Was told no chemo until Oncotype came back 25.

jbentley · January 2009

Hello,

I am 33 years old and had a lumpectomy on Dec. 12th. I had Stage 1 Grade 2 1cm tumor and both my surgeon and radiation oncologist were convinced chemo was not in my future. I was just got my oncotype score of 25. My medical oncologist is strongly recommending chemo. I was so resigned that chemo was not in my future since my nodes were free and clear. I am just in shock.

I know this oncotype score is relatively high but any other personal stories or thoughts would be helpful.

Just to add to this, without sounding vain, my hair and appearance is part of my profession. I am an actor in NYC and chemo would put me out of my business for almost two years. I want to do all I can to fight my cancer but is there such a difference between a 16% recurrnece rate and having it drop to a 10% recurrent with chemo?

Thank you all for reading this.

rdrake0 · January 2009

I think I'd take it. My oncotype dx was 25, too. But I'm ER/PR+, grade 3 and 59 years old. My med onc said no to chemo. But then I'm getting a second opinion on that the end of Jan.

LizM · January 2009

You are very young and have a lot of years ahead of you. The oncotype dx is the best tool we have to indicate chance of recurrence because it studies the biology of your tumor. If it were me I would follow the recommendations of my oncologist and have chemo. Your first shot is your best shot at beating this disease. If you have a recurrence, can you live with yourself knowing you didn't do the treatment recommended by your doctors. I had chemo and althought it was no walk in the park, I was able to continue working throughout treatment. I exercised daily which helped keep my energy up. I was 49 when going thru treatment so at 33 you should have no problems. I had dose dense (every 2 weeks) which shorted the length of chemo treatments. I know how hard these decisions are to make. I chose to be aggressive and it gives me peace of mind.

lisasayers · January 2009

Hi Jodie

I have IDC and it was only 6 mm, nodes clear and my oncotype was 19. I had a bilateral mastecomy with immediate recon in October and I'm getting chemo now...just had my third of 4 cycles yesterday and I will tell you it is very doable. Of course none of us want to do it...but after discussing it with my doc, that is what I felt I needed to do. I will have my implant surgery in March.

I have two businesses and have been working right through chemo. One of my businesses is teaching fitness classes - Zumba. And it has really helped keep the side effects at bay!

I can understand your concern with your profession. My daughter is 18 and is going into musical theater...and she is bald. She has alopecia. We got her some really good wigs and she also wears cute hats and scarves. It hasn't hurt her at all. In fact, depending on the character...she can be whatever they are looking for...blonde, brunette, red head! She taught me a lot...so losing my hair wasn't as devasting. I teach all my classes bald.....and my students love it!

Just do what is best for YOU! Take the time to reserach and make sure it feels right in your heart!

Best wishes

roseg · January 2009

I have to agree that at 33 you probably should do chemothearpy. Your youthful body would be a lovely place for stray cancer cells to set-up shop and grow.

I know that acting jobs have lead time for coming up on them but why two years? In your situation unless you're doing something where you're upside down and a wig wouldn't stay I think I'd switch to the wig almost immediately. Nobody needs to know and everybody will think you've got great hair.

Anonymous · January 2009

Research, research, research! Find out the exact chemo agents that your oncologist is recommending, then thoroughly research their actual effectiveness in situations similar to yours, and their side effects. Check to see what their actual 10 year outcomes are, or if the agents even have 10 year followups for large numbers of people with a similar diagnosis (chances are they don't).

Tamoxifen has a long track record of being effective and it too is a systemic treatment that deals with stray cancer cells wherever they may be.

Yes, at 33 you have a lot of years ahead of you, but that also means that if you get one of the really nasty side effects, like heart damage, or another cancer (some chemotherapies can actually cause cancers like leukemia), you will have a lot of years to live with the damage and side effects.

No matter which course of action you decide is the right one for you, the odds are very much in your favor that the cancer will not return.

