Debating continuing Letrozole after 2 years
Hello everyone. I had a mastectomy for Stage IIA breast cancer in 2022. No nodes or metastases. Started on Letrozole in 2022. I was very fit and well till then. The side effects, pain, fatigue, loss of appetite, feeling low are really getting to me. My lipid profile is altered and there is osteopenia. I have been researching the drug especially with regard to early stages of breast cancer. The incidence of side effects, up to 40% and more are very concerning, especially as they include things like fractures. I cannot seem to find any scientific articles specifically addressing the benefit of Letrozole in Stage I and IIA (node negative) versus the side effects.It is twenty years since Letrozole was introduced and I expected some literature. Have spoken to my doctors who say I need to continue till five years. Im questioning this since it is seriously affecting the quality of my life. Does anyone on this forum with a similar stage of breast cancer have any suggestion or willing to share their experience
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We welcome you here @pgsskg , and thanks for sharing this.
Yes, you are not alone with this!!
It's very important to weigh the pros and cons of continuing on an aromatase inhibitor. You may find this page helpful:Have you had any genomic tests done? You may want to read here:
Looking forward to others weighing in!!
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https://www.nejm.org/doi/full/10.1056/NEJMoa1701830
Interesting article which touches on what you are asking.
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Hi @pgsskg -
Welcome to the forum!
I'm sorry you are having difficult side effects from Letrozole. There are other AIs and sometimes people find they do better on one than another. You might want to discuss switching to a different one with your MO? Some people also switch to Tamoxifen and find that works better for them.
During my 1st round of b.c. (Stage 1), AIs were only being given to metastatic patients. My very wise surgeon and MO suggested I might want to take it as it was showing better DFS (disease free survival) than tamoxifen. I had an oophorectomy in order to be able to take it. I had side effects as I was thrown into menopause at the same time, so it was difficult to know which side effects belonged to the AI and which to the menopause. My biggest issue was the tiredness, but I stayed on it for 8 years. I was afraid to stop it. It kept me safe for 19 years.
19 years after my 1st dx, I had a new primary dx (Stage 1 again.) I was happy to be able to take Letrozole once again. This time, my side effects are minimal. The one big side effect is the bone loss. After my 1st bc round and stopping the letrozole, though I still had osteopenia, it improved some. This time, I am being given zometa infusions every 6 months which seems to be keeping my bones fairly stable. It has also been shown to reduce the likelihood of bone mets. Has your MO recommended that?
I started browsing for studies and I think most of the recent studies are whether or not one should stay on the AIs longer than 5 years and comparisons to tamoxifen. It's not that there were no studies done on AIs vs placebos (which I think is what you are asking for), it's that those studies occurred in the late 1990s/early 2000s and have been proven so well that they no longer show up on the early pages of a google search. However, one would think your MO should be able to provide you with a study? If your MO isn't a very good communicator, do you have maybe an NP or PA? My oncology PA is sometimes easier to talk to than my MO.
All that being said…..it is always YOUR decision on what treatments you have or do not have. The only thing is that you do have to be willing to accept anything that happens in the future that may or may not be a result of your decision. It would be nice if bc was a bit more straight-forward with many less variables.
Take Care.
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I was stage 1A. I tried various forms of hormonal therapy and was so miserable that I had to discontinue it all after just one year and take my chances. My twin sister, on the other hand, has had her ovaries removed and is on letrazole. She has no problems! It's amazing how these drugs can affect people differently. All I can tell you is don't feel guilty if you have to stop taking it. You aren't alone.
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Also check out the PREDICT tool to see the % you gain with HT.
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Thank you, all of you, #orange flower #mandy23 #starbridge #moderators
For taking the time to acknowledge my post and for sharing your stories and suggestions. Humbled.
I am going through it all and taking my time to come to a decision.
We do not have nurse practitioners here and doctors while caring are generally set in their views.
I have not had any of the genetic profiling done. It's available but rather expensive and Im not sure how dependable it is. Cynic by nature😃
Thank you all once again and shall keep you updated once I take a decision. Stay well
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As I continue to navigate the internet for answers to my question, I just came across this online calculator tool for early breast cancer recurrence. It's called PREDICT and is usually used by physicians. It snot suitable for every person with breast cancer, please read the disclaimer, but it seems to answer my question about taking or stopping Letrozole. It is an approved tool, but please check with your treating physicians before using it. Here's the link in case it helps anyone here. https://breast.v3.predict.cam/tool
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I have taken Letrozole for 4x years exactly. I decided yesterday to stop it for now and see if it makes a difference to the symptoms I have suffered for 4x years. I plan to not take it for two months. I just need a break from constant pain and feeling 'flat' as well as 'fuzzy' if that makes sense.
I intend telling the GP if I ever get an appointment. UK, NHS. All the best whatever you decide.
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I understand and appreciate what you are going through. You have done so well to have completed four years on it.
I have been in touch with two thoughtful oncologists . They agree that the side effects of Letrozole are very disagreeable. They also agree that not enough research has been directed towards invasive lobular cancers in Stage I and II.
After long discussions I have decided to follow their advice about switching to Tamoxifen and giving that a go. Wish me luck!!
I sincerely hope that you will get an appointment soon in the NHS,a system I worked in for 8 years...those were great years then!
I hope you get a chance to discuss alternatives with your oncologist. Do try to finish year 5.
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I’ve started listening to music again.
I’ve started taking an interest in life again.Started some home renovations
My pains are gone. I have an appetite.
Insomniac that I am, I am sleeping better.Im back to crochet!
Im so relieved that I took the decision to STOP LETROZOLE. Cannot believe how life has changed after stopping it. Waited a few months before posting.Cancer is bad. We all have to negotiate our way through it. What works for me, may not be what works for you.
As a surgeon and a patient, all I would like to say is….you don’t need to be a martyr to pain and suffering. Take a call. Question. Re evaluate your options.
Look after yourselves , all of you.GOOD LUCK. GOD BLESS
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How far past menopause are you? Did you have OncotypeDX or Mammaprint testing done on your tumor? Do you have a history (personal or family) of blood clots, as well as cardiovascular risk? How's your bone density? Are you on an NDRI antidepressant (which occupies the same metabolic pathway as tamoxifen)?
I was diagnosed Stage IA, Grade 2, Luminal A (the most common type of ER+ in postmenopausal women) at almost 65. I had lumpectomy plus a short course of high-dose radiation to just the tumor bed. My Oncotype DX was 16 (back then the upper edge of low-risk but now considered fully low-risk). No genetic mutations.
I was diagnosed with osteopenia just before starting radiation, I took Letrozole for 6-1/3 years. (Because I'm on the NDRI Bupropion for life, Tamoxifen was out of the question because both drugs occupy the same pathway; and my famiy cardiovascular history is a train wreck). Prolia held the osteopenia at bay for 3 years (the protocol back then) but then it left my system and the estrogen deprivation caused me to progress to osteoporosis. It raised my lipid profile (especially LDL) to risky levels, so I had to go on a statin…which made me prediabetic. I gained >30 lbs on it before first having to go on a medically-supervised low carb diet and eventually tirzepatide (which has given me normal a1c and a normal BMI for the first time in almost 40 years).
My MO admitted that the bulk of AI benefits occur w/in the first 5 years, perhaps as early as 3. My osteoarthritis improved, my lipid and glucose levels have normalized, and tirzepatide helped me lose those 30 lbs and another 30.
Talk to your entire medical team, not just your MO (better yet, have them confer).
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