Waiting for Mammoprint and going to dark places

jkcmdc

Hi all,

I’m new here. I’m 47 and thought it was in great health (active Crossfitter, healthy eater etc). Although I have a family history of BC, my genetic testing came back 100% negative.

Last month I had a lumpectomy because of a DCIS diagnosis. The doctor told me the pathology usually comes back with that same original diagnosis —but in my case it showed a 3mm invasive component. So then I got a lymph node taken out and everyone on my team (while awaiting results) assured me this was just standard procedure and it would be less than a 5% likelihood of coming back with a lymph node involved. Of course, it came back with 1 positive lymph node.

SO now I’m awaiting the results of the Mammaprint test that will tell me either low risk (no chemo, just stick with my original radiation plan) or high risk (add chemo). I’m PARALYZED with fear that it’s going to come back high risk and my life is going to completely be turned upside down for the next 6 months. I don’t sleep at night because all I do is cry, worry and read these boards and feel I’m doomed.

Anyone going through something similar or could offer encouragement or mammaprint results with a similar tumor? Stage 1B, original tumor grade 2, size 3mm, 1 node involved that was 6mm, ER/PR+ HER- . Just want to know the likelihood I’m going to have to get chemo.

Thankymoy

Moderators

Hi jkcmdc and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, and for the rollercoaster you're experiencing, but we're really glad you've found us. Our community is a wonderful source of information, advice, and support -- we're all here for you!

We know it's a scary time and that the possibility of having to endure chemo is daunting -- however, there are many, many members here who will tell you that if that is the recommended path for you, it's not nearly as bad as they had anticipated. There are lots of tips on these boards to help manage all kinds of side effects, and lots of encouraging members to help you through.

We're sending positive thoughts for a low mammaprint score, but just know that no matter what, we're here to support you!

--The Mods

Spoonie77

Waiting is the hardest part. I'm so sorry you have now joined the breast cancer family, but I'm glad you are here on the forums.

I can't advise you as to what your Mammoprint will reveal, but I do know for me I had the Mammoprint as a second opinion based on my Oncotype report. It was helpful for me to have two views on the decision on Chemo, because I am 41 and most of my results were borderline in the "grey" area where it was my choice.

Has your team told you when you could expect your Mammoprint results back? It helped me to have a timeline to endure the waiting.

Also, when you get your results back, don't hesitate to ask for a 2nd opinion from another dr or as far as getting the Oncotype run. Those are your rights. This is your care and you should have all the info before you make a final decision one way or the other. I think that was the most important thing for me, knowing that I'd done my homework and knowing that if I end up recurring some day I could live with the choices I made regarding my treatment without regret.

Fingers crossed for you that you will be low risk and can skip chemo. Hang in there. You are not alone.

Pepper44

I’m sorry you’re going through this and I understand about the mind going to dark places. My comments may not be helpful for you because I don’t have answers but I’m dealing with similar and making some decisions right now and it’s agonizing.

My tumor was small and no positive nodes so chemo was not immediately in my mind as a given, but I had the oncotype test done and it came back with a score that puts me in a grey zone for chemo benefit. I’ve had 2 drs tell me it’s really up to me. I was just hoping for either a ‘yes’ you need chemo or a ‘no’ there is not value in chemo for you. But now I have to decide and that’s feeling like more weight on my shoulders. I’m not sure how the mammaprint score works but I found it helpful to learn about the test I was having so that I could interpret the report when I got it back.

In the meantime all I can say is try to distract yourself with some good shows on Netflix! Take one day at a time and know that there are many good resources to get us through this.

edj3

Hi--just back from my first post-op appointment with my MO and I too am now waiting for the MammoPrint. So let's wait together, makes it (slightly) less nerve-wracking, right?

jkcmdc

That's a deal. I have 2 weeks to wait, what about you? It looks like My mind works in very dark and dismal ways and because I had a node involved (just 1) I feel like I'm doomed to get a high risk score.

MountainMia

A lot of us have grey-area cases because of a mix of characteristics, but no one has exactly your same situation. Waiting really is terrible, regardless of what part of the process you're in. Try to keep focus on what you know instead of what you don't know. You know you are sturdy and fit. You know you take good care of yourself and make good decisions about your body. You know you have a medical team that is being cautious in the right sense, waiting for more information. You know that it will be a couple of weeks until you get the other info back. What else do you know about TODAY that you can focus on? What needs to be done now? Try to pay attention to that, whether it's work stuff or household stuff or getting to the gym. Tomorrow, you can focus on tomorrow.

I wish you all the best.

jkcmdc

Thanks for your words. I think the main reason I'm so fearful is that literally EVERY step of the way, a "predicted" result has come back bad news for me. "Oh it's just DCIS"..."Oh wait no there's a 3mm invasion" "Oh you probably won't have lymph nodes involved" "Oh actually yes you have 1"....So how can I expect that I will get good news with the Mammaprint result? It seems foolish to get my hopes up and that I need to prepare for the worst. Wow, I am such a debbie downer and I'm sorry, and I want to let you know how much I appreciate your hopeful words for me Thank you.

AliceBastable

I highly recommend doing something fun during the waiting time. It will distract you, and then if you have to go through icky stuff, you'll have cool memories to look back on. It's especially good to do this if you have a partner and/ or children, so they don't see you as just a worrier. My hubby and I did a lot of walking in parks after appointments and tests, then longer day trips and short multi-day ones. I had three surgeries during that time, plus almost seven weeks of radiation. But you know what? I remember the fun outings best at this point.

edj3

jkcmdc--yup, will be a couple of weeks. I'm not a patient woman in the best of times, and I sort of doubt that's going to change as a result of being part of the BC club.

I agree w/ AliceBastable. Can you find an activity you thoroughly enjoy and use that as a distracter? Maybe it's NetFlix, for me it's working out and also reading and now that I'm cleared to resume (sensible) workouts, running and lifting.

So what do you like to do? Are you in the US and if so, do you have any fun activities for the Memorial holiday weekend?

And just in case a cat picture might be a nice distraction, here's one of my crazy cats:

gb2115

My stats I think are similar sort of to yours....some differences but I was stage 2 with a positive node. My tumor was 1.2 cm with 2.1 mm in the node. Grade 2. I was low risk mammaprint and went to radiation after surgery. They radiated the node areas.