Oncotype score 23 uggggg

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CandyB328
CandyB328 Member Posts: 7
edited June 2014 in Stage I Breast Cancer

I have only found this forum about a week ago.  Jan 4 I found out I have breast cancer.  Feb 15 I had a mastectomy of my right breast. Instead of 2 tumors they found 3. My cancer was Stage 1A with neg nodes, ER+ and PR+  HER2-.  I was originally told all I needed was hormonal therapy.  Well that Oncotype score of 23 and finding that 3rd tumor and my age -41 has changed my surgeon's recommendations.  This whole thing sucks.  Oh  I did have immediate recon with a TE.  I get my first fill next Thurs.  I didn't want chemo but now I'm unsure.  My husband really doesn't want me to go thru chemo, I know it is very hard for him to see me struggle with this.  I see the MO on the 26th.  I have been on an emotional roller coaster.  I really don't know what to do. I just got married on Nov 11,2011  I have 2 children and didn't have any so I wanted to have 1 more child. I just wanted to get my life back.  I don't want to make the wrong choice.I truly believe that God has been blessing me cause this journey has been without bumps... until now.  Everything else was easy... The choice for the mastectomy because where my tumors were located and the calcification that was found to be cancer also.  Reconstruction with the TE because of my fibromyalgia my PS didn't want to do more cutting on my than needed.  But the whole chemo this is not definite to benefit me.  Most are telling me to do it.  But I also got to take my husband's concerns into consideration also.  So sorry this is so long. I really don't have anybody else to talk to that understands.This sucks!!

Comments

  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    Please, don't apologize.  We've all poured it out here at one time or another.

    I don't yet know my Oncotype result until Wednesday.  Bmx was done 2/10.  I'm just telling myself it's a 50/50 shot.  In my heart and head though I've made the decision that if it falls in the grey area that I will do it to know that I've done all that I could.  Same as I did with the Bmx, which turned out to be the BEST decision as there was multiple types and sites going on in both breasts although only the tumor in the left was known.  The other sites were with some of the cysts and with the calcification.

    Have you found a support group yet?  BCO rocks and is as good as one but there's something to be said about face-to-face interaction.

    Look, I'm not known for my tact.  Yes, your family is important but it's YOUR life and decision.  Do what is right for YOU.  This is just my two cents worth.  Not meaning to preach or tell you what to do.

    Sally

  • alexandria58
    alexandria58 Member Posts: 1,588
    edited March 2012

    Just remember this: your husband may not like the immediate effects of chemo, but he'd like losing you even less.  If you can keep the beast from recurring, you are not just doing it for yourself, but for your family.  Make your decision based on what gives you the best chance of never having to do this again.

    Thoughts and prayers for you.

    Alex

  • CandyB328
    CandyB328 Member Posts: 7
    edited March 2012

    Thanks Sally,  I have been decided to sit with the MO and listen to everything she has to say and present her with all my questions and concerns.  My surgeon keeps telling me "don't sign up for the cruise right away."  I think once I meet with her I will be more comfortable with my decisions and the same with my husband.  Well I'm praying for that.  I have found a support group yet.  I was really doing fine until this whole chemo thing and now all those feelings I had in the beginning are coming back.  I guess I will start looking for one.

  • sbaaronson
    sbaaronson Member Posts: 230
    edited March 2012

    My onco-type was 24. Though not fun, chemo is doable. I had 4 rounds of TC, every three weeks. You have to ask yourself, if I don't have chemo now and it comes back, can I live with my decision? Frankly, I found (psychologically) the radiation to be far worse. Stack the odds in your favor...

  • mommarch
    mommarch Member Posts: 584
    edited March 2012

    My Onco score was 37.  I had a lumpectomy, mammosite radiation 10 treatments, 4 rounds of AC and 12 weekly infusions of Taxol.  It was not fun but doable.  I had my chemo on Thursday and would go back to my partime job on Monday.  I work partime at a state university for my insurance and few extra $$.  I stayed away from large groups of people, did not eat at any buffets or cafeterias, used alot of hand sanitizer and disinfectant wipes on surfaces at home.  I had no infections.  I had my last chemo on Dec. 1, 2011.  Energy level is still low but leaning where my new normal is and pacing myself accordingly.  Good Luck

