• bettyboopdcp bettyboopdcp
    September 26, 2009
    stage 1 triple negative--refuse chemo?
    bettyboopdcp bettyboopdcp
    September 26, 2009

    I had a stage 1 grade 3 triple negative1.26cm tumor removed 3 weeks ago. Onc wants me to do Chemo because of the trple neg grade 3 status. I have one close margin and am to get radiation boost to compensate for that. My surgeon and radiation onc agree this will be fine. But if I do chemo and that will delay radiation by 6 mos. I want to just do the radiation. I am more afraid of chemo than anything and fell my most vulnerable point is that close margin. Any adivce?

    READ MORE

FROM OUR EXPERTS

  • PJ Hamel
    Health Guide
    September 27, 2009
    PJ Hamel
    Health Guide
    September 27, 2009

    My feeling is that you're putting yourself at risk refusing chemo. I'd feel less strongly about this if you weren't triple negative, but with your type of cancer, not being able to rely on long-term hormone therapy for protection, it's now or never - you have to get that cancer NOW, because there's no staving it off later, if it's managed to spread at all.

     

    If it's because you're afraid of chemo, you may be reacting to stories you've heard from people who experienced it long ago, when it really was a nightmare. The chemo itself, as well as treatment for its side effects, is so much better now than it was in the past. Yes, you lose your hair; but it grows back. Yes, it's a long slog - fatiguing, with unpleasant side effects - but those can be treated. The standard of care for triple negative breast cancer is chemo, and i'd hate to see you deviate from that, out of fear...

     

    Tough decision, I know, and you need to make it yourself. It's YOUR body, and you'll live with it the rest of your life. But that's my opinion. Good luck - PJH

    • Sharepoint
      October 18, 2009
      Sharepoint
      October 18, 2009

      http://cancertutor.com/ChemoSpill/chemospill.htm

       

      This is about what they need to do when they spill some of the chemotherapy drugs they pump into your bloodstream. The chemical burn on the nurse's hands in the picture is from having the solution that goes into YOUR CHEMO DRIP accidentally run over her bare hands,

       

      the question you may want to ask yourself is really, if it's that bad on the outside of the skin what the hell is it doing to my insides.

       

      Google for chemotherapy and spills and check out the elaborate procedures staff have to observe when handling these ready to IV solutions, the chemo nurse does not wear gloves for fear of viral or bacterial contamination than of fear of poisoning herself as even small quantities of the drugs can cause noticeable effects even on staff. 

       

       

       

      READ MORE
    • PJ Hamel
      October 18, 2009
      PJ Hamel
      Health Guide
      October 18, 2009

      It's true the chemotherapy drugs are toxic and poison; we all know that. But they're given in a controlled manner, and they DO kill cancer. Yes, they kill other cells too, such as hair follicles and mucous membranes; chemo is still fairly primitive. But it's our only choice right now, unless we want to rely on unproven alternate therapies, or on luck. Each of us makes her own decision. PJH

      READ MORE
    • Dr. Flora
      October 30, 2009
      Dr. Flora
      October 30, 2009

      I'd like to perhaps suggest a less potentially dangerous approach. I can assure you as a board-certified Medical Oncologist that in ten years of delivering such "poisons" I have seen countless people saved/cured and or suffering improved with a JUDICIOUS and careful selection of agents on a case-by-case basis in an individual discussion between a doctor and his or her patient.

       

      For a lymph node positive, resected ER negative breast cancer these drugs will save 30-40 women who might otherwise die a painful death due to breast cancer. This adds up to tens of thousands of moms, sisters, friends. These "spills" of chemo are highly avoidable with good IV access (ports), well-trained nurses and careful administration. More importantly, the MAJORITY of drugs pose no such danger, especially the newer ones.

       

      I personally have seen only one case of such traumatic spill, and the guy did fine. incidentally, we had repeatedly recommended that he get a port-a-cath to avoid exactly that complication.

       

      Please if you read these sites SPEAK TO YOUR DOCTOR so that you can receive the important information needed to make whatever decision is right for you and your family. A 1 in 1200 chance of a skin burn should not dissuade 1200 women whose lives would be saved by the same "poison".  To avoid chemo in a triple receptor negative breast cancer is an unfortunate and ill-advised decision, and ignores very strong evidence suggesting its benefit. these tumors are aggressive and are a 6-7X higher risk for recurrence than an ER positive breast cancer of the same stage.

       

      Do not get medical advice from poorly informed, anecdotal evidence on the web. This person above is not only poorly informed, but may have actually cost some reader his/her life if they took warnings out of context to heart.

       

      D.Flora MD  Board Certified Medical Oncologist.

