Stage 1 lobular breast cancer, anyone no treatment after surgery?

Posted by wyowyld @wyowyld, Feb 23 11:49am

I am one week out on my lumpectomy and according to recent statistics, have a 5 to 7% chance of recurrence in the next five years with this type of cancer without treatment. I cannot imagine putting my body through all the side effects of radiation and AI treatment when I have a 95% chance of nothing happening. Apparently with this cancer the risk is late recurrence, after 10 years. I am so torn and stressed out by the decision I have to make. They asked me to make it in the next two weeks. Am I the only one who has considered not taking any other treatment after surgery because I honestly believe there will be big advancements in that period of time?

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

marshgirl24 | @marshgirl24 | Aug 23 8:52am

Thanks olivia7850 for all the info. Lobular has been lumped with ductal in the past which skews the statistics. I’m so glad that physicians are beginning to study them as two disease processes. This weeI had my breast MRI, which is preferred by many doctors. But that machine is so loud! I was so glad to leave it and was relieved by the results. Let’s all continue to educate ourselves about this disease, which can progress under the radar screen. I have two daughters and my hope is that if they are diagnosed at some time, they will have a lot of options.

sharonandkathy | @sharonandkathy | Aug 24 6:51pm

In reply to @wyowyld "I looked for Dr. Bodia on Google and could not find anything. Would love to look..." + (show)

Dr ernie bodai

wyowyld | @wyowyld | Aug 25 8:24pm

In reply to @sharonandkathy "Dr ernie bodai Sorry I did not give you the full info. He is amazing" + (show)

Thank you!!!

wyowyld | @wyowyld | Aug 25 8:27pm

In reply to @olivia7850 "Hello Wyowyld: Have you tried googling something like "invasive lobular carcinoma grade 1 risk of recurrence"?..." + (show)

@olivia7850

Hello Wyowyld:

Have you tried googling something like "invasive lobular carcinoma grade 1 risk of recurrence"? The articles and info that results from the search may be helpful.

I am metastatic ILC triple negative. I was first diagnosed as stage 3B despite regular mammos.

It's helpful to understand how ILC grows--by way of thin strands or webs that are difficult to image because they are so tiny.

Another reason is that in a PET-CT scan, the glucose based tracer (FDG) does not stick to ILC so it is not caught until the strands meet up and form a tumor. By then it's too late--there can a tumor all of a sudden.

Currently a new tracer called FAPi (Fibroblast Activation Protein inhibitor) is in third stage clinical trials at a few cancer centers (UCLA, UCSF and Mayo, maybe others) and the research results are very promising. As I understand it, the FAPi tracer sticks to the fibroblasts on the outside of cancer cells in difficult-to-image cancers such as ILC and others cancers.

There is a growing body of research on ILC. If you are hormone positive and/or HER2 positive you have many more treatment options should you choose that option.

However, the ASCO and NCCN treatment guidelines, the treatment 'bible' for oncologists, tends to treat ILC like other breast cancers. But ILC is not the same as other breast cancers as you will learn from medical journal articles.

My message is to educate yourself, read about ILC--not only from messages like these--but from medical journal articles, current articles since 2020. Yes, some articles contain chemistry and statistics--you can skip that if those matters are not your thing. Read the abstract (summary) and the conclusions section. Write down your questions for your doctor. Ask lots of questions. Consider obtaining a second opinion. Take control of your care. Be a self-advocate for whatever you decide. You hold the power of decision. Your body, your decision. You can do all of these things in a positive, open partnership with your oncologist.

Here's wishing you the very best!

Jump to this post

Olivia thank you sincerely for your very thoughtful response. I have done extensive research and appreciated hearing about a few resources I have not seen. You are right, it is my body and I am very comfortable with my decision! I wish you all the best, hope you are living the best life possible. Hugs and love, Wyowyld

mimig77 | @mimig77 | Aug 25 10:32pm

I am a month past Stage 1 ILC lumpectomy,age 77.I also had LCIS in the other side about 5 years ago with no follow-up treatment. I am opting this time for 3 weeks radiation and Anastrozole (started today, radiation in Sept.)I think the word “invasive” affected me, and not wanting to even go through,hopefully, another round of biopsy, surgery,etc in my remaining spry years. The decision is very personal and specific to so many bio markers. I wish you well in your own decisions.

olivia7850 | @olivia7850 | Aug 26 11:03am

In reply to @wyowyld "Olivia thank you sincerely for your very thoughtful response. I have done extensive research and appreciated..." + (show)

Here's wishing all of the best back to you! Olivia7850

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