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Struggling to accept HT for Stage 1 with low likelihood of recurrence

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Hello, I'm 57 and was recently diagnosed and treated for Stage 1a, had a lumpectomy, and my lymph nodes are negative. Official diagnosis: grade I, Right breast IDC, cT1bN0, pT1aN0M0, ER+/PR+/Her2, Stage IA
They removed a .4 mm tumor and I need to move forward with treatment. While I can accept the need of targeted radiation at the lumpectomy site to kill off any stray cancer cells, i'm having a hard time accepting taking 5 years of letrozole and zometa to avoid a very low chance of recurrence. 5 years of medications with side effects which accelerate aging, cognition, bone pain, etc. seem a very high price to pay for an unlikely chance of recurrence for someone who's postmenopausal. Also, with yearly mammograms, wouldn't a new cancer be caught? I read that it take 2-3 years for a tumor to be detectable.

I'd rather have another lumpectomy which just affects my breast as opposed to medicating my whole body and feeling low level sick for years. Does anyone get this way of thinking or am I off?

I asked my doc if I could have mammograms every six month but I don't fit the criteria to qualify. Does anyone get their own extra mammogram to be on the safe side?

Thanks for any guidance or sharing!

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  • mavericksmom
    mavericksmom Member Posts: 1,130
    edited August 2023
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    Hi, I wrote a long post and it got deleted, so I will try to write it again.

    You are absolutely right to question hormone therapy! ALL women should! It should NEVER be taken just because a doctor says to take it. Doctors over prescribe hormone therapy every day, it is standard and they do it without question! Likewise, too many women agree to take it just because they are afraid of cancer and their doctor tells them to take it.

    Each women needs to ask themself if the risk is worth taking hormone therapy based ONLY on THEIR own breast cancer diagnosis, their family history, their health issues, their age, etc! I will NOT tell anyone what to do, other than to take some time to really understand the drug their doctor is recommending and decide if the risk of taking it is worth it.

    Is hormone therapy good for some, YES! Is it bad for some, YES!

    I will not tell you what to do, but will tell you what I did,

    I had breast cancer three times. In 2003, I refused tamoxifen, I was more terrified of getting ovarian cancer from it than getting cancer. A month after my Dx, my mother was diagnosed with BC. A year to the day of my biopsy my sister who lived far from me, had a biopsy that was positive for BC. Later when they took out 4 sentinal nodes, one was positive for breast cancer but all four were positive for non-Hodgkin's lymphoma.

    In Dec 2018 I was diagnosed with ILC in same breast and I was refused a bilateral mastectomy by my breast surgeon, so I had to settle on a Left mastectomy with DIEP reconstruction. I went on Letrozole for 6 months and quit because it caused my cholesterol to go way up! A few months after my left mastectomy, my second oldest sister was diagnosed with breast cancer.

    In August of 2022 I was diagnosed with DCIS, IDC, and LCIS in my right breast so I had a right mastectomy in October. I am back on Letrozole, have been for 9 months and so far haven't had any known side effects from it.

    As you can see, I seem to be a cancer magnet AND I have a strong family history even though I am not BRCA+! I was tested for 54 genes and none had defects. It still makes perfect sense to me to take the HT.

    I DO NOT regret refusing Tamoxifen in 2003, and I DO NOT regret stopping the Letrozole in 2019? I DO, however, regret not going for another opinion in 2018 and getting a bilateral mastectomy!

    One thing many don't consider, that if they take a hormone therapy, and it only delays breast cancer for a number of years, and then they get diagnosed again, will they likely be just as healthy as they were prior to their first Dx, or will they likely be less healthy? I know that in my late 60's, my last mastectomy and the exchange surgery, were so much harder on me than either of my two other surgeries.

    There is a thread on BCO called something like "Roll Call for those stopping HT,"

    Your logic makes sense to me, but ONLY YOU can make the decision to take the HT or not. It is not an ALL OR NOTHING, decision. You can try it and stop if it causes too many problems. Or, you can hold off and then start it later. Your medical oncologist might not be happy with you, but trust me, he/she will get over it! YOU are the one who will have to live with your decision, so do what YOU feel is best for you and don't feel guilty for your choice!

    Wishing you the best in whatever you decide!

  • aprilgirl1
    aprilgirl1 Member Posts: 757
    edited August 2023
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    I was stage 1 node negative idc, 1.6 cm tumor, lumpectomy with clear margins. I took femara for a little longer than 6 years as at the time the Standard of Care was wavering between 5-10 years of hormone blocking for stage 1. It was decided that my risk of a recurrence was so low, they took me off femara (I did not have significant side effects but it does contribute to bone loss). All my mammograms were beautifully clear for 11 years.

