if you were/are in chemo grey zone what resources help?

Suz, it turned out that I wasn't really in a grey zone for chemo, once we received my Oncotype DX report.  Until then, my surgeon and my med onco figured I probably would not need chemo.  So, I did have time to think about the question you've asked, and I used many of the resources you mentioned.

My Oncotype score was 26, which meant my risk of distant recurrence (mets) in the next 10 years was 17% even with 5 years of tamoxifen.  So, I was not surprised when my med onco recommended chemo, and when another med onco I consulted also said I needed chemo.  My score was well above my "comfort threshold" for declining chemo.

There's no point re-hashing all the other factors, since they really aren't relevant to someone who truly is in the grey zone.  But, there was one thing someone said that I thought was really helpful.   I've heard two different versions of that advice.

The simple version is, "Choose the path of least regret."  Think about your options, and play some "what if?" games in your mind.  Imagine what could happen, and how you would feel about it, if you chose chemo; and then look at the question the other way around.  You have to know the statistics on recurrence risk and chemo SE's to fill in the gaps, though.

Another version of the same advice is this:  Which of the following situations would cause you the most anguish (and regret):  Not having chemo, and finding out later that your cancer has returned; or going through chemo, and having your cancer come back anyway?

Once I asked myself that question, the answer was obvious.  For me, it was more important to know that I had "not wasted a bullet"--that I had done something aggressive at the earliest stage possible, even if it ended up not working.  I would have hated myself if I had turned down an opportunity to decrease my absolute recurrence risk by 5%, and sure enough, my cancer returned.

If you do base your chemo decision on questions like that, be sure you aren't trading a small benefit from chemo (say, 2 to 3% reduction in recurrence risk) for a 2 to 3% risk of permanent complications from the chemo itself. It was important to me that the statistical benefit from chemo outweighed the statistical chances that the chemo would cause long-term harm.

Can you tell that I'm into statistics?  I rely heavily on medical journals and clinical research results to make my decisions. That does not help some people, but it gives me comfort.

Hugs...

otter 

Suz

My score was 25 ( 16% return)  I am 45 yrs old.  It was a not thinker for me. I said yes!  Now that's just me.  I wanted to do everything possible.   I agree with aprilgirl1, "I don't care if studies come out in 5 years that it was unnecessary.  I WOULD care if studies came out that it was necessary and I chose not to have it.  For me I am confident that I have done all I can do minimize my recurrence risk. "

For the record, chemo did not have a negative effect on my QOL, but like I said - my decision. I am happy with it, and many are happy to chose no chemo, which is great.

My NCI cancer center also provided me with DVD about risks and benefits.  My sister works at UCSF so I had that hospital as well as a very reputable Breast Cancer Oncologist at Stanford advise me.  Interestingly, Stanford not only wanted me to do chemo, but a "harsher" form.  Both had my pathology reports, (pre and post surgery) and films.

The chemo I had (cmf) has must less risk factors than many, and truly I felt fine - could have worked full time with it.

Suz42 - pro or con, often the decisions are left up to us.  Chemo is not always necessary, but at the same time not all chemo is terrible or crippling.  The most confusing aspect about bc to me is that you can take your stats to one place and they say X and another and they say Y.  

I also chose lumpectomy with a breast reduction - my silver lining!   It's nice to have SOMETHING great out of this.

Yep - a GREAT option - my surgical oncologist said it is the "way of the future - for large breasted women"!  I also was able to have less radiation!

The hard part is coordinating the surgery.

Research, research is always good - and then you have to make a decision.

suz

I was a 27 on the oncotype-- took me one minute to decide on chemo--- I knew myself well enough to know that if I did not do it, I would be up at night worrying about it for the rest of my life.  I reduced my potential recurrence risk from 18% to 9%- it was so worth it- I have two young children---I had a lumpectomy with no nodes and clear margins

I was able to work through most of chemo- I think going into it very healthy made a difference--- and I sleep like a rock most nights..... My hair has grown back wildly curly--- I really love it-- and I feel healthier than I ever did... chemo was not fun, but it was not unbearable.... and I don't regret it at all....

