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.

casbc | @casbc | Jan 28 8:20am

Thanks. All good points to consider. I live in S. Florida and since Lobular Carcinoma is at the bottom of the research list, I am looking to consult someone who might be more on the edge of the research.

Laurie, Volunteer Mentor | @roch | Jan 28 7:57am

In reply to @casbc "How does one find the top Invasive Lobular Carcinoma Doctor in the USA?" + (show)

casbc | @casbc

All of us want to have the best and there are many excellent doctors. Luckily I live in Rochester, MN so my choice was easy.

If I had to pick someone at different locations, here are few things I would consider:

1. It is not just one doctor, you want to go to a clinic that provides a team that coordinates your care; oncologist, surgeon, radiologist, etc…
2. Location, though you may be willing to go anywhere for care, think about logistics. If just starting treatment it is many appoints and follow up. Want to go somewhere that is convenient.
3. Insurance, once select a few to follow up on, make sure they take your insurance.
4. Wait time for first appointment, some places are very busy.
5. It is OK to get 2 opinion.. If see one doctor and want to get 2nd opinion, it is OK.

American cancer society web site has article that might help:
https://www.cancer.org/cancer/managing-cancer/finding-care/where-to-find-cancer-care/choosing-a-cancer-doctor.html#:~:text=Choose%20a%20doctor%20who%20has,or%20accepts%20your%20health%20insurance.
Laurie

casbc | @casbc | Jan 27 6:00pm

How does one find the top Invasive Lobular Carcinoma Doctor in the USA?

maggieb892 | @maggieb892 | Jan 19 7:32pm

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

My cancer was invasive lobular, HER2 positive, hormone negative. My oncologist told me that women are happy -with their decision once they make it. I'm not so sure. I opted for a single mastectomy and reconstruction. I re-thought this decision occasionally but once everything was done, I wondered If I really needed the reconstruction. I did not have the option of a lumpectomy though. I was 75 when I had to make my decision. That was 2 years ago. We all have decisions to make everyday. Think about where you are in your live. Once you make your decision, embrace it as the best one you could make.

sedonadreaming | @sedonadreaming | Jan 19 12:08pm

Sue Ellen, My scenario is same as yours, but I don't want radiation. I also don't want to have to go through with this again, if I can do everything in my power up front. I am not good with "wait and see" as it relates to this topic. I know it's not a guarantee to have mastectomy, but in my mind/emotionally, getting rid of the breast tissue in its largest portion, goes a long way toward decreasing my anxiety about recurrence...lurking masses that previously never showed up on any imaging, despite having 3D mammos every year for several years. The MRI report stated the tumor in the right breast, large clump of cysts in proximity ("probably benign") and left breast with several oval masses "probably benign, recommend MRI again in 6 months". The word "probably" leaves me no consolation. I suppose many might think I am looking at this as overkill, but the reasons for me are many, including having watched a very good friend die a miserable and painful death from peritoneal cancer and know that ILC has a propensity for the peritoneum, bones, along with GI tract if it decides to show up and live elsewhere. Some people are willing to roll the dice. I am not. Now, might the plastics guy talk me into a single? Maybe. I won't close my mind to it, but my inclination/spidey-senses are telling me to do the double.

Sue Ellen Murrey | @semurrey | Jan 19 11:01am

Has anyone had experience is asking for liquid biopsy or contract enhanced mammo. I was disappointed as at my one year out ILC (lumpectomy , 19 radiation, letrozole) appt with onco, she couldn't be bothered to answer either of these questions and this is at Dana Farber, Boston. In Boston I do know that Beth Israel offers CEM and while MRI the goldstandard especially for use dense breasters but CEM is a cheaper, often more approved by insurance option. I believe Signatera is good for liquid biopsy but not sure how to find out more! Any thoughts? xo

Sue Ellen Murrey | @semurrey | Jan 19 10:56am

In reply to @sedonadreaming "Thank you for your kind words. I am 58; soon to be 59 and never thought..." + (show)

What did your MRI report? I'm also 58yrs old and one year out from stage 1A, grade 2 ILC in right breast (easier in terms of radiation) - just shy of 2cm - prob misssed due to very dense breasts. I chose Lumpectomy (at MGH and Dana Farber) as studies showed no upside in masctemomy and a mastectomy seemed overkill at this point. I'm very happy with my decision and I will advocate for alternating mammo and MRI - ILC if mets it usually not within 5 yrs and typically not contrabreast. Good luck!

cobb | @cobb | Jan 19 10:12am

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

@sedonadreaming

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

Jump to this post

Regarding your aversion to radiation, my question is whether you have investigated the possibility of proton radiation. I have ILC, I had a lumpectomy , and spoke to my radiation oncologist. The photon oncologist recommended 4 to 5 weeks of daily radiation. I then scheduled an appointment with a proton radiation oncologist who suggested that two weeks of radiation was all that was needed. I elected to do that. I also used Mepitel film to cut down on any potential radiation dermatitis. Radiation was the easiest part of this journey. I also elected to do the radiation because I Wasn’t sure if I would be able to handle the aromatase inhibitors for a number of different personal reasons. I ultimately decided not to use the AI and having the radiation cut down my risk of recurrence by the same 50% that aromatase inhibitors would do. I hope this helps.

bordergrandma | @bordergrandma | Jan 18 10:41pm

In reply to @sedonadreaming "Thank you for your kind words. I am 58; soon to be 59 and never thought..." + (show)

Thank you so much. I initially was geared up to just do lumpectomy and get it over with, until breast MRI found another spot and biopsy confirmed multi-focal second ILC tumor. Banner’s Cancer Board determined I could still do lumpectomy if I was “highly motivated” for that, but by then had researched ILC, had spoken to my sister ( 11 years older than I) who voiced while she did not regret initial lumpectomy decision, when her ductal recurred 8 yrs later and she had to have the mastectomy, but she regretted not having pushed to do the double then, as the anxiety with ongoing surveillance is gets worse every year: mammo -> ultrasound-> biopsy which thus far all negative but tough none the less. Lumpectomy would have meant mandatory radiation and was playing the odds that pathology would at worst require chemo not chemo+radiation. . Making a note to ask my Onco your question in re to recurrence of ILC in other organs. My sense for me based on all my #s is risk is low and not made significantly lower by the preventative 5 years of AI that seems to be the pro-forma tx treatment rec post surgery, regardless of the BC type.

sedonadreaming | @sedonadreaming | Jan 18 9:32pm

Thank you for your kind words. I am 58; soon to be 59 and never thought such a choice about a body part would be so harrowing.

I think one question, that I’ve not found an answer to, is regarding the prevalence to which this stealth cancer finds a new home in other organs ( in pts with ILC breast cancer) and what the morbidity/mortality is for that aspect. We only hear the stats that support the breasts (no pun intended, but still chuckle). These are questions that would haunt me if I do lumpectomy, I just know it.

Congrats on 50 years! I have another 15 till I get there. I wish you and your husband many more years of happiness and health.