RMR's Journey with Invasive (Infiltrating) Ductal Carcin...

Survivor: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 54, Stage I, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Diagnosed

    Oh No

    I remember the day I received the phone call that I needed to go and get additional spot mammogram and sonogram. It was a few days before my ACL reconstruction surgery (I tore my ACL trying Brazilian JuiJitsu - that is another story). I could not get in for the additional testing before my knee surgery so i had to wait almost a month. That was torture because it sent my anxiety sky high. I remember the day after the phone call I was on a NYC subway on my way to a business meeting and all of a sudden my tummy tightened up and I thought - OMG what if I have cancer. I do not want to die from this, I need to see my kids grow up and have families, I have so much I want to do with my husband. So a month goes by I am recovering from my knee surgery, every night I lie in bed feeling my tumor and thinking I got it I have cancer. I drove myself nuts searching the internet for information when I could not sleep at night. Finally I go for the additional mammogram and sonogram. Definitely not pleasant, although the radiologist and nurses did all they could to make me comfortable. My appointment was late morning and I took an early lunch to get this done. At the end the radiologist said "we need to do a biopsy" - "I can fit you in later today". so I went back to work knowing I would back at the radiologist office at 4:30PM. Not much work got done that afternoon. Finally I go back. Had a core needle biopsy. At the end I turned to the radiologist and said "so I heard 99% of the time its nothing- what do you think?". He said "I do not feel comfortable telling you its not cancer". So I knew it, i was screwed. This was on a Thursday. I finally got the diagnosis the following Tuesday (that weekend was XXX). My OBGYN said "it sucks but you will be cured". I took a deep breath (that got caught in my throat) and my journey began. It was four days before my 48th birthday. A friend of mine said "your birthday present is that you get to dodge a bullet".

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  2. 2
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Double Mastectomy

    Procedure or Surgery

    It was with this surgery that I realized how important good pain meds Are. Tylenol with codene made me very itchy and vicodin made me miserable. I had to wait until my PS came for him to prescribe dilaudid. That is what works best For me.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was lucky and only had to do four rounds, three weeks apart. My chemo day was Thursday. I'd get the nuelasta shot Friday and would start feeling sick Sat night. So weekends Were roughest. I worked part time and would often feel a little sick for that first week after chemo , but I Muddled through. What surprised me was that I did not really mind being bald. The worst part was the shedding. When it got really bad my hair dresser helped me shave my head. I never really liked my wig and mainly wore pretty Scarves.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Treatment plan

    Decision Point

    When I was initially diagnosed I was originally considering a lumpectomy. However, although I knew the prognosis was the same with lumpectomy and radiation as it would be with a mastectomy, the thought of just a lumpectomy was scary to me. I think I was always leaning towards a mastectomy but was worried that I was being too aggressive. Because i was diagnosed before age 50 and I have a sister who was diagnosed with breast cancer (DCIS) before age 50 I opted to have genetic testing done. It was clear to me that if I tested positive I would have a bilateral mastectomy. I know its silly but part of me wanted to be positive for the gene so my decision would be made for me. Of course I was terrified what that would mean for my children (two girls and a boy). So I ended up being happy that I was negative for the gene, but super anxious because that meant I still had a big decision to make. Ultimately the advice of my plastic surgeon was most useful. He said not to focus on this period right now (diagnosis to treatment) as it will be a blip on my timeline. He said think about how you want to live your life several years from now. Lumpectomy would mean mammograms at least every six months for the next few years. I quickly realized I could not live with that anxiety. I decided I did not need my breasts that badly. Because I started off pretty big breasted my plastic surgeon recommended bilateral mastectomy because it would be the best way to achieve symmetry. He also told me that nipple sparing surgery would not be possible. It ended up being a great decision for me for a variety of reasons. It ended up that I had Pagets disease in both nipples. So had I not done bilateral mastectomy I would have been dealing with Pagets disease in the unaffected breast probably around now. While they say no one dies of Pagets disease I read that most Pagets has an underlying tumor so I could have been dealing with another cancer in the unaffected breast had I not decided on the bilateral mastectomy. My other major decision was chemo or no chemo. My Oncotype DX score came in at 21 (13% chance of recurrence). My oncologist thought he heard me say I want to avoid chemo (which I probably did say because I was terrified of chemo). Therefore considering my onoctype DX score. and the fact that I would be on Tamoxifin, he said "good news - no chemo". Up until this part of the process I had not sought a second opinion. I always said that I would seek a second opinion when it came time for deciding on a treatment plan. I sought a second opinion from a family friend who is a pathologist and the oncologist he worked with. They told me you are young, healthy, pre-menopausal, and that I could reduce my risk factor by 3 - 4% if I took chemo. They both recommended chemo saying if it were them that is what they would do. I ended up using the same advice given to me by my plastic surgeon and decided to take chemo. My thinking was that I would throw everything I can at this cancer to reduce my risk of recurrence. I felt by being so agressive I would have no regrets. I have done absolutely everything I can to beat this. If god forbid anything happens down the road there will be no "what ifs" , I will have no regrets. My oncologist was so supportive of my decision and I am grateful for that.