I could have gone without it, but after I decided, my onc, my surgeon and my second opinion onc all agreed with me-- I did 4 treatments then radiation.

what is this breast reduction??? I need to hear more about this?  did you have your other breast reduced when you did the lumpectomy?  Love to hear more about that....

I really think this decision is about what you can live with for the long haul..... I feel like I took every weapon that is available right now and threw it at an early stage bc..... I sincerely hope and plan for it never to come back----and I  know I did everything possible in 2009 to prevent its return..... best of luck

This is off-topic a bit, but, Tender, do you know if it's possible to get the individual Ki-67 "score" dissected from the Oncotype DX recurrence score?  Would Genomic Health report the Ki-67 result if asked?  It wasn't in the Oncotype DX report I received, but that was back in March 2008 and things might have changed. 

I've read that Ki-67 is a critical component of the formula for calculating the Oncotype score and it is weighted heavily (positive Ki-67 resulting in a higher Oncotype recurrence score).  I've also read that higher Ki-67 reactivity correlates with "Luminal B"-type tumors, which tend to be more aggressive and pose a greater recurrence risk than the more common Luminal A tumors.

So much homework left...

otter 

Otter, I don't want to hog this thread with technicality on Oncotype DX due to Suz42's original post, so I will pm you. T.

Regarding the Oncotype DX and the Ki-67 score, I think you might have to request it separately from what you receive from them which may just be the composite (summary of 21 gene's weight) score.

In other words, if your Oncotype DX score is say 25, that is the weighted score of all the gene analysis. To get your specific ER/PR and/or Ki-67 score ( a proliferation score), you may have to write the company and request this information.

I was not trying to be exclusionary here, just sensitive to the original post's request wo clutter of technorati. 

Best, 

Tender

PS: the Oncotype DX consists of genetic analysis of your tumor of 21 genes (pooled from 200 and selected as 21 of the most reflective of recurrence). I tried to post a copy of the list with difficulty.

ER, PR are two of the 21 genes and under the caption marked estrogen

Ki-67 is another of the 21 genes, and along with 5 others are under the caption marked proliferation. 

Hope ths helps.T.

I have a friend who's co-worker was fighting this battle for the second time when I found out I had B.C..Now keep in mind I do not her her entire story,( prev stage, grade, type of b.c etc) but the 1st round she said no to chemo.... the second bout with b.c,, well she died.  She told my friend she was so happy to hear I went for the chemo.  She wishes she had on her 1st cancer .  Now I don't know everything about her prev cancer and current.  I'm not trying to put it one way or the other.  Chemo today is a lot different then chemo was in the past.  Thanks to research. Good luck to anyone making the  decision!

Suz,  I started out in the grey zone, but got the oncotype score of 36 back, so there was no question with my oncologist that I needed chemo- first he said 4 rounds then changed it to 6 "planned" -- I thought i may quit after 4-but i did the 6--it was very hard- but I did not throw up- just felt really bad- and not being able to taste/enjoy food was the worst thing, now almost 1 year past chemo- i feel great.  I feel like i gave it my all and did everything I could to prevent this from coming back. I am working on my diet/exercise alot know and trying to lose 20 pounds and taking my tamoxifen.

Yes, low Ki67 is good.

Ivorymom,

Yes, thank you for the article!  My onc had already determined not to recommend chemo for my Oncotype score of 21 (at age 62 plus some other factors) 

Then I was beginning to rethink it a little, but that article helped me focus again.  It is the right decision for me.

Yes, Suz, you probably are in the right place.  The folks who manage that site are trying to keep patients away from it because they think patients couldn't understand or use the information properly....which is probably true for a lot of cancer patients.  The site managers think we should be getting information about recurrence risk and prognosis from our oncos... which is generally a good idea.  But, they don't know us very well, do they?  heh heh...

Don't worry.  I've never heard of anyone having their registration info checked out to see if they are who they say they are.  One alternative is to twist the arm of someone here who's already registered, and have her enter your information.

otter