Is Chemo necessary?

Hi Donna,

Pam - What a kind response you had and what an ordeal, do have gone through the chemo and then find out it doesn't work.  Did you say you had re-currence AFTER chemo?  I am going for my second opinion to a university setting this Friday.  I had a small tumor, finishing radiation, but still wondering .......... - I think over all, we have to learn to live in peace each day.  Thank you.

Pam, the 8% effectiveness of Adria number thrown around is WRONG, totally unsubstantiated.  Of TN women who respond super well to chemo (close to half) a big % of them respond well to adria (about 50% of pCRs happen during the adria phase of ACT).   Cytoxan, I don't know about.  Nobody ever tests it by itself.  But we know that the combo AC IS effective for many.  As for taxol, more data is coming out about it, but I can tell you that about half the women who have pCRs on ACT see their tumors melt away during the taxol phase.  That tells me this is a good drug for many.

The moral of the story:  don't believe everything you read, even (especially?) in science!!  You always have to look at the particulars of a study to draw your conclusions.  Not just the abstract.  And as in many other parts of life, SIZE MATTERS! (;))  Small studies don't have the power to say much, especially when looking at a disease as heterogeneous as TN.

Love,
Denise

Taharadale,

I started to lose my hair on day 15 also.  We went ahead and shaved my head (about 3/8" on the trimmer).  The hair continued to come out for the next few days.  I had some hair around the base and side burn area and a few on top.  Kind of reminded me of a newborn with sporadic hair.

Donna

Donna, if you have a 10% chance of recurrence you treat 10 to *try* and save 1.  With 50% chance of chemo making the difference, you treat 20 to save 1 (this 50% is generous...it is closer to 35%).  18 didn't need treatment, 1 needed some type of treatment but not the one that was offered, and 1 needed the treatment offered.   A 1/20 (5%) chance that chemo is worth doing.  95% chance that either chemo is unnecessary or unhelpful.  Doesn't this make Sara's choice (and every other woman with a smallish Stage I tumor) to avoid chemo sound rational?
 
-Denise

My recurrence came back after Chemo and Radiation. It was about 4 months after I completed my treatment, about 1 year after first diagnosis. Sometimes chemo just doesn't work for everyone. I was one of those. But that's something you don't know until later if you have surgery before chemo. Usually with tumors over 2cm they will do chemo first to shrink...mine was just barely 2cm so they did surgery first.

Dear Denise,

Your explanation of what the actual percentages mean with regard to chemo is right on the money.  My experience has been that most patients misunderstand what the numbers mean. 

It is also true of radiation therapy.  When they tell us that radiation reduces the risk of recurrence by, for example, 33 percent, it is often misunderstood by most patients.  They think that it is reducing their actual personal recurrence risk by whatever figure is presented, but that is not in fact the case.  When my onco radiologist, told me I would have a 33 percent reduction of local recurrence with radiation I pressed a little further.  What he meant was that in my class of disease, out of 100 patients, 3 would have local recurrence without radiation.  With radiation, only 2 would have local recurrence, a reduction of 33 percent!  But it didn't mean that I would personally have a reduced risk of 33%, and that is what was implied.  It is what I call a "rubber" number and sadly misleading.  I am not devaluing the therapies, but I wish the numbers were more absolute in terms of their actual meaning. 

Bliss

Cigi,

Hi CiGi,

I did not have radiation, but I had a MASTECTOMY. My oncologist said with a lumpectomy, radiation is almost always given. If there are any cells left in the breast tissue after lumpectomy, chemo and radiation will wipe them out hopefully. If a mastectomy, no radiation in my case.

Just sharing....

God Bless,
Lillie

Dear Steve,

I know what you mean about different doctors have different opinions. My oncologist said with 2 or more nodes positive, always radiation.

In my case I had an extra drug, gemzar, (clinical trial). Also the node affected was a miniscule amount. He just said that he didn't think radiation was necessary in my situation.....

I am so happy about your daughter being 6 years NED. I am thankful that she is sharing her experience to help other people.

God Bless,
Lillie