      READ MORE
    • PJ Hamel
      October 30, 2009
      PJ Hamel
      Health Guide
      October 30, 2009

      Thank you so much for connecting here and offering your medical wisdom, Dr. Flora - I hope our readers take your words to heart. PJH

      READ MORE
    • Sheila Wolfe
      December 23, 2010
      Sheila Wolfe
      December 23, 2010

      You are not a doctor and should not be giving advice to anyone. Sheila Wolfe

      READ MORE
    • Sheila Wolfe
      December 23, 2010
      Sheila Wolfe
      December 23, 2010

      You are not a doctor and should not be giving advice to anyone. Sheila Wolfe

      READ MORE
    • Sheila Wolfe
      December 23, 2010
      Sheila Wolfe
      December 23, 2010

      You are not a doctor and should not be giving advice to anyone. Sheila Wolfe

      READ MORE
    • Debbie
      February 02, 2012
      Debbie
      February 02, 2012
      I also have triple negative cancer. I have been through one treatment and it was awful but I prefer to live a long life and not worry that there is more cancer hiding somewhere else. I am an unusual case as far as my reaction to chemo. The other women have no problems other than fatigue for a couple of days. My doctor is willing to try everything to ease my side effects. It is not a hard decision for me to continue chemo. I have to for my well being. READ MORE
    • Phyllis Johnson
      February 02, 2012
      Phyllis Johnson
      Health Guide
      February 02, 2012

      Debbie, I'm sorry your first chemo was awful.  It sounds like you are ready to stick it out even if the next ones are too.  I just thought I'd share my experience with you.  I vomited the first night after Adryamycin/Cytoxin on treatments #1 and #3, but not at all on treatments #2 and #4. 

       

      So don't assume that each treatment will be the same.  Your doctor's change in dosage and/or medications may take care of the problem, or you may come up with some adjustments that make a difference.  Nothing can make chemo fun, but at the end of it all, you will know you have done everything possible to keep your triple negative breast cancer from recurring.

      READ MORE
    • nectar Kalajian
      March 10, 2012
      nectar Kalajian
      March 10, 2012

      Do you mind if I ask how old are you? my mother is 84 years old and was diagnosed with triple negative cancer, she had mestactomy and now she refuses the chemo treatment.  Her doctor told us she has 50/50 chance she will have re-occurance in three years, if she goes through the chemo her chance will reduce by only 5-7%? due to her age we are not sure if we should push her t go through chemo.

      READ MORE
    • PJ Hamel
      March 11, 2012
      PJ Hamel
      Health Guide
      March 11, 2012

      Please don't push your mom to go through anything. Ultimately, it's her body, her experience, and she's the one that will live with whatever decision is made - best it's her decision. I'm sure she's thinking that a 5% to 7% reduction in recurrence risk (and check with her oncologist to make ssure you all understood that correctly) isn't worth the side effects of chemo, and personally, I'd tend to agree with her. I went through chemo at age 47, and it was a huge challenge; can't imagine doing it at age 84.

       

      I think your best course of action is to support her in whatever decision she makes; and hope she's in the 50% that doesn't have a recurrence. If she doesn't choose chemo, and does have a recurrence, continue to support her - no guilt, no recriminations. You're all in this together, and making the best decisions you can. Best of luck to you - PJH

      READ MORE
    • connie leon
      July 30, 2012
      connie leon
      July 30, 2012

      I agree with her opinion I too have triple negative stage 1 grade 3 1.5 centimeters with clear margins. I started chemo and it really isnt that bad, and as far as losing your hair, there are so many hats and turbins that you can look cute in. Believe me I had a hard decision to do this. If you want to live a long life I recommend the chemo. I too have to have radiation. Good luck

      READ MORE
    • PJ Hamel
      July 31, 2012
      PJ Hamel
      Health Guide
      July 31, 2012

      Lots of research is being done on triple negative breast cancer these days, Connie. Hopefully soon researchers will come up with more long-term treatment options to help prevent recurrence. Best of luck to you - PJH

      READ MORE
  • Phyllis Johnson
    Health Guide
    September 27, 2009
    Phyllis Johnson
    Health Guide
    September 27, 2009

    Amen to everything PJ said.  Many of us know people who went through chemo in the bad old days and don't have an accurate picture of what it will really be like.

    Chemo will kill cancer cells that may have already escaped to other parts of your body; those are the cells you really need to be concerned about.  The radiation will mop up anything the chemo misses.

    If you are not sure about whether your oncologist's recommendation is the best one for you, consulting with another oncologist for a second opinion could help you decide.  

    • bettyboopdcp
      September 27, 2009
      bettyboopdcp
      September 27, 2009

      Thank you both for your words of wisdom.

       

      My fear of chemo is not the loss of hair or feeling sick or any of that. Nor based on how it used to be.

