Polite Explanations are Welcome....

Racy,

My fault -- In my original question I didn't specifically indicate that I was asking in behalf of early stage HR+ HER2 positive patients only, in regard to the currently authorized use of CMF or CAF (given that AC +TH also uses Adriamycin, the drug that has cardiac effects) or it's proven equal (OA), plus trastuzumab.

A.A.

Sweetbean,

Standard of care is not that limited. Some oncs are offering HER2 positive patients CAF and CMF, even though in this country other regimens that cause neuropathy are more well known and more frequently used.

As I see it, this place for discussion is international because of the internet. The world at large has many women with early stage bc in different situations that need different practical answers. If we are only interested in treatment for early stage bc that is limited to those who can afford chemotherapy and all of its prolonged complications, then this place is not actually serving the wider group of all women with early stage bc.

OA has achieved equal effectivness to authorized chemotherapies.

A.A.

Maybe listing it out will help those who don't face similar circumstances:

ADVANTAGES of OA for HER2 positive HR positive patients over TCH or AC+TH:

1. It is generally not a project that takes months to accomplish, and more months to recover from.

2. Any support drug usage is short-term, not repeated, such as the repeated doses of steroids and blood support drugs and anti-anxiety medications and anti-nausea medications, etc.

3. For those who are self-employed and have no money to pay a sub to do the work (and no such thing as "sick leave" but still need the income) OA is a short-term deal.

4. It doesn't cause neuropathies.

5. There is no risk that it will cause chemobrain, which has, after decades of minimal concern by oncs and PCPs, FINALLY received recognition as a real problem and not just "all in our heads".

6. It doesn't require repeated trips to the lab over the long period of treatment with chemo, for lab results.

7.  It ends menstruation.

8.  It ends birth control.

9.  It doesn't cause baldness or repeated nausea or repeated weakness.

10. It is less expensive by far than chemotherapy.

11. With some honest logic and compassion and a LOT less procrastination, it could be combined with trastuzumab and/or lapatinib, just like standard chemotherapy is.

12. Oncs could be honest about all options that provide some protection.

13. Chemotherapies are hit and miss; the chemo selected usually doesn't happen to match the cancer.

14. Chemotherapies provide variable effect upon the ovarian function, dependent on the individual, whereas ovarian function ends with surgical removal.

15. You don't have contact with or repeatedly pee out toxic chemicals and then rationalize away that lack of environmental concern.

16. Your health care costs are far, far less for treatment.

17. You don't lose your fingernails or your toenails, or have them turn black.

18. The range of recommended chemotherapies is greater should you recur.

19. Stem cells are thought not to be killed by chemotherapy anyway.

20. Trastuzumab would likely provide additional protection in terms of cells.

21. One's immune system would be intact.

22. If one has other health conditions that are likely to be seriously negatively affected by chemotherapy, OA would not diminish the immune system response whereas chemo would.

23. One doesn't need to do 5 years of an AI afterward, with all the joint pains and other SE's from those.

NEITHER ADVANTAGE OR DISADVANTAGE:

1. It is uncertain whether the aging effects of OA are better or worse than those with chemo but they are generally equivalent.

2.  Chemotherapies often do not match the individual's cancer characteristics.

DISADVANTAGES of OA for HER2 positive HR positive patients over TCH or AC+TH:

1. It is not known whether OA plus trastuzumab and/or lapatinib is equal to current standard therapy plus trastuzumab and/or lapatinib.

2. Many people do not understand the value of OA or that it is an option, and it is not usually explained to them as a rule "because it would be wrong to give anything but standard therapy".

3. IF the chemo matches the cancer, it does kill cancer cells. OA does not. Trastuzumab provides additional protection.

4. Surgical OA is permanent, not reversible, ending fecundity, with loss of libido, and dyspareunia.

5. It is a surgical procedure with all the typical risks of nerve damage, permanent pain, error by the surgeon, risks of anesthesia, permanent sterilization, surgical recovery time, etc.  

6.  If pre-menopausal women do OA they run the risk of osteoporosis and having to use bisphosphanate medications to combat it and the risks and side effects with those drugs. Osteopenia/ostrporosis requires bone density scans and prescription drugs.  They also run the risk of high cholesterol which requires regular lipid panels and CMP blood tests to screen for liver damage and cholesterol levels, and prescription drugs. 

 If I have left any out, feel free to add to the lists.

A.A.

I agree that medical providers have a better body count on those who have chosen to do  chemotherapy, because the treatment is done recognized facilities. They are less aware of those who chose not to do chemotherapy. And they certainly don't have the knowledge of those who would have chosen OA had they known about it, since it is a matter of oncologic preference as to whether it is offered or not.

I think you do not accept my own experience as being relevant, or would prefer to believe it is rare.

"What I say is, ask your doctor - he/she is the trained expert.  You/we are not the expert.  Ask questions.  Evaluate risk vs benefit.  Make the choice together with your treatment team that is best in your individual circumstances."

1. I was not the expert. I asked my professional and highly respected oncologist repeatedly whether OA plus tamoxifen would substitute for the CAFx6 that he was recommending at that time, before the current therapies were being offered. That trained expert gave no explanation and indicated it was not. His answer was not professional.

2. I could not evaluate the risk vs benefit because the information was withheld from me.

3. I could not make the choice "together with my treatment team" since my onc was responsible for providing me with the information that I was HER2+++, which he had in his file for me, and he failed to provide it.

A.A.

I personally believe that it should be mandatory to present the option rather than leaving up to oncs like mine to avoid the question because of their particular cocktail preference. If chemotherapy is as golden an opportunity as it is represented to be by proclaiming it the standard of care, then why would anyone be worried about it not being preferred by the individual who is supposedly allowed to "choose" it?

Secondly -- The question remains, is natural menopause, with the ovaries intact and still producing an unknown amount of hormones for at least as long as 10 years afterward, actually equal to surgical OA, or is it "not worth scientifically determining whether it is or not" so we will just unscientifically ignore it as an option for the women who, by circumstances, are unlikely to do chemotherapy?

A.A.