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No chemo, node positive

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  • lovelau
    lovelau Member Posts: 42
    edited January 2019
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    almost almost exactly the same except my sentinal nolde was 1.9mm. I have had depression for 2 years. I think from aromasin which I take in the morning. Anyone take it in evening and did that make a difference. Thank you


  • peregrinelady
    peregrinelady Member Posts: 416
    edited January 2019
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    Hi LoveLau, I, too, had depression from Tamoxifen. A magnesium supplement (Natural Calm) helped me immensely. I am now on Arimidex and take it in the morning with breakfast. I also take 5,000 IU of Vitamin D daily.
  • Cin17
    Cin17 Member Posts: 41
    edited April 2019
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    The surgeon thought my nodes looked clear but one came back with cancer. My oncologist ordered a PET scan (which I had this morning) and told me that if my Oncotype DX score was under 26 I probably wouldn't need chemo. He said that a new unpublished study shows no significant difference with chemo in scores under 26.

    Just heard back this afternoon that my score is 20. Not super low but under 26. I meet with him in two days to discuss radiation treatment and hormone therapy, and presumably go over the PET scan results.

  • pebblesv
    pebblesv Member Posts: 486
    edited April 2019
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    Cin17 - I had 2 positive nodes, oncotype score 21 and no chemo. My particular oncotype indicated the exact same risk of recurrence with tamoxifen alone vs tamoxifen plus chemo, and my MO said that he would not risk the extra toxicity of chemo for no benefit in risk recurrence in my case. So it’s likely it may be a similar path for you.

    I completed 30 sessions of radiation and did really well avoiding side effects, so when it’s your turn, feel free to ping me for tips! Miaderm, aloe Vera gel, staying hydrated and positive is basically the drill. I’m on tamoxifen now and so far so good with SEs but I’m also on half dose (10mg) for now.

    Best of luck!

  • gracejoy
    gracejoy Member Posts: 26
    edited April 2019
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    Cin17 - I had 1 positive node, oncotype score 16 and no chemo either.

  • Cin17
    Cin17 Member Posts: 41
    edited April 2019
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    I met with my oncologist yesterday and confirmed that I won't need chemo as my PET scan came back clear and my Oncotype DX score is 20. He explained that they used to have three categories (low, intermediate, and high) but now there are just two categories; and the RX Ponder study shows that anything under 26 has no significant benefit from chemo. The study is expected to be published next year.

    He doesn't think I need radiation therapy but wants me to see a radiation oncologist for a second opinion.

    I started Anastrizole yesterday.

    Here's a link that discusses the RX Ponder study. https://www.ncbi.nlm.nih.gov/m/pubmed/28404760/

  • charleysmom
    charleysmom Member Posts: 6
    edited April 2019
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    I had 2 out of 2 lymph nodes positive but due to my Oncotype score of 12, my MO said no chemo...just radiation + hormone therapy. Before we got the Oncotype score back, he had said 4 rounds of chemo. Of course I don't want chemo but if it's a game changer then, yes, I want it.

    My concern is, it could be in 10 more nodes or zero nodes. If there are more nodes that are positive, is radiation going to get them all? (I guess that's rhetorical) I am going for a 2nd opinion next week which I'm nervous about. I don't want my MO to think I am doubting him...I just want to explore all possibilities for my BC and he isn't a BC specific oncologist.

    However, I am glad to have found there are others who had positive nodes but no chemo.

  • Dodgerick
    Dodgerick Member Posts: 22
    edited April 2019
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    Hi Charleysmom,

    My surgeon was so sure when she did my DMX that I didn’t have lymph node involvement so she only took one lymph node....it came back in my pathology reports as extracapsular extension at 1.9cm. My oncotype score is 17 and my oncologist recommended no chemo. I had a second opinion at STANFORD two weeks later and the oncologist there had the same recommendation NO CHEMO. I completely understand how you feel! Praying we made the right decision, it’s in God’s hand and my hope is in God!

