Invasive Lobular ER: +80%, PR: +90%, Her-2 Negative 1+

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Hayk
Hayk Member Posts: 2
edited August 2017 in Just Diagnosed

Hi,

After reading all of the great discussions on this board, I thought I would share the results of my mother's test results. Unfortunately cancer does not care if you have been good or bad, it just strikes and hopefully someone who has done some extreme amount of research can point something out that might help my mom. I wanted to share the diagnosis details, so that way someone else can use it as a comparison to their own results and etc, might be helpful to someone someday. Thanks!

Size of Invasive Component: At least 2.0cm in diamter; margins involved.

Histologic Type: Invasive lobular

Histologic Grade: Moderately differentiated; Tubules: 3; Nuclear Grade: 2; Mitosis: 1

Nottingham Combined Histological Score: 6/9

Tumor Necrosis: No

In-Situ Carcinoma: Yes

Type: Lobular in-situ

Percentage: 5%

Margins of Resection: Involved

Lymphatic Invasion: Not identified

Dermal Lymphatic Invasion: Not identified

Perineural Invasion: Present

Skin Involvement: No

Fascial Involvement: Not Identified

Microcalcifications: Yes

Non-Tumorous Breast: Fibrocystic change

Prognostic Markers: Performed on Sp17-2176, ER: Positive 80%, PR: Positive 90%, Her-2: Negative 1+, Ki-67: Low 5%

Sentinel lymph nodes: One, with metastatic lobular carcinoma (1/1).


Some of the analogies doctors have used to describe this type of cancer.

"It's like a criminal, and you have to catch him before he runs somewhere else"

"It's like a camping, instead of everyone huddling around one big camp fire, there are little campfires in different places"

From my interpretation of what the doctors are saying is that the cancer does not huddle together in one location but rather disperses in small amounts. Based on the Ki-67: 5% is interpreted as a low progression. Initial doctor gave it a Stage 2, second doctor stage 3, third oncologist said no it's stage 2. There is confusion among these doctors which further makes me nervous.


"Pet Scan" - Pet w/ CT Skull Base to Mid-Thigh

Chest: Postoperative changes are seen in the right breast with a couple of large seromata with largest measuring greater than 5 cm. Mild patchy FDG uptake in the right breast is likely post surgical; however, residual/recurrent tumor cannot be excluded with certainty. Continued followup is recommended. Surgical clips are seen in the right axilla status post nodal dissection. Mild activity in the right axillary region corresponding to fat stranding is likely postoperative change. No other focal abnormal FDG uptake is seen elsewhere in the chest. The lungs are clear.

Impressions:

1. Postoperative changes are seen in the right breast and right axillary regions. Mild activity in these areas are likely related. No obvious residual disease is identified. However, this could be masked due to postoperative inflammatory activity. Clinical correlation and followup is recommended.

2. No additional focal areas of abnormal FDG uptake are seen elsewhere in the body to suggest any metastatic disease or lymphadenopathy.


They also did a recent MRI scan and said they found another bump in the other breast and want to do a biopsy. But my mother had a biopsy done on that breast 4 years ago and the result was non-cancerous. The doctor insists that we do another biopsy, my mother asked if she is getting a double mastectomy, why does she need another biopsy... The doctor said they need to check the lymph nodes before doing the surgery and etc... Her body makes a lot of cysts.

We are very confused, it seems like there is a battle with cancer, battle with insurance company paying and a battle with the whole bureaucracy of steps insurance companies have created before getting treatment which seems like the doctors are not communicating in a straight forward fashion.

The key questions I am wondering if A: Does she need surgery? B. Does she need chemo? C. Can she just take Tamoxifen and other estrogen suppressing medication instead.

She is working to fix her diet and clearing out all sugars, a lot of carbs, fixing her sleep cycle and circadian rhythm in the interim. Treatment has not started yet.

Any advice or personal stories would be appreciated that might help us. Will pay it forward, thank you!

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Hi Hayk, and welcome to BCO. We are so sorry about your Mom's diagnosis and all the stress, anxiety, and confusion that has come with it.

    "A: Does she need surgery?"

    -- As to her right breast, the margins had diseased tissue, so I expect she will be advised to have more surgery to get "clean" margins there, free of diseased tissue.

    "They also did a recent MRI scan and said they found another bump in the other breast and want to do a biopsy. But my mother had a biopsy done on that breast 4 years ago and the result was non-cancerous. The doctor insists that we do another biopsy, my mother asked if she is getting a double mastectomy, why does she need another biopsy... The doctor said they need to check the lymph nodes before doing the surgery and etc."

    -- Breast biopsies evaluate only the tissue specimens biopsied -- not the entire breast --, and a lot can change in four years, anyway. If the newly discovered lump in her other breast were found to be cancerous, it would be important to know its type, tumor characteristics, whether nearby lymph nodes are involved, that stuff. The sentinel lymph nodes -- those most likely to be involved, if any are involved -- are identified just shortly before or at the time of one's breast cancer surgery.

