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.

Susan Manship Remy | @slmremy | Jul 31, 2022
In reply to @colleenyoung "@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you..." + (show)
@colleenyoung

@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you share more about your diagnoses?

I think @claudiamaria @ja5747 @marybe and @bowhunt1969 @cindylb @kszilvia @varalax @rarelybees2889 @nycoceans @lisman1408 @elsie37 @nobody may also want to join in.

What's you lobular breast cancer diagnosis? How are you today?

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After about 2 years of lumpectomies had an MRI that helped inform the decision to have bilateral mastectomy which was ILC stage 1
7 tumors on R
9 tumors on L (invasive )
10 lymph’s

I am doing well but for esophagitis with erosion.
Walk often & meditation too
Thanks

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 31, 2022
In reply to @slmremy "After about 2 years of lumpectomies had an MRI that helped inform the decision to have..." + (show)
@slmremy

After about 2 years of lumpectomies had an MRI that helped inform the decision to have bilateral mastectomy which was ILC stage 1
7 tumors on R
9 tumors on L (invasive )
10 lymph’s

I am doing well but for esophagitis with erosion.
Walk often & meditation too
Thanks

Jump to this post

@mjay, you really got something started here. I hope you've seen all the new messages from new and old members with lobular breast cancer. Thank you and well done!

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1 reply
windyshores | @windyshores | Jul 31, 2022
In reply to @lisakinpa "Hi Windyshores! For us “lobsters,” there’s a lot of discussion that centers around follow up as..." + (show)
@lisakinpa

Hi Windyshores! For us “lobsters,” there’s a lot of discussion that centers around follow up as we move forward in our journey because lobular can be “sneaky.”

My cancer team and I discussed alternating my annual mammogram with having a breast MRI but I decided to forgo the MRI for now because since I’ve been diagnosed, I’ve had two false positives.

I also have bloodwork every six months along with a breast exam and follow up with my breast surgeon every six months.

I’m assuming that schedule will change to yearly checkups I believe when I hit the five year mark. ♥️

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Like others on here I had bilateral mastectomies (no MRI's being done), and my doc doesn't do blood work. I am on Tymlos for osteoporosis after AI's for 5 years, and like many my age (71) have osteoarthritis, spinal stenosis etc. etc. so I am just not sure how metastasis would be detected.

Wishing the best for everyone!

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callalloo | @callalloo | Jul 31, 2022
In reply to @jkh "I was diagnosed with LCIS at age 49, took tamoxifen for 5 years. During that time..." + (show)
@jkh

I was diagnosed with LCIS at age 49, took tamoxifen for 5 years. During that time I developed external polyps on my uterus. I had a complete hysterectomy after 3 1/2 years of tamoxifen and then went into full blown menopause. The lobular breast cancer was discovered 9 years after I stopped taking tamoxifen, at age 63 through a yearly mammogram. It was discovered in the same (left breast) as the LCIS was discovered. I had a lumpectomy and 3 lymph nodes removed. The site where the lymph nodes were removed became infected. Not sure that it was healed well enough to start the radiation as I have had swelling and problems with lymphedema since. I have to look back in my records to be exact on the rest of my treatment. I wonder why I have trouble remembering the details but I suspect just due to the trauma of a cancer diagnosis. The cancer was invasive, size? 1.5-2mm? Oncotype score was, what they called, the grey area. It was left up to me as to have chemo or not. I choose no after I asked what the studies for someone who had lobular breast ca said. There was only one study that the Dr. Was aware of and it did not show any improvement in life expectancy. I started on anastrozole and after 2 years of lots of joint pain I went on exemestane. I still have what I call flare ups of joint pain, exhaustion and mild depression. I have a regular Yoga practice walk 3-4 miles regularly, eat a vegetarian diet and struggle mightily to lose any weight. I put on about 10-15 pounds after the cancer diagnosis and haven’t taken it off yet. But there is always a new day and I am very thankful for that!

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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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1 reply
callalloo | @callalloo | Jul 31, 2022
In reply to @lisakinpa "Hi Windyshores! For us “lobsters,” there’s a lot of discussion that centers around follow up as..." + (show)
@lisakinpa

Hi Windyshores! For us “lobsters,” there’s a lot of discussion that centers around follow up as we move forward in our journey because lobular can be “sneaky.”

