Oncotype DX Roll Call!

Scarp - I noticed you are on CMF.  I just got my oncotype score of 23 and meet with the Oncologist next week.  She said if I did chemo, it would be CMF.  How are you doing?  She also mentioned I wouldn't lose hair - have you?  I don't know if I should get a wig, or wait, or what....I haven't seen CMF listed by anyone else.  Thanks in advance!

Susan 44, IDC tumor 1.6cm, lumpectomy 12/01/08, 0/3 nodes, stage I, not clear margins (rexcision pending), oncotype #23, pending chemo and rad

Moody

Oh, sorry I didn't mention... I had forgotten what the percentage that my onc gave me.  I was so very disappointed that my Oncotype score was so high!!   I believe my recurrance risk was 18% and that still seemed too high to me. 

I think the list you are making is very interesting!  Better than the statistics that the oncs give us, because these are based on REAL people, from bc.org!!

Thanks for putting this together!

Harley

KEW, I'm sure you were shocked and disappointed by that 2nd opinion, after thinking you would not need chemo.  Onco #2 certainly didn't make things any easier for you.  But, there are a couple of things onco #2 might have been thinking about that would argue in favor of chemo, even with an Oncotype score of 15.

The first thing is the size of your tumor.  A tumor of 2.6 cm is large enough to worry many oncologists--even those who trust Oncotype testing.  If you had 10 nodes removed and all were negative, that provides strong evidence that the tumor did not spread via the lymphatic system.  It is possible for BC to spread directly through the blood, though; and in general, larger tumors are more likely to have spread already, prior to surgery.

The second issue is your age.  I'm assuming you are pretty young.  For one thing, you said you'd been a single mom for 12 years.  Age is a factor most oncos take into account when considering chemo.  Younger women tend to have more aggressive tumors, and they have more years of life to protect from a recurrence.

You also said you "needed to stick around."  There is a lot at risk. 

I can tell from your words that you were puzzled--and maybe angered--by the unusual approach the 2nd onco took.  You said he "... asked me what kind of person I am.  Am I the kind of person who will choose not to do chemo and be angry if it returns, or am I the kind of person who will be angry if I go through chemo and it returns.  He asked me what my values are. So strange."

Yes, that was strange.  But, he was treating you as a person--as an individual--rather than as a tumor or a page of numbers or a pathology report.  Your Oncotype score is low, but taking those other factors into consideration, your score isn't so low as to completely discount chemo.  So, onco #2 was trying to find out how you handle risk and disappointment.

Those were important questions he asked you.  Which would be harder for you to handle:  not getting chemo and having a recurrence of your tumor, or getting chemo but finding out it didn't work (i.e., having a recurrence)?  Keep in mind that the type of recurrence being prevented by chemo is a distant recurrence, which is metastatic BC.

IMHO, we should all be asking those types of questions of ourselves.  Very few oncos ask them, unfortunately.  I am a left-brain person--I use numbers and percentages to make decisions.  OTOH, it's kind of refreshing for an onco to take someone's values and priorities into account.

otter 

KEW, what you said is important:  "I think I would be more upset if I went through the chemo and had a recurrence."  That sounds like you might be better off to decline chemo and go with onco #1.

It really is important for each of us to sort those things out for ourselves.  Test out the "what-ifs" and see how they feel.

otter 

My oncotype DX score was 8 with a 6% chance of recurrence and chemo would reduce it half to 3%.  I did the chemo.  I had 3 opinions - 1 said no to chemo, start on tamox, but chemo wasn't necessarily the wrong answer either. 2 - recommended chemo & provided me with the analysis of where the oncotype dx numbers came from - majority post menopausal women and almost entirely IDC with smaller tumors. The 3rd opinion - Johns Hopkins - they said with the size of my tumor alone they never would have even done the Oncotype - straight to chemo.  Oncotype Dx is a valuable tool, but not for all of us.  You really need to be cautious if you are premenopausal, have ILC (or something other than IDC), or have a larger tumor. 

I agree with Otter, we have to make decisions based on what we are comfortable with.  (As my son said, even following the Oncotype Dx recommendation, chemo would lower my recurrence by half to 3% & 4 rounds of TC was doable for that.)  Please make sure of the data you are looking at, if you are basing your decision to have chemo or not purely on a recurrence score.

We have entered a strange, new world!  KEW, I hate that you are having to make such huge decisions with so many variables in the mix.  I had had 30+ years to comptemplate the possibility of breast cancer (multiple cysts, aspirations, biopsies, repeated call-backs for tests), so I knew what I wanted as soon as I heard BC--- bilateral mastectomy and chemo and anything else that could be thrown at me.  As it turned out, the 2.5 cm IDC (and ductal carcinoma), Grade 2 but no node involvement brought me out of surgery with a port.  (Both breasts also contained atypical lobular hyperplasias).  So without many of the numbers, my path had pretty much been decided and it fit in with what I knew I wanted.  Six weeks after surgery, I just received the oncotype dx (I must have a "nice" insurance co.)---27 recurrence score, with an average rate of distant recurrence of 17%.   Therefore, port was necessary and I'm ready to go when my healing "blip" closes.  I assume chemo will further reduce my chances for recurrence.  As all these folks have indicated, it's ultimately a personal decision......   

