If this is your first time here, you may want to play catch up. You can start with my post “Double Helix DNA Dilemma”. If you’d like the deeper dive, then you can then jump to to my previous “21 Gene Salute” post.
Since my recent diagnosis of LCIS (Lobular Carcinoma In Situ), I’ve gotten quite an education. I have done my level-best to avoid doing any self-diagnosing using AI or Google as my guide, but I can use the internet to get real life numbers. I have done that using multiple platforms. The numbers seem consistent.
Turns out you have to be one of the “lucky” ones to actually find this elusive diagnosis; it isn’t easily found with routine screening. For context, routine screening (according to most standards of care and your insurance company) generally means the following:
FOR THOSE WITH NO PREVIOUS FAMILY HISTORY:
Starting at age 40, women should begin getting a mammogram once every two years. This is a more proactive approach than previously, when it was simply a soft recommendation to begin anywhere between the ages of 40-50.
Got dense breasts? The official recommendations do not change. However, my physician (wisely) prescribed an ultrasound to be done in tandem. While the mammogram can be quite uncomfortable, especially if you have breast implants, the ultrasound (sonogram) is totally painless and can pick up things the mammo simply cannot.
I have done the recommended mammogram and sonogram each and every year. In the last decade or so, I decided to add a Breast MRI into the mix. This procedure is not indicated for any woman without increased risk. Why did I push for it? I was told my paternal grandmother had Breast Cancer later in life (and survived). That was reason enough for me.
Each and every year, my insurance company denied this procedure, despite this family history. My doctor would submit the paperwork in appeal and then had to get on the phone for a peer-to-peer review. Each and every time. One year, they just flat out denied this super-important diagnostic test. I was prepared to pay out-of-pocket. That’s how important it was to me.
Why add a breast MRI to your screenings? The short answer is that this test picked up my LCIS, where the mammogram and sonograms did not. Who should fight for this and why? Well, I think we all should. Here’s why.
MRIs can find smaller lesionsMRI’s sensitivity is higher, making it better at finding small, early-stage cancers that might be obscured by dense breast tissue in mammograms.
Extent of Cancer:More detailed information about the size and location of a tumor, including its spread to the nipple, skin, chest wall, or other areas of the breast can be found with an MRI
Lymph Node Metastasis:MRI can detect cancer cells in lymph nodes, which may be an indication that the Cancer has spread to other surrrounding areas
Silicone Implant RuptureA silicone rupture can be virtually undetectable as the material holds its shape. MRI is particularly helpful in evaluating silicone implant rupture due to its ability to differentiate between the implant, its capsule, and surrounding tissues.
One Step Further:MRI can also be used for persistent bloody or abnormal nipple discharge, suspicious findings on mammography, and unclear physical exam findings
All of the above is a necessary preamble to my main message to you. Get the screenings. Insist with your doctor. Fight with your insurance company.
I’m convinced that my MRI saved me in many ways.
Now a breakdown on LCIS.
It is notoriously difficult to diagnose, mostly because there are no obvious symptoms. No lumps or bumps which are usually detectable by physical exam or standard imaging.
Unlike more common forms of breast cancer, LCIS tends to grow in a single-file pattern through the lobules of the breast, often evading clear detection on mammograms. It’s typically found incidentally during a biopsy or lumpectomy performed for another reason, such as a suspicious area on a mammogram or the presence of a benign lump. Because LCIS doesn’t always show up on imaging, many women—especially those without routine screenings—may never know they have it.
LCIS Upgrade rates: Upon excision (lumpectomy) there is more than a small chance that an LCIS diagnosis can change to invasive carcinoma or ductal carcinoma in situ (DCIS). For classic LCIS, upgrade rates are generally low, ranging from 3% to 14% . However, non-classic variants such as pleomorphic or florid LCIS exhibit higher upgrade rates, with some studies indicating rates between 20% and 65%. Source: PMC PubMed Central
I do not like these odds.
Here’s the most obvious question you will ask: If LCIS is not technically Cancer, what can or should be done about it? Or….why do anything?
Of course this is confusing. Many recommendations have been made to me by professionals, friends, Cancer survivors etc.
There are several paths that can be taken. None of the choices are wonderful.
Treatment options vary wildly.
✔️ Genetic Testing is recommended. If you test positive for any one of certain genes, it puts you at increased risk.
✔️ Increased surveillance. This includes regular MRIs, mammograms and sonograms. Frequency determined by your doctor.
✔️ Medications. There are quite a few choices. Outlining them briefly here. Talk to your doctor and do your homework!
Aromatase inhibitors: Reduce the amount of estrogen produced in the body. (Anastrozole, Letrozole, Exemestane)
SERMs (Selective Estrogen Receptor Modulators). These block estrogen from binding to its receptors specifically in breast tissue. (Tamoxofin)
Pure anti-estrogens bind to estrogen receptors and target them for destruction. (Fulestrant)
LHRH agonists suppress ovarian function, reducing estrogen production (Goserelm, Leuprolide)
✔️ Lumpectomy. This can provide a more precise diagnosis where additional breast tissue is removed surgically and further tested for Cancer cells.