       

      I am afraid of the long term effects of the chemo. Neuropathy, heart problems and cancer of the blood. Mostly because my Dad had a heart attack at 45 which was a muscle tear, he died from a plastic anemia which was not enough white cells, my Mom has neuropathy-that is partially why she has so much trouble walking. She has a lot of numbness. In addition I have one close margin. The surgeon and radiation oncologist are well aware and I am to get extra radiation to compensate. If I do chemo then the radiation is delayed. I am afraid that since the margin is close the delay in radiation can cause it to spread. Seems to be that this is my major pont of vulnerability.

       

      My Mom had breast cancer at my age (62). No idea if she was triple neg or not. She had a radical Masecomy and no treatment at all. She is now 88 and has never had a recurrance or any distant cancer.

       

      My onc said that there is a 20% chance it will come back. If I do chemo that goes down to 10. So for a 20% chance I even need it, i get a 50-50 chance it will work. In the meantime I loose almost a yr of my life to feeling like crap, a life which might be cut short anyway and the pleasure of taking the risk of the long term side effects which also might kill me or make me sick forever.

       

      But according to my onc if it returns it will kill me. Offered no tests ie oncytype ( I know that is  for positive not neg but has been used for neg) or Pet scan. I specifically asked about PET and he said no it would not show anythig.

       

      I am meeting with my surgeon to discuss the margin issue tom. I have an appt at Mayo clinic on Fri but I fully suspect they will tell me to have a reincision or masectomy followed by chemo. All to fix something I  don't know is broken.

       

      Sorry for being synical. I am on my last nerve.

       

       

       

       

      READ MORE
    • PJ Hamel
      September 27, 2009
      PJ Hamel
      Health Guide
      September 27, 2009

      Well, sounds like you've done the research, and thought long and hard about this. One more thing I'd suggest - find out if the chemo they'd offer has neuropathy and/or possible heart damage as a side effect. I know an anthracycline (e.g., adriamycin) can cause heart damage, and a taxol can cause neuropathy. But there are other chemo drugs that cause neither, so see if something from that latter group would be recommended. If so, you still might reconsider... My chemo took 3 1/2 months, and the only lasting side effects were menopause (which you no doubt have already been through), and some weird occasional itching. I even got curly hair in place of my straight - which was a bonus!

       

      Luckily, no one is forcing you to do anything - this is totally up to you. If the extra 10% reduction in risk isn't worth the extra aggravation to you, then heck, don't do it. Make your decision the decision that's right for you - and don't look back. Go for it with complete confidence. PJH

      READ MORE
    • bettyboopdcp
      September 27, 2009
      bettyboopdcp
      September 27, 2009

      PJ

       

      Thanks so much for your thought. The  chemo he proposed was ACT so adiamicin and nueropathy are there. He knows my dad and mom's history although I don't think I mentioned the muscle tear as I did not know about adriamcin when I saw him.

       

      I will post again after I see my surgeon. The margin is a real concern.

       

      Thanks again

       

      diane

      READ MORE
    • PJ Hamel
      September 27, 2009
      PJ Hamel
      Health Guide
      September 27, 2009

      Ah, then you do have the adriamycin and taxol... too bad. OK, I'll await news- PJ

      READ MORE
    • Martha
      September 28, 2009
      Martha
      September 28, 2009

      Everyone is different when it comes to reactions to chemo. I had triple negative breast cancer stage 2b in 2007 and am now 62 and in remission for a year and a half. I went through chemo --

      12 weeks of Taxol once a week at a smaller dosage rather than once every 3 weeks. This was pretty easy. I took gabapentin for the neuropathy...it worked....no neuropathy. Then FEC regimen every 3 weeks.  The E is epirubicin the newer sister drug of adriamyacin. I never got sick, I didn't feel so good but that only lasts a few days. They give you a neulasta shot to build up your white blood cell count when it goes down.  Then I had radiation. That was easy. I think if you choose not to do chemo and then get cancer again, you'll always wonder if you should have listened to the doctors. You can always change your mind while your taking chemo, but I think you should give it a try if your doctors are recommending it.

      Another thing...there is a test called a CTC (circulating tumor cells) which finds out how many cancer cells are floating around in a small amount of your blood. This may still be experimental but it is an indicator to see how your cancer is responding. After the taxol treatments, I had one cell...then after the FEC, I had zero cells. This was very reassuring to me.

      READ MORE
    • PJ Hamel
      September 28, 2009
      PJ Hamel
      Health Guide
      September 28, 2009

      Thanks for taking the time to respond here, Martha. This is all good feedback. I had FEC, too, and like you, really didn't get very ill... just queasy. Mouth sores were the worst part of it. And yes, the radiation was a piece of cake. Guess we're just lucky! PJH

      READ MORE
    • bettyboopdcp
      September 29, 2009
      bettyboopdcp
      September 29, 2009

      Thanks for the input. I never heard of this test so that was really helpful.

