Clementine_P's Journey with Invasive Lobular Carcinoma

Survivor: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 7 years ago, Female, Age: 48, Stage II, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    about 6 years ago
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    Diagnosed

    Oh No

    At the end of March 2010, I felt an area in my breast that was not consistent with my regular breast tissue. Since I go for yearly mammos and see my OB/GYN every 6 months, I was concerned but not overly so. I happened to have a regularly scheduled OB/GYN visit in early April and decided to wait until I had my appointment. MY OB/GYN told me that she didn't think it was anything to be concerned about - to her it just seemed like a thickening of the tissue. I had assumed that she would send me for a mammo so I had cleared my schedule for the day which can be difficult in my job to do. I asked her if she would send me for a mammo now instead of requiring me to wait for June for my annual mammo. She did and the mammo showed no evidence of cancer. The Radiologist (who was a student of my father's and a friend) that read my mammo did not feel comfortable, however, that she could feel something but not see it on the films so she sent me for a sonogram. The sonogram led to core needle biopsies which led to a diagnosis of Invasive Lobular Cancer. This all happened in the span of 3 days.

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  2. 2
    about 6 years ago
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    Decision Point

    The day I met with my surgeon my husband and father were at my side. My surgeon told me that a lumpectomy would not be doable on me since I had two locations of cancer in the same breast and had small breasts. I told him that the radiologist that performed the mammogram and the radiologist that performed the sonogram and biopsies both encouraged me to have a bilateral mastectomy since I had a very strong family history and my breasts were very dense which makes them difficult to diagnose. They also mentioned that on the upside, I will never need another mammo and that for symmetry's sake I will look much better this way. He said that he thought that was a reasonable decision. My father who was a radiologist himself, knew the surgeon quite well and told me that the surgeon was very supportive of my decision. I was relieved.

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  3. 3
    about 6 years ago
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    Double Mastectomy

    Procedure or Surgery

    The lead up to the surgery (about 2 weeks from diagnosis) was a whirlwind of emotions, tests and stress. I had to take a leave of absence from my job of 13 years, tell family/friends, have a chest x-ray, PET scan, blood tests, urine tests, and try to wrap my brain around what was going on with me. In retrospect, I feel that those 2 weeks were the hardest time for me during this entire ordeal. The day of the surgery I had to get up very early and check in to the hospital. With my husband and father at my side, we went and checked in. They gave me a shot in my breast which was uncomfortable to say the least. After that, I had to go into a small room with my husband and met each member of the surgical staff one at a time. It was odd - at this point, I was ready to just get the show on the road. It felt like I was in some sort of twisted meet and greet session. My surgeon came into the room and wrote his initials on my breasts so that if I somehow walked into the wrong room, they would realize that they had the wrong patient. Weirdly, I had to walk myself into the operating room with the head nurse at my side and get myself onto the table. On the one hand, I wanted to marvel at how cool and technologically advanced the operating room was, but on the other hand I was frightened, exhausted, and really thrown off by the fact that I had to walk into the room. I guess I just assumed (too many viewings of the TV show ER?) that I would be wheeled in under sedation. Not so. I got myself onto the table and promptly started to cry. This was my first real "weak moment" during this entire ordeal. Both the surgeon and the plastic surgeon rushed to my side and said lovely comforting things. Then everything went black. The anesthesiologist must have hit the plunger. The next thing I remember is waking up in recovery with the surgeon's hand on my forehead say that "everything looked good". I was heavily sedated but I could see both my father and husband standing at the end of the bed looking, sad/relieved/exhausted. What a day.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    about 6 years ago
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    Decision Point

    My pathology report. Honestly, how people without the resources I had (my father being a retired cancer researcher) can possibly understand a pathology report for cancer is beyond me. I hope that everyone knows that they can and should ask as many questions as they want regarding the report. Being well informed will help you understand the treatment you are getting and help you get through it. My report came back with me staged as IIA. I had 2 sites of cancer in the same breast. One was DCIS and the other ILC. Together they totalled over 5 cm of cancer. There was microscopic spread into 2 of the 7 nodes that were removed. It was only a cluster of 6 or 7 cells which had not yet organized. Believe it or not, your spread is staged in the same way that your cancer is. My spread was staged at zero. N (Node) = 0. I was also told the very good news that I was Estrogen Receptor/Progesterone Receptor positive. My numbers were very high. ER=95% and PR=100%. This meant that for me hormone therapy would increase my chances dramatically. I was also HER2 negative. This is also good news. So, while my cancer was grade 3 poorly differentiated (which signifies aggressive cancer), the other indicators were on the good side.

