breast cancer. Odds are a little to high for me to gamble my life on.

    My personal choice .. I opted for double mastectomy ----with chemo therapy (difficult on me and my body, I will no tell you no lie!) ... many women endure milder side effort symptoms then I.

    There are support groups that help women deal with breast cancer, not to mention our loving and support site here .. where there we are opened 24/7. Including Holidays!

    Just my opinion.

    Strength and Courage,

    Vicki Sam
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Like others here, I had no
    Like others here, I had no choice about the chemo. But I'll share my thoughts anyway...

    Surgery and radiation are target treatments. They only attack the cancer at the site of the cancer. Chemo is a systemic treatment, it attacks cancer cells wherever they might be in you body. This, for me, makes chemo beneficial in a different way.

    I would also suggest that you ask about what they are recommending for your specific cocktail, how many cycles, and how many weeks apart. All of those things will make a difference in your reaction to the chemo.

    Finally, whatever you decide, we're here for you. You'll get advice and support to help you walk your journey. Best of luck with this difficult decision.

    Hugs,

    Linda
  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member

    Like others here, I had no
    Like others here, I had no choice about the chemo. But I'll share my thoughts anyway...

    Surgery and radiation are target treatments. They only attack the cancer at the site of the cancer. Chemo is a systemic treatment, it attacks cancer cells wherever they might be in you body. This, for me, makes chemo beneficial in a different way.

    I would also suggest that you ask about what they are recommending for your specific cocktail, how many cycles, and how many weeks apart. All of those things will make a difference in your reaction to the chemo.

    Finally, whatever you decide, we're here for you. You'll get advice and support to help you walk your journey. Best of luck with this difficult decision.

    Hugs,

    Linda

    My situation was nearly
    My situation was nearly identical to yours; small tumor, ER/PR+ and HER-, no lymph node involvement. I was offered a lumpectomy, but chose bilateral mastectomy.

    My OncotypeDX score was right smack dab in the 'gray area'; not a definitely high score, but not minimal either. I finally opted to do chemo. I had gone 'big' with a bilateral so why hesitate with using the chemo weapon on the arsenal? I had 4 cycles of chemo over two months time. Not fun, but do-able. Lost hair, energy, etc., but never suffered severe side effects. I think having only 4 cycles and having 3 weeks between each treatment really helped as far as tolerance was concerned. My sister suffered more issues when she had 6 cycles with only 2 weeks between.

    My decisions were based on my determination to do any and everything I could to lessen the chance of a recurrence. I never wanted to have another bout with cancer and have to ask myself if I could have prevented it if I had chosen mastectomy, chemo, etc. I have done everything I can do, including now taking Femara for the next 5 years, and if I ever have
    cancer again I can know that there was nothing else I could have done to protect myself. That's just me, lots of people choose other paths that are equally valid for them.

    Best thoughts and wishes to you as you wend your way through this part of the experience. I know that once I made up my mind I was able to rest easier and buckle down for the fight. The decision making is agony!

    Chickadee
  • PinkPearl
    PinkPearl Member Posts: 280
    Thanks everyone!
    Reading your thoughts and comments really helps me to sort it all out. I didn't expect to be in a place where I had so much choice--that is sort of a good thing and sort of not, if you know what I mean. I just feel like I am on a seesaw right now. Everything had pointed to no chemo (and no rads since I elected double mastectomy)... and now this high reoccurance score on such a small cancer. I admit I am really scared about side effects of chemo and how hard it is on the body. She said if I take chemo it will be 3 months of Taxol weekly and then 3 months of two other chemicals(I forgot their names) and then I think 5 years of Arimidex-the only one I was really expecting.
    Thanks again for your input. Two people -my husband and a close friend-seem to think the onc. is only trying to cross her t's and dot her i's in case cancer should reoccur--I don't think that-- but it upset me for them to think that. As you can tell my head is still spinning! Sorry!
  • Kylez
    Kylez Member Posts: 3,761 Member
    mimivac said:

    It's difficult to know
    But, if it were me, I would do chemo with your stats. Your tumor is small, but a 35 oncotype is a high score and indicates that chemo may be really effective for you. Also, the fact that you are ER positive, but PR negative may mean that your tumor is less sensitive to Tamoxifen, again indicating that chemo would be a good added benefit. See this article: http://www.medicalnewstoday.com/articles/30271.php

    Good luck on your decision. I know it's difficult.

    Mimi

    It is your decision and your
    It is your decision and your choice. I do agree with Mimi, the oncotype score is high, which I thought meant that you needed chemo. But, you do what you want.