      READ MORE
    • Brat
      October 19, 2009
      Brat
      October 19, 2009

      I am currently dealing with stage 1, triple negative, grade 3 tumor.  This is my second bout of Breast Cancer however, they are not related. First one 7yrs ago, was stage IIB er +, grade 3.  I had a lumpectomy, chemo (cytoxin, adriamyicin) and radiation.  This time I had a bilaterial mastectomy and started Chemo (cytoxin, taxatere)  The side effects have landed me in the hospital twice and that is only after the first treatment.  After much discusion with my Oncologist it has been decided that I will no longer be doing Chemo. I fully plan to live a long and healthy life. Noit doing Chemo is not a death sentence and do not let other people put the old if it comes back it's your own fault as that is sooo not the way to look at it.  It could come back in either case or not come back. Self recrimination is so harmful and no not listen! Please remember that it is ultimitely your decision, you know your own body and everyone reacts differently.  Make the choice that you feel in your heart is right for you and move on to taking the best care possible.  Best of luck, I'm right there with ya!

      READ MORE
    • bettyboopdcp
      October 19, 2009
      bettyboopdcp
      October 19, 2009

      Thank you for sharing. I decided to just do rads. I went to Mayo Clinic and got the same story. 80-85% I am fine. if I did Chemo I could go to a 90-10 chance which is a 50-50 shot the chemo helpes. To me that was not worth risking the side effects. I am 2 weeks into Rads and doing just fine.

       

      So sorry to hear how you reacted to chemo. Hope you recver quickly and I will add you to my prayer list.

       

      Diane

      READ MORE
    • Brat
      October 19, 2009
      Brat
      October 19, 2009

      Thanks for sharing, it helps to find people of a like mind.  Actually my Doc said Chemo only really ups your chances by 3%, but it was his job to push it.  Best of luck to you as well.  God Bless!

      READ MORE
    • diana
      October 25, 2009
      diana
      October 25, 2009

      i am stage 2, and i still refuse chemo. My first diagnosis was 8 years ago. medullar, mastectomy, no treatment. now it is medullar again, no lymph nodes; i do not know where my colleagues are getting the statistics for chemo, i have found it hard to find anything not hearsay.  i do not know if one has to risk all of the complications for 6 %. or worse, 3%. please if you are seeing any research on the subject, link it?

       

      READ MORE
    • PJ Hamel
      October 25, 2009
      PJ Hamel
      Health Guide
      October 25, 2009

      Your best source for real-time results from clinical trials would be the breast cancer section of the National Cancer Institute Web site. If you familiarize yourself with this site and peruse it regularly, searching on "triple negative," you may find some updates. Another route to take is setting up a Google news alert for "triple negative breast cancer" - that way when any new information comes out, an alert is sent to you via email. Hope this helps - PJH

      READ MORE
    • diana
      October 25, 2009
      diana
      October 25, 2009

      i am really upset. this is information is abusive. i really hope no one is misled by you.

      READ MORE
    • PJ Hamel
      October 25, 2009
      PJ Hamel
      Health Guide
      October 25, 2009

      Diana, if you think the National Cancer Institute prints abusive, misleading information, then I guess I don't know what else to say to you - except I wish you a full recovery and a long, healthy life. PJH

      READ MORE
    • diana
      October 25, 2009
      diana
      October 25, 2009

      I do not think national cancer institute prints abusive or misleading information. I think telling someone to "google it" is abusive. when people are looking for advice the last thing they need is that. we have have googled it many times already.

      READ MORE
    • PJ Hamel
      October 26, 2009
      PJ Hamel
      Health Guide
      October 26, 2009

      Diana, I apologize - I misunderstood you. I'm sorry you think I'm being misleading and abusive by suggesting you access other sources on the Internet for advice. Re-readng your question and thinking about it more, considering it's about recurrence statitistics, I think it's a question you'd best ask your oncologist. Only s/he knows the particulars of your cancer well enough to take the national averages, and factor in the aspects of your case that might change those numbers.

       

      I don't mean to NOT answer your question, but want to make sure you'll get the best answer, which can come only from your own doctor. We're not doctors here; and even if we were, we wouldn't know about your own case like your personal doctor does. We can give general advice, encouragement, and use some basic facts in doing so, but for really specific medical information - e.g., recurrence rates for particular types of cancer using specific types of chemo – it's always best to speak with your own doctor, not to try to find an answer online, OK? Best of luck to you - PJH

      READ MORE
    • valerie
      January 25, 2010
      valerie
      January 25, 2010

      I suggested to my GP that I would like a second opinion and he advised me that was not a good idea as time was of essence and I would have to wait as Oncologists do not like to "pit their recommendations' against another Oncologist.

