Looking for opinions on Chemo

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Hi.  This is my first post on this site and I am in need of opinions/thoughts.  I was diagnosed with stage 1 breast cancer in 2012. I had a double mastectomy and no treatments.  In April of this year I had my reconstructive surgery and they removed a small knot that came back as cancer.  My doctor calls it a recurrence but it came back in the EXACT same spot that my last cancer was and I just think that they didn't get it all the first time. So, I am 100% on board for radiation and am willing to take Tamoxifen (although I am very leary of it since it can cause uterine cancer) but I am so confused about Chemo!  My oncologist said that it would be a very small benefit for me, only about 5%.  I just don't know what to do. I don't ever want this stinking cancer to come back but chemo is so hard on your body I don't know if it would be worth it for 5%.  My oncotype is in the low risk.  I would greatly appreciate any advice or input.  I have to let them know by May 27th.  I am honestly scared to death of chemo.  I am 34 with 4 kids and just don't want to do it!  Who does, I know but I will if I need to I just don't know if I DO need to.  It is so scary to think that a single cell may have traveled to another part of my body and is just laying there waiting. Also, I should note that I had a PET scan and it came back clear (praise God!).  Thank you so much in advance for any help that you might can offer.


 

Comments

  • Holeinone
    Holeinone Member Posts: 2,478
    edited May 2014

    Southern, 

    Tough decision, I have seen some women get only 4-6 chemo infusions when there risk is not as high as some ( mine ). 

    It sounds like your oncologists is not pushing the chemo, but suggesting rads & Tamoxifen. I would definitely do both of those. Radiation is a cake walk compared to chemo. 

    You must be ER +, her-   ?

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2014

    The endometrial cancer risk with Tamoxifen for premenopausal women is only about 1%. Almost statistically insignificant.

  • Southernbelle4
    Southernbelle4 Member Posts: 5
    edited May 2014

    Yes, I am ER+ HER -. I do plan to do radiation and tamoxifen.  She told me she would understand if I chose not to do chemo. She also said that she honestly didn't know if she would do chemo if she was me.... it's just such a hard decision to make. 

  • Holeinone
    Holeinone Member Posts: 2,478
    edited May 2014

    well, I would ask IF you have chemo, what type, how often. Some are easier than others. Generally it's every 21 days. Mine were dose dense, meaning every 14 days. 

    I have a friend, whose cancer was not in any nodes but chose to do a shorter, lighter regimen. 

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    Southernbelle - even if you have chemo it will not guarantee cancer will not recur in future.  Once diagnosed with cancer we all have two different kinds of cancer cells, normal ones and stem cancer cells.  Chemo does NOT kill cancer stem cells and it is these that can create new cancers or recurrences in future.  Chemo only kills normal cancer cells - if you like the children of the mother (stem) cells.  So chemo will not give you what you want and for a 5% benefit could leave you worse off with side effects not to mention taking a year our of your life once chemo and rads are done..........chemo is not a cure all and is like killing your entire garden lawn to get a few weeds.  The tamoxifen may well do a lot more positive than chemo.......There are other things you can do to give more than a 5% survival benefit like diet, daily exercise etc....all of which have been studied and are not wacky or clinging to hope type ideas.  

    I hope I have helped and not scared you. The reality is that there is no guarantee at all once you have had cancer once - good luck.

  • Maureen813
    Maureen813 Member Posts: 2,893
    edited May 2014

    it's difficult to offer an opinion lacking information. Did you have any positive lymph nodes? Er and pr positive? Did they test both tumors? Assuming yes but don't take anything for granted. 

  • Southernbelle4
    Southernbelle4 Member Posts: 5
    edited May 2014

    sorry! I thought I had listed all of that at the bottom of my page. .. guess it isn't showing up. No positive lymph nodes. Test both tumors? Other than knowing that they were cancerous? 

  • Southernbelle4
    Southernbelle4 Member Posts: 5
    edited May 2014

    Lily55, no, you haven't scared me.  This is what I was looking for.  Information.  I didn't know about the stem cells.  I think though that the 5% that I mentioned may have been misunderstood?  I'm currently cancer free.  I would only be doing chemo as a preventative measure since I have had it twice now.  Although as I mentioned above I don't think that they got it the first time.  Please forgive my slowness.  I have not learned all the cancer lingo and am still trying to get a grip on all this.  I thought when I had my mastectomy 2 years ago that I would be done with all of this and so I never did any research or anything.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    No the 5% is a 5% risk of what is the normal risk for someone with your statistics, it is not 5% of 100%.......I get you have no evidence of disease but you will still have cancer stem cells, same as me and everyone who has ever had cancer. All we can do is our best to ensure they do not get the food they need or the growth triggers to start breeding more cells again - hence Tamoxifen. Have a read here to see if it helps you - you might need to copy and paste the below in to your browser but its on this site

    http://www.breastcancer.org/risk/understand/abs_v_rel

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    Here are some other links that may help you too

    http://www.breastcancer.org/research-news/20140324

    http://www.breastcancer.org/research-news/20140404...

    http://www.breastcancer.org/research-news/healthy-...

    What matters is that you are happy with the decision you make.......I was strongly recommended chemo and after a lot of thought, research and listening to my inner self I refused and I am happy with the decision I made no matter what happens I know it was the right call for me given my wider health status and bodily idiosyncrasies. 

  • yensmiles
    yensmiles Member Posts: 260
    edited May 2014

    Thank you Southenrbelle4 for starting this thread and thank you Lily55 for the information on cancer stemcells (new to me). 