    "B. Does she need chemo? C. Can she just take Tamoxifen and other estrogen suppressing medication instead."

    -- Her Doctors will make their treatment recommendations taking into account all they know about her health and her disease, aiming for her best survival prospects. If Chemo is recommended for her case, you might want to think of it as some good rains or something in the (figurative) nature of a "campfire" extinguisher, or a spark arrestor, if you will.

    "She is working to fix her diet and clearing out all sugars, a lot of carbs, fixing her sleep cycle and circadian rhythm in the interim."

    -- Many of us here aim for all-plant or nearly all-plant diets. Why would your Mom not want to eat plants? If her sleep pattern seems messed up, that may be because of her cancer. Cancer can be very tiring. The stress of being newly diagnosed -- besides of continuing cancer concerns -- can be very tiring. The surgeries and recoveries therefrom can be very tiring. Other treatment -- whether Chemotherapy, Radiation Treatment, or Endocrine Therapy -- can be very tiring, and the tiring effects can be very long-lasting, even increasing long beyond the discontinuation of (any of) those treatments.


    My breast cancer has been like hers in some respects -- ILC; at least 2.1 cm. excised in the first surgery; more at diseased margin; High ER+; High PR+; Her2 -; Ki67 4%; Nottingham Score 5/9.

    I have another health condition that keeps me tired, but the cancer made me even much more tired, with the tiredness increasing over the years. By the time my cancer was discovered, I was sleeping as much as twenty-two hours a day. When most of my tumor had been removed, I needed less sleep. Then for a time -- I think it was just a few months -- after I started on Letrozole, I needed more sleep. These days I usually need only about sixteen to eighteen hours of sleep a day. Otherwise i mostly rest. My Doctor advises me to rest as much as I feel need to rest.

    Anyway, your Mom's sleep requirements may be different because of the cancer. She should not figure her sleep schedule's in/adequacy by reference to any healthy others' sleep patterns. How she is feeling (feeling well-rested or not) is probably the best guide as to whether she is getting proper rest.



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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Here is our ILC forum section, where you can find discussions of ILC experience and similarly situated members.

    https://community.breastcancer.org/forum/71

    Here is our Surgery topics forum section. When your Mom's next Surgery has been scheduled, she might like to join the monthly Surgery group with other members having their surgeries and recoveries at around the same time? You might like to look around in there, too -- there is much you might learn about helping her get through that tremendous step in her treatment.

    https://community.breastcancer.org/forum/91


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  • beach2beach
    beach2beach Member Posts: 996
    edited August 2017

    Hayk,

    Lcietla gave some great info. I can't add more to it other than ILC is the second most diagnosed of BC but from all the info i could find, and not too much of it that wasn't outdated, is it has not been studied much and they tend to treat it as IDC patients. Not sure if that is good or bad. You have to trust her doctors, ask questions, and don't be afraid to get other opinions if she doesn't feel comfortable with her doctors or their opinions. I'm new to this also, only since 7/27 so I'm still learning.

    Good luck to your Mom!

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  • Hayk
    Hayk Member Posts: 2
    edited August 2017

    Hi @lcietla,

    Thank you for taking the time to answer all of my questions in details. It has helped boost further confidence on the approach we are taking since your opinion and opinion of others on this forum does not have a financial attachment based on the path chosen and that is greatly appreciated.

    I wish you a speedy recovery and thank you for taking the time.

    I just got off the phone of a lady I know who owns a Hospice and she is a long time nurse and very passionate about caring for others and someone I know. I randomly asked her if she had any thoughts on the matter and she told me that her sister had been diagnosed with stage IV cancer about 10 years ago. She told me about her battle of getting the insurance company to even pay for chemo and etc and the pain their whole family endured. Thank God, her sister is now doing better and thriving. She told me a few dietary tips is to include Iodine in the diet that can be purchased from Whole Foods as well as Flax seed and chia seed along with all other doctor recommendations of course. I thought I would pass this information along for further independent research and will pass over any other information I get.


    Hi @beach2beach,

    Thank you for that information. You are correct, I am finding it difficult to get viable information about her current condition and seem's like they approach every problem "whether a nail or a screw, with a hammer." Not very comforting at all :( All the best -Hayk

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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Hayk -- You are very welcome. Thank you for your kind wishes. Please come on down to the Complementary Medicine forum section and look around. For now, a caution -- until you know about further treatment/s that may be contemplated -- I mean Chemo and Radiation --, and until she has discussed dietary changes, vitamins, and supplements use with her Doctor/s, do not have her loading up on any vitamins, nor nutritional supplements, nor foods particularly high in antioxidants. I will be back later.

    Beach2beach -- Welcome, and my sincere condolences.


    Forum: Complementary and Holistic Medicine and Treatment

    Complementary medicine refers to treatments that are used WITH standard treatment. Holistic medicine is a term used to describe therapies that attempt to treat the patient as a whole person.

    https://community.breastcancer.org/forum/79


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    Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

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