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Diagnosed at 22

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cleocat14
cleocat14 Member Posts: 2

Hi all,

I wanted to post and introduce myself to the forum. I was diagnosed on August 4th, 2020 with stage one IDC. I was 21 when I found the lump, 22 when I had the biopsy and was diagnosed. No family history of breast cancer, no genetic abnormalities. I am ER+, PR+, HER2-, grade 2. Lumpectomy was on Sept 29th, and 1 out of 5 sentinel lymph nodes showed 2 microscopic spots (largest was .4mm) of cells that had not gone outside of the lymph node yet. I am going to have around 4 and a half weeks of radiation to the breast and endocrine therapy for the next 5-10 years. The tricky part is that my oncologist sent my tumor for the oncotype test, and I got a score of 14, which is in the "grey" area for whether or not to do chemotherapy. My oncologist is pushing me to do chemo, but I really don't know if it is worth it to go through something like that and it lower my chance of recurrence only by a couple of points. She says that because of my young age, we should treat it as aggressively as possible, hence the chemo. I'm just so tired of treatment already, and maybe I'm being a little cynical, but I have a feeling that this could come back whether or not I do the chemo, and if I do the chemo now, then I'm losing months of my life to being sick, and all of these nasty side effects that could affect me for the rest of my life. I don't know what to do. I go back and forth - I want to fight this, but I also really do not want to have to go through chemo if it is going to do more harm than good. I'm just really sad tonight and don't know what to do. I'm getting a second opinion just to see what another oncologist says about it.

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited October 2020
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    I agree with your onc that you need to treat aggressively because you are so young. It sucks, but give it your best shot now, and hopefully you will not have to deal with it again later with mets. We want you to have a long, happy life ahead! Please do get a second opinion at an NCCN center where they will likely have more expertise and experience treating young bc patients. See the map at the link below. Did your onc show you the Oncotype refinement where they can plug in age to see how that changes your chemo benefit? Have you discussed the TAILORx trial? This is totally unfair, and you are smack in the middle of it. Things will get better.

    https://www.nccn.org/members/network.aspx

  • renee17
    renee17 Member Posts: 1
    edited October 2020
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    Hi Cleocat14,

    I’m not sure if my opinion really matters. I’m 25 years old and am waiting to have my biopsy next Friday for a 7 mm lump that’s caused consistent bloody discharge for about 6 weeks now. If I were you, and if God forbid, I got diagnosed with breast cancer next month, I would do the chemo. Only because we’re in our 20s and though it may be hard now, it may be worth the chance to lower our chances of reoccurrence later. I would definitely get a second opinion. Something I plan to do as well, mostly because I personally feel like I’ve been given the run around due to my age and ethnicity. However, it is truly up to you. We all just advocate for ourselves and do what is best for our own bodies. Good luck.

  • WC3
    WC3 Member Posts: 658
    edited October 2020
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    Hi Cleocat14:

    I saw your other post. I'm 40 unfortunately but at 22 those few months of chemo will be no time at all in the big scheme of things and you will have plenty of time to have the fun you were looking forward to. I see you just graduated. Imagine you thought you were going to graduate at the end of Spring and suddenly you realized you were short a course and have to take it in the summer. That is chemo therapy. Just a few short months. I think I am going to agree with your MO. Be aggressive in your treatment now so you do not regret not having been so later.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited October 2020
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    I was scared of chemo too but honestly it wasn’t nearly as bad as I had imagined. It’s over in no time and you can feel assured you did everything possible. you got this!

  • summerangel
    summerangel Member Posts: 182
    edited October 2020
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    My opinion is that you should weigh the pros and cons and decide for yourself. If you're a statistics person those few points of risk might not be worth the risk of permanent side effects, but then they just might. Yes, many doctors want to be super-aggressive with young patients, and you're VERY young, but I have two daughters in your age range and I wouldn't tell my daughter to throw everything at the cancer without weighing the possible benefits vs risks first.

  • minustwo
    minustwo Member Posts: 13,080
    edited October 2020
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    Interesting to see the different opinion. I did throw everything at my cancer, and would again. And 99% of the time would recommend the same for my DILs, nieces, etc.

  • jhl
    jhl Member Posts: 174
    edited October 2020
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    I would also do all recommended treatment after I received a second opinion. If I were in your shoes, my biggest question would be about my fertility. Be sure you are comfortable with the answer. You are so very young to have to think about your future. Have you thought about where you want to go in life? Do you have a special someone? How involved are you with family.

