Stage 1 lobular breast cancer, anyone no treatment after surgery?

Posted by wyowyld @wyowyld, Feb 23 11:49am

I am one week out on my lumpectomy and according to recent statistics, have a 5 to 7% chance of recurrence in the next five years with this type of cancer without treatment. I cannot imagine putting my body through all the side effects of radiation and AI treatment when I have a 95% chance of nothing happening. Apparently with this cancer the risk is late recurrence, after 10 years. I am so torn and stressed out by the decision I have to make. They asked me to make it in the next two weeks. Am I the only one who has considered not taking any other treatment after surgery because I honestly believe there will be big advancements in that period of time?

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Thank you so much for this response. I was starting to think I was the Lone Ranger out there after looking at the odds, and feeling the way I was feeling. It certainly makes sense to me and good luck!

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@gigipatula

Mine was Stage 1 IDC ER/PR positive and HER2 negative I was 65 at the time of surgery. I chose lumpectomy with breast reduction alone because my post surgery biopsy showed no lymph nodes and clear margins. For me was the place where it was located they could not assure me 100% that I would not have any heart issues because I would have had radiation directly above my heart. I can appreciate you looking at numbers and thinking the odds are in your favor! My chance of a recurrence was less than my chance of having permanent heart damage, so I chose to forego it as well as hormone therapy. The hormone therapy had less than 2 % chance of preventing anything and a horribly high risk of side affects.

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I did have radiation and am mad I did. My radiation oncologist recommended 5 treatment of rad. At a high level but said my heart would be fine. So I got it done. Then when I went to cardiologist he was so rude and just said oh yeah, you will get corotid arteries from radiation (left side) I was like…don’t you guys talk to each other? For Gods sake.
Why would rad oncologist act like the heart would he fine when it won’t? I prayed when I got my radiation for God to protect my heart. So there is that!!! 🙏💕💪🏻✅

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@salamander

I did have radiation and am mad I did. My radiation oncologist recommended 5 treatment of rad. At a high level but said my heart would be fine. So I got it done. Then when I went to cardiologist he was so rude and just said oh yeah, you will get corotid arteries from radiation (left side) I was like…don’t you guys talk to each other? For Gods sake.
Why would rad oncologist act like the heart would he fine when it won’t? I prayed when I got my radiation for God to protect my heart. So there is that!!! 🙏💕💪🏻✅

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Yes, they were pushing the brachytherapy for me. My late Dad had radiation for colon cancer and it made the last year of his life hell. So I may have some PTSD about radiation. I do hope nothing bad did happen with your heart and sending prayers for your good health!

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What I have found in my treatment is everything is so siloed. Each area has it's own narrow part in treatment.

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@nanthony723

I was diagnosed with Stage 1 lobular cancer in January of 2023. I had a lumpectomy and had the sentinel node removed for biopsy, which showed no sign of cancer. I live in a rural area, so my radiation oncologist offered me a fairly new radiation treatment schedule that involves higher doses of radiation given every other day for just two weeks. I believe this radiation regime was created in Italy. I had no side effects from the radiation, in terms of burning or post radiation pain. My Oncotype Dx score was 12 and did not have chemo, as chemo has shown to be ineffective for lobular breast cancer. (Whew! Dodged that bullet!) I took Anastrozole for 14 months. The first year, I had no side effects. But starting at around 1 year, I became depressed and my joints really started to ache. Especially in my fingers and hips. I opted to quit taking it as quality of life is more important to me at this point in my life. (I'm 65.) I just had my two-year follow-up mammo and ultrasound and received the "all-clear." I have a breast MRI scheduled for June and, hopefully, I will receive another "all clear." I get anxious before all of those appointments, so I understand your concern about whether or not you made the right decision. I would recommend you go through with the radiation. It's quick and provides a bit more peace of mind. Good luck to you in your journey. Hugs, Nina

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My surgeon is not doing any Oncotype DX or gene testing. I'm stage one and 69.

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I have DCIS with invasive cells, stage 1a, grade 2-3 (not lobular BC). Even before surgery, the surgeon said that she didn't do Oncotype for people over 70. I'm 80. After 2 surgeries, medical oncologist said I could have Oncotype done but would have to wait a month to get the results. I could not start radiation until Oncotype results were received. By this time more than 3 months had passed since the cancer was first discovered. So I decided not to pursue Oncotype testing, assuming that because I was 80, my cancer was probably not very aggressive. After radiation, I started aromatase inhibitors but tolerated them poorly.

I went to a 2nd medical oncologist (at a different cancer center), asked her for Oncotype test and she ordered it. My hope was that my score would be low and that it would be safe for me not to take aromatase inhibitors. Instead, my score was 29 (higher than I'd hoped for!). So, in addition to anastrozole, I am just now starting Kisqali (ribociclib). My conclusion: older people can and do have (relatively) aggressive cancers and should have Oncotype (or other genetic tests for their tumors). Age should not be the deciding factor.

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@peggydobbs

I have DCIS with invasive cells, stage 1a, grade 2-3 (not lobular BC). Even before surgery, the surgeon said that she didn't do Oncotype for people over 70. I'm 80. After 2 surgeries, medical oncologist said I could have Oncotype done but would have to wait a month to get the results. I could not start radiation until Oncotype results were received. By this time more than 3 months had passed since the cancer was first discovered. So I decided not to pursue Oncotype testing, assuming that because I was 80, my cancer was probably not very aggressive. After radiation, I started aromatase inhibitors but tolerated them poorly.

I went to a 2nd medical oncologist (at a different cancer center), asked her for Oncotype test and she ordered it. My hope was that my score would be low and that it would be safe for me not to take aromatase inhibitors. Instead, my score was 29 (higher than I'd hoped for!). So, in addition to anastrozole, I am just now starting Kisqali (ribociclib). My conclusion: older people can and do have (relatively) aggressive cancers and should have Oncotype (or other genetic tests for their tumors). Age should not be the deciding factor.

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If you use Medicare they require the hospital to hold the sample for two weeks and then wait another two weeks for results. We need to call our people in office and have this changed.

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