To Chemo or Not to Chemo is the question...

chonkala, you are absolutely right to be questioning everything and not wanting to do chemo - I mean who wants to?  But my recommendation is to do your own reseach and look for articles that are peer-reviewed and then bring them to your onc if you want.  There is SO much crap on the internet that can make you crazy and much of it is just plain wrong. 

Me I struggled for 9 weeks post surgery about chemo.  Now I have a MUCH different diagnosis than you (see my sig) but empathisize with you about the decision making process.  To make my story short - the first THREE onc opinions I had wanted me to do Adriamycin/Cytoxan/Taxol or ACT regimen.  I was more advanced than you and am 34 with a 2yr old so I agreed with the docs that I needed chemo.  However, I did not like the long-term risks with Adriamycin (Leukemia and possible heart failure - both very small percentage but a real 0.5 and 2% respectively).  And 0.5% sounds small but when you think of it as 1 out of 200 women and think how many women are getting ACT - it is very real.   I struggled with the decision for over a month.  I ultimately decided to get the 'less aggressive' regimen of Taxotere and Cytoxan.  I am the one who has to live with the side effects and screw them for wanting to throw the book at me just cause I am young.  Yes I have a higher risk of getting a reoccurance than someone with my same stats who is 60 but I also have a long time to develop these other chemo induced side effects.  I soul searched and it was tough.  I went back and forth so many times and my family pushed me in many different directions (thankfully not aggressively - they all understood it was my decision and stood by it once I made it).  Ultimately, I met with a fourth opinion and this onc validated (not just ok'ed) my decision to do the lesser aggressive regimen.  And he is at a top cancer research center.  He said that while he would not be in favor of no chemo - he was in favor of the TC regimen for me and said that the reoccurance percent difference between ACT and TC for my cancer was a few percentage points.  Well then the decision is easy - I would rather have a few% higher chance of a BC reoccurance than a (combined) 2.5% chance of leukemia or heart failure.  And I am 75% done with chemo now and am very happy with my decision.  That being said, whatever my onc says I need to do for radiation and hormone treatment and follow up scans I will do to the best of my ability - I took risk with chemo.  

And for what it is worth chemo has been doable for me.  Not fun but I am living my life - full time (desk job), part time grad school, fiancee and toddler, etc.

My best advice - make your own decision through researching and reading how others made their decisions - this site is fabulous.  Then find an onc who supports you.  In my experience the women who regret some of their treatment decisions ultimately didn't mesh with their onc or felt pressured by them.  The decision making phase is quick and the pressure is intense - and that is from many sources.  Women with BC were some of the worst pressure placers in my personal experience.  And it is understandable - they don't want to look back and think they didn't do enough or did too much.   It sucks and it is lonely in the decision making phase but ultimately making your own well informed decision will ensure that in the long term you can stand behind those choices.  PM me if you want (obviously I feel passionate about this).  Best of luck! 

The complicated part of your diagnosis is that you do not have hormonal therapy currently available, and you are Her2+. Herceptin is probably the most important feature of treatment for you, and you will be hard pressed to find an oncologist who will give it to you without chemo, let alone the potential need for chemo for the ER/PR-. There is the possibility of early menopause, but it is not a given. A number of those who had chemo when I did and posted on that month's chemo thread, and who were pre-menopausal, went back on their cycles. The ones who did not were older and closer to menopause. You can check with the ladies who are on the Sept/Oct chemo threads that are close to your age and see, some of them are having their cycles during chemo. The doctor who brought Herceptin to the market favors the Taxotere/Carboplatin/Herceptin regimen, if that has not been mentioned to you yet. This is a hard decision, but since none of have a crystal ball to determine whether we need chemo, whether it will work for us, much of it comes down to your gut - guided by advice from a physician that you trust. As hard as it is to go ahead with chemo, it would be equally difficult to look backward and wish you had done it.

chonkala - your decision sounds perfectly rational to me, though I think the folks at Sloan Kettering are top notch and would certainly consider their opinions. Not that this is the same, but for what it is worth...years ago, the experts at Seattle Cancer Care Alliance recommended a more aggressive treatment than I was willing to accept as a 32-year old. Eventually, I ended up stage 4 and perhaps they were right. It is impossible to know, but if I could do it over again, I would have gone for the most aggressive treatment available. Best wishes to you with your decision and you'll get nothing but support from me regardless.

chonkala, if you go up to the search area and put Herceptin in as a keyword, there are 139,000+ posts here relative to it. You might find some answers there. I hardly think it is rarely offered (in combination or by itself) to have that many women posting about it. Check it out. Wish you luck on finding what is best for you.

EMQ2, I am so sorry you are going through this.  It pulled the rug out from under me too and took me a while (and not there yet) to find a new normal.  Chemo is such a personal decision and I would not presume to give you advice. I did post my reasoning for chemo and choice of regimen earlier in this thread.  What I would say is keep your mind open about all treatments, get a second (or third) opinion, do your own (scientific/evidence-based) research, and then go with your gut feeling.  As for the holistic approach - I spoke to both a naturopath and a naturopath oncologist - both gave me terrific complementary advice and validated many feelings my regular onc flew by.  I will say that not doing chemo just because of the short term side effects may not be the best reason (although we all have different thresholds).  I did 4x Taxxotere and Cytoxan treatments and while I did not feel great at all I was able to work full time, go to grad school part time, and take care of my 2yr old.  I did need a lot more help than usual (which is usually no help needed) but even on my worst days I could do basic things.  Everyone is different and there are so many variables but I think I assumed chemo would be what I saw in the movies or heard from people who did it a long time ago (my cousin told me after her infusion she felt like a truck ran over every bone in her body - for days after...um not helpful).  Just know that it is great that there is a lot of local support (maybe a neighbor could open your door early in the morning and let the animals out) and wonderful emotional support here on these boards.   As for cleaning....I think we would all admit that during chemo - we do the bare minimum.  I wish you strength during this decision making time - once I started chemo I actually felt better.....decisions over (for time being anyway).

ditto what maltomlin said

chonkala - I can definitely relate to your post because I faced the same decisions just a few short months ago. I agonized more than you know. I have two tumors in the same breast - one being her2+ and the other triple negative. Due to a past illness (flesh eating bacteria) I was terrified to have my immune system lowered again by having chemo. I got three different opinions and ended up doing Neoadjuvant chemo - Taxotere, Carboplatin and Herceptin. I just finished the TC portion on Nov. 4th and will continue with Herceptin for 6 months, or maybe a year. I do not regret the decision. Due to past surgeries I had a difficult time with my digestion, but that by far was my worst side effect. If I hadn't been compromised in that area, I think I would have done well with the chemo. I'm not saying it's a walk in the park, but my mind had me convinced it was far worse than it ended up being. Because I did chemo before surgery, I have the advantage to see how the chemo worked on the tumors. There is no way to know for sure before the final pathology, but I'm sure it made a difference - I can barely feel the tumors. Gain as much knowledge as you can, but in the end, follow your gut and go with the treatment that works best for you. Don't be afraid to ask as many questions as you want - these are huge decisions and we need to feel comfortable with what we are doing. I know it can be overwhelming. If you decide to move forward with chemo there are so many wonderful women on these boards that will help you through treatment. If you decide against treatment, there are women that will help you with that as well. All we can do is share our own experiences. Good luck!!