stage 1 triple negative--refuse chemo?

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. 

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

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.

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

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.

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

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

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

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.

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

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

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!

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

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!

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?

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

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

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

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.

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