1. < Breast Cancer

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.

sharonandkathy | @sharonandkathy | Jun 16 4:25pm

Here I go again, wondering if my extreme tiredness will go away. Had Lumpectomy 3 1/2 weeks ago. The morning is better in A.M and then continues to drop around noon. The worst happens from 2 p.m. Has anyone else experienced this and if so, how long. Please let me know, Thanks

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2 replies
krin | @krin | Jun 15 3:29pm

I was diagnosed with stage 3 lobular 28 years ago after being told for 3 years that the lump was just a cyst since no cancer evident on mammogram. More women need to know about this cancer type & doctors need to be more aware too. After diagnosis I had mastectomy, chemo & radiation. Then participated in several clinical trials for estrogen blockers. It’s been rough, but I’m still kickin’! Stay positive, question your doctors, find a different one if you’re not comfortable (I did). You can handle this!

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1 reply
buckokey | @buckokey | Jun 15 12:21am
In reply to @luckbme "You deserve doctors you trust, and actually feel like they care. I'm in the midst of..." + (show)
@luckbme

You deserve doctors you trust, and actually feel like they care. I'm in the midst of changing my oncologist. I tried hard to give him every opportunity; but eventually had to admit he wasn't in it for me.

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Yes it’s very important to have a doctor you can feel comfortable with and trust. I wish you the best!

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luckbme | @luckbme | Jun 14 4:41pm
In reply to @buckokey "Well, being 78 I haven’t had an OB/GYN or pelvic exams for several years. My PCP..." + (show)
@buckokey

Well, being 78 I haven’t had an OB/GYN or pelvic exams for several years. My PCP is not “hands-on” and never checked breasts even though I had ductal cancer/lumpectomy in opposite breast over 24 years ago. Evidently doctors just accept radiologist report and it ends there—at least mine did! I am angry and have not talked with PCP directly. Trying to concentrate on now but it’s hard! Now oncology surgeon is wanting me to have genetic counseling but can’t get straight answers that it would be covered by Medicare/supplemental insurance. Very disheartening and frustrating.

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You deserve doctors you trust, and actually feel like they care. I'm in the midst of changing my oncologist. I tried hard to give him every opportunity; but eventually had to admit he wasn't in it for me.

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1 reply
buckokey | @buckokey | Jun 14 10:28am
In reply to @luckbme "I'm so sorry to hear your story. Ignoring an egg-sized lump? That doctor should have his..." + (show)
@luckbme

I'm so sorry to hear your story. Ignoring an egg-sized lump? That doctor should have his license taken away.

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Well, being 78 I haven’t had an OB/GYN or pelvic exams for several years. My PCP is not “hands-on” and never checked breasts even though I had ductal cancer/lumpectomy in opposite breast over 24 years ago. Evidently doctors just accept radiologist report and it ends there—at least mine did! I am angry and have not talked with PCP directly. Trying to concentrate on now but it’s hard! Now oncology surgeon is wanting me to have genetic counseling but can’t get straight answers that it would be covered by Medicare/supplemental insurance. Very disheartening and frustrating.

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1 reply
jkcares25 | @jkcares25 | Jun 12 8:55pm
In reply to @mir123 "These decisions can be difficult to make. Is the surgeon refusing to do additional surgery to..." + (show)
@mir123

These decisions can be difficult to make. Is the surgeon refusing to do additional surgery to clean up the margin? If so, it might be time for a second opinion. Actually I might first ask the radiation oncologist, who would be an authority on this. Do keep in touch and tell us what you decide.

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My FISH test came back negative so that was good news. The surgeon recommended they clean up the bad margin and if the pathology comes back good, I may not need radiation. Praying that's true and I can avoid radiation. Tomorrow is the re-surgery.

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sharonandkathy | @sharonandkathy | Jun 11 4:16pm
In reply to @llthomson "I have ILC stage 3. I had lumpectomy and finished radiation last September. I started Anastrozole..." + (show)
@llthomson

I have ILC stage 3. I had lumpectomy and finished radiation last September. I started Anastrozole last January so I have been on it for 1.5 years. I have arthritis and osteoporosis. Anastrozole makes both worse. My joints are very stiff when I wake. I found that walking 30 minutes a day helps a lot. I am trying to hold my osteoporosis in check by exercising and taking supplements. My numbers are stable with slight improvements. I am still active and can do most of what I was doing before. Good luck to you. Keep active and eat healthy.

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Thank you for your support

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luckbme | @luckbme | Jun 10 2:15pm
In reply to @buckokey "Yes I’m also told hard to detect—but I had an egg-sized lump and was told “nothing..." + (show)
@buckokey

Yes I’m also told hard to detect—but I had an egg-sized lump and was told “nothing to worry about”—until 15 months later when I was diagnosed! Just beginning long journey…letrozole, to shrink tumor then surgery. Hoping for lumpectomy instead of mastectomy. Angry that no one followed up sooner on this lump since I had lumpectomy on opposite breast 24 years ago! Healthcare is broken…

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I'm so sorry to hear your story. Ignoring an egg-sized lump? That doctor should have his license taken away.

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1 reply
buckokey | @buckokey | Jun 9 10:19am
In reply to @callalloo "1.5 to 2 mm is so tiny that it's impressive that it was detected. The cancer..." + (show)
@callalloo

1.5 to 2 mm is so tiny that it's impressive that it was detected. The cancer I had was estimated at 5 mm by mammo and ultrasound. And totally undetectable by physical exam. Thanks to the increases in precision technology that are saving lives.

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Yes I’m also told hard to detect—but I had an egg-sized lump and was told “nothing to worry about”—until 15 months later when I was diagnosed! Just beginning long journey…letrozole, to shrink tumor then surgery. Hoping for lumpectomy instead of mastectomy. Angry that no one followed up sooner on this lump since I had lumpectomy on opposite breast 24 years ago! Healthcare is broken…

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1 reply
marshgirl24 | @marshgirl24 | Jun 8 7:26pm
In reply to @sharonandkathy "I have ILC. Had lumpectomy 2 weeks ago. Saw an oncologist and she want to put..." + (show)
@sharonandkathy

I have ILC. Had lumpectomy 2 weeks ago. Saw an oncologist and she want to put me on Anastrozole. Anybody experiences are helpful.

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Hi,I too have had ILC. Lumpectomy in October. Radiation 3 wks in Dec. I've been on anastrozole for five months. Only recently have I had stiffness and pain in my legs. Really weird because I've never had that before. I'm 79 and I ride my bike some mornings. On other days I work out...rowing machine, etc. I think staying active helps along with a topical called Icy Hot. I'd like to work with this med as long as I can. Good luck to you! I have taken supplements for years, including glucosamine. We kind of have to dial things in as we go along, I think.

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