Lobular Breast Cancer: Let's share and support each other
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.
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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.
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4 ReactionsGood 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:)
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1 ReactionSo 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. ♥️
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1 ReactionMy 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.
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1 ReactionMay 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!
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1 ReactionThank you for the encouragement and prayers. I appreciate that you took the time to post a message.
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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4 ReactionsI’m sorry you’re going through this.
I was diagnosed with triple negative bc at 49 and I am now 68. I had a lumpectomy, chemo and radiation. You can do this. It can be overwhelming some days but your feelings are valid! So keep plugging away and take one day at a time. Plus they’ve come a long way with the treatments. Be well.
And prayers work ?
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2 ReactionsI have been diagnosed with Invasive Lobular Carcinoma (ILC) also found in Lymph nodes. I am seeking a second and possibly third opinion. If anyone has suggestions, I would appreciate the input.
Obviously MAYO is a consideration but I live in Michigan (MI). If anyone knows of any ILC specialists in the the MI area, I would appreciate the information.
I am willing to travel to get the best care, so please don't hold back on your recommendations.
Thank you and my best to all on their journey.
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1 ReactionThank you for the sanity check. I appreciate your input. I am sorry you also went thru this as well.
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