Which will you have an harder time dealing with...the regrets that come with not doing chemo and having the cancer return, or doing chemo and having the cancer return in spite of it, because doing chemo is not a guarantee? For me, the answer was that I would not be able to handle the cancer returning in spite of chemo, but no one else's answer matters, only yours.

You are the only one who can make this very difficult and individual decision. No matter which decision you make, you will be the one living with the long and short term consequences of it.

jbentley · January 2009

Thank you all so much for responding. It does help to hear all your stories.

Of course I don't want my cancer to recur, but what my med onc told me was that chemo only reduces your risk of recurring by 30-40%. I currently have a 16% recurrence rate, so that really only drops it to 11%. To me that doesn't seem like a big enough difference to put my body and my mind through chemo. But I also can't quite yet wrap my brain around what that means.

I know I am young and have many years ahead of me which is why my doctor is concerned as well. I am going for a second opinion on Tuesday.

Lisa, tell your daughter I wish her the best of luck on her musical theater path! I am a musical theater performer as well and I started my own business called The Savvy Actor where I coach actors on the business side of their careers. If she moves to NYC I would be happy to offer her some advice! Good luck with the rest of your treatments.

And Rose, I said I felt chemo would put me out of my business for 2 years because I am actually known in the biz for my long red curly hair and it would take awhile for it to grow back.

auriga · January 2009

Hi Jodie,

I posted a question just like yours about a month ago. My tumor was 1.7 stage 1, grade 2. My onc was sure my score would come back low. It came back as a 26 with a 17% recurrence which would drop to 12% with chemo. I was unsure if a 5% reduction was worth it or not.

One of the women who answered my post told me her husband said that 17% is the same thing as a 1 in 5.5 chance. That scared me. a 1 in 5.5 chance sounded worse to me than 17%. Her answer convinced me to start chemo.

I am on day 12 of my first treatment and have had no side effects whatsoever. I am doing 4 rounds of TC. I know I will most likely not continue feeling this good as the treatments progress, but so far I feel great.

Perhaps you can find a wig that closely resembles your hair as it is now. That's what I did, and I was told no one would be able to tell I even had on a wig. So far, I still have my hair and haven't needed it yet.

Good luck to you!

Sukiann · January 2009

I can totally understand where you are coming from. I was told that I would most definitely have to have chemo (this was by my surgeon - from experience following patients with my type of cancer and my age) I am so far stage 1, grade 2 ER+/PR-, don't know about HER2 yet score is 2+ (waiting for FISH results). So you say why chemo? I think the second opinion is a must in this case JBently. You just don't know what the best thing to do is because we can't predict the future. Let us know what you decide. It helps so much to know you all have been through this and we can lean on you for support and your wisdom.

bee5467 · January 2009

jbently - You can get extraordinary wigs now, you know . . . Mine looked way better than my real hair. I think alot of my friend and family are kinda disappointed that mine is back.

There is no reason why it should take 2 years. Really, it's only about a 2 month period that your face is not fabulous, but then I didn't get false eyelashes. Wishing you all the best!

scarp · January 2009

Jodie - I was in the same boat...all along I was told lumpectomy /radiation /tamofin. After surgery the surgeon told us that I would most likely need chemo and I almost fell over. Why the change? It was age, 46 and premenopause and my tumor was 1.2 cm. My onctoype came back at a 15. It really put me in a place for me to decide. I choose chemo because I couldn't live with the what ifs.

I am currently on CMF and have little to no side effects with it. I do get tired daily and a little queazy for a day or 2 after treatment. I have not lost much hair. About 15 or so per day. Fortunately I have thick hair and it is not noticable at all. It is a little limper than normal but thats ok cuz its still there. It is something you could look inot if the onc agrees with it. There is a tread on CMF under Help Me get Thru Treatment. I have been thru 4 of the 8 treatments. It is once every three weeks. I have good veins and it is not noticable that I get injections.

Best of luck to you!

Was told no chemo until Oncotype came back 25.

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