    My recurrence in 2019 is stage IV - never came back in breast tissue so those mammograms did not detect this recurrence. Stage 1 node negative breast cancer patients do not get pet/ct scans after treatment as it isn't "necessary" and I had to fight to get a pet/ct when I had some odd symptoms (extended laryngitis turned out to be a paralyzed laryngeal nerve on the same side as my breast cancer caused by cancer filled superclavical lymph nodes).

    My advice it to try it. If letrozole gives you side effects, try arimidex. If either A/I makes you miserable, then talk it over some more with your oncologist.
    Edited to add: my blood work was and has remained completely normal as far as any tumor markers are concerned so there was no way to tell that any cancer cells were circulating . Also, with treatment I am doing great and have had clear scans for 3 years- but am happy to continue to take cancer medication forever (most likely ).

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,755
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    The choice is always yours, always! That being said you are focusing on recurrence in the breasts but the more important risk involves metastatic recurrence. Metastatic breast cancer is not curable. Yes, local recurrences may be easily treated but the greater concern is metastasis. Even with negative nodes, bc cells can travel through the bloodstream.
    In the end, after having looked at all important factors, the choice is completely yours.

  • spookiesmom
    spookiesmom Member Posts: 8,168
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    I had a double mastectomy in 2012 I was clean for 7 years. In 2019 I found a lump on the other side. Surgery and rads for that. Was on ibrance and AI for 3 years, then nothing. At my annual PET/ct January this year, nothing lit up. Routine labs in may showed my tumor markers had jumped. Another PET/ct, it’s in my bones in 4 spots.

    Always your choice to take it or not. I was on them, then off, then on again. Try them, see how it goes. You can always stop.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,755
    edited August 2023
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    laughing gull’s post is on point. The reason for the meds is not so much to prevent a local recurrence, it’s to prevent metastasis which can and does happen even with negative nodes. Please give more consideration to prevention of metastasis rather than local recurrence. As she also points out, side effects are not universal though by reading bco , you’d think they were. Folks tend to post much more when they are having problems then when they aren’t.

    My situation is completely different but I have been on an AI for 12 years! Although I am now in the midst of a three month break, I worked full time for 9 years (then retired as planned)on an AI, traveled and functioned fairly typically. Yes, I had some joint/bone pain . No cognitive decline nor premature aging. It’s impossible to predict in advance how your body will react.

    Again local recurrence prevention may be a consequence of taking this drug but the primary function is to prevent metastatic disease. There are never any guarantees so just make sure that you determine your acceptable risk vs regret level.

  • chapterfive
    chapterfive Member Posts: 5
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    Thank you, wonderful ladies, for sharing your wisdom, experience, personal stories, input, guidance and time writing such comprehensive responses to my concerns. Reading all this has helped me tremendously and has lightened the weight on my mind. I'm very grateful to you! Take good care of yourselves ❤️ @mavericksmom @aprilgirl1 @exbrnxgrl @spookiesmom @laughinggull

  • denton10
    denton10 Member Posts: 4
    edited August 2023
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    I was diagnosed in March of this year 60 yr, IDC, 6mm, Grade 1, negative nodes, Stage 1A, est/pr +, her2 neg. Onco type score 21 7% with AI 14% without. Lumpectomy in May, targeted accelerated 5 treatment radiation in July, started anastrozole end of July. I have struggled with this as well. I haven’t fully committed to it yet. I ask myself every single day if I’m going to take it today. My s/e have been minimal so far but there are s/e. I also have some radiation issues going on as well. I’m trying my best to ride it out and hope it levels out soon. I have an appointment with my MO in September. I decided to take the try it and see how it works out route. Obviously, I want to give it a fair chance because it does help with reoccurrence. Hopefully, I will feel a little better by then. You are not alone.

  • wendy55
    wendy55 Member Posts: 1
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    Hi……

    I too am in Stage 1 with low reoccurance score. Doctor put me on letrozole. Took for about 15 days and stopped. The SE started to kick in, and I was miserable. The joint pain in my knees was bad, I couldn't walk well and was hunching over. The pain spread to my hips, my back, and even in my hands. My mood dropped and became very miserable. I felt like I was having major PMS. I stopped because I couldn't tolerate the joint pain. Before my BC diagnosis, I was in therapy for a year with knee issues, and was in constant pain all the time. I don't know if the SE would get better, but all I know is I wouldn't swallow another pill to find out. Have an appointment with the doctor, but I'm not sure if I want to stick with this either. It's too difficult for me right now. My breast is still recovering from radiation, and this medication even started having the breast ache. AT this point I don't know what I want to do. I can't live my life like this. I know all are saying to take it it can save your life, but what life do you have if you are miserable? These drugs have so many side effects, I'm just not sure. Bless those that have no issues with it. But I have to work, and I don't have the time to nurse my misery if you know what I mean. This whole thing is very depressing. My score is 4% with AI's, 8% if I don't take it, so the doctor says. No history.