      READ MORE
    • PJ Hamel
      January 25, 2010
      PJ Hamel
      Health Guide
      January 25, 2010

      This doesn't sound right; admittedly, doctors aren't usually thrilled that you're seeking another opinion, but they should encourage you to do so, and should suggest a couple of names. This isn't "pitting recommendations against one another;" it's two professionals putting their heads together to come up with the best answer, the one that'll help you the most (not prove one or the other "right" or "wrong"). Unless your cancer is very advanced, and the wait for a second opinion would be very long, I'd insist on getting another opinion - preferably at a Comprehensive Cancer Center, if you're close enough to one to be able to access it. Oftentimes women who get a second opinion at a CCC find that it's different than their first doctor's opinion... good luck - PJH

      READ MORE
    • Phyllis Johnson
      January 25, 2010
      Phyllis Johnson
      Health Guide
      January 25, 2010

      Valerie, in general breast cancer is a slow-growing disease, and there is time to consult with more than one doctor.  In the cases where a patient has an especially aggressive form of breast cancer, it is even more important to be sure to start with the best treatment.  

       

      Sometimes there is a clear protocol for a certain stage or type of cancer.  For example, almost every doctor would recommend Herceptin for a patient with a Her2neu positive tumor who didn't have heart problems.  If you are in a situation where most oncologists agree on a particular treatment plan, then a second opinion might not be necessary.  However, you have probably asked for a second opinion because you are in some kind of borderline area.  You want a doctor who can collaborate with others.  If you can get an appointment set up quickly, I'd encourage you to get a second opinion so that you can proceed with confidence.

      READ MORE
    • valerie
      January 27, 2010
      valerie
      January 27, 2010

      Thank you so much for your replies.  Yes, I do have other underlying health problems.  I have a left branch blockage to my heart which I received 8 years ago with Heart Failure.  I am also Diabetic.  I was not given Chemo.

      I have had a partial masectomy.  Some Sentinel Lymph nodes were removed and showed they had spread to the Axillary lymph Nodes.  I then had some Axillary Lymph nodes removed and thank God they had not spread from the Axilia.

      I was given 16 sessions of Radiation and put on Arimidex.  When I questioned why Arimidex and not Tamoxifen I was confronted with a 'curt' reply from the Oncologist who said.  "We are putting you on Arimidex.  I asked further why?  (I am very persistent!)  At this the Oncologist said the plain answer to that one is Arimidex is better than Tamoxifen.  My file was then abruptly closed and I was told to wait in the Waiting Room for my medication!.  Which I did.  It is now 4 months since I finished Radiation and I am so lucky to have the support of my husband and family.  I am feeling very well.   I just have this little nagging feeling in the back of my mind whether I have been given the best treatment?  Of the people I know who have had cancer they had not heard of Arimidex.  My cancer is Estrogen driven and apparently from my G.P. he said that was the reason I was put on Arimidex.  My cancer was stated as Stage 2.

      I have tried to make this posting before but it didn't seem to work.  So, I do apologise if this is a double taking of that posting.

       

      READ MORE
    • PJ Hamel
      January 27, 2010
      PJ Hamel
      Health Guide
      January 27, 2010

      Well, your doctor's right - Arimidex has been proven more effective than tamoxifen at preventing recurrence in postmenopausal women with estrogen-receptive cancer. So you're receiving the standard of treatment here - and if this is what you're looking for a second opinion about, you probably wouldn't need to bother, as the evidence is in and it's clear. However, it's good you're persistent - and there's no reason not to seek a second opinion whenever you feel uncertain about any aspect of your treatment.

       

      Glad you're doing well on the Arimidex. Good luck - PJH

      READ MORE
    • Phyllis Johnson
      January 27, 2010
      Phyllis Johnson
      Health Guide
      January 27, 2010

      Arimidex is a very effective treatment for an estrogen-driven breast cancer.  It sounds like part of the reason you wanted a second opinion is because your doctor isn't communicating very effectively with you about the reasons for his decisions.  Many patients want a doctor who makes the decisions and doesn't worry them with the details.  It sounds like you are not that type of patient.  You want to know why medical decisions are made, and with your previous history of heart problems and diabetes, you probably have developed some expertise in understanding medical issues that affect you.  I don't know what your options are as far as doctors go, and you are now on follow-up treatment, so maybe it doesn't matter; but if you have options for finding an oncologist who is a better match for your questioning personality, I'd encourage you to consider switching.  Your doctor is probably very medically competent and a great match for many patients, but in an ideal situation, you should get more comprehensive answers to your questions and a willingness to refer for a second opinion.

      READ MORE
    • valerie
      January 27, 2010
      valerie
      January 27, 2010

      Thank you so much for the reassuring posts on Arimidex.  I am sure I am in the best hands.  My Oncologist might not have the personality I would wish.  I do not want to "rock the boat".  I am doing well and that is the most important thing.  Thanks again for the replies I received.

      READ MORE
    • Phyllis Johnson
      January 28, 2010
      Phyllis Johnson
      Health Guide
      January 28, 2010

      Medical competence is more important than "bedside manner" so I'm glad that your overall confidence in your doctor is high.

