Oncotype DX Roll Call!

Seabee

There are differences between IDC and ILC, but I don't know that they are an argument for doing chemo, because classic ILC is more resistant to chemo than IDC. Chemo seems more likely to work for aggressive ILC tumors that behave more like IDC. It is true that more aggressive treatment is recommended for younger patients, I suppose partly because they have a longer time ahead in which cancer might recur, but I would think that would apply more to very young patients than to patients in their forties and fifties.

But if doing chemo makes someone feel safer, there's no reason to regret doing it. In fact there's no reason to regret any carefully considered decision one makes in this game, because there's still a lot we don't know.

Seabee

Yes, I'm sure there are oncologists who give equal weight to oncotype scores and to the details of staging. Judging from what I've seen here, there are also some who simply ignore oncotype scores if they conflict with established clinical guidelines, and others who give more weight to the oncotype results than to clinical guidelines, which necessarily involve broad generaliztions and hair-splitting distinctions (the category of micromets, for example). I can sense some difference of opinion in the members of my treatment team. The radiation oncologist is more inclined to trust the oncotype test than the others.

Tumor size and node involvement do tend to indicate how advanced the disease is and can be statistically linked to rates of recurrence and survival. The question, though, is not whether a tumor needs to be treated, but what kind of treatment offers the most benefit at the least risk. Tumors larger than .9 mm and marginal node involvement aren't necessarily best treated with chemo, though chemo may do the job. You can kill a fly with a bazooka, but a well-aimed swat will do just as well.

moodyk13

Since there is such a "debate" going on here regarding chemo I wanted to ask if anyone has experienced something I ran up against ALOT last year:

When I was first dx'd I was told by my surgeon thata bi-lat mast would "cure" me--this was before my onco consult/oncotype score/HER2/neu +++, anyway the first 3 weeks of my dx I would have women actually tell me "Oh well you dont have it that bad if all you have to do is have a mastectomy...." 

So I walked around for those 3 weeks thinking I didnt have the "right" to be sad or scared that I had cancer since at that time I wasn't aware that I would indeed need chemo.  Of course when my onco score came back so high because of my HER2/neu status I had to have chemo and Herceptin.  Then many women went from "oh yours isnt bad" to "OMGosh your gonna die"---they didnt actually say I was gonna die, but the looks on thier faces said it all. 

Have any of you had these types of reactions?  It is crazy!  I mean of course my early dx was a complete blessing and in no way comparable to those who have mets.  I guess it is more a case of letting the words of others affect how I felt inside.  I AM grateful I was dx'd at stage 1, but to be made to feel like it was no more than a stumped toe was hard to deal with.

Minnegirl1

Hi, I'm new to this site and have a question. Dx May 7th, 2008 while 4 months pregnant. 1.8cm tumor, Stage 1, Grade 1, lumpectomy, 4 A/C, 33 Rads + 5 years Tamox. PLUS, 1 beautiful Healthy baby girl!! . My Onco score was 28 18% recurrance which the doctor was NOT expecting to see based on all the positive news from my path report. He said 100% Chemo! So, here I am faced with the difficult decision to undergo chemo while pregnant and I was so uncertain. He said to me, hon, what good is it to have a baby if you won't be here to watch her grow up. I made up my mind right then to move forward and so glad I did! It was nowhere near as bad as I thought it would be. I carried my baby to 36 1/2 weeks and worked full time while undergoing trtment. But now that I'm done with treatment, I reflect back on that ever so scary number of 28! It makes me wonder, am I doomed even with all the treatment and Tamoxifen with that kind of  number ?? It seems so high to me. With all the info and all the graphs, I still don't understand these #'s and it scares me. I sometimes wish I would have just had the chemo and never did the Oncotype. That number messes with my head constantly. Any information is Lamens terms would be much appreciated. Thank you so much for listening to my story!

Seabee

As for people's reactions, I have told very few people that I have BC, but I have seen that look on some faces. Cancer scares people (for good reason, perhaps, since it is an insidious and somewhat mysterious disease), and the less they know about it the more it scares them. Luckily I have (so far) escaped mastectomy, but I would find the attitude that it was a quick and easy solution more irritating than worried or sympathetic looks, because my mother had one and I know too much about what it involves.

Seabee

MInnegirl1--What matters is not the Oncotype score, but what it indicates about the effectiveness of treatment.  The 18% recurrence rate is for treatment with Tamox alone. When chemo, which you have had, is added, the recurrence rate for a score of 28 drops well under 10%. Try telling yourself that, thanks to that score of 28, you now have a 95% chance of disease-free survival, and you'll probably feel much better.

