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.

lisakinpa | @lisakinpa | Dec 7, 2022

Perhaps your doctors meant having radiation for 4-6 weeks? I’ve never heard of having radiation for 4-6 months? ♥️

Sue Ellen Murrey | @semurrey | Dec 6, 2022

I wish I could offer more specifics but I won't see a radiation oncologist until 12/19 but the surgeon said I could expect daily radiation treatments for 4-6 months depending on final analysis etc. Dana Farber in Boston does not offer proton beam radiation which surprises me but MGH Cancer also in Boston does have the proton beam. From the research I've done which many here have also mentioned is that proton beam seems to do the least damage to any nearby healthy tissue so I'm going to ask if I am a candidate. Let us know how your first radiation consult goes - I would think MD Anderson would have proton beam?? Regarding the hormone blocking it seems since I am post menopausal they would start with the AI's vs tamoxifen. Best of luck next week xo

eaglewings22 | @eaglewings22 | Dec 6, 2022

In reply to @semurrey "May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just..." + (show)

Sue Ellen, what options were you offered re: radiation? I’m meeting with the radiation oncologist next week and want to request the shortest, least invasive option that still kills the cancer. Grandbaby expected mid March! That may not even be an option. I have ILC Stg 1 b and will have a lumpectomy (2 cm x 1cm by 1.5 cm) and immediate reconstruction at MD Anderson, followed by radiation. I’m really nervous about all of it! Any possible options that I can request re: radiation would be appreciated. I dread the hormone-blocking meds as well…Thanks for your sharing your story! I hope all of it goes well for you!❤️

rinar001 | @rinar001 | Dec 6, 2022

In reply to @kwatson "I have been diagnosed with Invasive Lobular Carcinoma (ILC) also found in Lymph nodes. I am..." + (show)

I have read that the University of Pittsburgh and the Fred Hutchinson Cancer Center in Seattle are leading research for LBC. Sorry I don’t know more, but you might want to look them up.

Sue Ellen Murrey | @semurrey | Dec 6, 2022

In reply to @crichey "New to journey. 9.29.22 i went for annual mammogram. I have elected for 3d since it..." + (show)

Good luck on your oncology appt tomorrow! Hang in there as I totally hear you - it is so hard to figure what a priority is right now - but your health is a big one so be good to yourself! I had lumpectomy on 11/30 for ILC and waiting to meet with oncologist on 12/15 to figure out plan. The waiting is just so hard and a stressful job doesn't help. I'm going to look into medical leave as I took remaining PTO for lumpectomy and week after. One day at a time:)

lisakinpa | @lisakinpa | Dec 6, 2022

In reply to @semurrey "May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just..." + (show)

So glad to hear that margins were clear as well as lymph nodes.

Radiation is the standard protocol for most all those who choose to have a lumpectomy. I had 20 rounds and did well.

I’ve been on an AI for over three years now and I’ve had very little side effects.

I was diagnosed at 60 and now I’m 64. ♥️

maggieb892 | @maggieb892 | Dec 5, 2022

In reply to @semurrey "May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just..." + (show)

My ultrasound following mammo showed the lobular tumor. A biopsy confirmed it and it was a rather large oblong shape 2 x 3 cm. I had chemo before a mastectomy, then radiation and more chemo. I started chemo in July of 21 and finished August of this year. My cancer was stage 2 based of its size. I had one lymph node removed and it was not cancerous. I did not seek a second opinion regarding radiation. I just wanted to get finished! I did read about treatments and radiation was suggested because the pathology showed live tumor cells in the removed tissue.
My cancer was HER 2 + and hormone negative so no anti-hormones for me.
Good luck with your treatments, I feared radiation the most and was surprised that it seemed to be the easiest to endure. It has tightened my skin and may cause issues later, but I'm living each day as it comes. Who knows what the future will bring anyway.

Sue Ellen Murrey | @semurrey | Dec 5, 2022

In reply to @maggieb892 "This sure is a sneaky cancer! I also found what I thought was a lump, only..." + (show)

May I ask what your "treatments" were? I had a lumpectomy for ILC 11/30 and just found out negative node - very relieved! I'm 57yrs - 1.8 cm and grade 2 with margins positive for atypical which I guess is fine as surgeon said no need for additional surgery. Next appt in 2 weeks with a radiation oncologist and should have oncotype tests back by then. Did you get 2 opinions regarding radiation. I'm near Boston so I have a few options which is great but all so confusing as it the docs make it sound like it is very routine. I dread the anti hormone after reading about side effects but so glad to hear you are hanging in! Any advice appreciated. Thanks so much!

kwatson | @kwatson | Dec 1, 2022

Thank you for the encouragement and prayers. I appreciate that you took the time to post a message.

orchardgirl54 | @orchardgirl54 | Nov 30, 2022

In reply to @kwatson "I have been diagnosed with Invasive Lobular Carcinoma (ILC) also found in Lymph nodes. I am..." + (show)

I’m sorry you’re going through this….
I don’t have a doctor recommendation but I will tell you they have come a long way with treating bc. I had a pretty aggressive bc 20 years ago. I’m going through.
You can do this!
I’m sending you prayers for courage and peace.

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