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  5. 5
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Chemo brain

    Side Effects

    Although I only had four rounds of chemo I definitely think it affected my thinking. I was working part time during chemo and started back full time after chemo ended (September 2011). As a commercial real estate lender a lot of my job requires analysis and writing. I remember not feeling sharp for a long time. Add to that having surgeries under general anesthesia about every 3 months for the reconstruction (with what hopefully is the last one this past August 20th) I don't think my brain is really at full speed yet.

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  6. 6
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Memory changes

    Side Effects

    My memory was not always the greatest before cancer (I am horrible at remembering people's names), but I think my memory is even worse. That is what my children tell me. Just this morning I had a conversation with one of my children and she got really angry with me because apparently we had this conversation about a week ago. I honestly don't remember it. From what I read memory issues is common after the stress of cancer, being thrown into menopause, after chemo, and can also result from all the anesthesia. It should get better - I hope.

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  7. 7
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Eating problems (anorexia)

    Side Effects

    My mantra is "out of bad things good things come". Before I was diagnosed with breast cancer I was working out a lot and changing my eating habits to lose weight and get in better shape. The anxiety I suffered when I was diagnosed zapped my appetite almost completely. Some days all I was able to eat would be a bit of oatmeal in the morning and soup at lunch. I remember having to force myself to eat something so that I could keep up my strength. This continued with chemo and I tend to lose my appetite around surgeries. As of now I have lost about 40-50 pounds since right before my diagnosis. With my last surgery, nipple reconstruction, I also got a tummy tuck. So I have really transformed my body. As of now my appetite is on the low side as I am recovering from my last surgery. Prior to this surgery it was more normal. I keep track of what I eat to manage my weight and make sure I am eating healthy. I feel good about how I look and feel and am happier with myself. So, just remember, out of bad things good things come.

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  8. 8
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Tamoxifen -no real side effects

    Side Effects

    I was so afraid of the side effects of Tamoxifen. I know people who gained a lot of weight, suffered hot flashes, and experienced low libido on Tamoxifen. I am so happy to say for me it has not been bad. I started Tamoxifen after chemo and one of my surgeries, around October 2011. I am happy to say that I did not gain weight on Tamoxifen (I continued to lose a little) and had minimal hot flashes. My libido is still in tact (when I am not dealing with recovery from surgeries). So - don't be afraid of Tamoxifen, you may not have all the side effects people complain about. The benefits of Tamoxifen for reducing cancer recurrence risk is so great that even if I had some side effects I think it is ultimately worth taking it.

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  9. 9
    • RMR
    • Experience with Invasive (Infiltrating) Du...
    about 5 years ago
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    Body part/function

    Loss

    While the decision to have a bilateral mastectomy was the best decision for me to reduce my overall anxiety and fear of recurrence, it was still a loss. I quickly realized that I did not need my breasts that badly. However, it has been a big adjustment for me and my husband. My breasts were a big erogenous zone for me. As a result of the mastectomy I did lose the feeling in my nipples (they were gone) and in most of the surrounding area. Some feeling has come back at the upper part of my breasts. Now with the nipple reconstruction I feel some discomfort in my nipples, so maybe some feeling will come back? For now though my husband and I work on finding other erogenous zones. Having said this, sometimes I miss my breasts. I know sometimes my husband does too. As an aside and follow up to my weight loss discussion - again, out of bad things good things come. I was always big breasted and always had to wear a bra. It was difficult at times to find clothes to accommodate them. As a result of losing weight and because in the reconstruction I opted for a lower cup size, I have transformed my body. I now have new smaller perky breasts. I will be able to bra-less! Woo Hoo. Out of bad things good things come.

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