      READ MORE
    • nergpls
      November 14, 2010
      nergpls
      November 14, 2010

      I am ten days past a mastectomy of right breast for Triple Negative Beast Cancer. I had two lumpectomies in February, chemo (6 infusions of 995mg cytoxan and 125 mg taxtotere...) which completed on June 14th and 33 radiations (last 5 were boosts to cancer site) from August 1st to Sept.17th.  Nine days after radiation was completed the Aug.2nd mammo showed the cancer was still there and the breast had to come off.   I am now faced with more chemo or taking the risk that it did not spread during these months/years it was there.  I am terrified of either decision. Biopsy showed two small tumors .2MM and .4mm remained in the breast.  New Surgeon Oncologist said damage from radiation was "massive".

       

      Can a person have chemo twice in one year?  Will long term damage be done to my heart, liver, kidneys,bladder?  Just clearing up from chemo brain and feet are still numb and cold. As the tumors were so small, could they have been kept from growing and spreading due to the chemo and therefore, no further systemic chemo is needed?  Help!  I need to understand my options...

      READ MORE
    • Phyllis Johnson
      November 14, 2010
      Phyllis Johnson
      Health Guide
      November 14, 2010

      Those are small tumors, and, yes, there is a good chance they stayed small because of your earlier treatment.  Unfortunately, that treatment did not eliminate them completely, so apparently your doctors are somewhat concerned that any undetectable cancer cells may have also survived the first set of chemo treatments.  Yes, it is not unusual for people to need extra chemo after the pathology report comes back.  Your doctor would probably choose different drugs this time, and you might find you tolerate them better.  Whether you will have organ damage from the chemo is unknown just as it was with your first set of chemos, but your doctors should monitor you to try to avoid it.  

      This will be a difficult decision.  When i hit a similar problem in my own treatment, I got a second opinion at a comprehensive cancer center.  Then my husband and I sat down and listed all the risks and benefits we could think of--both medical and personal.  It was agonizing because either decision held such terrible risks.  Once we had our list, I went with my gut about what was best for me.

      i wish you the best as you make your decision.  Once you decide, try not to second guess yourself.

      READ MORE
    • m puckett
      April 05, 2012
      m puckett
      April 05, 2012
      I had stage 2 breast cancer in 2000. I was age 60. I took 6 mos. of chemo and 31 days of radiation. After that I was put on tamoxifen for around 3 mos., and then my oncologist changed me over to arimidex, which I took for 5 years. I had akbsolutely no side effects or problems with the arimidex, and I have been cancer free until last week, and my breast cancer came back in my liver. Although it's in my liver,it is still breast cancer. I start chemo next week, and may have to take the arimidex also. I can say from experience that arimidex is a wonderful cancer drug, and I highly recommend it.my cancer was estrogen driven also. I hope this is helpful to you. God bless you, and you are in my prayers. Margie READ MORE
    • PJ Hamel
      April 05, 2012
      PJ Hamel
      Health Guide
      April 05, 2012

      Margie, I'm so sorry you're having to go through this again; you did everything you could the first time around, and for it to come back 12 years later... well, that's just devastating. I'm glad you had a good experience with the Arimidex, because you'll possibly be taking it again, as you say. Best of luck with the chemo - I hope it does the trick. Sending you prayers and blessings - PJH

      READ MORE

FROM OUR COMMUNITY

  • Hopeful Lady February 11, 2010
    Hopeful Lady
    February 11, 2010

    Your case is so close to mine.  Had 1.50 cm tumor,  grade 3, stage 1, triple negative breast cancer.   Surgeon did lumpectomy and removed one lymp node in Dec. 2009.  Cancer had not spread to lymp sytem.  Surgeon sent me to Onc.    I did not know that I had to option to refuse chemo.   But thinking back over her first meeting with us, husband and I can remember some things she said, which made us re-think her comments.   She never said that chemo was an option, and never said I had to do chemo.  But she and surgeon both said that radiation was not an option.   

     

    She did tell me that there is an older chemo drug that does not cause hair loss in some cases, but that the relapse time is not as good as the more modern drugs.    So we opted to do the more modern drugs.   

     

    I had horrible side effects and it is on my record that I lost 9 pounds during that first three weeks after chemo.   Diarrhea and vomiting were the cause.    Most people gain weight, so I've been told.   I even had to go back twice after the first chemo treatment and get iv fluids because I got so dehydrated.

     

      When my hair started coming out, I was devastated.  So I asked the onc. to change my chemo drugs to the one/ones that maybe would not cause further hair loss.  She agreed and did what I asked.     The side effects are some nausea and some headaches which are managable to pain medication and nausea pills/ suppositories and now a compound gel I put on my wrist when I feel the nausea coming on. 

     

    My relapse time may not be as good with these old drugs, but like I told her, I may get hit by a truck  next Christmas.   So there is no guarantee. 