    Good luck!
  • sal314
    sal314 Member Posts: 599 Member
    It's a Hard Decision, No Doubt About It!
    When I was diagnosed (91/2 years ago) they didn't have all the tests to see if I was "high risk" or not. I had no lymph involvement and contemplated not doing chemo for a about 2 seconds. After the doctor told me all the statistics of doing treatments vs. not, and the fact that I was fairly young (35) and had a 11/2 year old son, my decision was fairly easy to make! I wanted my "odds" of recurrance to be as low as possible! So...I opted to do chemo. Whether or not I really needed it, who knows. But I can rest in my heart knowing I did all I could to hopefully have it "gone for good"!

    Sit in the quiet and think it through. Follow your heart. When you feel totally at peace with your decision, you'll know you made the right one:)

    Blessings,
    Sally
  • cahjah75
    cahjah75 Member Posts: 2,631
    My surgeon
    didn't think I would need chemo or rads but oncologists felt differently. I had bilateral mastectomy for ILC and LCIS. My tumor was 6.1 cm and close to the chest wall. I did not have any lymph node involvement. I completed 6 rounds of Taxotere/Cytoxan in December and started 28 rads yesterday. I am ER/PR+ and HER2-. My onc also has me taking Arimidex for 5 years to stop the estrogen from being made in my body. I'm the 5th on both sides of my family with bc and my drs aren't taking any of it lightly. I guess I'll do whatever they think will lessen my risk of recurrence. I didn't feel like I had a choice.
    Char
  • joannstar
    joannstar Member Posts: 403 Member
    PinkPearl said:

    Thanks everyone!
    Reading your thoughts and comments really helps me to sort it all out. I didn't expect to be in a place where I had so much choice--that is sort of a good thing and sort of not, if you know what I mean. I just feel like I am on a seesaw right now. Everything had pointed to no chemo (and no rads since I elected double mastectomy)... and now this high reoccurance score on such a small cancer. I admit I am really scared about side effects of chemo and how hard it is on the body. She said if I take chemo it will be 3 months of Taxol weekly and then 3 months of two other chemicals(I forgot their names) and then I think 5 years of Arimidex-the only one I was really expecting.
    Thanks again for your input. Two people -my husband and a close friend-seem to think the onc. is only trying to cross her t's and dot her i's in case cancer should reoccur--I don't think that-- but it upset me for them to think that. As you can tell my head is still spinning! Sorry!

    In a way she is
    trying to dot her T's and cross her I's--but it is for YOUR BEST chance of not having a recurrence. I was discussing rads with my onc today before my last chemo treatment (of 6--all done yeah!) and when he said that he would have his wife do it, it re-affirmed my decision. As I said earlier, I want to do all I can in this battle. I have a new husband (married (my first) just 11 months, 5 months before dx--) and I want to be around along time. I'm just 58 and I consider that young.
    Good luck in your decision.
    Hugs,
    JoAnn
  • PinkPearl
    PinkPearl Member Posts: 280
    Thank you all
    Your input has really helped me to calm down and think about my options and I want every chance I can to beat this and I think the benefit of chemo increases my chances of doing that enough to go with it. Like several of you pointed out.. if it came back how would I feel not having tried everything I can at this point? My oncologist called me back Friday after she actually talked to the person at the lab who read my slide on the OncotypeDX. She also discussed it with her team and her recommendation is now to do chemo so I will go with that. I am meeting with her again this Thursday and taking one of my sons with me to listen. My husband works over seas and is only home every other month so that presents a bit of a problem but others have done chemo alone -I can make it :).
  • carkris
    carkris Member Posts: 4,553 Member
    PinkPearl said:

    Thank you all
    Your input has really helped me to calm down and think about my options and I want every chance I can to beat this and I think the benefit of chemo increases my chances of doing that enough to go with it. Like several of you pointed out.. if it came back how would I feel not having tried everything I can at this point? My oncologist called me back Friday after she actually talked to the person at the lab who read my slide on the OncotypeDX. She also discussed it with her team and her recommendation is now to do chemo so I will go with that. I am meeting with her again this Thursday and taking one of my sons with me to listen. My husband works over seas and is only home every other month so that presents a bit of a problem but others have done chemo alone -I can make it :).