JustSaying

Unfortunately the confidence interval doesn't provide anything in the way of statistical significance until you reach the scores above 31. This is a finer point that my onc pointed out to me. Look at the chart on page 2 of the results; "Absolute Benefit of Chemotherapy at 10 Years by Recurrence Score Group". The bars showing the confidence interval ranges are larger than the % decrease in distant recurrence until you get to 31 and above. That's where the Taylorx study will probably provide better insight.

Minnegirl1

Seabee - Thank you for your reply. That is the information I was looking for and this is also the percentage my Onc gave me, 90-95%. But, that darn number continued to fill me with doubt. I was thinking of it like a Score of 28 meant it was more of an advanced/aggressive disease even though I was only a Stage 1 according to the Path report. Obvioulsy I was very confused. Thank you for claryifying.

moodyk13

minnegirl1, first, I want to thank you for sharing your info with us.  I have added you to the rollcall. 

Second, let me say CONGRATS for delivering a healthy baby girl!!!  Isn't it AMAZING that pregnant women can now have tx for BC w/o having to worry about hurting your unborn child.  Here is a toast!!

Third, you came to the right place to express your thoughts, concerns, and fears.  I venture to guess that we all at some time or other worry about our cancer coming back.  The fact is your cancer might come back.  You might get hit by a bus.  The most important thing to remember is you have done everything possible to assure a disease free life.  You look both ways before crossing the street.  All you can do is all you can do. 

Understand that you will always have that fear tucked away in the back of your head.  Talking about that fear with other survivors is probably the best way to handle it.  My score was 36 with 25% recur but after tx my recur is only 8%.  Yes I sometimes think "what if it comes back?"  and sometimes it really scares me that it might.  Then I rem that 8% and figure I really do have a better chance of getting hit by a bus......LOL

Minnegirl1

Moodyk13, Thank you so much for your kind words of encouragement. This disease is very scary, especially now that I have a child. I want to be here for her as long as I can. Cancer blindsided me. I thought it would be the last thing I'd have to worry about at 33. Then to be diagnosed while pregnant, was so overwhelming and surreal. My focus during that time was my unborn baby and doing what I had to do to keep her safe. Now, that she is here safe and sound I'm able to take in the magnitude of what I went through and I think all of the emotions of a breast cancer diagnosis are finally hitting me. I didn't think I'd have to talk about it with other survivors. I figured I'd be OK just talking about it with family and friends. But, I'm realizing I do need to talk to other women who've gone through this and it does help. So, thank you.

moodyk13

Minnie I cannot imagine what you have experienced with your dx and being pregnant.  I do understand your determination to be around for your daughter though.  I have a 19yr old son and a 12yr daughter and they are in themselves all the motivation I needed to endure chemo.

I found that family and friends were great for loving and caring, but had no clue all the emotions I was feeling.  And it is obvious that since giving birth, you have a whole other factor going with hormones going CRAZY!!!

We are all in this together and you have a wealth of understanding and support here.  These women are incredible!  You ever need to vent, gripe, whine, complain, cry, laugh, tease, anything, you just come here as we all can relate (unfortunately)

every8thwoman

Hello everybody,

Haven't been here lately.  I'm amazed at the Oncotype dx roll call response!!  Just got a job teaching and have been caught up with teacher stuff, lesson plans, etc.  I would love my onc to see the list above because I really don't think most doctors can fully appreciate even this partial list.  Moody, I hope your daughter is feeling better.  Sorry I've been away so long.  I have a question which I will post soon about cancer screening.  This has been bothering me for some time.  My bc was never detected by mammography but by biopsy followed by MRI.  The biopsy finding was totally accidental.  If mammography only detects at best 75%-80% of tumors and if approximately 180,000 women are diagnosed in the US per year then if you crunch the numbers, this means that approximately 60,000-plus  women who go for mammography every year are sent home with "no evidence of cancer" reports when in fact they DO have bc.  I was one of those women.  I'm thinking of doing a screening roll call.  That is, asking women how your bc was found.  Does anyone think this would be helpful??? 

darsura

Every8thwoman, I think your idea for a roll call asking how our breast cancer was found would be a very interesting one.  I too am one of those women whose breast cancer was not picked up on mammogram.  Not only was my IDC not found by mammogram, but my ILC was not found even following MRI.  It was a complete surprise to me when my pathology report after mastectomy indicated a second primary cancer.  I am so thankful I found that lump (and by total accident....I wasn't even looking!).

Anonymous

Bad News!  I had an Oncotype of 11 and just found out that I have brain mets.  I guess I am the 6%.

Melissa

JustSaying

Melissa, this is terrible news, please let me know if there is anything I can do - I know I am far away, but if you just need to call and talk send me a PM I'll give you my number.

Seabee

Melissa--lousy news, but don't give up. What kind of treatment did you have, and why did you have a bilateral mast 10 months after the lumpectomy? I'd like to know more of your story, if you wouldn't mind telling it.

