[AlaskaAngel]

Each of our cancers may respond differently to treatment, sometimes due to differences in age and menopausal status, and sometimes due to many other variations.

I didn't like losing my hair, as it was very long and thick. But the worst part by far during treatment was the extreme vomiting, even with the antinausea drugs I was given. However, neither of those things stopped me from completing 6 rounds of CAF in 2002, or from having weeks of radiation.

The newer treatments TCH , TH, or AC+TH are somewhat different in that the taxane (the "T") generally causes prolonged neuropathies instead of causing the intense nausea and vomiting that I had.

But if I had it to do over, I would make a much different choice today. Why?

1. Chemotherapy damaged my immune system. Six years later my blood counts, which were above the middle range of normal prior to treatment, are still below normal. I can't go back and change that once it was done, to be able to take better advantage of less toxic choices like the vaccines that are showing such great promise.

2. I think it is extremely short-sighted that very toxic therapies are still being used for those who have a diagnosis that is known to respond well to ovarian ablation and hormonal therapies -- especially those who also may benefit from the use of a monoclonal antibody.

3. Ask your medical providers what your recurrence likelihood is, but not for 10 years. Ask what it is for FIVE years. The graphs showing the effectiveness of chemotherapy show a sharp drop around the fifth year; if your risk is considered low for as long as TEN years, does it make sense to do preventative therapy that works primarily just for the first five years????

Also, in just the first 5 years after I was treated, these are some of the options people have now that I did not have:

a monoclonal antibody specific to HER2 positive patients, trastuzumab

lapatinib, which targets not only HER2 but HER1 if that happens to be part of your cancer

the aromatase inhibitors for some types of cancer, Arimidex (anastrozole), Femara (letrozole), and Aromasin (exemestane).

Clinical trials are being done showing that ovarian ablation and hormonal treatment and a monoclonal antibody may be equal to or more effective than chemotherapy if the tumor has positive hormone receptors and is HER2 positive.

There was no such test as any of the Oncotype Dx, Mammaprint, etc. to try to identify what characteristics a cancer has, so that more precise treatment can be given. Once you have had a type of chemotherapy, whether or not it works on your particular cancer, you can't go back and undo the damage from it to your immune system and you have already put in a lot of time, money, and energy dealing with the effects of chemotherapy to boot. Newer tests are in development. If as a stage I you contrast your risk for recurrence in the first 5 years, do you think there will be 1) fewer, 2) as many, or 3) or more such dramatic advances in the next 5 years for you to take advantage of before any recurrence would be at all likely?

Mine is just one opinion of many. I have not had recurrence. I have never had a monoclonal antibody. I have never had dose-dense treatment. I have never had a taxane. I did tamoxifen briefly (less than 2 years) but I am not even on hormonal therapy (I did 2 days of Arimidex).

Yes, it is possible that the CAF treatment that I had may have made a difference, if I happened to be among the 1/3 of HER2's who benfit from Adriamycin for TOPOIIa. I don't know whether my chemotherapy hit the target or if I never needed it at all.

4. Although medical providers either never mention it at all or are not straightforward with newly diagnosed patients, any treatment currently used will likely change your sexual response both mentally and physiologically. When providers have the integrity to talk about that openly with patients before AND after treatment, maybe then they will deserve to be trusted with such toxic therapies as chemotherapy. It is all too easy for those who have never been treated to minimize that kind of loss, since they don't have to experience it.

5. Although at time of discussing therapies the medical providers do not discuss the support drugs that are given to "help" patients take the blunt of toxic chemotherapies, it is standard to give such drugs as steroids and various blood production stimulating drugs, and when deciding about toxic therapy versus treatment like ovarian ablation plus hormonal therapy, if your cancer is such that you are able to choose less toxic treatments then you are not subject to the effects of such things as steroids and blood production stimulating drugs. I would recommend that you also need to decide whether you are willing to take them, because they are part of the standard chemotherapy package. In particular, I am concerned about the standard use of steroids. Some people, not all but many, gain weight with steroids. I believe medical providers are not very conscious of how badly that ends up predisposing so many breast cancer patients for recurrence due to increased body fat being a strong risk factor for recurrence. The amount of body fat is going to increase for most breast cancer patients once they are menopausal, but for those patients who gain even more weight with steroids, because of the menopausal changes it is very, very difficult to lose the added weight once it has been gained. Sadly, once a patient has completed treatment and has clear scans, they are left on their own to battle the war against the blubber they have gained. There is very little support focused on helping with this problem. One of the worst things about it is the doctors pat themselves on the back for saving a life, and are so blind to their own role in setting women up not only for the depression of being fatter but for recurrence of breast cancer, as well as promoting the development of other diseases brought on by excess weight. What good does it do to have the chemotherapy if the fat is going to encourage recurrence?
Diet and exercise are key to avoiding recurrence whether or not you do treatment. But at the same exact time that bc patients end up dependent on losing that weight or not gaining it, the steroids (added to any duration of more limited exercise during treatment as well as to the repeated periods of extremely low blood counts that cause repeated fatigue during treatment) cause physiologic changes to muscle tissue. Those who gain weight from the steroids then have less muscle tone after treatment plus more weight to carry around, and less muscle to exercise with. In addition, your testosterone level drops greatly with treatment, and testosterone helps with building muscle, so you won't have as much of that to help you out afterward either. These are all very important changes that aren't on the screen for health care providers, but they DO make a difference for cancer survivors.

6. The percentage of those who actually benefit from chemotherapy is low. Ask about that. You can go through all of it only to have it fail entirely.

7. There is no clear information as to how many patients not only do not benefit, but whose cancer is worsened by toxic therapies. Ask about that. I'm not talking about the possibility of leukemias down the road, so don't let anyone distract you with the low stats about those. I'm talking about how much or how little is known about what toxic therapies may do to increase recurrence, whether it be from mutations or other factors.

Well, I am sure all of this is longer than anyone, including me, wanted it to be. But it IS what I wish someone would have said to me. Foregoing chemotherapy may also mean you could have recurrence; it is a choice.

Best wishes,