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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.

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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)
Profile picture for callalloo @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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Oh boy. I think I had that really wrong. Not mm, cm. Bit of a difference 🙄🤦🏼‍♀️🤦🏼‍♀️

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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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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)
Profile picture for callalloo @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.

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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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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)
Profile picture for lisakinpa @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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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.

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2 replies
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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)
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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.

REPLY
2 replies
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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)
Profile picture for lisakinpa @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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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)
Profile picture for Susan Manship Remy @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

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@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
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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)
Profile picture for Colleen Young, Connect Director @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
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Susan Manship Remy | @slmremy | Jul 31, 2022

I come from a similar history
ILC 2013 lumpectomy Right

Turns out had in both breasts and by 2015 I had bil Mx and Hysterectomy (found unusual tumors in the ovaries). I declined any chemo or tamoxifens because studies did not demonstrate much improved longevity. It is debatable certainly but it was under 20%. 2nd opinion at Moffitt explained Lobular CA doesn’t visualize as easily as others, so I opted for the surgical option. I had my implants removed after 5 years. A plastic surgeon gave me a soft appearance - it helps this nearly 70 yo
Thanks for sharing

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jkh | @jkh | Jul 31, 2022
In reply to @cindylb "@jkh Sorry about your struggles. I can relate to much of your post. I 'thought' I'd..." + (show)
Profile picture for cindylb @cindylb

@jkh Sorry about your struggles. I can relate to much of your post. I 'thought' I'd beat the cancer struggle when I was diagnosed with only Stage 1 cancer. It was a good sign but I too developed lymphedema and had a bout with cellulitis and went into sepsis about 3 years ago. A very scary and unexpected situation. I struggle daily with the lymphedema and have joined the Lymphedema Action Network where they have multiple video presentations and informative emails. I highly recommend signing up for that. I opted not to use the AI drugs - they all had severe side effects for me but I am quite a bit older than you and was diagnosed about 5 years later in life than you. I guess cancer always finds a way of reminding you it's there no matter what you do so we have to try to make peace with that (not easy). Interestingly, I have many of the 'side effects' of the AI's now anyway due to aging....in fact my blood work shows I have little, if any estrogen, no progesterone (guess I never had much of that to being with) and little testosterone....so no hormones to feed the cancer. However, not having those hormones means - weight gain, depression, aching joints and for me a complete drying of my body (eyes, hair, mouth and....unfortunately my vagina - all of which presents challenges). But, I'm here and so far no return of the cancer so I'm thankful for that. Hugs to you. It sounds like a lot to cope with day to day.

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Oh how I relate to the drying up! I even had a procedure called the Monalisa to bring moisture back to my vagina. It is a laser treatment. It was successful but only temporary. I suppose when you keep taking medicine to block the hormones it was inevitable. Thanks for sharing a bit of your story.

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