Chemo or no chemo?

I had lumpectomy with clear margins and negative axillary node dissection.  I will be doing 30 days of radiation to the breast, not including the nodes, and at the same time will be taking an aromatase inhibitor (hormone) which previously reduced my tumor over 55%.  The numbers show that hormone therapy will add a 17% advantage and chemo will give me "only" a 4% advantage; so the question is, is it really worth all the negatives of chemo for a 4% advantage?

[japdip]

After Lumpectomy with neg. nodes, Chemo isn't usually recommended ...  if it were it would most likely be done before the Radiation. Were the numbers you quoted obtained from your Oncologist? Just curious .... Radiation is usually confined to the breast.    Regards ....

[katarina777]

I am curious , too. Chemo is not usually a thing where your oncologist says 'take it or leave it', You either need it, and it's indicated, or not. Your doctor should be telling you if it is, and why, and not leave that part up to you. Of course, anybody can refuse anything but it's not like plastic surgery, and where it's really a matter of preference.

[hometeacher]

The aromatase inhibitor worked so well that there is a question as to whether the nodes may have originally had involvement or if it totally starved any possible cancer.  When the original diagnosis was made, I was to have had a mastectomy and sentinel node biopsy.  Instead, I took the aromatase inhibitor and each month the tumor was decreasing significantly.  After 4 months, I had surgery and it showed the tumor had shrunk very,very significantly.  While standard of care...surgery, chemo, and then radiation...was strongly urged, it was noted that I had choices which most people do not have and that I should make informed decisions.  Of course, the oncologist would like me to do the chemo; but, in talking to people, it seems to me that 4% is a small number...cost not worth the benefit in this case.  We know that I have a very good response to the aromatase inhibitor and I will restart it right away and do the radiation if I do not do the chemo.  My question above really is seeking to know how 4% advantage with chemo compares to most people's numbers.

[japdip]

I still wouldn't think that Chemo would even be recommended since your nodes were negative. I know what I would do but that has absolutely no bearing on your decision. Have you considered a second Oncology opinion ?? That's something I would most likely do if the choice were left up to me and I had no real medical knowledge.

[katarina777]

What you just explained is indeed very interesting. You are right, in my case I did not have any choices and I am glad nobody asked me to make them either, because I didn't even know enough about all of this to ask the right questions. (I had stage 3b cancer, and chemo first, then sugery and then radiation and then the tamoxifen)

But, from your story it again becomes clear that there are perhaps other ways to go about this then the usual poisoning, mutilation and burning process.

It would seem that in your case it would be unlikely that you would chose chemo anyway at this point right? It is not only the 4%, but what matters more is what it would have been when you were initially diagnosed , and then the number given to you would have been higher, and you decided not to do it.
I have heard though more than once that hormonal therapy is often more effective than chemo. With me, the chemo worked very well on the breast but no on the positive lymph nodes.

Anyway, thanks for going into more detail and about explaining.
If you want to say more I'd be very interested. kat

[katarina777]

So, does your doctor want you to have chemo because it increases your chances of survival by 4%? What did they tell you when you were initially diagnosed about what they thought the chemo would accomplish as opposed to the path you took?

[katarina777]

PS: I was never given any numbers like that.

[katarina777]

Also, both chemo and radiation, as well as surgery, have the potential to do damage, and you need to weigh that against the 4% possible benefit.

[hometeacher]

My radiation oncologist and oncologist's nurse suggested second opinion as well.

I was given a graph based on my criteria that showed the number of women alive in ten years with surgery and radiation; the next graph states the number of women alive because of adding hormone therapy; the next graph states the number of women alive because of adding chemo.  (Chemo shows an additional 4 out of 100 are alive.)

I saw one oncologist before surgery and after I had been on the aromatase inhibitor 2 1/2 months; all I remember is being upset that they had to go with standard of care numbers based on the day I was diagnosed; they could not give information based on the fact that the tumor was knowingly decreasing.  That visit was over two hours long and I honestly cannot remember numbers...if they were even stated.   It just seemed illogical to me to discount what we all were seeing from the aromatase inhibitor standard of care dictated chemo.  If I had not been in a study (which concludes with surgery after x weeks), I would have probably chosen to continue taking the aromatase inhibitor to see if it disappeared.  That is one of the hopes for the future as I understand the study.