waiting for oncotype test results

alcoolal

Hi all,

I've been lurking for a while, and this is my first post. I was diagnosed mid december and had a lumpectomy a week later. I am er/pr+, stage 1 grade 2, 1.6cm and am now waiting for the oncotype to come back. I wish I could say that I have been brave and positive, but unfortunately, quite the opposite! I've managed to hold it together for my 15 year old daughter, but when she is not around, I have done a lot of crying and panicking! I am very nervous about the results; on the one hand, I dread the idea of chemo, on the other hand, I'm terrified there are lurking cells or that I could have a recurrence. I know I should be counting my lucky stars that I am only stage one, but I am still in the midst of a full blown pity party!

Anyone here have similar results to me? If so, would you mind sharing your outcomes? Thanks for listening!

Moderators

Hi alcoolal,

We're so sorry to hear of your diagnosis, and that you're consumed with worry. It's a very common and normal reaction to diagnosis, but your diagnosis is a very treatable one!

You may want to chat with others in the Stage I forum, where you're likely to find others with a similar diagnosis and you can discuss with them how they've handled getting diagnosed, managing the emotions, and navigating treatment.

We hope this helps and we're looking forward to hearing more from you and supporting you throughout your treatment!

--The Mods

MTwoman

Alcoolal, it is very overwhelming in the beginning when you're still taking it all in and making decisions. Sometimes, even after all these years, something will still sneak up and feel overwhelming to me. Give yourself a bit of a break. You are holding it together when your daughter is around, and you are allowed to lose it a bit when she's not. Believe me, this stage won't last forever. And fearing both the treatment and NOT doing the treatment is also not uncommon. You are now connected to women who have been in your situation and understand. I'm glad you've decided to speak up!

Give yourself some time to get adjusted and do what you can to help calm yourself. Taking warm baths, long walks (or cross country skiing where I am right now), listening to music, or distracting yourself with a good movie/book can help. The waiting part of all of this can be the hardest on the nerves as once you have your final diagnosis details, you can make decisions and move forward with your treatment. Right now you are in limbo and it is an extremely uncomfortable place. Hugs to you!

Luckynumber47

The best news in your diagnosis is that you are ER/PR+. The drugs for that, whether it's tamoxifen or an AI are very powerful and they are your best bet for wiping out any stray cells.

Your diagnosis sounds a lot like mine. My dr called it cancer with a little c, a bump in the road, a minor inconvience. She told me repeatedly that I will be fine and I believe her. It's so scary to get a cancer diagnosis but as you get further along in your treatment you will realize that you can handle it and come out on top.

When you get your Oncotype test back it will give you your percentage of the cancer coming back. Ignore that percentage and focus on the inverse - the % that it won't come back. Mine was 89% that it won't come back and those are numbers I can live with

alcoolal

Thank you both for your kind words. Hugs! x

edwards750

You definitely came to the right place for your cheerleaders. We have all been there, done that and we know all about the fear factor too. My BS told me I had a wimpy cancer. Stage 1b, Grade 1. I had a lumpectomy and 33 Rads treatments and took Tamoxifen for 5 years. My Oncotype score was 11. 8% chance of recurrence. My 5th year anniversary was this past August. It is a milestone.

I understand why you are keeping your emotions in check to spare your daughter. I too kept my game face on for my son. I didn't want to scare him either.

It's an emotional time for you but just remember breast cancer isn't the death sentence anymore. They have come a long way in treatments and research.

Maybe you won't have to have chemo. My Oncotype score meant I dodged chemo and instead had radiation. But if you do there are ladies on this website who can help you through the process. It is doable. You are stronger than you think.

We are all pulling for you. Keep us posted and keep the faith.

Diane

Luckynumber47

Hi alcoolal,

Still thinking about you and wondering how things are going. When do you expect the oncotype results?

I expect by now you've read lots of newly diagnosed stories and realize everyone goes through emotional trauma. For me it was the loss of control of my life that really upset me. It's still a daily challenge although not nearly as overwhelming as it was early on

I keep a journal. It's a great way for me to identify and understand the feelings.

Chemo is a very personal decision and hard to know what to do when you're borderline. I knew from the beginning I didn't want chemo - afraid of the side effects. Luckily my oncotype agreed with me. (Well, almost, it was 18 but my MO didn't suggest chemo just letrozole

Keep us posted on how things are going

Lucky

heartfull

luckynumber47....good advice! I am awaiting my oncotype results currently...they are delayed. Fear creeps in at times, but great to focus on the positives as much as possible!

PattyHorner54

Newbie here, waiting on my oncotypescore. Have my first meeting with Radiologist this tue, then oncologist on friday. I dont think either will have results yet. I have found out this cancer for me has been waiting waiting and then a bit more waiting. I do believe I'm be taught patience. I instantly go to worst case scenario. Going to try and break that habit

Luckynumber47

Heartfull, how is your recovery from surgery? Can you believe how far you've come already? I hope you are feeling better every day.

If your Oncotype recommends chemo, just know that you can do it! It's a short amount of time, you'll feel lousy but afterwards you'll be fine and finding your way back to normal. Do whatever it takes to kick that nasty cancer to the curb.

I'm 2 weeks away from the first anniversary of my BMX. Wow! What a crazy, horrible, wonderful year.

heartfull

Hi Luckynumber47! Thank you so much for your message! I am at 4 weeks out and feeling really well! One more TE fill next week and then ready to schedule the surgery (after we get the oncotype score).

So, so happy to hear that you are almost one year out!! That is an accomplishment that few people can truly understand! Thank you for taking the time to cheer myself and others on! I hope you kick up your heels and celebrate being one year done! Thank you hugs and smiles!!

Jackiewg

My cancer was 1.5cm DCIS, diagnosed at STAGE 1A. nothing in lymph nodes. Had lumpectomy in March. I was just frantic about ONCO test. My Score came back at 13. Had a phone call from my medical oncologist, telling me the score and rattling off every place I could still possibly get cancer, I think she was pushing chemo. SCARED ME TO DEATH. She said anyone with a score more than 10 ran a huge risk of developing cancers in other areas.

I looked up the ONCO scoring chart on this site, found that a score of 18 and below Chemo isn't recommended bcz results would not be that much of an improvement to go through chemo and all the side effects . I'm doing radiation now. I'm also looking for a NEW medical Oncologist. She is never positive, I know I can find someone better suited for me. Best advice while waiting, try to get outside more. Being in the house always made me feel trapped...,

MTwoman

jackiewg, I'm a bit confused as to your diagnosis. DCIS, pure DCIS with no microinvasion or IDC component, is always stage 0 and chemo is never an option. Do you perhaps have IDC AND DCIS?

Diagnosis aside, getting a second opinion is always an option. If you don't "click" with someone on your team, it will be difficult to work with them over the years of treatment and follow up. Good luck finding someone who gives you correct information and works with you to find the treatment that fits with your choices.