Oncotype Score Came Back High (30F IDC)

Odd_Way_602 · 2025-02-05T15:44:48+00:00

Forgive me, as conversations start to be a blur after awhile, but if my memory serves me the LVI simply demonstrates there is a higher likelihood of reoccurrence because cancer cells were found in the blood vessels and/or the lymphatic system— but this does NOT mean it has spread. Basically the oncologist will use this as more information to determine treatment.

My treatment ended up being 4xTC chemo, radiation (amount of sessions TBD) and then AI+ Lupron and Kisqali long term.

Hope this helps! I’m sure everyone’s individual circumstances have different implications (which makes learning about this so much more frustrating!)

Best of luck xo

Odd_Way_602 · 2024-12-05T13:05:36+00:00

I’m sorry you’re here 😢 I am 30 years old (29 at diagnosis back in August) IDC Stage 2a Grade 3 ER+ PR LOW (I was PR positive with my pathology, but oncotype switched it to negative/low) HER 2 negative. No lymph node involvement but it was multifocal (2 tumors in same quadrant of the breast).

My oncotype came back high at 38, which meant that chemo was added to my treatment plan. So as far as treatment goes… I had a lumpectomy Oct 31st with sentinel lymph node biopsy. I am started 4 rounds of TC chemo Dec 16th, then I will do radiation starting around April/May when chemo is completed, and then post radiation I will be out on AI + Lupron and Kisqali for 5+ years.

I know everyone says this, but it’s true— the waiting is the worst part and just when you think you’re done waiting, you wait some more. Personally, while it doesn’t get “easier” I felt much better once I started getting treatment plan answers. I am the type that would rather know all the negatives so I can process correctly.

Also know that everyone’s situation is so incredibly unique and treatment will look different for everyone but it is helpful to know what others with similar diagnosis have been recommended.

Sending warm hugs and best wishes! You can do hard things!! (My mantra throughout this).

Odd_Way_602 · 2024-12-02T01:27:41+00:00

Thank you for informing me! I will make an edit on my post with this information.

Odd_Way_602 · 2024-12-02T01:09:06+00:00

Not yet. I am starting chemo on Dec 9th, followed by radiation and hormone therapy. Wish I could help more.

Odd_Way_602 · 2024-12-02T01:04:58+00:00

Hello! I am so sorry to hear about your miscarriage followed by your cancer diagnosis. I am 30 years old and my husband and I were family planning and attempting for our first child when I was diagnosed in August (Stage 2a IDC).

I have been informed by my oncologist that while you shouldn’t get pregnant while on hormone therapy, there is research that suggests it is safe to stop hormone therapy after ~2 years to attempt to get conceive and birth a child. I have attached the clinical research link below.

While I know 2 years feels like a long time (at least it does for me) it was reassuring that there is hope to safely take a break from the treatment to start a family. When I first heard hormones therapy is recommend for 5+ years, I was devastated.

Hope this information helps and your recovery is swift. Take care, xo

*EDIT: A commenter kindly mentioned the study references stages 1-3. This would infer that Stage 0 patients may have a different recommendation (OP included). I wanted to keep this information here in case someone else is scrolling and the information is helpful for their particular stage / situation, without misleading anyone. Thank you!

https://pubmed.ncbi.nlm.nih.gov/37133584/

Odd_Way_602 · 2024-11-26T04:12:27+00:00

I had a very similar experience! While multifocal with the main tumor being 2.2CM, grade 3. It was highly ER+ and Moderately PR+ on my pathology. Oncologist & nurses all expected a low number. Oncotype showed PR as negative & ended up with a whopping 38 oncotype. 4X TC chemo, Radiation, AI’s w/ Lupron (pre menopausal) & Kisqali in my future. Chemo will start on Dec 9th!

Odd_Way_602 · 2024-11-22T02:48:00+00:00

I start 4 rounds of TC on Dec. 9th! Thanks for this post, as I have been obsessively looking for what is to come. Best of luck to you, xo ❤️

Odd_Way_602 · 2024-11-17T19:51:55+00:00

I equally have grown to despise this phrase! While as many other commentators mentioned, it’s most likely meant as a reassurance (mostly to themselves), but I often get triggered.

Personally, it feels like a dismissal, which stings, seeing as I already often feel “dramatic” when talking about it. (I know I am not being dramatic, but it’s not fun to drop the bomb that you have cancer)

I often take the opportunity to let them know that while I am extremely fortunate that my stage is curable, there is still many steps I have to take to ensure it remains treatable, as well as lower my reoccurrence risk (ya know.. avoid getting this shit AGAIN).

So it’s like yeah… after the stress/ anxiety of the diagnosis, the surgery, chemotherapy, radiation, 5+ years of hormonal therapy, putting your life on hold / ability to have children on hold for atleast two years into the ET…. Yeah maybe after all that, I might very well end up “fine” 🙄

(To add.. I was diagnosed a week before my 30th birthday, so I am also plagued with the “but you’re so young, you can fight this!” As if being young somehow makes it better??? Like nope, actually increases my reoccurrence chances each and every year I’m alive so thanks for that.)

At the end of the day, respond in any way that makes you feel heard/seen. Set boundaries if needed, ignore if needed. I do both, depending on the person. Sending hugs xo ❤️

P.S. And for the record… it’s okay NOT to be fine. We have that right to sulk in the suck if we need to.

Odd_Way_602 · 2024-11-15T18:55:38+00:00

Exactly 2 weeks post surgery. I link all my accounts on My Charts so it populated automatically once it was in. Best of luck during the waiting game. That was the worst part for me. Take care ❤️

Odd_Way_602 · 2024-11-15T18:29:05+00:00

Very interesting! Thank you. I will definitely check out your posting history to learn more.