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  5. 5
    about 6 years ago
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    Decision Point

    I met with my oncologist with my husband and father at my side. The first 15 or so minutes he spent reviewing my file with us sitting right there in front of him in his office. Nobody spoke. It was a very long and very awkward 15 minutes. Once finished, he said that without chemo my chances of not having a recurrence was about 52%, with chemo and some other after therapies, it would be about 90%. For me there really was no choice. I was 40 years old. I knew that a recurrence would essentially be a death notice. I was not ready to take that chance. So chemo it was. The oncologist told me that I would need 16 weeks of chemotherapy and that I would lose my hair. I was dreading that. It was traumatizing just for me to consider the loss of my hair. We walked out of that meeting stressed out, but I think that there was some relief that we now had a plan. What a day.

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  6. 6
    about 6 years ago
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    Port insertion

    Procedure or Surgery

    Really this procedure was a no brainer. It took very little time and I was not fully under anesthesia. The nurses and those at the hospital that took care of me were really wonderful. I will say, however, that while there was pretty much no recovery needed, I hated that you could see the port through my skin. I think because I am quite thin, it was noticeable. Still, it caused no pain whatsoever, and as I understand it made chemo for both myself and the chemo nurse go much more smoothly. So, I am grateful for the little guy - but I was chomping at the bit to have it removed as soon as I could too.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  7. 7
    about 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was scheduled to have 4 rounds of Adriamycin and Cytoxan every other week and then 4 rounds of Taxol every other week for a total of 8 rounds of chemo for 16 weeks. In the end, I ended up having 4 rounds of AC, 2 rounds of Taxol, and then one round of Taxotere. I started developing neuropathy after 2 rounds of Taxol and my oncologist and I thought it better to switch at that point, since we feared permanent damage. I am a very active person and still on the young side (41 at the time) so, I feared that permanent problems due to neuropathy could curtail my lifestyle. I must say that while chemotherapy was no fun at all, it wasn't nearly as bad as I had imagined. It was scary and I am a worrier so that certainly didn't help. Luckily for me, my father is a retired cancer researcher. He was always there for me to ease my mind and to give me my Neulasta shots. He was a godsend. The A/C went smoothly. Aside from the typical low blood counts, I didn't get nausea and/or many of the other side effects that many complain of. I did get the mouth sores which were very uncomfortable. My oncologist prescribed "Magic Mouthwash" which numbed my mouth and throat. It helped. My hair started falling out on day 15 or so. Even though I knew it was going to happen, I still felt very emotional about it. Seeing myself for the first time with a shaved head was traumatic to say the least. As time passed, however, the shock of it wore off and I got more and more used to it. I never liked my wig and so wore it only infrequently. Instead I wore a baseball hat with fake hair coming out of the sides and back and pre-knotted head scarves from 4women.com. Once my hair had returned in the tinest amount, I ditched all the head coverings all together. I just wanted to move forward. I had to get a few Neulasta shots. After the first one I experienced a lot of bone pain. I would describe it as severe pain. I used Vicodin as prescribed by my oncologist and it definitely helped a lot. I never had the pain again after the first shot. Chemo does impact your daily life. Each person gets their own array of side effects. I think it is important to remember that the side effects are manageable. Talk to your oncologist. Try to approach your treatment as a partnership. Your input and feedback will make the whole process go smoother. Also, try to remember that chemo, while not fun, is very likely saving your life. I am not pretending that I was a Pollyanna during chemo, but I do think that having a positive attitude can help you get through each day.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  8. 8
    about 6 years ago
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    port removal

    Procedure or Surgery

    This was a no brainer. I was happy to let my little guy who helped me a lot go. The procedure was easy easy. In fact, I was so uplifted when I got there because the nurses and the technician had remembered me from when they put in my port several months earlier. They were all acting like cheerleaders for me and it was so unexpected and heartwarming. I doubt they know how much they did for my state of mind with that unexpected act of kindness. There was essentially no recovery time from the procedure. I walked home from the hospital (about 5 miles) and walked away from cancer.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  9. 9
    about 6 years ago
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    Breast Reconstruction (Implant)