    PP that is a courageous
    PP that is a courageous decision. I have always approached this with a do everything I can
    view. However i wasnt given the option so easy for me to say! LOL We will help you , perhaps not physically but you can count on us for support and advice!
  • Mom_Of_Many
    Mom_Of_Many Member Posts: 5
    PinkPearl said:

    Thank you all
    Your input has really helped me to calm down and think about my options and I want every chance I can to beat this and I think the benefit of chemo increases my chances of doing that enough to go with it. Like several of you pointed out.. if it came back how would I feel not having tried everything I can at this point? My oncologist called me back Friday after she actually talked to the person at the lab who read my slide on the OncotypeDX. She also discussed it with her team and her recommendation is now to do chemo so I will go with that. I am meeting with her again this Thursday and taking one of my sons with me to listen. My husband works over seas and is only home every other month so that presents a bit of a problem but others have done chemo alone -I can make it :).

    PinkPearl - You are
    PinkPearl - You are right - others have done chemo alone & you can too! :) It sounds like you have a support son - that will help. Look for support every place you can, you might find a support group to go to. The friends on here are a big encouragement - there's always someone who's been there/done that. Dec. 15th was my last of 16 chemo treatments!!! Yay!!! I went through it alone, so I know it can be done.
    Two days before my bilateral mastectomy (July 2010), I put my husband in the nursing home with his mom. Three yrs. ago he was in a rollover accident & broke his neck. I have done all his care at home since then (catheters, feeding tubes, I.V.'s, transfers, diaper changes, spoon feeding, etc ). My surgeon said I'd never be able to lift him or care for him again after my surgery, with no one else around to take care of him, I had no choice but to put him in the nursing home. (He's as helpless as a newborn baby.) He is laying a guilt trip on me for putting him in the home. I have 8 children still at home to take care of also. His mom has stage 4 Alzheimers, I've been her legal guardian for 5yrs.
    After my dx back in the Spring, I got govt aid & foodstamps to provide for the children & pay for the nursing home & my medical treatment. The ultra conservative church (that we joined 18 yrs. ago) ex-communicated me for getting govt aid, they don't believe in it. All my friends were in that church - they turned their back on me. My husband wants to stay with the church, I have started attending a more mainstream church. This & the guilt trip have really interfered with my relationship with my husband. He has not "been there" for me since I started testing for BC in March 2010. He is all about "me, me, me" & doesn't notice what the children & I are going through.
    Sorry to go on & on with my story. What I really want to share is that you can be strong & you'll make it on your own. Keep in touch with the friends on this web site - it is a big encouragement to read about others who have been there/done that. Check out other web sites also: www.ImermanAngels.org, www.chemoAngels.net, www.theLydiaProject.org. They give support through e-mail & snail mail. The Lydia Project sends a free tote with goodies in it (mine hasn't arrived yet, so I don't know what all is in it).
    Look for friends all around you. I like to quilt, so I recently joined a local quilting group. Find people with similar interests & get to know them. My Mom recently came up from FL to cold, snowy Iowa to drive me to radiation treatment that start this month. Since your husband isn't around look to other family & friends for support. Remember that this too shall pass - one day at a time - just keep putting one foot in front of the other & before you know it you'll be walking out the door of chemo for the last time! I'll say a prayer for you:) Cyndi
  • PinkPearl
    PinkPearl Member Posts: 280

    PinkPearl - You are
    PinkPearl - You are right - others have done chemo alone & you can too! :) It sounds like you have a support son - that will help. Look for support every place you can, you might find a support group to go to. The friends on here are a big encouragement - there's always someone who's been there/done that. Dec. 15th was my last of 16 chemo treatments!!! Yay!!! I went through it alone, so I know it can be done.
    Two days before my bilateral mastectomy (July 2010), I put my husband in the nursing home with his mom. Three yrs. ago he was in a rollover accident & broke his neck. I have done all his care at home since then (catheters, feeding tubes, I.V.'s, transfers, diaper changes, spoon feeding, etc ). My surgeon said I'd never be able to lift him or care for him again after my surgery, with no one else around to take care of him, I had no choice but to put him in the nursing home. (He's as helpless as a newborn baby.) He is laying a guilt trip on me for putting him in the home. I have 8 children still at home to take care of also. His mom has stage 4 Alzheimers, I've been her legal guardian for 5yrs.
    After my dx back in the Spring, I got govt aid & foodstamps to provide for the children & pay for the nursing home & my medical treatment. The ultra conservative church (that we joined 18 yrs. ago) ex-communicated me for getting govt aid, they don't believe in it. All my friends were in that church - they turned their back on me. My husband wants to stay with the church, I have started attending a more mainstream church. This & the guilt trip have really interfered with my relationship with my husband. He has not "been there" for me since I started testing for BC in March 2010. He is all about "me, me, me" & doesn't notice what the children & I are going through.
    Sorry to go on & on with my story. What I really want to share is that you can be strong & you'll make it on your own. Keep in touch with the friends on this web site - it is a big encouragement to read about others who have been there/done that. Check out other web sites also: www.ImermanAngels.org, www.chemoAngels.net, www.theLydiaProject.org. They give support through e-mail & snail mail. The Lydia Project sends a free tote with goodies in it (mine hasn't arrived yet, so I don't know what all is in it).
    Look for friends all around you. I like to quilt, so I recently joined a local quilting group. Find people with similar interests & get to know them. My Mom recently came up from FL to cold, snowy Iowa to drive me to radiation treatment that start this month. Since your husband isn't around look to other family & friends for support. Remember that this too shall pass - one day at a time - just keep putting one foot in front of the other & before you know it you'll be walking out the door of chemo for the last time! I'll say a prayer for you:) Cyndi