    I wish you all the best!

  • cleocat14
    cleocat14 Member Posts: 2
    edited October 2020
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    I really want children, and have been with my boyfriend for 2 years. We were planning on getting married and having kids once we were older. This has thrown a huge curveball at me. I don't want to have kids and have to go through this again in front of them and god forbid die while they are still young. I don't know. This is all really difficult.

  • obsolete
    obsolete Member Posts: 333
    edited October 2020
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    CleoCat, you're in very good company here on this rough ride in decision making. You could also consult with a breast pathologist to discuss tumor molecular phenotype, mitosis, ER/PR %, any LVI, etc to thoroughly review characteristics. Also consider circulating tumor cell count with liquid biopsy testing. It's best that every patient continue advocating for herself in assessing how much risk she's willing to take. You are your own #1 Priority. Best wishes & hugs to this special young lady on staying true to het authentic self.

  • summerangel
    summerangel Member Posts: 182
    edited October 2020
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    I agree that it would be a good idea to get a second (and maybe third) opinion. Doctors are open to second opinions, and should be willing to send your medical information to the second opinion provider. If you're near an NCI - designated center, even better: https://www.cancer.gov/research/infrastructure/can...


  • kathabus
    kathabus Member Posts: 45
    edited October 2020
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    Hi--I had a low oncotype score and had nodal involvement. My choices from my oncologist was chemo.....OR an oopherectomy (removal of ovaries) with an aromatase inhibitor. I did the latter, and that was her preference for me. With that being said, I was 43 and completely done having children. If you're not wanting an oopherectomy, I would guess chemo is the obvious route to deal with the nodal involvement.

    One last thought...you could maybe explore ovary suppression with an AI, since ovary suppression is temporary? Good to know all of your options and discuss with your oncologist.

    Lots of encouraging posts above for you. Wishing you well!

  • leesad
    leesad Member Posts: 100
    edited October 2020
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    Cleocat- I’m so very sorry about your diagnosis. My Oncotype score was a 3. They found 2 sentinel nodes with micromets (less than 2 mm per node). I had an axillary node dissection and they found two fully positive nodes (largest metastatic deposit 4 mm). I had the chemo with the 4 involved nodes even though two just had the micromets. I wanted to be as aggressive as possible. I was 49 years old at diagnosis. At 22, get a couple of opinions but I’d say throw all you can at it. I fell into some grey areas and I choose the aggressive route every time. No regrets.
  • minustwo
    minustwo Member Posts: 13,080
    edited October 2020
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    Throwing out another thought. What about considering freezing your eggs? That way what ever happens in the future, you still have the possibility of having children.

    And yes - I would get a second AND a third opinion - at least one at an NCI cancer center.

  • hapa
    hapa Member Posts: 613
    edited October 2020
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    Man, BC at 22 years old? That's tough, I'm sorry you're going through this. I would get a second opinion from an NCI center if at all possible. Maybe even a third opinion from another NCI center. I haven't looked at the data from the Oncotype trials, but I do know that women your age with breast cancer are rare, and so I would assume there were very few of them in the oncotype trials. So I'm not sure I'd rely on an oncotype score at your age to be predictive of anything. This probably doesn't make you feel any better.

    I think at your age though, most oncologists are going to recommend aggressive treatment, and I would question any oncologist who said NOT to do chemo.

    I also want to reiterate something else people have been saying on this thread: chemo was not that bad. Honestly, for me it was not that big of a deal. My hair fell out and even that wasn't so bad. I bought a bunch of caps and beanies and they looked pretty cute on me. I only got nauseous once, after the first round I knew what to expect and could preempt any nasty side effects with the drugs my MO prescribed. I worked, I worked out, I went hiking and occasionally threw on a wig and went shopping. It's not like you see in the movies.

    I understand your concern about fertility though. My MO was going to suppress my ovaries during chemo to try to preserve their function until I told him I didn't care about my fertility. So there are things they can do and at your age your fertility will probably come back, but definitely ask your MO about it. My second opinion MO suggested doing a round of egg retrieval but again I wasn't interested, but that is also an option.

    Good luck with your decision.

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 173
    edited October 2020
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    Cleo sending thoughts and prayers your way. I’m here if you need someone to talk to. Wishing you the best going forward. Hang in there.