  • mdg
    mdg Member Posts: 3,571
    edited March 2012

    I was faced with making a decision on chemo as I was in a gray area.  My oncotype was only 17 but I had angiolymphatic invasion (meaning there was an established pathway and the cancer could have had an opportunity to travel by blood).  My son was only 4 when I was diagnosed but we were done having kids.  I weighed everything out and did TCX4.  It was not as bad as I anticipated.  Don't get me wrong..it was no cakewalk, but chemo has come a long way.  I did not have any nausea or get sick at all.  I was able to stay active and do all normal things.  I exercised 5 days a week and played with my son.  I continued getting TE fills through chemo.  I opted to use cold caps to save my hair and it worked.  So really no one knew I was going through chemo unless I told them.  I had some side effects but I look back and have no regret on doing chemo.  I have been forced into menopause.  I have not had a period since before chemo (last March) and I am on tamoxifen now.  I get some hot flashes but I am on some other medication that helps with that.  I was 45 when I was diagnosed.  Good luck with your decision.  Chemo was the HARDEST decision for me...even harder than BMX!  Hugs!

  • crking71
    crking71 Member Posts: 40
    edited March 2012

    Hey CandyB328, your story kind of sounds like mine.  I posted "Another Chemo or No Chemo Dilemma" last month because my Oncotype score was 21, also in the grey area.  It took me 3 excruciatingly difficult weeks to reach my decision, and my indecision prompted me to seek a 2nd opinion.  The 2nd MO I talked to said in my case there was no "wrong" answer, and to make my decision based on what was right for me, and what will help me "sleep at night."

    I took my personal pathology report into great consideration when making my decision.  I had a grade 2, 1.5 cm tumor.  My Ki-67 was 15%, also in the low/intermediate range.  Very important, I had no LVI identified, so there were no cancer cells detected in my bloodstream.  Node negative, clean margins.  If I had a higher Ki-67 score, LVI present, an oncotype score over 25, or some other factor that raised a red flag, or even if the MO's I talked to said, "I really think you need to do chemo" then I would have done chemo.  My first MO thought chemo might be a good option for me because I'm only 40 years old, but it would only give me a 3% added benefit in addition to the treatment I would already be doing.

    In the end, I decided against chemo, because a 3% added benefit did not seem worth it to me to turn my life upside down, which is what I feel getting chemo would be doing.  There were many factors weighing in on my decision, and this was what was best for me.  I am almost halfway done with rads, and afterwards I will be getting a hysterectomy so I can start Arimidex.

    Listen to your MO's advice, and get a 2nd opinion or more if necessary. Make sure you understand your pathology report and take that into consideration when making your decision.  But in the end, listen to your gut.  Make the choice that is best for YOU.  Hugs and good wishes! 

  • Robyn6463
    Robyn6463 Member Posts: 167
    edited March 2012

    Hey - My onco score was also in the grey area, and I opted to have chemo, 'though my husband was opposed. I started last August, finished in October, followed by rads through 12/22, and then an oopherectomy 3 weeks ago. So now, 9 months after diagnosis, I'm through with all treatments and I KNOW that I've done everything I could possibly do to get rid of this! As hard as it was, I'm glad I did it. Even though I had trouble with my port, and now I've got some LE, I'm still very glad that I made the decisions I made, and I have to say, IT WASN'T AS BAD AS I FEARED! I told myself that every step of the way. So hang in there, and good luck with whatever decision you make!

  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012
    Drum roll please.....

    The score on the Oncotype was a 12!!! Onc even pulled up the other program they use, Adjuvant, to show she'd compared them too. While it showed a 20+ score, it did show a breakdown that brought it back down to a 5-8. I do NOT need Chemo, although will be on Tamoxifen! Without the Chemo my risk is 8% of getting Breast Cancer again. With it, the risk would be 3%. Oh yeah...doing the HAPPY DANCE over here!

    This lady was on her game, had already read my file and knew quite a fewspecifics. She'd gotten her hands on the test score the day before when it hadn't yet been received by her yet.

    She asked the questions needed. However, a shocked look showed on her face when said Mom had to stop Tamoxifen due to blood clots in her lungs. I explained that I'd had the blood tests to see if I had inheirited the factors about the blood clotting and they'd been negative. See, out of Five that are important, Mom had THREE which is quite unusual. She wants me to find that information to show her at the next appt, to see which ones were the problem for her. Her concern is that if Mom's were positive and mine were negative, that some thing is off the mark and not right. Also, she has recommended to the Breast Clinic that I have Brca 1 and 2 testing because of Mine and Mom's BC, her Sister's Colon Cancer, and their Father's Prostate Cancer. I didn't realize there is a connection through the Brca2 gene about Prostate and Uterine Cancer.

    Sally

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