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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 3 days ago | Replies (395)Comment receiving replies
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!
Replies to "I was diagnosed with LCIS at age 49, took tamoxifen for 5 years. During that time..."
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.
Hi jkh,
I just discovered this website and have also been on a LCIS journey. I did not have the most
knowledgeable or comprehensive cancer treatment since my diagnosis at 50 in 2012 in Florida.
I have had recurrences and it had never spread into a lymph node. I had multifocal in left breast only but & in 2012 I opted for double mastectomy. I've self-diagnosed 2 tumors in my left armpit since in 2019(oncology practitioners dismissed what I was pointing out finally biopsied it) that surgery w/ some radiation was in 2019. I moved to NC and felt a sm lump in 2022 . I've had radiation again. There was something they saw in 2022 in the pre MRI procedure on a vertebrae, but said it was only a "bone island" , no biopsy was done. I have strained my back with lifting and bending too much and the PA in Oct wanted to do an MRI of my back just in case. The bone island they said is about 20% bigger they thought, biopsied it and it is Lobular BC on left vertebrae. They recommend I take Arimedex. Is that supposed to shrink tumors? What are the physiological outcomes of Arimidex? It states it block the Estrogen Positive cancer cells from growing, but is there any one here or studies showing it shrunk the actual tumor? As for side affects, I don't read anyone saying it causes GI issues. I was told that is the main problem and I think stiffness. Anyone have metastatic BC to Bone?
What Bone Density pills do people recommend? Is is recommended --correct? Thanks!
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@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.