1. < Breast Cancer

Invasive lobular cancer and treatment choices

Posted by denisesjourney123 @denisesjourney123, Feb 9 6:59pm

I was diagnosed with ILC in dec2023. I just had a lumpectomy and they removed 3 small tumors grade 1 and 3 lymph nodes. My lymph nodes were negative but my margins were positive. I’m scheduled for a mastectomy and estrogen blocker in the future.I’m waiting to hear if I need chemo. I am considering reconstructive surgery later. How many of you with ILC would get the mastectomy ?My right breast is fine so far. How many of you would take the estrogen blocker knowing the side effects? Thanks

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denisesjourney123 | @denisesjourney123 | Mar 7 9:40am

Did you catch your cancer in its early stages? What was your grade and pathology score? What was your treatments besides a blocker? I’m concerned this cancer is sneaky. My right breast is a ok now but the reoccurrence rate in traveling to other parts freaks me out. Thanks

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lrchaparro | @lrchaparro | Mar 7 9:41am
In reply to @lrchaparro "I was also diagnosed with ILC 6 6 years ago on my left breast and opted..." + (show)
@lrchaparro

I was also diagnosed with ILC 6 6 years ago on my left breast and opted to do a mastectomy with reconstruction. I tried tamoxifen 3 different times but I felt very dark and gloomy with terrible joint and muscle pain. After talking with my doctor who told me my risk would go from 7% to 4% by taking tamoxifen, I decided to not take it anymore. However, in January 2024 I had my annual mammogram which detected a small spot on my right side. After the biopsy it was confirmed that I once again have ILC in my right breast - stage 1 and the MRI does not show that it has spread and the type of ILC is similar but not the same as the first ILC I had so it did not spread from my left breast. Chemo and radiation are unlikely but we will know for sure once the surgery is done. I am going to remove my implant on the left breast, have a mastectomy on the right breast (I just can’t have anymore scares with the mammograms) and have a DIEP flap to reconstruct both sides. I wanted this surgery the first go around but the plastic surgeon said I didn’t have enough fat (which I thought I had more than enough) but thanks to age and menopause I now have enough to reconstruct both sides. I didn’t realize all these years I was feeding and growing my new belly boobies. I will once again try the hormone medication and hopefully because I’m in menopause the different drugs will not affect me as much. Good luck to you in your journey. I’m sorry you are having to go through this!!!!

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I noticed two 6 6 were on this message. It was 6 years ago - I am 55.

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thielmann1 | @thielmann1 | Mar 7 3:06pm
In reply to @denisesjourney123 "Thank you. Were you on the blockers when you had your reoccurrences? How did you know..." + (show)
@denisesjourney123

Thank you. Were you on the blockers when you had your reoccurrences? How did you know you had cancer after a mastectomy? Invasive lobular is a sneaky cancer. It seems to like to reoccur.

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I was on tamoxifen. There was a very small lump in my armpit which just looked like a skin tag. They were surprised to find that it was breast cancer after a biopsy. They felt that it was left over from mastectomy. I then went on Arimidex until 2013. In 2015 a tiny lump showed up a few inches from Armpit. My reoccurrences are all attached to my skin. Yes, lobular is very sneaky.

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thielmann1 | @thielmann1 | Mar 7 3:21pm
In reply to @denisesjourney123 "What is the name of the chemo pill you took?" + (show)
@denisesjourney123

What is the name of the chemo pill you took?

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After last occurrence of breast cancer, my oncologist sent a sample of cancer tissue to a foundation for further research. I have 11 mutations which puts me in another category than Estrogen Positive now. Xeloda is the chemo pill targeted for tumors with over 10 mutations. The 3 spots on my chest wall disappeared within 4 to 6 months.