     

    I hope and pray that this is the right decision.  In the end, only God knows.   I sincerely hope this information  is helpful to you. 

     

    I am not advising you but only sharing my experience with you.    You have to make the final decision.   

    READ MORE
  • Betty Defries May 07, 2010
    Betty Defries
    May 07, 2010

    Only one of my doctors thought quality of life had any meaning.  And guess what?  She is my urologist.

     

    I am 68 years old, and why would I want to get chemo, so I could get chemo brain, damage my feet, damage my hands.  AND THEN THERE'S LYMPEDEMA.

     

    Ladies, you are not cured after 5 years; you still have cancer.

     

    IF YOU DON'T BELIEVE THIS, ASK LYNN REDGRAVE.

    READ MORE
    • Yellow
      January 19, 2011
      Yellow
      January 19, 2011

      Two & Half Years ago aged 55 I was diag with tnbc stage one grade two no node or vascular invasion etc tumour less than 1 centimetre.  I had wle and radio.  Chemo was not offered by medical team.  When I asked about the trip neg status they advised that all things were considered on my particular diagnosis and it was agreed that the percentage increase for a 10 year survival would be less than 1% difference if chemo was given.  I decided not to have the chemo.   Unfortunately, breast cancer in general is very sneeky.  The cells can remain in the body for 20 years plus regardless of treatment and then become active.  The rest you should work out for yourself.  There is no cure for breast cancer. 

      READ MORE
    • Phyllis Johnson
      January 19, 2011
      Phyllis Johnson
      Health Guide
      January 19, 2011

      I'm also leery of using the word "cured" to describe breast cancer.  What most doctors say is, There is No Evidence of Disease (NED)."  I personally don't care that I may not be cured.  I haven't had any recurrences, and I've lived with an excellent quality of life since completing treatment Jan. 15, 1999.  Sure, the cancer may pop up again.  My oncologist says the longest he has seen anyone go between completing treatment and recurrence is 21 years.  Since my life expectancy for inflammatory breast cancer without treatment was about 18 months, I'm happy with my choice to go with treatment.  

      READ MORE
    • Ysa
      Ysa
      July 22, 2012
      Ysa
      Ysa
      July 22, 2012

      Yellow,

      Your e mail refelcts your personal opinion.

      My Mother survived 45 years after her breast cancer surgery. She had radical mastectomy, die at 87  from broken hips.

      Breast cancer has cure! I am sure some people willnot be as lucky as her, but, we have to keep our chins up. I will habe bilateral mastectomy in two weeks,and I am very optimistic.

      Ysa

       

      READ MORE
    • PJ Hamel
      July 22, 2012
      PJ Hamel
      Health Guide
      July 22, 2012

      Ysabel, thanks so much for sharing your mother's experience here - we love to hear about other women's cancer journeys, especially when they're so positive. Best of luck with your upcoming surgery; I hope everything goes well for you. Take care - PJH

      READ MORE
  • Dani May 16, 2013
    Dani
    May 16, 2013

    My wife was diagnosed with Grade 3 IDC breast cancer March 15, 2003, she had a lumpectomy to remove a 1cm mass on April 09 and was told it was successful with good margins. She was also told lymph nodes not affected. This week she was told by the breast care nurse her cancer was hormone resistant and the next day she was told by the oncologist she had triple negative cancer and was offered third generation chemo - stats given to her showed this form of chemo offered a 4% better outcome re: mortality and 11% re: recurrence given her age, health, etc. In view of the above and also taking into account my wife is 58 only has one kidney, she today has decided not to have chemo. I respect her decision and can only hope and pray that this is the correct one given her situation. 

    READ MORE
    • Dani
      May 16, 2013
      Dani
      May 16, 2013

      Typo, she was diagnosed this year, 2013 not 2003.

      READ MORE
    • Phyllis Johnson
      May 16, 2013
      Phyllis Johnson
      Health Guide
      May 16, 2013

      I can understand your wife's reluctance to have chemo given that the chemo offers only a small reduction in risk and that she has only one kidney.  Chemo is hard on the body, so she might do better with very careful follow-up screenings to watch for recurrence.  Because there are no follow-up drugs for triple negative breast cancer and because it tends to be more aggressive than the hormone positive types, offering chemo seems to be more and more common even for Stage I cancers.  But it sounds like your wife has done a good job of weighing the risks and benefits of each treatment for her to arrive at her decision.  I wish her a long, recurrence-free life.

