Marisol's Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 5 years ago, Female, Age: 59, Stage II, HER2 Positive: No, ER Positive: Don't Know, PR Positive: Don't Know

  1. 1
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    External radiation

    Radiation

    The schedule was 28 daily sessions 5 days a week (April 24 through June 4) and they were rarely on time, queueing + or - 20 days between about half an hour and one hour and a half. Under private insurance. National insurance is paid regularly as well but I relied on my previous spotless experience with the chemo team and it was a failure because the machine needed a spare part that never arrived from the Netherlands! Until session 25 I was OK, excellent technical personnel and doctor's supervision once a week, but suddenly I got burnt and I still have to use cortisone cream and new medical checkup on July 17. I sent a complaint letter and they promised to solve it, but fortunately and hopefully I am not concerned for the time being.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  2. 2
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Hair loss (alopecia)

    Side Effects

    I feel weak knees at the thought of removing my wig because my new hair is growing back very quickly. Other collateral damage is nothing compared to this new look.

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  3. 3
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Celebration

    Not yet. 31st of August I will be 1 year old.

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  4. 4
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Loss

    Since the beginning I am behaving as though nothing happened. This is easier to manage than those compassive comments you gather from acquaintances who gossip at other people's problems. I do not want to be their burden.

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  5. 5
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Whatever will be will be!

    Decision Point

    Impossible to look back, take advantage of any chance to be diagnosed early and convey the message as widely as possible.

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  6. 6
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Family support at the frontline

    Other Care

    Like the gypsies: never alone in the waiting rooms and never alone in the consultation rooms. Two encouraging sisters-in-law also fighting at a much younger age and with 3 kids each is an excellent mirror when I feel upset. One very handicapped born younger sister is a permanent pain in the neck for my ageing parents, for my cancer is hopefully temporary but her blindness has no cure. We are the 2 singles and we have other 7 brothers and sisters and 20 nephews and nieces. Guess who will pull our wheelchairs!

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  7. 7
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Oh No

    This person has yet to add any details about this experience.

    1 Comment
  8. 8
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Health insurance issue

    Oh No

    You begin to pay as a child and luckily you are not ill and when you arrive at a certain age and need medical assistance they claim that the situation has evolved and that you are not covered anymore so you have to pay extra for services that in principle were included.

    0 Comments
  9. 9
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Axillary Lymph Node Dissection

    Procedure or Surgery

    Very aesthetic surgery with minimum invasion, two tiny scars almost invisible in the armpit area. Annoying paresthesies along the arm and in the elbow area. Arm is not swollen but I am afraid of limphedema and tend not to use it.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  10. 10
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I wear a portacath on my chest and it is excellent. Drugs very well tolerated, just slight mouth mucositis and very dry skin. All under control .Remaining numb toes and ugly nails.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Disagree
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  11. 11
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Palonosetron+Dexametasona+Adriamicina+Ciclofosfamida+Aloxi 4 treatments, one every 3 weeks. Plus 9 instead of 12 Paclitaxel because of toxicity: 7 weekly full treatments, then 2 softer treatments with 15 days pause in between.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  12. 12
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Axillary Lymph Node Dissection

    Procedure or Surgery

    excellent esthetics (woman surgeon!:-)) and minimum scars under the armpit, I had allergy to rubber so the healing strips (trofolastin) did worsen the initial stitches. Fear of lymphedema but excellent fitness of the arm, I do not overexercise it. Good job!

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  13. 13
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Axillary Lymph Node Dissection

    Procedure or Surgery

    Chemo through PORTACATH was excellent, I still wear it. :-)

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  14. 14
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    My hair is back, when should I remove my wig?

    Decision Point

    It is summertime and it is uncomfortable but my ears are too big!

    0 Comments
  15. 15
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Family support at the frontline

    Other Care

    White bread and very dark chocolate were my favorite snack at the boxes during the chemo sessions. I tolerated it wonderfully.

    0 Comments
  16. 16
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Hand foot syndrome

    Side Effects

    I give myself time to get it over, the surgeon said one year, the oncologist prescribed an opioid straightaway, the radiologist will see me on July 17 for the "final" round.

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  17. 17
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Hair is back

    Celebration

    Not yet!

    0 Comments
  18. 18
    • Marisol
    • Experience with Invasive Lobular Carci...
    almost 4 years ago
    Marisol's Avatar

    Side Effects

    One of the worst moments was after meals during chemo. Nothing was worse than having to swish my mouth with bicarb or thyme tea. This caused nausea and not food or beverage! After talking to my doctor and nurse they gave me a swish solution from the hospital pharmacy intended against mucositis.

    0 Comments