Declining Chemotherapy

i also had 6 rounds of tac one every 3 weeks and i will also say it was not that bad that i would not do it again. i might of had 1 or 2 bad rounds but i chalk that up to dehydration because i am not a good drinker even though i know i should. i agree about the shot also. my cancer markers went up this last visit and i had a pet and cat scan this past week and i have 4 questional spot on my body so i go for a biospy this week. i am scared to death, but there is nothing i would not do to try to be with my kids as long as possible. i am 58 years old 8 grandchildren and 2 on the way aug/and oct and i will fight til the end to be here for them. so hang in there if nothing else for your boys!!

Dear hartbeat,

I can totally relate to your thougts about completing Chemo.  I was diagnosed in April 2008 with Triple Negative and had a Modified Radical Mastectomy in June 2008.  My Surgeon advised me that Chemo and Radiation were my only options once Surgery was completed.

I was defiant that I didn't want it and would not do it.  After meeting with the Oncologist and Radiologist, and from much urgency between the both of them, I had the Port put in my chest.

My treatment plan was to have 4 rounds of A/C then 12 rounds of Taxol.  I completed the first two rounds of A/C and decided to have the Port removed, but did agree to the 33 rounds of Radiation which I did complete.

I lost the second Breast 2 1/2 years later, however, only four lymph nodes were removed as they came back clean.  My recent PetScan came back negative....so far, so good.

Only you can truly decide what works best for you I guess is the message that I'm trying to convey.  I felt that I wasn't being true to myself by having the Chemo, and therefore, didn't finish that part of my treatment.

This June 5th will be four years since my first surgery.  I live every day to the fullest and waste no time in thinking about the past.  I'm in total agreement with you about living your days in quality.

Those were my exact thoughts as this Journey was beginning for me.  I've always said as I come across people who have disagreed with me not finishing my treatment that...."You don't have to like my decisions, I simply ask that you respect them".

No matter what decision you decide....I wish you the very best. 

I am not Triple Negative, but Triple Positive.  I started Chemo Dec 27, 2011 with 4 A/C.  I just completed 9 of 12 Taxol.  I am 56 years old.  Although it has not been easy, it has not been nearly as bad as I had envisioned.  Of course I am looking forward to it all ending, but the lessons I learned about life and love during Chemo honestly have been invaluable.  

I didn't want Chemo, but knew I had to do it deep in my soul.  All you can do is listen to that inner voice and do what is best for you. 

I'm not triple negative and did not need chemo due to a low Oncotype score, BUT, if it had been recommended I would have done it in a heartbeat. It's your life and your decision. (Triple negative is a very aggressive cancer.)  I am 63 and want another 20+ years. I'll do what I can to achieve that goal.

I know how you feel.  I also was terribly ill during my treatment.  I almost passed several times and had to cancel many vacations.  I used to beg for my family just to let me die.  I am glad that I did it and I am better.  I have stage IV breast cancer and was only given a 30% chance to live and 90% chance to get it back within 3 years.  I am also a registered nurse.  I was only 40 when diagnosed and had a small child.  I know it is hard, but it is worth it in the end.  You can do it!!!!!

hartbeat, I'm sorry you're facing these decisions.  I'm not TN, but I have the strong opinion that not all medical teams are equally qualified to treat TNBC patients because some have rarely even seen a case of TNBC.  If I was in your situation, I would seek out an onc who specializes in TNBC, because I think they're finding that all TNBC isn't always the same, and the more experienced onc and the most targeted tx you can get, the better.  

I think this is true of all bc (that not all docs are equally qualified), but maybe even more so with TNBC, because of its rarity.  

Good luck, and I'm glad you've found BCO!   (((Hugs)))  Deanna 

Hello sister, the literature out there is sometimes just crazy.  Your assumptions aren't correct and I very happy to tell you.  In reality, the true expert oncologists on Triple Negatives will tell you that chemotherapy actually works BETTER on triple negs than on regular breast cancer.  That is becuase chemo wipes out rapidly reproducing cells and triple negative BC tends to be rapidly reproducing.  It is true that there isn't one single chemo that is our cure so for that reason, we tend to do the standard BC treatment (I may not be up to date but at Stanford 4 years ago I was given 4 dose dense A/C and then Taxol). 

I left the tumor in while I did hte chemo to be able to tell it's effectiveness.  The A/C took my very palpable tumor and made it disappear.  The taxol cleaned up the rest.  Upon sergury there was no more cancer in my breast at all and it had been quite extensive.  BUT....when they took out all of my lymph nodes they found cancer in a NON SENTINAL NODE.  That means taht if they had only sampled a few sentinal nodes they might have labeled me "no node envolvment" at that time but that was not true.