      READ MORE
    • PJ Hamel
      May 16, 2013
      PJ Hamel
      Health Guide
      May 16, 2013

      I concur with Phyllis, Dani - chemo is very hard on the body, with often lifetime after-effects. I believe oncologists, in their understandable desire to put life above all else, tend to downplay these long-term effects. A 4% boost in mortality is pretty small, given the risks. Odds are your wife will do just fine, and you'll enjoy many years together. Best of luck to you both - PJH

      READ MORE
    • bettyboopdcp
      May 16, 2013
      bettyboopdcp
      May 16, 2013

      I was in the same boat ( stage 1 grade 3 no lymph ode involvment) in 2009 and faced the same decision. I did not have the furthur complication of the kidney issue. I had radiation but refused chemo. I am fine. Just had a pet scan all clear. The way they had explained it to me was that there was a 15-20% chance of reoccurance and chemo would change that to a 7.5 to 10 % chance. So for a 20% chance of reocuurance, and a 50% chance the chemo would help, I decided not to poison my body and am very happy with my decision. The only thing I have done is taking high dose of vitamin d3 every day. Make sure they check her level. Mine was down to 30 after radiation. which is very low. It is now 90 or more which is the high side of normal but that is where I want it.

       

      Good luck and think positive.

      READ MORE
    • Dani
      May 16, 2013
      Dani
      May 16, 2013

      Thank you for your comments of support, they have given my wife (and me) much encouragement and are greatly appreciated.

      READ MORE
  • connie leon July 30, 2012
    connie leon
    July 30, 2012

    I agree with her opinion I too have triple negative stage 1 grade 3 1.5 centimeters with clear margins. I started chemo and it really isnt that bad, and as far as losing your hair, there are so many hats and turbins that you can look cute in. Believe me I had a hard decision to do this. If you want to live a long life I recommend the chemo. I too have to have radiation. Good luck

    READ MORE
    • PJ Hamel
      July 31, 2012
      PJ Hamel
      Health Guide
      July 31, 2012

      I hope treatment continues to go well for you, Connie. Thanks for taking the time to share your experience here - always appreciated! PJH

      READ MORE
    • Phyllis Johnson
      July 31, 2012
      Phyllis Johnson
      Health Guide
      July 31, 2012

      I am glad your chemo is going well.  It is important for people like you to share their experiences.  In support groups, it is mainly the people who are having problems who write in, so readers may get a skewed picture of what chemo or any other treatment is really like.  Thank you for adding your voice.

      READ MORE
  • Mountaingirl January 19, 2012
    Mountaingirl
    January 19, 2012

    I am also Stage 1, grade 3 TNBC, 1.6 mm tumor. Today is my last day of Chemo (TC x 6 doses.)I had bilateral mastectomy with immediate reconstruction. No rad tx needed.  I am 50 years old and exercised alot before my diagnosis. I thought chemo was going to be awful, and I know for some people it is. But mine wasn't so bad. I never threw up or got nauseated. I never got mouth sores, food did taste funny for a couple days. I would get constipated but that was relieved by taking senna for 5 days post chemo. Also, I learned a great trick from a nurse if you are taking neulasta, (Take one Claritin 1 hour before shot, and 1 tablet daily for 5 days). I never got any bone pain except for the one day I forgot to take it. It seriously worked for me and can be bought over the counter. I would lay around on day 3-5 with a slight fever but I would be back to exercising by day 6 and feeling pretty good. I have gone snow skiing 8 times, played golf, gone on several vacations, rollerbladed, walked alot and been able to do cardio and weights (Less than before).  It was a bummer losing my long blond hair, but I was able to find a good wig from Racquel Welch wig. I also used Latisse everyday on my eyelashes and my eyebrows, and only lost a couple of each after my 5th treatment. Not enough for anyone but me to notice. Actually my lashed got longer and darker. With TNBC I think the Chemo is very important. We need to do everything possible.

     

    Good luck. 

    READ MORE
    • PJ Hamel
      January 19, 2012
      PJ Hamel
      Health Guide
      January 19, 2012

      Wow, sounds like you really did well on chemo - we're very happy for you! You just never know how it's going to hit you... Good luck as your hair grows back, and I hope you continue to feel better each day. Remember - it takes a couple of months for the chemo to leave your system completely, so be careful with your immune system - you're still at risk for infection. Take care - PJH

      READ MORE
    • Phyllis Johnson
      January 20, 2012
      Phyllis Johnson
      Health Guide
      January 20, 2012

      Thanks for sharing your good experience with chemo.  I'm sure it will help someone who is trying to make a decision about what to do.  The nature of support groups is that people tend to write in with problems, so sometimes the record of experience that readers might find in a thread like this is skewed towards problems with chemo.  It really is impossible to predict how a particular person will do on a treatment.  There is always a wide range from no side effects to terrible side effects that lead to stopping treatment.  Most people are somewhere in the middle with manageable side effects.  It sounds like you came up with good strategies for coping.  I hope that you continue to do well.

      READ MORE
You should know Answers to your question are meant to provide general health information but should not replace medical advice you receive from a doctor. No answers should be viewed as a diagnosis or recommended treatment for a condition. Content posted by community members does not necessarily reflect the views of Remedy Health Media, which also reserves the right to remove material deemed inappropriate.