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

Posted by wyowyld @wyowyld, Feb 23, 2025

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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wyowyld | @wyowyld | Jan 6 12:45pm

Oh my goodness @buckokey do I hear you! I am the original poster of this thread, am 70, and made the decision to have a lumpectomy with 5 day targeted radiation. I made the radiation decision because of fairly recent studies showing it is even more effective for ILC than IDC. I was told by my radiation oncologist, after genetic testing, etc. etc., that AI's would further reduce my "overall risk of recurrence" by 1%. Call me an optimist, I will own that label, but I chose quality of life over the meds. What is so confusing is all the different recommendations you read on here from Dr.'s. No matter what approach you decide on, someone's Dr. is going to strongly disagree. Each of our cases, history, etc. varies so widely.

Both my radiation oncologist and medical oncologist are of the belief we are doing more harm than good in over-treating early stage breast cancers, an opinion many quite strongly disagree with. I am going with the odds and quality of life in this final chapter, and will not look back. If I were younger, I quite possibly would make a different decision. Good luck to everyone, no matter what treatment path we have chosen. They are no givens, and supporting each other and our decisions is the best we can do!

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buckokey | @buckokey | Jan 6 1:43pm

Good for you! At 78+, I’m really considering going off medication after surgery and possibly radiation (that’s not been discussed yet). I’m just a bit angry that after taking the letrozole 7 mos now—plus the thought of having to go several years after surgery, is it worth it if the side effects do not add any quality of life! I just got off phone with oncologist and she’s switching me to anastrozole. Wise or not, I’m just “tired of being tired”. Thanks for your input! Wishing you the best!

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buckokey | @buckokey | Jan 6 2:08pm
In reply to @brightlight66 "@buckokey Hang in there! The Letrozole may in fact be shrinking the ILC tumor for lumpectomy..." + (show)
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@buckokey Hang in there! The Letrozole may in fact be shrinking the ILC tumor for lumpectomy surgery which is why it was recommended. HOWEVER mastectomy is often recommended for ILC because ILC is so diffuse and surgery gets clear margins.
I wanted a lumpectomy too, but finally accepted that I needed a mastectomy which showed positive pathology margins (not clear). Then chemo to kill whatever cancer cells were left, a second surgery to get negative margins (clear pathology) and radiation. Because the ILC was so sneaky, I'm very happy that it's out and did not have any reconstruction. Honestly, I am glad to have had a mastectomy as there's no residual ILC. Now I'm on Anastrozole to prevent a recurrence and I'm doing my best.
So to answer your question, the Letrozole may in fact be shrinking everything so that you CAN get the lumpectomy, but if you need a mastectomy, please accept that the most important thing is that it's so important to get it all out because your life is a blessing and you are a most important part of this world.

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@brightlight66
What positive feedback and I thank you for that! I called doctor today and they’re switching me to Anastrozole to try that. I was convinced of the mastectomy back in June but then the oncologist suggested we try this route so that’s why I was taken aback when mastectomy was mentioned at last appointment. I appreciate your input! All the best to you!

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timely | @timely | 6 days ago
In reply to @buckokey "Hooray for you! As patients we tend to lean into our physician ‘s advice as gospel..." + (show)
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Hooray for you! As patients we tend to lean into our physician ‘s advice as gospel but I totally agree with you! I e had a rather large lump in left breast over two years. Was told “nothing to worry about “ over a year. Then went to ob-gyn for endometriosis (found when I had MRI for pneumonia) she examined my breast and the immediate reaction was very telling. After further tests was told “it’s ILC” and went through several months of tests and biopsies then told I would need mastectomy. I was failed in so many ways by the medical team I could have sued and won I’m certain. But I decided to use my energy to fight the cancer instead. I had to travel 90 minutes each way to my surgery oncologist but was relieved when she offered the 6-9 months on letrozole then a lumpectomy. (I had lumpectomy on right breast more than 22 years before—which should have been considered from the get-go!) Now I’m 7 months on letrozole with lumpectomy scheduled for March—but oncologist now says if I need her to go back in to get the circumference needed per pathology report—it would probably mean a mastectomy. I am so upset as I had gone this route at her direction to prevent a mastectomy! Now the extreme tiredness from the medication and the thought of having to take it for 5-10 years following surgery is wearing me down. I turn 79 in a couple weeks and like others, am thinking just talent chances without taking anything g and live my best life for whatever time God allows. Wondering what others think about this…TIA and thanks for “listening”.

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@buckokey

Everyone has to make their own choices.

You may or may not have any symptoms on Letrozole if you are lucky and do not carry the genes for AIMSS which cause joint pain and other symptoms on AI’s.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 1 hour ago
In reply to @spud62 "@ytendoll There is a good tool called "predict breast cancer" from Cambridge University. You can enter..." + (show)
Profile picture for spud62 @spud62

@ytendoll There is a good tool called "predict breast cancer" from Cambridge University. You can enter your specific details and play around with the different treatment options to see the expected outcomes.

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@spud62, have you also been diagnosed with breast cancer? What treatment options were recommended for you?

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