The thing is that if the cancer has slipped past some nodes and into your body (or even though vascular entry) then there can be cancer in your body and radiation won't help a bit with that.  Chemo is just so effective...it greatly increases survival in triple negatives.  Also, after the 5 year  point if there is no recurrance...we are generally thought of as cured...still have to be cautious for a few more years but triple negatives tend to recur in the first 1 to 3 years.  It's a quick disease but by no means unbeatable.  We won't all be cured by chemo.  I wish that was the case but many, many, many of us are.  I pray I am one of them.  

Before chemo, I had mulitple involved nodes.  Clearly the cancer had left my breast and entered my body...also it was high grade (3)...rapidly reproducing.  I did chemo.  If I had not, without a doubt, I'd have metastatic cancer by now...probably for a long time now.  Because of chemo, there is a good chance I am cured.    I am now at 4 years and 3 months since I began treatment.  I had tons of cancer in the breast and nodes and no doubt body but thank God for chemo.

I wonder if when you did chemo before if they did not give you proper anti-nausea drugs.  Get the max allowable.  It is so doable.  Do it for you life sister.  You will greatly increase your chances of a long happy life.

Meg

Hartbeat, you have some good questions for your Oncologist, and if you don't feel you can ask your Oncologist, then get a different Oncologist. Yes, there are statistical tables that will show your statistical chances with and without chemo. Of course, that doesn't tell the whole story because individuals vary, but its good to have that information when you are making a potentially critical decision.

Have you had genetic testing? With a history of ovarian cancer, I think you may want that information also.

There are good drugs to help with the SE's of chemo. I hated going through it, but continued to have a life during that time. I went out to dinner and exercised, and made it through. I think Accupuncture and exercise help with SE's. 

Hartbeat, if you haven't already been in contact with this group, they may be able to give you important information about 3NBC. http://www.tnbcfoundation.org/

I just saw your post, Hartbeat, and I'm glad to see that you have decided on chemo. I am also an RN, though have not worked for a very long time. Did work in the ICU way back, but stopped to raise my three kids.

As you probably know TNBC is agressive, and usually is diagnosed in younger women, that is premenopausal. My docs were surprised when they got my path back, as I too was not young at the time. Almost 61 when dx in Feb of' '06. Happy Valentine's Day to me! I did 6 months of chemo, starting in first week of March. No fun, but I wanted to be agressive with tx, so did four AC's followed by twelve weekly taxols. Followed that with seven weeks of rads, and six years later I am almost 67, and doing great! In '06 Mother's Day and my birthday [May 14th] fell on the same day, and I never had a worse b-day or Mother's Day, but since that b-day I have celebrated many more, and I've seen my oldest get married. Not to mention many more milestones in life.

As you probably know TNBC responds very well to chemo, and I'm so happy that you are giving yourself this extra boost to your tx. It's not easy, but is very doable, and you'll have lots of support here as you go.

Hugs to you!

Pat

I'm not triiple negative but am bored today and saw this pop up in the active topics and thought I could still help.  I'm glad you have decided to do chemo because while I don't know much about triple negative, I do not believe that the five year survival rates are bad even with chemo, and a search on pubmed would no doubt come up with lots of hopeful abstracts.  

The reason I'm responding is to tell you that your first experience with chemo may be an anomoly.  What chemo did you do?  I can tell you that I have done five so far (I'm Stage IV) and I do not consider any of them to be anything close to nightmarish.  I started out Stage II and did carboplatin and taxotere.  Half way through I started having a little neuropathy so I was switched to taxol. I did just fine.  Then when cancer returned, I did Navelbine and with progression, I did Abraxane.

I won't tell you it's like doing nothing, but none of them created a nightmare scenario and in fact, I work every day.  I think the side effects can be managed better than you described and so I would talk to your care team, share your previous experience, and see if they will do something to make sure you are more comfortable this time.  And, you aren't likely to do the same combo you did last time and every chemo is different.

There is also a lot you can do to help yourself.  As a nurse you probably know this but hydration really will help cut the side effects so tons of water is important, and eating the proper foods can help your colon stay balanced.  Body aches can be managed with medicine.  

Since you have decided to do the chemo I'll spare you my description of living with Stage IV cancer.  Obviously, the consequences of not doing chemo can be severe. And, also obviously, there is no guarantee but I think most people feel better - even if cancer returns - knowing that they did what they could. 

I hope that you are pleasantly surprised to find that your experience is different this time.  I am not going to say it's a walk in the park and you'll be tired but horrific?  It never has been for me and I hope it won't be for you. 

I wish you nothing but the best. 

Thanks for posting, hydeskate. I am so glad to hear that you've been NED since 2009... very encouraging about the effectiveness of treatment for TNs.