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.

 

 

 

 

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

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 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?

 

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

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.

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.

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.

 

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.

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

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...