Don't like the chemo treatment suggested by oncologist

Darla,

I plugged the info you have available into cancermath, which is an outcomes calculator.

Cancermath says:

Mortality risk at 15 years, with surgery but no chemo or hormone treatment: 35%

Mortality risk at 15 years, with surgery and chemo: 19%

Mortality risk at 15 years, with surgery, chemo and hormone treatment: 15%

In practical terms, of 100 women with your DX, in 15 years 35 will be dead without chemo/tamox; if chemo is added, only 19 will be dead; if tamox is added to the chemo only 15 will be dead. 

Now, your onc gave you a recurrence risk of 50%. I am giving you actual mortality risk and there is a difference. But you should probable ask more details about the risk, how he is calculating it (there may be other factors than those you list) and what the real reduction in risk will be with treatment.

Hi DarlaJ, my cancers was not too different from yours in terms of size, grade and hormone receptors. I got two opinions: one was AC and Taxol (total of 8 treatments); the second was TAC (6 treatments). I chose the latter because it was shorter.

You could consider cold caps to keep your hair. Talk with your onc about that and connect here with that discussion topic.

There is heaps of information and knowledge here to help you. Keep in touch!

take it however you feel is apt, but looking at who funds a study is the best way to judge whether there is vested interests afloat

Hi Darla,

My diagnosis is very similar to yours as well, so what your MO is suggesting sounds reasonable to me. I was told that with chemo, rads, and tamoxifen I will still have a recurrence rate of 20-25%, which are pretty crappy odds if you ask me, but better than the alternative. I am using cold caps to save my hair. After 4 AC tx it's very thin, but I still have it. Now I need to go through 12 weekly Taxol rounds, which is apparently much easier on your hair, but I still need to use the caps. I was one of those people dreading chemo because of the hair loss - my hair is important to me, but then so is saving my life. So, I researched the cold caps thoroughly and decided it was worth the effort. You can check out the Cold Caps Users Past and Present message board on the subject for more info.

I would definitely get a second opinion though to make sure you feel comfortable with whatever you decide.

Good luck,

Kelly

Darla, the current  standard treatment of her2 negative breast cancer use  basically 3 types of drugs: 

1-Cyclophosphamide (C) - Cytoxan

2-Doxorubicin (A) or Epirubicin (E)

3- Taxane (T) like Paclitaxel(Taxol)  or Docetaxel(Taxotere). 

Your oncologist will combine these drugs using some protocol like AC-T, T-AC, T-EC , EC-T, etc. The MO can make some choices like, start with taxol first follow by AC,  use weekly taxol, chose Taxotere instead of Taxol and other ways to combine these drugs.

My MO said that the choice of what protocol to choose is normally a personal preference of physician or cancer center, there is no best protocol.

In my case I visit two oncologists and one prescribed AC-T(weekly)  and other T(weekly) followed by FEC. I chose the second option because weekly Taxol has normally less side effects and I could work normally during the first 3 months of treatment. Many physicians prefer to start with a chemo that normally present more side effects first. 

You are er and pr positive and have less than 3 positive nodes ask for an oncodx test see what score you get. Hormone therapy tamoxifen might work well for you. Good luck I have heard good results with cold caps for hair loss make sure your doctor is getting the right treatment for you ask for other doctors opinions.

Darla, that is true about the doxorubicin. You should discuss it with the oncologist and/or with the second opinion onc. There is an alternative combo that does not include doxorubicin.

When they gave me the "red devil" (epirubicin/doxorubicin/adriamycin) the first time, my onc sat behind me with a stethoscope on my heart to make sure I was tolerating the drug. I am 3 years out and have no ill effects so far. However, if you have a strong family history of heart disease or you already have some early signs of heart disease, it is most certainly a valid thing to discuss with the onc.

Hair loss is pretty standard, although, as someone else suggested, you can use a cold cap to prevent going completely bald. Personally this part did not bother me particularly, but each person is different.

As for nausea, I did not have any. My onc put me on a strictly timed schedule of 3 different anti-nausea meds and they worked. Discuss it with the doctor and find out how they usually manage this aspect of the chemo SEs. Again, it is a completely valid question.

One more small point: In Europe they usually use epirubicin rather than adriamycin. Both are versions of doxorubicin, but the epirubicin is slightly less heart toxic than the adriamycin.

Darla - faced the same as you 2 years ago.  ACT scared me but I also knew my cancer was very aggressive and need the strongest treatment to better my long term survival odds.  I am 2 years out and am finding tamoxifen more difficult ongoing than the chemo.  Good luck with your decision.

Darla, although there are never any guarantees with this stupid beast, with your DX so far, this is completely treatable. The way I see it, my treatment was worth it for the 2.5 really good years I have already had, and my good chances of having many more. I also keep firmly in mind that as long as I remain healthy there is always the chance that they will come up with new and better treatments.

As far as alternatives, always check with your onc, because some supplements can interfere with chemo doing its job. One supplement that I found extremely helpful, and that was OK by my onc, was probiotics. It helped against several SEs. It has also been shown in a small study to boost the effectiveness of chemo.