  • siciliana
    siciliana Member Posts: 61
    edited April 2019
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    After seeing how my friend suffered from painful neuropathy after her chemotherapy (not for breast cancer) I was really terrified to go through it unless there was well grounded reason to do so. My oncodx was 20 and the report said I had the same chance of recurrence whether I did chemo or not.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited April 2019
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    That link to the RxPonder trial is somewhat misleading in that the study hasn't been completed and published but many MOs are treating the information as definitive. Technically, for node positive women there are still 3 categories.

    FWIW - I had 2+ nodes and Oncotype of 20. Chemo was strongly recommended but I was not in a position (due to serious illness in family) to undertake it at that time. Having had neoadjuvant Femara with a very strong response I chose to proceed to radiation without chemo. It's been less than 4 years so hardly a convincing case but so far all of my scans have been clear. It's not an easy decision one way or the other, that's for sure.

  • AutismMom1
    AutismMom1 Member Posts: 17
    edited June 2019
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    Thank you all for your posts. I had 1 of 3 nodes positive, but my Mammaprint results came back low chance of recurrence so they did not recommend chemo. Which was a great relief. Makes me feel so much better to read all of your similar stories from years past. Doing radiation now (33) to target the lymph nodes and chest wall. Hope that will be enough. For those of you that did radiation, did you have a lot of pain where your lymph nodes were removed? That is the part that is bothering me the most...

  • moderators
    moderators Posts: 8,287
    edited June 2019
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    Welcome, AutismMom1! We're glad you've joined our community, and hope you find this to be a supportive place. That's great news about your low Mammaprint! We hope the rest of your radiation goes well, and we look forward to seeing you on the boards!

    The Mods

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited June 2019
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    AutismMom1, we have a similar age and diagnosis, and it is relieving to find others in the same situation who did not go through chemo. My oncotype report said "no apparent benefit" with chemo, but I was worried about that one single node.

    I recently finished radiation treatments (also 33), and I did have sharp pains and swelling where the lymph nodes were removed. The pains settled down about a week or so after they finished treating that area. I still am healing from the boost treatments though.

  • AutismMom1
    AutismMom1 Member Posts: 17
    edited June 2019
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    Whatjusthappened Glad to hear that the pain stopped about a week later! I just finished my radiation treatments on Thursday. That pain had mostly subsided when they finished the regular ones, did not really bother me during the last boosts thankfully! Hope your surgery went well. I am getting the Lupron injections - another one scheduled for this Wednesday. Likely going to find out which pill they plan to put me on for the next 5 years... Take care!

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited June 2019
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    Thanks AutismMom, my surgery went well. I am also finding out this week which treatment I will be on. I'm a bit nervous about it, but I guess we can always switch if the SE's are not manageable. Congratulations on finishing the radiation. Best of luck to you this week!

  • AutismMom1
    AutismMom1 Member Posts: 17
    edited June 2019
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    Thanks Whatjusthappened - Lupron injection went well. I am going to start anastrozole next week. The MO PA said to wait until 2 weeks after I finished radiation. The only problem I am having is my blood pressure is super high. I have always had low blood pressure, so this is strange. Not sure if the radiation has caused it or just the stress. I also have low platelets. Kind of bugs me cause for the first time in my life I am exercising (walking almost every day) and trying to eat healthy. Thought I would get better, not worse! Anyone else have high BP after radiation?

  • whatjusthappened
    whatjusthappened Member Posts: 178
    edited June 2019
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    AutismMom1, I already had high blood pressure prior to radiation treatment and take medicine for it. Whenever I would have a checkup right after a treatment my blood pressure would be fairly high, in the 165/195 range. They never even batted an eye about it, making me believe that was a common thing for them (or they figured that was normal for me). But it didn't stay that way all the time, just after treatment.