    Procedure or Surgery

    This was my exchange surgery. It was really very simple and I felt very few side effects. I couldn't believe it but I was in the hosptial in the morning and home by lunchtime. Aside from feeling a bit tired, I felt great. The implants were considerably more comfortable than the expanders so even after the surgery, I felt more comfortable than I had in months. The impact to my daily life was a good impact. Clothes fit me again, I was not shy about my appearance, and I felt very relieved to have this last big hurdle behind me. I opted for silicone implants instead of saline and have been very happy with the results.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  10. 10
    about 6 years ago
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    Skate nipple surgery

    Procedure or Surgery

    This surgery was very simple and physically speaking had essentially no recovery, no side effects and no impact to daily life. The surgery was about an hour long but I was awake the entire time. I have a great plastic surgeon with a wonderful sense of humor. I was joking and laughing with him and his staff during the entire procedure. Afterwards, they put on some plastic futuristic looking nipple protectors. I was glad that I wore a jacket for the surgery because they would have been very noticeable through a thin shirt and I can only imagine what people would have thought! It was again very uplifting to feel like I was getting this ordeal behind me. The postive attitudes of the surgical staff and their cheerleading (one of the nurses remembered me from the bilateral mastectomy surgery) really buoyed me. A few difficult months behind me and I was almost put back together again. After one week the nipple protectors were removed and voila! A new set of "ornaments".

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  11. 11
    about 6 years ago
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    Hormone therapy

    Drug or Chemo Therapy

    In September of 2010, I started Tamoxifen. I have had a relatively easy experience with it. The first 6 months or so, I did have painful joints and swelling in my hands and feet. After about 6 months that subsided quite a bit. It is still there but really doesn't bother me very much anymore. For me, however, my cancers were very highly PR (100%) and ER (95%) positive so I know that Tamoxifen can really mean life or death to me. So, even if I had to endure more difficult side effects, I would do it and try not to let it get to me. In one month, I will be one year into my aftercare. I love that.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  12. 12
    about 6 years ago
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    Bone strengthening drugs

    Drug or Chemo Therapy

    Zometa. The first infusion I had of Zometa really hit me like a ton of bricks. It was worse than any one infusion of chemo by a long shot. I had a terrible fever of 103.7 for 4 days straight and then for another 3 days a fever of 100-101. Yowza! That was not what I was expecting. My "chemo buddy" (friend that I met in the infusion room who I became close with and remain close), had no side effects. I have 2 other friends who went through the same thing as I did and they too had no side effects from the Zometa. I was really nervous to get my second infusion (I was told that I should get one every 6 months for 5 years) just because I really didn't want to have to deal with that ever again. My Oncologist told me that my reaction would not be as bad this time. I trusted him, and he was right! Aside from feeling icky/tired for a few days, I did not get the fever at all. It was a piece of cake compared to the first go around.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  13. 13
    almost 6 years ago
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    Nipple tattoos

    Procedure or Surgery

    Well, I was really looking forward to this because I thought it would be a no brainer and that it would really give me a more authentic look. It wasn't exactly what I was expecting and neither were the results. I have a tattoo and I was expecting a small pen like instrument emitting a low hum. Oh my gosh! Was I surprised. I guess the tattoo used for these types of situations is different. It sounded like there was a diesel truck in the room! I swear my plastic surgeon went behind the table and started pulling the cord just like a lawn mower to get it started. The procedure was easy physically. My plastic surgeon gave me some shots of local anestesia and then it took probably about a half an hour. Once over, they put on some bacitracin ointment and some gauze. I wasn't expecting to bleed so much. Perhaps it is because I am on baby aspirin daily for potential clotting due to the Tamoxifen, but I walked about 20 minutes back to work afterward and by the time I got there I had bled through the ointment, gauze, my bra, and a little bit through my shirt. I am so glad that I was wearing a suit that day because I just kept my jacket closed the remainder of the day and it was no problem. My plastic surgeon gave me antibiotics that I had to take for 5 days. Once healed, I can see that the tattoos didn't take entirely. I don't know if this is common because he is tattooing over scar tissue? So, I hope to find out more when I go for my follow up visit on Friday of this week. I suspect, there will be some touch up work to be done. Well, I think I am almost there now...

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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