  • katg
    katg Member Posts: 206
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    All of you, the journey is so different, yet a few similarities remain. Breast cancer and its numbers are so varied. I found my 5 cm lump, a biopsy at my new doctor and hospital. Referral to COH, a 4- cycle treatment for the cancer. Then my genetic test came back and i did have the Brca2 mutation. What???? I had 12 weekly cycles of 2 chemos……then 1 more chemo. In my first 5 months. I was given Femara in February of 2022. So far, I have been on it since then. For 5 years or possibly 10. Side effects? Looks like i could get a blood check to check my cholesterol. I am not sure if it has affected that. But right now, I have far less side effects now that i am only on Femara (letrozole) and Plavix.

    I had been on herceptin/perjeta infusions for 18 rounds ending in mid March of 2023. Lynparza for 12 months ending in mid June of 2023. Ending both of those lessened neuropathy, joint pain and the dreadful metal taste in my mouth. Not really dreadful, just a noticeable thing that reminded me i was on active treatment.

    It is all about you and what you want!!! I have had a double mastectomy and my ovaries and fallopian tubes removed. Brca2 has a better chance of returning in those body parts. Estrogen is not my friend. Do i know the long term affects? No. I was stage 2/grade 3 with no nodes. The research hospital at the City of Hope has a treatment plan. I am in the "survivor stage " now. It has been 2 years since it started.

    I am super grateful the Femara is not causing side effects that have been spoken about. I will say i was able to add back vitamins after i finished Lynparza and was excited to take the hair/skin/nails gummies from Costco. Ha! My FU visited at the MO's office; I was told those gummies have biotin. Biotin may counteract the effectiveness of Femara. What? I am know looking to add something else to my diet for my rubbish nails. (Another member on this site used that word in our zoom meeting. I loved it) Also, I was drinking a Sparkling drink I enjoy, and it too has 15% biotin. What? I have drank more water in the last two years. Now it looks like i need to find fruit water like my friend makes and things like that.

    Choices. Our bodies. We do not know the side effects until we take the meds.

  • moderators
    moderators Posts: 7,918
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    @wendy55 we're really sorry you experienced such extreme side effects! There are 3 different aromatase inhibitors, so you may want to consider trying one of the other ones, to see if the side effects are less. Ultimately, as @katg so well said, you'll need to weigh everything for yourself.  We're here for you! 🤗

  • brutersmom
    brutersmom Member Posts: 884
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    It is a personal decision. I chose to stop them after a year due to side effects. I was told my cancer would probably return in 3 to 5 years. 7.5 years after my initial diagnosis I had a distant recurrence. Again it is a very personal decision between you and your oncologist. I was 62 when diagnosed and I am 70 now.

  • harley07
    harley07 Member Posts: 273
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    I recommend discussing with your doctors the absolute benefit of taking the AI so that you understand the benefit vs risk. My Mammaprint was low risk and the Predict calculator indicates a 1% benefit of AI for me. My MO refuses to run the Gail or TC risk calculator for me so I’m not sure if my genetic mutation would change the benefit of AI. Due to side effects I have chosen to stop the AI after two years.

    Ultimately this is is your decision and as others have stated you can start the AI and quit if the side effects are too much. But distant recurrence is the greatest risk so make sure you understand your situation.

  • chapterfive
    chapterfive Member Posts: 5
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    I'm still waiting for my oncotype score and then will discuss next steps with my doctor. I guess i'll start the HT and see how it goes. Thank you @denton10 @wendy55 @katg @brutersmom @harley07 for sharing your experience and support about it being a personal decision. Wishing you all good days ahead!

  • denton10
    denton10 Member Posts: 4
    edited August 2023
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    @wendy55 anastrozole made my breast (both of them) ache too.

  • blessedsr7
    blessedsr7 Member Posts: 1
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    Had S1N0M0ER+ LCIS at 47 and a bilateral mastectomy with immediate TRAM flap. Took Tamoxifen HT <5y; had to stop b/c of spotting which is a sign of endometrial cancer (a known side effect)—I did not know at the time that Tamoxifen is listed as a IACR Group 1 carcinogen. At 60 had a local recurrence of IDC S2N0M0 and had 3rd lumpectomy and did four rounds of chemo refused radiation and HT. At 62 had another SIIN0M0 local recurrence and had 4th lumpectomy. After a ton of clinical study research declined radiation and HT but take Ivermectin, detox footbaths weekly before supplements, infrared saunas, walk and limit sugar. Cancer is a metabolic disease and obesity and insulin drive cancer—lots of research on this link. Eat to Beat Disease by Dr. William Li and The Cancer Code by Dr. Jason Fung are good resources. I believe new cures are coming!

  • chapterfive
    chapterfive Member Posts: 5
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    @blessedsr7 thank you for sharing your experience and the book recommendations. I am definitely interested in the nutrition component and getting a better handle on my weight and sugar to help lower estrogen. Wishing you strength and peace on this journey!