Anonymous

Melissa  - I'm really sorry to hear about your brain mets ... that's scary and just rotten ... it really sucks!! ! I know there's a lot that can be done for brain mets -  with new drugs that cross the blood brain barrier - and cyberknife. Do you have a single lesion on your brain ??

can you tell us some more about you ?  what age were you when you were diagnosed ?

were you on tamoxifen or one of the AI's for hormone therapy ?

with your oncotype score I'm assuming you declined chemo ?

did you have radiation ? 

Sorry for these questions during a crisis - but I'm sure many are going to be really scared by your news ...   

Hugs to you  - let me know if there's anything you'd like help researching or investigating.  Or if you'd like help with creating a list of questions for your doctors  

Doreen 

JudyO

Melissa...Just wanted you know that another person is praying for you and hoping all goes well. I have always had a negative thought about you stage oners...thinking what do they have to worry about...now I see it can get you too....my poor husband ran home at lunch today only to find me crying....they were tears for you and for the rest of us....keep in mind good thoughts ....since the other stats you have are good...grade 1 and the er/pr+ you will have many more years to worry about all of this...and hopefully in those years more cures will be found....

Anonymous

Thanks so much to all of you.  Please pray for me.  Some of you have asked about my story.  I was diagnosed in August 2007 with Grade 1, ER+PR+, HER2-, 2.2 cm IDC with an Oncotype of 11.  My doctor who is the best in the south stated I had a 94% chance of no mets.  He said that chemo would only give me a 1% better chance.  I said no and did lumpectomy with rads.  Next year 2008 had my first mammogram after surgery and they found microcalcifications. I decided to have a BLM w/o recon.  BLM was totally normal.  They only found a fibroadenoma (benign).  My breasts were very dense so really nothing worked.  I had no regrets about the BLM and did great.  Started having dizziness and a funny (tingling) at the base of my skull about 2 months ago.  MRI showed two areas.  Going to neurosurgeon tomorrow.  My breast surgeon was dumbfounded.  He said it just could not be happening.  Thanks again to everyone.  I will post again after I hear what the plans are.

moodyk13

Aug242007, that just blows my mind!!!  You are the second sister on this board this week that I know discovering mets to the brain after tx!!!!!  You are def 100% in my prayers!!!!

Speaking of, please visit "Prayers for Diane (Estepp's friend)" in the prayer forum. She is 31 yrs old, just finished her tx's in Dec (I think) went for her 1 year from dx scan and found mets to brain.  She has 4 children too.  Please pop over and offer her encouragement.

I would love to start a prayer thread for you Melissa so we can all encourage you along this new tx path, and it would make it very easy for you to keep everyone updated on your treatments, if you'd like.  Please let me know!

every8thwoman I think it sounds like a great idea.  You get it up and post here what the title is so we can join in!

Hood1980

Melissa my prayers are with you! 

Estepp

Melissa, Karen told me you were over here... my dear friend received similar news yesterday.
Her tumor is small and she is getting ready to zap it out of there and GET ON WITH LIVING!

You are going to do the same!   I hope you and she have the opportunity to chat here. I am sure you BOTH are just spinning right now. I am praying for you... I am.

Laura

mzmiller99

Melis - warm hugs and prayers.  You're in many thoughts.

Susan

Anonymous

Melissa, just wanted to add on to this thread that I will be praying for you as well.  Thank you for letting us know.  Stay strong!

Susan

Anonymous

Melissa - I'd talk to your doctor about making sure that it's bc mets and not another primary. It's really important to know for sure! Sending you thoughts and prayers.

Hugs and prayers,

Doreen

whippetmom

Melissa:  I am sure that many, if not all of us, who have a tumor status similar to yours - especially negative nodes - are just stunned and alarmed to hear that you might have brain mets.  We are dumbfounded, right along with your doctor!  This is just such horrid news to hear.  And an Oncotype of 11....it just does not make sense.  and I will most definitely pray for you tonight and tomorrow....for clarity on what is going on here!!

marlenet

Melissa my prayers are with you! 

Seabee

Melissa--I notice you don't mention Tamox.  I assume you've been doing that also. Bummer!Treatments, including chemo, don't always work, but there are other options. The game isn't over yet.

moodyk13

Another sister needs our prayers!  Please go to prayer forum and see "JerseyMaria needs our prayers!"

whippetmom

Has anyone heard from Melissa?  She had an appointment with a neurosurgeon yesterday and just wondering what additional information she has regarding the findings.  I have had her in prayer and on my mind...along with Diana and Maria....just breaks my heart what they are going through...

Lord, I ask for these girls, your peace which surpasses all human understanding...

Deborah