  • lovehard
    lovehard Member Posts: 4
    edited November 2020
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    Chemo leaves your body forever changed. I honestly regret doing chemotherapy, but that’s me. The best advice I can offer you is to do your research, not just the benefits of chemo but the side effects too. In the end, do what you think is best for you and not what others want you to do. You have to live each day with whatever choice you make. The journey is one no one expects to take, but only you can navigate. I wish you the best!

  • keepfaith
    keepfaith Member Posts: 3
    edited November 2020
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    @Cleocat, I am going through a similar situation at 21. Had lumpectomy in September, now radiation, and then Tamoxifen and Luperon for 5-10 yrs. I think the age of diagnosis is what makes it difficult, not that it is easy at any age, but the challenges are different.

    Sending good thoughts

  • rebzamy
    rebzamy Member Posts: 49
    edited November 2020
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    Hi Cleocat,

    I was in my 30s when i was diagnosed with grade 3 and HER2+ IDC (invasive ductal carcinoma) with widespread DCIS and a 5cm lump in my breast and a huge lump in my armpit with many lymph nodes involved. I actually wasn't given a choice of whether or not to do chemo, but I can honestly say that it was all doable. I don't believe I have any long-term side effects from the chemo, although it does affect your fertility and so if you do go for chemo, definitely freeze eggs beforehand, if you can. I didn't have time to do this as I needed to start treatment immediately due to the aggressiveness of it. The other side effects are from the surgery, loss of feeling, tenderless, a few aches and pains, but nothing I can't handle and just put behind me. I can't believe what I've been through, but am still here now nearly 14 years down the line. You can do this, whatever you choose in the end, and maybe seeking a second or third opinion is the best thing in this case. Good luck with it all.

  • cure-ious
    cure-ious Member Posts: 2,736
    edited November 2020
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    Cleocat,

    I am wondering what other advice you will be getting. If it were me, I'd be inclined to skip the chemo, not because of concerns about recovering from it but because of not being sure its adding much- however it depends on how strongly ER-positive and PR-positive the cancer is. In young people it may not be strongly estrogen-dependent, in which case I'd go through the chemo part too. Make sure you get a CDK4,6 inhibitor with your endocrine therapy, that is more likely to be critical than the chemo... Good luck!

  • msphil
    msphil Member Posts: 185
    edited January 2021
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    hello sweetie i was 42 when found my lump in shower all while planning our 2nd marriages. Onc suggested Lmast even though i was thinking lumpectomy to save my breast going into new marriage. Had biopsy and 2nd opinion and agreed mast best for me. So fiance at time said please go with mast so we can have many yrs together. Well 27yrs later Praise God im doing great reconstruction didnt work out for me body rejected expander implant as foreign object rushed to hospital 103 temp it eas removed just wear prothesis in bras bathing suits cant even tell. This is my Inspirational story to help others. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married then 7wks rads and tamoxifen. Hope and Positive thoughts got me thru hope this helps.

  • pt1234
    pt1234 Member Posts: 9
    edited January 2021
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    I also had surgery in my left breast . Tumor size 4.2 cms and they removed 5 sentinel lymph nodes of which one of them came back as isolated cells of 40 with size .15mm . I asked my surgeon , she said it’s not needed to ALND lymph nodes . Should I worry . I started chemo TC and first cycle compleyed

  • minustwo
    minustwo Member Posts: 13,080
    edited January 2021
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    pt1234 - what type of surgery? Mastectomy? Lumpectomy? If a lumpectomy you probably have radiation in your future. What was your diagnosis? ER/PR positive or negative? HER2 positive of not? What was the final pathology? What grade? What was the staging?

    If you go to "my profile" you can add your diagnosis and treatment to date so we can better answer your questions.

  • pt1234
    pt1234 Member Posts: 9
    edited January 2021
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    Its mastectomy. I have two different radiation oncologist and both said no radiation needed. Its ER / PR + and HER2 - (NEGATIVE ) and shows 95% in pathology report.

    As per pathology it says grade 2. No Lympho vascular involvement. Margins are clear . Posterior side towards chest side 9mm and rest its around 2 - 3 cms. Lymph node 1/5 with isolated cells.

    Chemo started with TC of 4 cycles.

    staging initially before surgery , breast surgeon said as stage 1b and after surgery its stage 1 a. Whereas pathologist saying stage 2A because of size. when i asked same to surgeon she mentioned that they take tumor grade, tumor biomarkers like ER and PR and not the size .

    I updated details in profile.