Lobular Breast Cancer: Let's share and support each other

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

ksmitty | @ksmitty | Jan 6 8:55am

In reply to @staceycholmes99 "Hi, I'm 52 and was diagnosed with stage 1 ILC in my left breast. After a..." + (show)

Hello, I’m 55 and was diagnosed the day before thanksgiving with lobular breast cancer. Doc said the thought it would be stage 1 but the MRI showed it much bigger than expected. It’s 5ml, so stage 2. I’m also hormone positive and HER2 negative. I meet with the chemo doc tomorrow. I’ll have 6 rounds of chemo then a mastectomy. I’m probably going to go ahead and just do both so I (hopefully) won’t have to go through this again. Any thoughts on this? No one has even said “radiation” yet.
I have not been tired nor do I have any symptoms at all. I was absolutely astonished when I was diagnosed.
I’m thanking God every day that it was picked up on the MRI and for all the advances made in breast cancer treatment.

lilacs777 | @lilacs777 | Jan 6 9:53am

@staceycholmes99 MRI often overestimates size so there is still hope that the actual size IRL is smaller. If its visible on ultrasound, you can ask them to correlate to that to see among all the imaging what may be the real size. But unfortunately they won't really know until after surgery, that is the only real way to get the answer. Lumpectomy is always trickier with lobular b/c they can't see it well on imaging and the goofy way it grows.

julygirl08 | @julygirl08 | Jan 9 8:03pm

In reply to @sedonadreaming "Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with..." + (show)

@sedonadreaming

Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with the results of MRI, node ultrasound, genetic breast marker panel, I am finding myself less and less confident that I would ever find peace with a lumpectomy and combine that with my aversion to radiation, I am left exploring double mastectomy (because I am not doing one and then finding out later that I need to do the other).

Why is this so darn hard? I had convinced myself to just suck it up and do the lumpectomy because it's easier recovery and "radiation should be pretty easy"...easy to say for someone who is not having to contemplate it. The surgeon said lumpectomy would absolutely be an option and that if I decided anything "crazy" he would tell me, but supports my decision. What is "crazy"?

Today I've spun 180 degrees. My gut just keeps telling me that the correct move is just to free myself of the most breast tissue I can, even though it's not a guarantee because to do less would never buy me peace of mind.

Drivers for this radical change in thinking stem from not wanting to ever go through this again, if at all possible, fear that ILC will affect my left breast, if it hasn't already (because why would I believe anything the imaging that missed it in the right for so many years states), fear of doing lumpectomy/radiation and suffering long-term effects from the treatment, another missed tumor that metastasizes to far off organs like the GI tract or peritoneum, distrust that despite post-lumpectomy treatment, that there was missed cancer left lurking, considering what my state of health may be in 5-10 years when I might face mastectomy if there's a recurrence (no way to know, but it did enter my mind). Pros for lumpectomy, in my mind, just amount to less recovery time and less life disruption at this moment in time. The cons seem to outweigh the pros for me, when I think it through, despite the relatively non-statistical difference in life expectancy/recurrence from one surgery to the other (based on the small groups that have been studied as compared to other types of breast cancer).

As I was busy convincing myself of my newfound decision to lock onto bilateral mastectomy with immediate reconstruction (if even a possibility for me), I was flooded with a heavy dose of guilt...guilt for considering removal of the both breasts, guilt for considering symmetry in the equation since I don't want to go flat...how vain of me...guilt at the though of the inconvenience it would cause my husband (though he wouldn't agree) and his work routines, guilt for the thought of creating financial stress for my decision (cost of life in my mind vs money cost), etc, etc. Am I special in my level of guilt I feel for any decision I make or is this a completely normal phenomenon? Pros to mastectomy for me include a bigger peace-of-mind that I did everything I could up front to get rid of the source or potential source, possibility of maintaining some sense of symmetry, get it done and move on. Cons could be a plethora of repeated surgery and possible complications/infection, downtime from work, longer recovery.

So, with the cons more than the pros for my decision of mastectomy, why does it still feel like the right choice? I just don't see either choice as having a pro list that would outweigh the cons in the end.

Talk to me! I know some of you have been here.

Jump to this post

I feel as though I could have written this post myself. I too am at a crossroads. I had an unsuccessful lumpectomy and had positive margins. I have Stage 1 cancer - invasive ductal and invasive lobular and DCIS and LCIS in one breast. I am now scheduled for a unilateral mastectomy but the more I read about LCIS, the more I worry about recurrence. I have very dense breast and have the fear that future cancer could be missed. Even this cancer did not appear on my mammogram. I've spoken to a few women and they all opted for a bilateral mastectomy - for peace of mind of not worrying about mammograms, ultrasounds, and biopsies.

kandisn | @kandisn | Jan 10 5:47pm

I have recently been diagnosed with stage 1 lobular cancer. I had an MRI that showed on cancer in lymph nodes or chest wall. I will have a lumpectomy on Jan. 22nd. Then after healing will do radiology. Hope everything goes well. I just want together this over with. All my Drs. Said it was treatable, is breast cancer ever curable?

nancypesto | @nancypesto | Jan 11 8:03pm

I have have ILC stage 2 and will have surgery on January 21 followed by 4 weeks of radiation. My prognosis is good. I've heard I need a breast support pillow and a non-underwire bra for post surgery. Does anyone have any other suggestions on how I should prepare for surgery and radition? Thank you.

alibee | @alibee | Jan 11 8:53pm

In reply to @nancypesto "I have have ILC stage 2 and will have surgery on January 21 followed by 4..." + (show)

Hi! Following surgery, you’ll want clothing up top that’s easy to slip in and out of (ie buttons or zippers!) as it’s difficult to reach your arm up to slip something over your head. I hadn’t thought of this and struggled! Also a calendula cream once you start radiation. I used a product from My Girls, but there’s probably others out there. Go easy on yourself, rest when you need to, and eat healthy foods. All the best with your journey!

engelwags | @engelwags | 6 days ago

In reply to @nancypesto "I have have ILC stage 2 and will have surgery on January 21 followed by 4..." + (show)

Along with the other suggestions, I'd add Mederma for your skin during/following radiation. And if your skin still feels irritated, don't be shy about asking your R/O for a steroid cream. It works wonders.

Good luck!

mimi2015 | @mimi2015 | 5 days ago

A registered dietitian recommended I eat lots of protein during radiation treatment and afterwards. Be kind to yourself, rest, walk outside if possible, think on things are kind and things that make you smile. You can do it. Blessings

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @ksmitty "Hello, I’m 55 and was diagnosed the day before thanksgiving with lobular breast cancer. Doc said..." + (show)

Hi @ksmitty, have you started chemotherapy now? How are you doing?

ksmitty | @ksmitty | 4 days ago

Hey! At my last oncologist appointment, she said that they did more testing and that my cancer is NOT her2 positive after all so I may not have to get chemo!! I still may, they’re doing an oncotype (I think that’s the name:) and I go back at the end of the month to see if I will need chemo or if I will do hormone therapy. Thank you so much for checking on me! ♥️

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