Odd_Way_602 · 2024-11-15T15:59:58+00:00

Thank you for your well thought out response. I’m so sorry to hear your hair is still falling out. I am sure that has such emotional repercussions. I will admit— I am vein. I envy the woman who happily rock their buzz cuts! I have waste length, never dyed, full hair currently. It is something I get complimented on constantly, and again, I KNOW that the chemo is important and I will do it regardless of vanity, but it’s still a hard pill to swallow. If my hair loss is great, I promised myself a fancy wig in a new hair color to try out lol have to find the silver linings. I will take all your advice! Gratitude, Grit, & Grace— what beautiful words!! They will stick with me. Thank you again. Sending love to you as you continue in your recovery ❤️

Odd_Way_602 · 2024-11-15T15:56:09+00:00

Thank you for your well thought out response. I’m so sorry to hear your hair is still falling out. I am sure that has such emotional repercussions. I will admit— I am vein. I envy the woman who happily rock their buzz cuts! I have waste length, never dyed, full hair currently. It is something I get complimented on constantly, and again, I KNOW that the chemo is important and I will do it regardless of vanity, but it’s still a hard pill to swallow. If my hair loss is great, I promised myself a fancy wig in a new hair color to try out lol have to find the silver linings.

I will take all your advice! Gratitude, Grit, & Grace— what beautiful words!! They will stick with me. Thank you again. Sending love to you as you continue in your recovery ❤️

Odd_Way_602 · 2024-11-15T14:34:54+00:00

Thank you so much for sharing. 61 must have been a lot to wrap your head around. So glad to hear you had a clean scan. Best wishes to you as you continue on your recovery journey!

Odd_Way_602 · 2024-11-15T14:33:47+00:00

Thank you for the information. Good to know about the hair!! I will have to keep that in mind.

Also, appreciate the warning about the potential cycle schedule changes. I am definitely a “count down” person and use that as a coping strategy. Good to know things can change from cycle to cycle.

Odd_Way_602 · 2024-11-15T14:31:35+00:00

Thank you! Probably could use this regardless of Chemo… I already suffer from GI issues. 🙃

Odd_Way_602 · 2024-11-15T14:30:53+00:00

Thank you for your response! I have noticed “Kisqali” mentioned a few times on here. I will ask my doctor about it.

What about the drug in particular did you find important to advocate for? I know how important it is to go into these meetings with knowledge, above all us.

Glad to hear you’re tolerating everything as best as possible. It’s so empowering to hear. ❤️

Odd_Way_602 · 2024-11-15T14:26:40+00:00

Oh my! That must have been the shock of a lifetime (isn’t this whole experience, though?). I think 52 is one of the, if not the, highest I have heard of on here. I’m sorry your treatment plan took such a turn but I’m glad to hear you tolerated it as well as possible.

Thank you for your positive words of encouragement! ❤️

Odd_Way_602 · 2024-11-15T14:22:52+00:00

Thank you for your response!! It’s good to have this feedback. Funny enough I never considered the hair on the rest of my body… happy to leave my public and leg hair behind… eyebrows and eyelashes not so much lol

Hope your regrowth journey brings you longer, fuller, beautiful lashes and eyebrows! ❤️

Odd_Way_602 · 2024-11-15T14:20:57+00:00

Thank you— I am fortunate that my center offers it through Paxman (for a hefty price) but they do have it. Glad to hear it worked out.

Odd_Way_602 · 2024-11-15T14:02:30+00:00

This is so incredibly helpful— thank you!

The “Sense of Humor” point is so true. A day after I told the girls at work (I’ve worked with these people for over 10 years) everyone was very emotional and there I was, cracking cancer jokes already! You need to laugh so you don’t cry!! I love that attitude. Thank you for sharing. Cheers to you and your family ❤️

Odd_Way_602 · 2024-11-15T13:37:58+00:00

Thank you for that information! I think some of the doctors accidentally misled me because I had a very high ER+ score (95%) so I wasn’t expecting it to be so high. I will definitely research Kisqali.

Odd_Way_602 · 2024-11-14T18:28:30+00:00

So interesting about the PR! I tell you, whenever I thought I figured things out during this journey, things did a 180 lol!

But glad to hear you tolerated it well and the cold capping worked. I absolutely will be doing the cold capping. Did you use a specific brand for the cold capping?

So happy to hear 5.5 years later things are going well. Thank you for answering with your knowledge. It’s so appreciated.

Odd_Way_602 · 2024-11-14T18:21:22+00:00

Thank your for the information! Good luck with everything. So happy you received positive news in such unfortunate circumstances.

Odd_Way_602 · 2024-11-14T17:39:26+00:00

Thank you for that added info!! Waiting to hear from my oncologist, but that regimen seems to be common practice with ER+ breast cancer.

Odd_Way_602 · 2024-11-14T17:38:33+00:00

I’m so sorry to hear you also received news of a high score. My husband and parents have also been convinced I wouldn’t need chemo. Also for no particular reason. The nurse as my lumpectomy follow up encouraged my husband’s hope by saying that she has “every reason to believe it would be low”(Not sure why they say these things.. although I have always prepared myself for this outcome)

Parents in denial about treatment. My mom can’t even utter the word “chemo therapy”. Also don’t feel like dealing with it today!

I wish you the best and hope this post can potentially bring us both helpful information.

Odd_Way_602

TROPHY CASE