    I would recommend a home blood pressure monitor, if you don't have one already. There is something called the "white coat effect", which basically means that the stress/anxiety of going to the doctor can make your blood pressure higher in the doctor's office than at home. Mine usually runs higher when I go to the doctor. I have also just started on anastrozole. One of the potential side effects is high blood pressure, which is why I would recommend you taking your own readings throughout the day to see how it normally runs. I used to have an app to track it, which was very helpful for my PD. I've slacked off since.

    It is frustrating when you're taking care of yourself and have problems anyway, but imagine how bad they could potentially be if you were not taking care of yourself. Years ago, I had to take two blood pressure medications just to keep it down, which made me feel awful. I cut out sugar and exercised alot and managed to get off of one of them, but not both. But that's something! So keep at it.

    Of course, this has been a stressful year for, and I'm sure your blood pressure is reflecting that. Stress is HUGE, and there's not many things more stressful than being told you have cancer. As far as the platelets, is it possible that they are low because of the radiation? They told me it's possible radiation could decrease some of my blood counts since the bone marrow was receiving some of the radiation. Platelets are made in the marrow, so that seems plausible at least. If that was the case, they should bounce back after a while. I think it depends on how big an area they treated, which on me was rather large. I'm guessing it was on you too, with a positive node.

    Anyway, I wish you all the best, and good luck on your next stage of treatment!


  • AutismMom1
    AutismMom1 Member Posts: 17
    edited June 2019
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    Whatjusthappened Hope the anastrozole works out for you. A friend of mine is on it and said she has had no side effects, hoping for the same. Glad you mentioned the blood pressure side effect the PA at the MO had not mentioned that one. I really need to read up on it before I start taking it next week. Yes, my blood pressure seems to rise every time I am at the MO office. Funny that it did not do that at the RO. I called the RO today to see what it was last time they took it (1st appt in March) - it was fine. That is great you were able to get off one of the BP meds. I have already given up sugar and started to walk 5 days a week, thought my BP would be improving, not getting worse. I am going to start tracking it every day or so. We already have a BP reader. Hoping it is just the stress and will get better as I go along. Yes, thinking the platelets are low from rads and will get better as my body heals. Yes, I had 3 fields, large area - they actually had to use 2 appt times to get me set up & treated, again and again. Take care and have a great week!

  • Audreynz55
    Audreynz55 Member Posts: 1
    edited July 2019
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    Hi yes I’d like to add that I too had a positive node with my ILC but chose no chemo. This was before the results of Taylor x . I had no oncotype test as it’s not subsidised in NZ it costs 5000$. Four years out I’m in good health as far as I know! I’ve never regretted my decision and nothing Ive read since then has changed my mind. My oncologist was fine with my decision.

  • AutismMom1
    AutismMom1 Member Posts: 17
    edited July 2019
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    Audreynz55 Great to hear you are doing well after 4 years and no chemo!

  • Dodgerick
    Dodgerick Member Posts: 22
    edited July 2019
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    Hi Audreynz55,

    My insurance didn't want to pay for the ONCOTYPE either, but my oncologist was able to push it through (praise God!). I was so happy to hear that you are 4 years out with no recurrence! It means so much to hear from survivors in similar circumstances. I worry about every little bump or sore now, my mind goes right to.....did I make the right choice? There are a lot of us that worry, I suppose it comes with the territory once you've been diagnosed with breast cancer. Thanks again for sharing, I appreciate it!

  • AnnC2019
    AnnC2019 Member Posts: 93
    edited October 2019
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    I have multi-centric ILC with 1 out of 2 positive nodes. Largest tumor 3.8cm. LVI, no nodal extension, 4mm Macro metastasis in node. OncoDX12. I will get radiation mapping end of month. No chemo. Tissue expander. I hope to get diep flap and my Left breast removed during the reconstruction as a prophylactic measure. Diagnosed with melanoma on my leg a few weeks ago. Positive for the FH cancer gene which is not directly related to breast cancer. Just at the beginning of this life detour. I lost a first cousin to BC. She was 42. I was diagnosed at 57.