I want to make the right decisions

Terricka

Hi!

After being diagnosed on 10/9/2020 at age 33. I've had all the test done (mri,biopsy, genetic).They say I have IDC, Both hormone positive 95% on both. Before surgery my MRI showed no involvement. Well I just had surgery 11/20/2020 BMX, the findings were 1.5cm IDC with a lot of IDCS and with 14 nodes removed/2 were positive.

I will see the MO again in December to discuss treatment plan. Im afraid of what that treatment plan is. I'm so afraid of chemotherapy.

I guess my questions are what should I ask my MO? What answers should I be receiving at the visit. What test do I need to ask about for the likelihood of it coming back?

Salamandra

Aww, I'm so sorry you're dealing with all of this. But so glad it was found now!

They should run the oncotype test on your tumors. That helps determine the benefit of chemo. Nodes does not automatically mean chemo now, though it does increase the chances. Some science is showing that for many higher risk women (you being younger with positive nodes would almost certainly fall into that) benefit as much from ovarian and estrogen suppression as from chemo - though that is for sure no picnic either, and much longer term.

This part of waiting for answers is so so hard. Hang in there. Consider setting up a second opinion, with a designated cancer center if your first doctor isn't part of one. It can't hurt to have.

Good luck!! These boards are a wonderful source of support.

Spookiesmom

True, chemo isn’t fun or easy. Your MO has a whole pharmacy to help you through it. I really suggest you get a port put in. Makes it Easier on your veins and for any blood draws. Look into cold caps to help against hair loss.

Some are able to work while doing chemo. Think it depends when you get it. Friday then he weekend to lay low if necessary.

hnsquared

Terricka....sorry you find yourself part of this club where no one wants to be a member. I was diagnosed 2/20/20 and at my first appt with a breast surgeon she felt a suspicious lymph node and biopsied it on the spot...yep, cancer. We moved from doing surgery first to chemo first. I was terrified to do chemo and didn’t want to lose my hair😢. I don’t know what the plan will be for you but I wanted to tell you that although chemo wasn’t fun it was doable. I did 16 infusions AC-T over 20 weeks. I did lose my hair, brows, lashes and that part sucked I won’t lie. I worked through chemo and as spookiesmom said there are medications that help with side effects. I didn’t have nausea snd never got sick. I got fatigued and felt run down but I got through it. I know everyone is different but lots of women get through chemo with less issues than they expected.

I hope you don’t need chemo but if you do I wanted you to know that you can do this. Sending you big hugs

WC3

Hi Terricka:

Sorry you have had to join us.

Do you know if your cancer is HER2 negative or HER2 positive? If your cancer is HER2 negative then depending on your oncotype or mammaprint score, you might not need chemotherapy. But if you do, most people her find it to be more manageable than they anticipated.

Terricka

HER 2 negative

illimae

33 yes old, damn.... I’m sorry.

Chemo is tough but not like it used to be. I was freaked out at first too by what I remembered from older TV and movies but I actually did my 1st 5k during chemo, thanks to the steroids, lol.

I think you’ll do just fine but feel free to ask for a dose reduction or alternate chemo drug, if side effects become too much. (Chemo builds up in your body, so it’s usually harder near the end of treatment, just FYI) Good luck!

2019whatayear

How are you doing? Did they do the Oncotype test? Have you seen an oncologist? Did they offer you genetic testing 33 is young for BC and can be sign that you have a genetic mutation.

Hope you are doing well.

Also if you are looking for support as a young patient- this foundation provides support, advocacy and education to young breast cancer patients-

https://www.tigerlilyfoundation.org/

Terricka

Hi! I will see the oncologist next week. I was scheduled for this week, but genetic testing after the surgery wasnt back yet. Yes, my genetic testing was negative.

2019whatayear

Okay so you had genetic testing to see if you had an inherited mutation and that came back negative and now you have an appointment with your oncologist next week to find out the Oncotype test result?

Do you happen to know the grade of the cancer? If it is 3 it would be pretty likely that the grade plus the 2 nodes will mean chemo.

If you have to have chemo, you'll be OK, it won't be great but there is lots of support here and there will be lots of support from the medical center. Chemo nurses are the best.

- Will I need chemo

What kind? How soon? Do I need a port? Will I be getting scans before the chemo begins? What are the benefits to me getting chemo? Will I need to take tamoxifen and/ do ovulation suppression? What about future fertility? --

If you need to work during chemo make sure that your oncologist has a clear understand that you will be working during treatment and discuss how that will work.

Maybe even ask how much experience the oncologist has with young BC patients.

Ask if you will be able to have anyone with you for chemo .

Ask if you are going to need to have radiation since two nodes were positive.

I hope you have a good appointment!

Terricka

The biopsy results were Grade 1. However, I dont know if that changed after surgery or not. I'm hoping for the best.

Thank you so much for responding!

2019whatayear

:-) I hope it stayed Grade 1 that would be a good sign!

Dres123

as others mentioned, push for an oncotype test if appropriate. Ask your surgeon for a copy of your surgery report. What does it say about margins? Ask your doctor about it (and/or ask us)!

Also, as an anecdote, my wife is 38 and we were going through fertility decisions. My advice to you is to get all of your care under one hospital. It is much easier to coordinate care, especially with issues on fertility for young women

Feel free to send me a direct message if you have specific questions. It’s hard to find a lot of resources for young women with BC

We wish you all the best—you can beat this

ShetlandPony

There is a forum here called Young With Breast Cancer

https://community.breastcancer.org/forum/27

ShetlandPony

“Oncotype make available to MOs the RSPC (Recurrence Score Pathology Clinical) computer program, which takes an Oncotype score and refines the recurrence risk even further by incorporating the patient's age, tumor size and tumor grade.“ A quote from a very smart BCO member called Beesie. Also make sure the oncologist is familiar with the data from the TAILORx study, which refined recommendations for younger vs older bc patients, even with the same Oncotype score.

I recommend getting a second opinion especially when there is something not typical, such as being in your 30s. You want an expert cancer center with a team that is up on the latest and has experience with treating younger patients.

In Georgia, here is a good place for a second opinion (maybe you are there already):

Winship Cancer Institute
Emory University
Atlanta, Georgia
Comprehensive Cancer Center

Others not too far: Mayo Clinic Cancer Center in Florida, and O'Neal comprehensive Cancer Center at UAB in Alabama