1. < Breast Cancer

Stage 1, very treatable invasive lobular carcinoma

Posted by kandisn @kandisn, Dec 19, 2024

I just talked to my surgeon, and now have to make the decision of a lumpectomy or a mastectomy. My cancer is in my right breast only, and a small tumor, at stage one. I feel very lucky that my cancer was caught early. I am so torn between the opinions. I guess I need to hear other peoples stories. I know it is my decision alone . Thank you for anyone that can share.

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marshgirl24 | @marshgirl24 | Jan 1 9:05am
In reply to @kakc19 "Diagnosed stage 1 on 10/10/24. Went with lumpectomy as 3 different MDS from 3 different hospitals..." + (show)
@kakc19

Diagnosed stage 1 on 10/10/24. Went with lumpectomy as 3 different MDS from 3 different hospitals said the same thing.
Radiation starts next week. I do wonder at times if I should have had mastectomy.
Because it was invasive lobular I am having whole breast radiation, which I did not know ahead of time. Now I am at risk for heart and lung complications since it’s my left breast that will be radiated.
I am a nurse and wish it could have all been discussed ahead of time from surgical medical and radiation oncologists viewpoint.
My physician team are from Dana Farber, Mass General, and Brigham Women and I do feel like I have to trust what they say. They all agreed.
Best of luck.

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@kakc19 You may already be in radiation treatments. I also had whole breast radiation for lobular early stage after lumpectomy on my right breast. It helps if you practice your breathing. They will probably have you hold your breath during radiation. The first day I felt like a failure with my breathing. Went on YouTube that night and found some videos on breathing during radiation. If you press your tongue against the roof of your mouth and close off your throat, it helps. Good luck to you! You've mentioned 3 top hospitals that are usually at the top of their game on protocols. And they agreed so...

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Mentor
Miriam, Volunteer Mentor | @mir123 | Jan 1 9:41am
In reply to @leonielaw "I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1..." + (show)
@leonielaw

I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1 invasive Lobular BC. I was afraid that it would come back larger. Onco was shocked they found it via regular mammogram. They said it was 1.4 cm, but after surgery it was found to be 3.7 cm. In other words Lobular BC is a "Sneaky" cancer. I didn't want to live on pins & needles. I'm stressed enough trying to figure out How I even got BC. Was it something I did? Ate? Drank? Any answer would at clarity to my life. One thing is I have NO regrets having the bi-lateral masectomy. Just finished reconstruction & they look "normal". On meds still, glad no more mammogram.
Do the double masectomy- come out Swinging & Kicking Cancers Ass. Be Blessed my fellow sister in arms. We WILL beat cancer!!!

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I'm sorry you have been going through this, and hope you are doing well. If possible, try not to stress about what you "did" to get breast cancer. I gather age and genetics are the major obvious co-factor. (And we can't control either of these). Otherwise, there are numerous things that might have an effect, but this is far from conclusive. Maybe in the future there will be a known cause. But for now, I tell myself I have to live with the uncertainty and be glad of the treatment and support I have. At least that is my New Year's resolution! Wishing you all the best.

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1 reply
moloney1231 | @moloney1231 | Jan 1 11:39am
In reply to @marshgirl24 "@moloney1231 I'm so sorry that this happened to you. I also was diagnosed with lobular, and..." + (show)
@marshgirl24

@moloney1231 I'm so sorry that this happened to you. I also was diagnosed with lobular, and it is a creepy type of breast cancer! Could I ask, did you have radiation and/or hormone blockers after your lumpectomy? And did it come back in the same breast?

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Marshgirl24. I had brachy radiation and I was on letrozole for 7 yrs. Cancer came back in same breast.

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marshgirl24 | @marshgirl24 | Jan 1 3:03pm

@moloney1231 That is disappointing and concerning. Does long term data exist somewhere re: lobular recurrences? I asked questions when I was diagnosed but maybe not the right ones. I would like to know 5, 10 and 20 year recurrence and survival rates. What I was told was that treatment has changed over the past 20 years. ???

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1 reply
moloney1231 | @moloney1231 | Jan 1 4:13pm
In reply to @marshgirl24 "@moloney1231 That is disappointing and concerning. Does long term data exist somewhere re: lobular recurrences? I..." + (show)
@marshgirl24

@moloney1231 That is disappointing and concerning. Does long term data exist somewhere re: lobular recurrences? I asked questions when I was diagnosed but maybe not the right ones. I would like to know 5, 10 and 20 year recurrence and survival rates. What I was told was that treatment has changed over the past 20 years. ???

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When I was first diagnosed in 2012 there was no difference in treatment for ductal vs lobular. Lobular was given chemo even though now they know it isnt effective. I have only been seeing new things for lobular in the last 5 yrs so you will probably not get the data you are looking for. But if they can’t screen for lobular I would be hesitant to do just a lumpectomy, but that is just my opinion. I obviously regret not having a mastectomy 12 yrs ago!