[That's okay.  I'm working on my homework assignment.  I just hope it's not due until tomorrow, or maybe Friday.      ]

otter 

Thanks to everyone.  I appreciate your thoughts and sharing your experiences.  I just saw my family med doc and he gave me the name of a potential 3rd onco.  I'm seeing the 1st and my surgeon next week.  I really am on the fence.  When my mother died 25 years ago I swore that I would do whatever was available to beat it, but I've learned a lot about ER positive cancers and it becomes less clear, at least for me.  There is strong evidence in the primary literature that chemo's effect was on the ovaries and by shutting down the ovaries there was less estrogen floating around--that was the benefit.  Apparently, the ER+ cells don't grow as fast as most cancer cells (and hair, nails, etc.), so there is a school of thought that they kind of go "unnoticed" by the chemo, but the success comes from ovarian suppression and the Tamoxifen.  I do not have a bias against chemo, I just need to know that the benefits outweigh the risk.  I was told by 2^nd onco that in Japan, France, Finland and other countries I wouldn't even be considered for chemo, it would be ovarian suppression and Tamoxifen.  The 1st onco talked to me about this, but felt I didn't need to do that.  The 2nd didn't even bring it up, until I did and he stated the above.  He said that at conferences it gets pretty nasty as the Europeans accuse the US of using too much chemo.  They have pretty much the same results with ovarian suppression and Tamoxifen as we do with chemo and Tamoxifen.  The 2nd oncologist discouraged me from this route though saying that I would then be prone to the ills of post-menopausal women.  My thought was, I'm going to be post-menopausal at some point being the average age is 51.  Thanks for allowing me to share my confusion.

I'll keep you posted.  I admire everyone's strength, thoughts, knowledge, and courage.  Thank you.

Let's enjoy 2009--KEW

Moody, it's okay.  I wasn't offended by mattscot's comment--in fact, I think maybe she was trying to suggest that the homework assignment I'd been given wasn't fair, because oncologists don't even know the answer.

And, I wasn't offended by Seabee's challenge:  "I'm wondering if she can explain clearly how cancer cells get into the bloodstream, and why a larger tumor is considered more likely to have spread. I can see how cancer can get into the bloodstream through vascular invasion. It is far less clear to me how this would happen in the lymph nodes or through the tumor's own blood supply, which are the only other possible routes that I can think of."

Seabee seems to be scientifically-inclined, and her question/challenge is a reasonable one that is being studied enthusiastically by a lot of researchers.  I don't know if I can answer her question clearly.  Mattscot is right--the mechanisms involved in tumor metastasis are complicated, and there is new information coming out every day.

I will do some literature searches and see what I can find, though.  I might be short of time, since I'm visiting my family for the holidays and we're getting ready to eat dinner (plus there are some football games that I'd like to watch).

Everybody have a happy new year!

otter 

aprilgirl,

Hi.  Welcome to the club! 

I felt the same way about getting chemo.  Even though, with a score of 28, I thought it was HIGH, my onc didn't think it was so very high...  I think the reason I felt more at peace with getting chemo, is that IF I still get a recurrence, after having done the chemo, at least I know I did all I could to prevent recurrence.  If I didn't get chemo, and I had a recurrence, I would NEVER forgive myself, and always second guess myself... I didn't want to live my life thinking  you SHOULDA ...

Just my 2 cents...

Ah... CMF!  I thought I was going to get CMF, but my onc vetoe'd it.  It is supposed to be gentler on your hair, so you may not lose all your hair, but it will thin out, for sure.  Good Luck with your tx!  Please keep  me posted, and let me know how you're doing.  There is a thread on Helping me get through treatment, called THE CMF Question... the ladies there are so very nice and helpful.  I have been adopted by the ladies there, and I'm an honorary member, even though I didn't get CMF.  I got 4 tx of Taxotere & Cytoxan, and I DID lose my hair.  But it came back in just fine, and it's been almost two years since my bc dx, and I'm doing just fine, and so will you.

Hugs

Harley

Mattscot--I'm all in favor of chemo as long as someone needs it and benefits from it and I know it does benefit some patients. But I'm a minimalist by disposition. I like economy and efficiency. If I take a medicine or commit to a course of therapy, I like to think that it will work. Otherwise I'm just wasting time and money, and possibly risking what good heath I still have.

When I go to an oncologist and he proposes a regimen that I have good reason to believe is unnecessarliy risky and likely to prove ineffective, it makes me wonder how many other people are haviing the same experience. It makes me wonder what the rationale for the treatment is, and what evidential basis it has--as opposed to a theoretical basis. I think it is reasonable to ask these questions.

Otter has a knack for explaining things clearly, and the patience to sort through complex material, so that's why I asked her.  I have done some research on these questions, without much success. It seems just to be assumed that cancer can get into the bloodstream from the lymph nodes, but since the business of the lymph nodes is to filter out the blood rather than dump things into it, how does this work?

I did find a rather amusing (if speculative) account of what probably happens to cancer cells that do get into the bloodstream. This account assumed that stray cells can't live long after being separated from the parent tumor, unless they find some comfortable place to roost and replicate, like a lymph node. Possibly only one in thousands of those that get into the bloodstream survives. If they don't succeed in relocating quickly, they get knocked around and battered once they get into the rapidly moving arterial bloodstream. Some probably get destroyed by T-cells, But this clever account doesn't say how those cancer cells manage to "slip" through the walls of blood vessels into organs once they get stuck in capillaries, so it didn't really answer my questions, though it did give me a chance to imagine what it might be like to be whipiped through the aorta. You can find it at www.cancerhelp.org.uk.

April,

Glad you found the CMF thread.  Maybe I'll see you around there, although they are so very busy with lots of newbies joining in, I doubt that they would miss me if I didn't post there for awhile.

Good Luck to you!!

Hugs

Harley