✔️ Prophylactic Double Mastectomy. All breast tissue is removed, the breast cavity is cleaned out, theoretically removing the need for additional routine screenings and medications. Breasts can be reconstructed from existing fat found elsewhere on the body or augmented using breast implants.
There are risks and benefits to any treatment plan. The psychological impact cannot be overstated.
The punchline here is this. My paternal grandmother had nothing to do with my health, my genes or any predisposition. She was merely the impetus to get me to start asking questions and taking control of my body.
But that’s a whole ‘nutha story. In the meantime…
I have made my decision on my treatment plan. The struggle is real.
What are the Odds?
I’m so glad you asked. An LCIS diagnosis primer by the numbers
WHAT WOULD YOU DO?
(I’ll ask again at the end)
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If this is your first time here, you may want to play catch up. You can start with my post “Double Helix DNA Dilemma”. If you’d like the deeper dive, then you can then jump to to my previous “21 Gene Salute” post.
Since my recent diagnosis of LCIS (Lobular Carcinoma In Situ), I’ve gotten quite an education. I have done my level-best to avoid doing any self-diagnosing using AI or Google as my guide, but I can use the internet to get real life numbers. I have done that using multiple platforms. The numbers seem consistent.
Turns out you have to be one of the “lucky” ones to actually find this elusive diagnosis; it isn’t easily found with routine screening. For context, routine screening (according to most standards of care and your insurance company) generally means the following:
FOR THOSE WITH NO PREVIOUS FAMILY HISTORY:
I have done the recommended mammogram and sonogram each and every year. In the last decade or so, I decided to add a Breast MRI into the mix. This procedure is not indicated for any woman without increased risk. Why did I push for it? I was told my paternal grandmother had Breast Cancer later in life (and survived). That was reason enough for me.
Each and every year, my insurance company denied this procedure, despite this family history. My doctor would submit the paperwork in appeal and then had to get on the phone for a peer-to-peer review. Each and every time. One year, they just flat out denied this super-important diagnostic test. I was prepared to pay out-of-pocket. That’s how important it was to me.
Why add a breast MRI to your screenings? The short answer is that this test picked up my LCIS, where the mammogram and sonograms did not. Who should fight for this and why? Well, I think we all should. Here’s why.
All of the above is a necessary preamble to my main message to you. Get the screenings. Insist with your doctor. Fight with your insurance company.
I’m convinced that my MRI saved me in many ways.
Now a breakdown on LCIS.
It is notoriously difficult to diagnose, mostly because there are no obvious symptoms. No lumps or bumps which are usually detectable by physical exam or standard imaging.
Unlike more common forms of breast cancer, LCIS tends to grow in a single-file pattern through the lobules of the breast, often evading clear detection on mammograms. It’s typically found incidentally during a biopsy or lumpectomy performed for another reason, such as a suspicious area on a mammogram or the presence of a benign lump. Because LCIS doesn’t always show up on imaging, many women—especially those without routine screenings—may never know they have it.
LCIS Upgrade rates: Upon excision (lumpectomy) there is more than a small chance that an LCIS diagnosis can change to invasive carcinoma or ductal carcinoma in situ (DCIS). For classic LCIS, upgrade rates are generally low, ranging from 3% to 14% . However, non-classic variants such as pleomorphic or florid LCIS exhibit higher upgrade rates, with some studies indicating rates between 20% and 65%. Source: PMC PubMed Central
I do not like these odds.
Here’s the most obvious question you will ask: If LCIS is not technically Cancer, what can or should be done about it? Or….why do anything?
Of course this is confusing. Many recommendations have been made to me by professionals, friends, Cancer survivors etc.
There are several paths that can be taken. None of the choices are wonderful.
Treatment options vary wildly.
✔️ Genetic Testing is recommended. If you test positive for any one of certain genes, it puts you at increased risk.
✔️ Increased surveillance. This includes regular MRIs, mammograms and sonograms. Frequency determined by your doctor.
✔️ Medications. There are quite a few choices. Outlining them briefly here. Talk to your doctor and do your homework!
✔️ Lumpectomy. This can provide a more precise diagnosis where additional breast tissue is removed surgically and further tested for Cancer cells.
✔️ Prophylactic Double Mastectomy. All breast tissue is removed, the breast cavity is cleaned out, theoretically removing the need for additional routine screenings and medications. Breasts can be reconstructed from existing fat found elsewhere on the body or augmented using breast implants.
There are risks and benefits to any treatment plan. The psychological impact cannot be overstated.
The punchline here is this. My paternal grandmother had nothing to do with my health, my genes or any predisposition. She was merely the impetus to get me to start asking questions and taking control of my body.
But that’s a whole ‘nutha story. In the meantime…
I have made my decision on my treatment plan. The struggle is real.
Ok. I’ll ask again…what would you do?