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wmcurtis | @wmcurtis | Mar 17 8:36pm
In reply to @semurrey "I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm..." + (show)
@semurrey

I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm 58 yrs, rather thin, small build who does all the calcium, vit D and strength exercises. The endocrinologist really thinks best option is to start with weekly Fosamax. I am in remission with my Chrohn's but there is a possibility I will have to go with the annual infusion of Reclast if I don't properly absorb Fosamax. I am very anxious as side effects seem terrible and no way of knowing if I will in fact have any spine fractures which my doc is most worried about. The doc also said root canal, crowns would NOT be an issue but extractions, implants would be procedures he would recommend getting before going on the bisphosphates. Anybody have advice....xooxox

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I've taken Anastrozole for almost two years. All that I've experienced have been occasional hot flashes and some hair thinning. I'm glad that I've taken it. I was also taking Ibrance which caused no problems other than hot flashes and a little more hair thinning.

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1 reply
denisesjourney123 | @denisesjourney123 | Mar 17 9:58pm
In reply to @wmcurtis "I've taken Anastrozole for almost two years. All that I've experienced have been occasional hot flashes..." + (show)
@wmcurtis

I've taken Anastrozole for almost two years. All that I've experienced have been occasional hot flashes and some hair thinning. I'm glad that I've taken it. I was also taking Ibrance which caused no problems other than hot flashes and a little more hair thinning.

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I’m going to give it a try. I’m hoping the side effects are not horrendous! Invasive lobular is so sneaky! 😡

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sharon44r | @sharon44r | Nov 17 5:23pm
In reply to @semurrey "I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm..." + (show)
@semurrey

I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm 58 yrs, rather thin, small build who does all the calcium, vit D and strength exercises. The endocrinologist really thinks best option is to start with weekly Fosamax. I am in remission with my Chrohn's but there is a possibility I will have to go with the annual infusion of Reclast if I don't properly absorb Fosamax. I am very anxious as side effects seem terrible and no way of knowing if I will in fact have any spine fractures which my doc is most worried about. The doc also said root canal, crowns would NOT be an issue but extractions, implants would be procedures he would recommend getting before going on the bisphosphates. Anybody have advice....xooxox

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But you can’t have an extraction right after you take reclast

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sharon44r | @sharon44r | Nov 17 5:51pm

I am having radiation now after lumpectomy, for ILC . Oncolgist said I didn’t need radiation but would need a hormone blocker. I decided to see
the radiation doctor and he told me since I had 2 foci in a quadrant he thinks I should have radiation. He told me a lot of women don’t stay on the hormone blockers because of side effects.
I don’t want to take either pill since I have bad neuropathy and I’ve been on prednisone for 2 1/2 years for PMR, also osteoporosis from prednisone.
The thought of having more pain in my body would be unbearable, but if you don’t have issues, it might be worth a try.
Still not sure f I’m doing the right thing, or if I will try the pill. It’s a hard decision. I’m 75 years old with lots of other issues.
I am stage 1 grade 2 with a low recurrence score of 11
Any suggestions?

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1 reply
casbc | @casbc | Nov 18 1:56pm

With ILC, all options are on the table. It's too sneaky and invasive not to take all precautions. I'm 74 so I understand your feeling unsure.

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1 reply
catlover2020 | @catlover2020 | Nov 19 1:22am
In reply to @semurrey "I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm..." + (show)
@semurrey

I'm only one year into Letrozole for ILC and my bone density pushed into osteoporosis. I'm 58 yrs, rather thin, small build who does all the calcium, vit D and strength exercises. The endocrinologist really thinks best option is to start with weekly Fosamax. I am in remission with my Chrohn's but there is a possibility I will have to go with the annual infusion of Reclast if I don't properly absorb Fosamax. I am very anxious as side effects seem terrible and no way of knowing if I will in fact have any spine fractures which my doc is most worried about. The doc also said root canal, crowns would NOT be an issue but extractions, implants would be procedures he would recommend getting before going on the bisphosphates. Anybody have advice....xooxox

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Fosamax made me so sick. Projectile vomiting for hours, i was so mad at myself for taking it. I'm a tiny 66 year old with very bad bones. I carry a disk my doctor made of my horrible neck. I have osteoarthritis, breast cancer ILC, Gone flat and just had a hysterectomy, I also have EPI, I'm sick of pain, I'm using yam cream, soursop tea and DIM. I've removed all plastic out of my kitchen and only wear cotton. Antique if at all possible. I hope this helps,
I'm at peace with my decision.
No more doctors. Best of luck

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