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engelwags | @engelwags | Jan 2 11:21am
In reply to @leonielaw "I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1..." + (show)
@leonielaw

I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1 invasive Lobular BC. I was afraid that it would come back larger. Onco was shocked they found it via regular mammogram. They said it was 1.4 cm, but after surgery it was found to be 3.7 cm. In other words Lobular BC is a "Sneaky" cancer. I didn't want to live on pins & needles. I'm stressed enough trying to figure out How I even got BC. Was it something I did? Ate? Drank? Any answer would at clarity to my life. One thing is I have NO regrets having the bi-lateral masectomy. Just finished reconstruction & they look "normal". On meds still, glad no more mammogram.
Do the double masectomy- come out Swinging & Kicking Cancers Ass. Be Blessed my fellow sister in arms. We WILL beat cancer!!!

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I couldn't agree more. I was disgnosed with sneaky LBC in March, had a mastectomy in April, 28 doses of radiation after. Just finished reconstruction last week, and on we go. I feel like I lost an entire year with doctor visits, treatments, surgeries and worry, but now life begins anew. I'm hanging onto all the good things I got from this experience (appreciating life, friends and family in an entirely new way) and grateful I threw all the ammo medically available at this sneaky beast. Oh no you don't, LBC. Not in THIS body!

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kandisn | @kandisn | Jan 2 11:33am
In reply to @leonielaw "I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1..." + (show)
@leonielaw

I had a double masectomy in April 2024 after my March 2024 diagnosis of stage 1 invasive Lobular BC. I was afraid that it would come back larger. Onco was shocked they found it via regular mammogram. They said it was 1.4 cm, but after surgery it was found to be 3.7 cm. In other words Lobular BC is a "Sneaky" cancer. I didn't want to live on pins & needles. I'm stressed enough trying to figure out How I even got BC. Was it something I did? Ate? Drank? Any answer would at clarity to my life. One thing is I have NO regrets having the bi-lateral masectomy. Just finished reconstruction & they look "normal". On meds still, glad no more mammogram.
Do the double masectomy- come out Swinging & Kicking Cancers Ass. Be Blessed my fellow sister in arms. We WILL beat cancer!!!

Jump to this post

Have decided to go with a lumpectomy and radiation. I hope I have made the right choice. It was a very hard decision. I am also waiting on a BRCA testing, if it comes up positive my surgery choice will change.

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1 reply
leonielaw | @leonielaw | Jan 2 12:08pm
In reply to @kandisn "Have decided to go with a lumpectomy and radiation. I hope I have made the right..." + (show)
@kandisn

Have decided to go with a lumpectomy and radiation. I hope I have made the right choice. It was a very hard decision. I am also waiting on a BRCA testing, if it comes up positive my surgery choice will change.

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Blessings to you, and stay strong.

REPLY
leonielaw | @leonielaw | Jan 2 12:21pm
In reply to @mir123 "I'm sorry you have been going through this, and hope you are doing well. If possible,..." + (show)
@mir123

I'm sorry you have been going through this, and hope you are doing well. If possible, try not to stress about what you "did" to get breast cancer. I gather age and genetics are the major obvious co-factor. (And we can't control either of these). Otherwise, there are numerous things that might have an effect, but this is far from conclusive. Maybe in the future there will be a known cause. But for now, I tell myself I have to live with the uncertainty and be glad of the treatment and support I have. At least that is my New Year's resolution! Wishing you all the best.

Jump to this post

I have an intense personality (Aries 🤣) and I have always laughed my way through all my other conditions (Lupus, Seizures, Osteoporosis, Raynauds, Tendinitis, etc.). Cancer will learn what they learned over 30 yrs as a Survivor - I'm a fighter. Made it thru law school & having a blast practicing. So- I am very positive- but some days when I sit in silence the questions pop up. I want to eat cleaner, reduce the libations, and begin Journaling again. I use to journal daily- but haven't since cancer. My therapist, friends, and family have become my journal. Yet I feel overwhelmed not Journaling - but still can't put pen to paper. I feel Stuck! Does anyone else feel that way? Feeling Blessed, happy with the outcome, love support group, love thar my life feels "my normal". Yet- sometimes I just feel "out of sorts".

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Jan 2 12:35pm
In reply to @leonielaw "I have an intense personality (Aries 🤣) and I have always laughed my way through all..." + (show)
@leonielaw

I have an intense personality (Aries 🤣) and I have always laughed my way through all my other conditions (Lupus, Seizures, Osteoporosis, Raynauds, Tendinitis, etc.). Cancer will learn what they learned over 30 yrs as a Survivor - I'm a fighter. Made it thru law school & having a blast practicing. So- I am very positive- but some days when I sit in silence the questions pop up. I want to eat cleaner, reduce the libations, and begin Journaling again. I use to journal daily- but haven't since cancer. My therapist, friends, and family have become my journal. Yet I feel overwhelmed not Journaling - but still can't put pen to paper. I feel Stuck! Does anyone else feel that way? Feeling Blessed, happy with the outcome, love support group, love thar my life feels "my normal". Yet- sometimes I just feel "out of sorts".

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A suggestion that has helped me continue keeping a journal--try just writing one line per day. I just re-read 2024 and it is a surprisingly good overview. Of course writing that one line might make you feel like writing more from time to time--and no need to hold back. When I can't write I also sometimes just doodle or paste in a picture or tiny collage. I like keeping a record, and it does help me. Any ideas what you might try in the new year? I was keeping mine on the computer but got a nice notebook for 2025 and am back to basics!

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