Help so overwhelmed
I have just been diagnosed with invasive lobular carcinoma in my left breast. I have had my consultation with my surgeon and he suggests I get a lumpectomy and then radiation. I have a second opinion visit set up but after speaking with my children they were set on me getting a double mastectomy. I emailed him and he met with me again and we talked more and my son facetimed during visit. He made me feel more comfortable with this plan. Has anyone had this done and what was your outcome. He informed me that mine is small and the recourance rate is the same for the recommended course as getting mastectomy. Please help
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My dr suggested the same thing. I have the same cancer you do. Mine however is bigger, 5.9cm and they think there's lymph node involvement. I meet with him today to discuss next steps and I'm hoping to get a surgery date today. I am ready to get rid of this beast in my chest. He told me that it's possible I will having chemo first to shrink that bad boy and the lymph nodes then surgery, then rads and possibly more chemo, then those AI drugs. The diagnostic mammo and ultrasound showed the tumor to be 3mm but the MRI showed a much different size, so hopefully your dr will do an MRI to get a much clearer picture of the size and involvement within the breast, and if there are "seeds" or precancerous cells in the other breast. I am also going to have a double mastectomy.
You got this though…and you can always reach out to me if you need to talk. :)
Karen P
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@scissorhnz It sounds like you're doing exactly what you should be doing—getting information, involving your loved ones, asking questions, and seeking a second opinion. The fact that your surgeon took the time to meet with you again and include your son in the conversation shows good care.
You're facing a really personal decision, and it's completely normal to feel pulled in different directions. Your surgeon's information about recurrence rates is important—when the data shows similar outcomes, the "right" choice often comes down to what will give you the most peace of mind going forward.
Some things that might help as you think this through:
- How do you feel about ongoing surveillance vs. more extensive surgery upfront?
- What does recovery look like for each option given your life circumstances?
- What will help you feel most confident that you've done everything you can?
There's no wrong answer here—only what's right for your body, your life, and your peace of mind.
@karencee1962 Thank you for sharing your experience and offering support. It sounds like you're dealing with a complex situation, and I'm glad you're getting comprehensive imaging and a clear treatment plan. Wishing you strength as you move forward.
This community is here for you 😍 Many members have walked similar paths and can share their experiences with different treatment decisions. You're not alone in this.
Take care of yourselves, and please keep us updated on how you're doing.
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ScissorHnz, I am 4 months ahead of where you are now. Stage 2 (only cause I had 2 tumors, though not large), grade 1, left breast. I chose lumpectomy on left side only, then had 20 sessions (4 weeks) of radiation. The last 4 radiation treatments were super boosters. The only thing I would have changed is to have a cosmetic surgeon to do his work at the same time as tumor removal. The tumors were at "3 o'clock on my boob", this left my nipple facing half way between front and side AND I am left handed, so this is my primary side. My arm movement rubs against my nipple. Now I will be forced to go to cosmetic surgeon, as it is quiet painful. I sailed thru with no problems. You will be swollen after surgery so have plenty of small/medium ice packs ready (I actually used frozen peas, over and over much cheaper). And radiation- is not bad or humiliating really and truly. Kindest, most comforting therapists ever. There is an emotional side to this!!! This is your body (not your son's), do what you feel is best for your physical AND mental health.
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I am stage 1 Invasive Lobular Carcinoma DX on 10/1 (2 days before my wedding) YES it is such a personal decision and survival outcomes are the same with lumpectomy and Double M. I chose Double Mastectomy (surgery today) for a few reasons mainly I dont want the worry of future testing and concerns that may arise when having those the rest of my life. It is piece of mind for me and that was the basis of my decision. BUT there is no right or wrong here so go with your gut and your doctors recco. And it’s awesome your family is involved but at the end of the day it’s your body, your diagnosis and your future with this diagnosis so you have to do what YOU want. Good luck and God Bless!
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@cococoppock - Welcome to the BCO community, and thank you for sharing your story with us. What an emotional time that must have been, being diagnosed just before your wedding, and now going through surgery.
When you feel up to it, please let us know how you’re doing after surgery. You might also like to join our November Surgery Support Group, where you'll meet others going through surgery at the same time.
We’re thinking of you and wishing you a smooth recovery ahead.
Sincerely,
The Mods
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I have ILC and am getting Bilateral Mx friday 11-7 2025 and begin recon that day with tissue expanders. It is scary. Coco, congratulations on your wedding, and we hope to hear how you are doing, just as soon as you feel like sharing. Good luck!!! Kind regards and Real Bear Hugs….. or at least those Real Big Air Hugs until you are all well<><>
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@cococoppock Just checking in on you — how did your surgery go and how are you recovering? We're thinking of you!
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@scissorhnz I have ILC and I had to make a decision 6 years ago. My decision to have a BMX was due to my more advanced stage, BMX is not without its downsides. I was not one of the lucky ones and still have issues with lymphedema and pain. Recovery was long and difficult, but I know it was the right thing for me.
I’m glad you are taking time to make your decision and get a second opinion. Taking time to decide is very important. My breast surgeon was a wonderful woman who gave me wise counsel to not rush my decision. In the end, I chose chemo, BMX, rads and estrogen suppression meds on the advice of my ONC. It feels like a good choice.
My sister had a smaller ILC and was able to choose a lumpectomy and radiation. She has been cancer free for over 10 years now. I remember feeling concerned for my sister when she decided not to have a mastectomy like my mother had. (This was before the new research was available that showed the benefits of a lumpectomy.)I imagine your children feel the same way now as I did about my sister. Needless to say, knowing what I know now, I’m glad my sister was able to avoid the problems that a mastectomy can bring, and I’m glad I didn’t try to persuade her to do a mastectomy.
My mother had a single MX and was cancer free for 30 years and then had the other breast removed after they found several ILC. Mom took Anastrozole for 5 years and has been off the meds for over a year and is doing well. Mom didn’t have the option of lumpectomy because that was not the standard of care when she was first diagnosed. After her recurrence, having the second surgery made sense and gave her peace of mind.
There is no right or wrong decision, there is only what is right for YOU, so take your time to feel really comfortable with your choice. Whatever you choose, I wish you a speedy and easy recovery.
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