    I am feeling lost at this moment, and looking to hear more opinions too. My tumour was removed with lumpectomy (1.7x1.5mm) and because it's HER2+, my surgeon says "you will need chemo" which scares me, and thus far, an oncologist and a breast cancer researcher said the same thing. The oncologist goes further to say i need Herceptin, which my surgeon thinks is not worth paying (RM150,000) for a 1% risk reduction.

    All i wanted was plain, simple radiation and that's it! Now i've been googling and still not finding peace with chemotherapy..argghh.. i'm even wondering if my resistance to it would make me suffer from worse side effects..

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    Yensmiles - does this help? 

    http://www.breastcancer.org/symptoms/diagnosis/her...

    As you can see you might think worth while you asking for a second pathology analysis at a different laboratory as Her status can be wrongly diagnosed and there is a lot of detail you may find helpful in reaching your decision. Do you have a full copy of your pathology report?

  • Southernbelle4
    Southernbelle4 Member Posts: 5
    edited May 2014

    Thank you Lily55!  I will definitely check out the links.  So, based on all of this I'm thinking that chemo wouldn't be that beneficial at all for me?  Also, I am to take Tamoxifen for 10 years.  What then?  If I quit taking it after 10 years does it allow the cancer to begin to grow again?  I'm sorry if I'm asking dumb questions, I don't mean to!

    Yensmiles, deciding whether or not to take chemo is the hardest decision I've ever had to make.  I'm glad that this post has helped you, I know it has me! 

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    Southernbelle - may I suggest you read the links then just sit with that info, have a few nights sleep and then see what feels right to you?  

    THe fact that your doctor says she does not know if she would do chemo with your stats says a lot but YOU have to make the right decision for you. Some people with low risk have chemo and get recurrence, others with higher risk don´t do chemo and don´t get recurrence.......the worst thing of all of this is learning to live with the unknown and lack of guarantees, we are never cured, the best we have is no evidence of disease. 

    The ten year question is a good one and I don´t know the answer...!!!!

    Google is not helpful as it has a lot of outdated info and at times it is plain wrong.........

  • yensmiles
    yensmiles Member Posts: 260
    edited May 2014

    Thanks Lily55, my HEr2+ has been confirmed by two tests.. :( unfortunate. cos everything else about the tumour was "not too threatening"... this chemo issue is really keeping me awake unnecessary.. shall just shut down and zzzz.. it's 1am where I am now!

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited May 2014

    southernbelle, this is a tough decision for you. My onco score was 21-in the intermediate range. I chose chemo simply bc I am otherwise healthy and wanted to do all I can, while I can, to keep it from coming back...even though I know there are still no guarantees. For me, it was more of an emotional decision based on any regrets or doubts that might surface later should I have a recurrence...just peace of mind for me, really. As far as my chemo, it wasn't too bad. I had minimal side effects. I don't want to do it again, but it was not as bad as I thought it would be, by any means. Of course, I don't have a young family at home to care for. either. I live alone and didn't need any outside help through it all. My dear friend took me to my chemo TX's, for support, but I could've gone by myself. You could always get a second opinion if that might make it easier for you to decide. The ladies here have given you some great insight.  Wishing you the best!

  • yensmiles
    yensmiles Member Posts: 260
    edited May 2014

    Keepthefaith, would you share more about the side effects you and whether it's "cleared" by now? Those would be the drugs I'd take if I choose Herceptin.. and I am so worried about side effects.. from losing hair permanently on Cytoxan to having nerve problems for life on Taxotere.. gosh.. i feel i won't do myself justice if i don't research enough before making a decision, yet the more i read, the greater the anxiety at times.. do share please!

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2014

    Where do you live Yensmiles?  

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2014

    for 5% i wouldn't do it.  I had one dose of taxotere and still have neuropathy and very slow hair growth (less than an inch in over 6 months). I have a 30% chance of recurrence and am still relieved that chemo was cancelled for me.  

    I think it is an individual choice though. If you would obsess over the 5% then it might be worth suffering the side effe ts to feel that you did all you could. The fact that your doctor said she probably wouldn't do it should set your mind at ease somewhat.

  • yensmiles
    yensmiles Member Posts: 260
    edited May 2014

    Lily55, I live in Malaysia. 

    Wrenn, yeah I was thinking too.. 5% benefit for all those side effects.. it's the HER2+ that they are concern about.. chemo for sure recommended by my surgeon and breast cancer researcher.. Herceptin with less side effects by oncologist as an addition to it. The chemo is worrying because I DON'T want to do it, yet based on "professional opinion" i'm wondering if i'm "suicidal" in that sense... am determined to consult yet another oncologist within the next few days as time is a factor for me now. On Tuesday, it'd be 4 weeks since lumpectomy and really time for radiotherapy/chemo/HErceptin or the start of all 3. Wrenn, thank you for sharing your experience. Why did you have only one dose? Was it the side effects that led to the stop of it? I think normally it's at least 4 doses right? 4 doses of the drug combo you had. and your tumour is also very small, why did you have a 30% chance of recurrence?

  • wrenn
    wrenn Member Posts: 2,707
    edited March 2018

    i have triple negative grade 3 which is considered aggressive. I was told that with chemo there was 20% chance of recurrence and without chemo it went up to 30%.

    My chemo was stopped after the first dose because the taxotere caused diverticulitis and i spent 2 days in hospital resolving that. The oncologist said that taxotere was known to cause bowel perforation and he didn't want to kill me so would stop.

    Some days imthink i'm cured and some days i imagine it has returned. I think we will worry no matter what but quality of life is important and chemo decreases that in some cases.

    It is not an easy decision. I hope you can make one you are comfortable with. Best of luck to you.

  • yensmiles
    yensmiles Member Posts: 260
    edited May 2014

    Thank you Wrenn for sharing and may each day sees in you better health and more luxurious hair! :)

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