    Yep...we can be stronger than
    we ever imagined we could be. You have so much burden to bear without BC on top of it. Don't let the quilt trips from your husband get to you; there is just no way he can understand what you are going through. Your children need you and God loves you and that is what counts. People in any church can hurt you but God can heal you mentally even if he doesn't physically. Interestingly enough I love to quilt too and just joined in October a quilting group at my church. Good group of ladies. I am glad your mom came up to help you. My mom is elderly and actually can't help me physically now and she lives in VA a long way from TX. In fact she is here with me right now and I am caring for her while my sister in VA takes a break from her care. She arrived 3 weeks after my double MX in November--not great timing but I am okay and she flies back Jan. 20. Happy quilting and I am saying a prayer for you as well!! Merlyn
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    PinkPearl said:

    Thank you all
    Your input has really helped me to calm down and think about my options and I want every chance I can to beat this and I think the benefit of chemo increases my chances of doing that enough to go with it. Like several of you pointed out.. if it came back how would I feel not having tried everything I can at this point? My oncologist called me back Friday after she actually talked to the person at the lab who read my slide on the OncotypeDX. She also discussed it with her team and her recommendation is now to do chemo so I will go with that. I am meeting with her again this Thursday and taking one of my sons with me to listen. My husband works over seas and is only home every other month so that presents a bit of a problem but others have done chemo alone -I can make it :).

    That IS a courageous
    That IS a courageous decision. You can, and you WILL get thru the chemo, and we will be here with you every step of the way. Think of it as building up your own personal arsenal against cancer ;) Everyone's chemo effects are different. Just know that they have meds for just about any side effect you can imagine, and the nurses will take very good care of you. -off subject a little but it really takes a special kind of person to be a chemo nurse, doesn't it? Of course the hair loss is hard but it's only temporary, and there are lots of cute hats, scarves, etc out there! Or you can embrace it like my mom did - she doesn't wear anything on her head except when she gets outside (its COLD here in Indiana right now!). Whatever you choose, your beauty is NOT defined by your hair, and your inner beauty will shine through. There are some threads on here to some sites that give hats & scarves to chemo patients, and some others that sell nice ones.
    You CAN make it & you will!
    *hugs*
    Heather
  • aysemari
    aysemari Member Posts: 1,596 Member
    Like you
    at first they they thought I was HER- but then did and additional test and found I was
    HER2+, so that left me with no choice but to chemo.

    However, if it had been left up to me, and like so many here have pointed out, it is a
    very personal choice, i would do chemo. 24% is a high number. With deciding to go for
    a mastectomy after chemo, I brought mine down to less than 1%. This is a number that
    gave me peace of mind.

    I just feel we know so little about this disease, that I will throw everything I got at it.

    Good luck with your decision,

    Hugs,
    Ayse
  • the daughter
    the daughter Member Posts: 33
    same question- with less information
    Hi everyone,

    I dont know you but I already admire you. My mom was diagnosed with Breast Cancer this past Friday. Very hard..... We receive the results of what stage on Wednesday. I do know she has it in her lymp nodes... They are guessing stage 2 and 3I. The recommendation is chemo- then surgrey- then chemo again. My mom doesnt want ot do chemo and we really dontt know what to do but need ot decide by Wednesday when the biposy results come in.

    No one in my family knows anything about Cancer- we have faith in GOd but are scared...

    My mom went to the beauty salon yesterday and got her hair dyed and highlighted- I know the hairloss potential will send her over the edge..... I am praying if we need ot do chemo- that they can give her a minor dosage before surgery- one that will prevent hairloss

    My mom noticed the lump a few months ago- she wanted to wait for my brother to graduate in May and me get marrie din June before going to the doctor- luckly she went last week. It breaks my heart that she put her health at risk for our lives....