My cancer team and I discussed alternating my annual mammogram with having a breast MRI but I decided to forgo the MRI for now because since I’ve been diagnosed, I’ve had two false positives.

I also have bloodwork every six months along with a breast exam and follow up with my breast surgeon every six months.

I’m assuming that schedule will change to yearly checkups I believe when I hit the five year mark. ♥️

Jump to this post

Were the false positives MRIs? I ask because I've only had mammograms and ultrasounds and reading that some others dealing with breast cancer are having MRIs made me wonder if I should lobby for an MRI instead.

REPLY
2 replies
lisakinpa | @lisakinpa | Jul 31, 2022
In reply to @callalloo "Were the false positives MRIs? I ask because I've only had mammograms and ultrasounds and reading..." + (show)
@callalloo

Were the false positives MRIs? I ask because I've only had mammograms and ultrasounds and reading that some others dealing with breast cancer are having MRIs made me wonder if I should lobby for an MRI instead.

Jump to this post

Yes, they were breast MRIs. The first was during my initial diagnosis. The breast MRI detected something suspicious in my healthy breast. After an ultrasound biopsy, the suspicious area proved benign.

The 2nd breast MRI came midway through my chemo treatment to see if there was improvement in my tumor size. Again the MRI saw suspicious activity in my healthy breast.

We immediately followed up with a mammogram and ultrasound but both couldn’t detect anything so I had a breast MRI biopsy which came back negative.

Breast MRIs are useful especially if one has dense breast tissue which I do not but they have a tendency to pick up everything which can be a problem.

I then decided to pass on having a yearly MRI. My breast surgeon and I agreed to having yearly 3D mammograms along with bloodwork and physical exams every six months.

It’s now been three years with no problems. ♥️

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KK57 | @kk57 | Jul 31, 2022

Understand your perspective, however, I’ve had ALH, then a DCIS with a combined IDC/ILC. So I actually like that it’s all in one place under breast cancer. I wonder if I am unique, or if there are others like me.

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jkh | @jkh | Aug 1, 2022
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.

Jump to this post

Oh boy. I think I had that really wrong. Not mm, cm. Bit of a difference 🙄🤦🏼‍♀️🤦🏼‍♀️

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jkh | @jkh | Aug 1, 2022
In reply to @slmremy "After about 2 years of lumpectomies had an MRI that helped inform the decision to have..." + (show)
@slmremy

After about 2 years of lumpectomies had an MRI that helped inform the decision to have bilateral mastectomy which was ILC stage 1
7 tumors on R
9 tumors on L (invasive )
10 lymph’s

I am doing well but for esophagitis with erosion.
Walk often & meditation too
Thanks

Jump to this post

Wow Susan. That is hard to wrap my brain around. So glad that MRI technology is around! A walking meditation is the best!!

REPLY
mjay | @mjay | Aug 9, 2022
In reply to @colleenyoung "@mjay, you really got something started here. I hope you've seen all the new messages from..." + (show)
@colleenyoung

@mjay, you really got something started here. I hope you've seen all the new messages from new and old members with lobular breast cancer. Thank you and well done!

Jump to this post

Thanks, Colleen. I feel we lobsters are a little bit of a unique group and the more specifics we can share, the better for all of us in the ILC category.

As for myself, I was on Letrazole for nearly a year and the joint pains were problematic. I also had concerns about becoming resistant to the Letrazole and have heard that Letrazole can bring back recurrences that are more difficult to treat...although I'm not sure of the accuracy of that statement. So I've just been switched to Tamoxifen, which is mostly for premenopausal women, which I am post, and which is not the preferred drug for ILC, so now I have new worries if I'm on the right drug. In addition, my genetic test showed a genetic risk for uterine/endometrial and ovarian cancer, which can be a side effect of Tamoxifen, albeit small, but I don't sleep easily knowing that. From what I've read, it takes about two years on Tamoxifen for uterine cancer to show up so hopefully this will just be a short-lived stint for me and then back to an AI. I'm 3 years out from lumpectomy and radiation, ILC Stage 1, Grade 3 pleomorphic, the trickiest of the tricky.

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