Julie99's Journey with Invasive (Infiltrating) Ductal Carcin...

Patient: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 42, Stage IIB, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 4 years ago
    Julie99's Avatar

    Diagnosed

    Oh No

    May 2011 at my annual, my ob/gyn thought she felt something in my left breast which is why I had my first mammogram at 36 in June of 2011. The left was fine but I had microcalcifications on my right. More mammograms for 12/11 & again 6/12, but all was good, see you in 6 months. Columbus Day weekend of 2012, with my wrist in a splint, I couldn't get comfortable sleeping. I ended up having my left arm across my chest and felt the lump on right breast. When my boyfriend asked what would happen now, my answer was "I'll call my dr on Tuesday, see her this week. She'll send me for a mammogram & ultrasound, then I'll have a biopsy and then I'll see a specialist." That's exactly what happened. The biopsy was on a Friday and Monday, Oct 29th my company was closed for Hurricane Sandy, which is the only reason I was home when I got the call that the biopsy tested positive for cancer. I've got a great team at Dana Farber and I know how lucky I am to live and work so close. My company has been great and will even be setting me up to work from home so I don't need to come in during chemo over the winter. My boyfriend has been my ROCK during all of this and my friends and family are amazing. My head is still spinning. Hearing BRCA2 positive made the treatment decision for me, double mastectomy with immediate reconstruction. I'm still freaking out about losing my hair when chemo starts in February. 16 weeks of it. :( I love my hair. Long, straight blond hair, almost to my waist. It has been at least close to the middle of my back for 15 years! its part of my identity, part of who I am. I'm struggling to come to grips with that. hearing people tell me "oh it will grow back" only gets me mad. I'm still going to lose it! I've had hair stylists tell me I should be a hair model, random people come up and touch my hair while I'm out (yes, freaky!) and so many tell me how beautiful my hair is. I don't want to lose it! But for my life, I have no choice. I'm cutting it off before chemo starts and saving the braid as a reminder. :( Surgery should be in about 4-5 weeks, after I meet with the plastic surgeon.

    1 Comment
  2. 2
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 4 years ago
    Julie99's Avatar

    Fertility Preservation, egg recovery

    Procedure or Surgery

    I exercise to manage stress. With the fertility drugs, I wasn't allowed to exercise which made things more difficult to handle for me. I'm still bloated & uncomfortable. I'm disappointed that only one embryo made it to freezing and more disappointed that my insurance denied approval for me to try this again before my January surgery date.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  3. 3
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 4 years ago
    Julie99's Avatar

    IVF for fertility preservation, embryo freezing.

    Procedure or Surgery

    Grateful that my reproductive endrocronologist fought to get my insurance to approve a 2nd round of IVF. Drugs and retrevial alone (not ultrasounds, bloodwork, dr apts) were over $25K for 2nd cycle alone. I could not have done that without insurance. 9 eggs were harvested, waiting to see how many made it to embryos to freeze. One step done.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 4 years ago
    Julie99's Avatar

    Double Mastectomy

    Procedure or Surgery

    After the lymph node biopsy was positive all were taken on my right side. Surgery was a couple of hours longer than expected. I woke up with my throat hurting more than I had expected, but thanks to everyone here, I was ready with hard candy and a sports bottle with a straw (drank 2 bottle 32 oz each within a day of Powerade Zero!) Visiting nurses come daily to clean and 1 of 4 drains out. No bruising. Feeling much better than I had expected, but mornings are pretty rough when I first wake up. Pain meds are next to the recliner I am still sleeping on. I wasn't expecting to be this tired. Make that COMPLETELY EXHAUSTED! The first few days, I wasn't awake more than 2 hours at a time without napping. I'm SO lucky with the incredible support I have. My fridge and freezer as full that I now have to turn down people bringing food. I haven't been home alone since I got home from the hospital. Friends are over when my boyfriend is at work or the few nights he has gone to the gym for his own stress relief. I'm more frustrated than anything else since I am now dependent on others for most things, like getting dishes or glasses from shelves, washing my hair, anything reaching.... I can't wait to get back more strength, have all the drains removed and start to get back to being me again.... just in time for me to start going to chemo. :(

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  5. 5
    • Julie99
    • Experience with Invasive (Infiltrating...
    almost 4 years ago
    Julie99's Avatar

    Half way through CHEMO!

    Celebration

    I'm doing 8 rounds, every 2 weeks. AC/T. Next week I start up my first Taxol and I've made it through the half way mark. Two treatments in April and 2 in May. Still nervous about it all, starting a new drug, then having radiation, but focusing on the positives and that so far the side effects haven't been too bad. Long road, but passing the half way mark of chemo is making it feel like progress is happening.

    0 Comments
  6. 6
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 4 years ago
    Julie99's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I didn't love being poked 3 times for the IV to get things going and was really nervous about the day. The nurses overall were great. It is going to be a long process. Two days later, not sick at all just SO exhausted! Doing AC-T, started first of 4 AC, then 4 Taxol.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  7. 7
    • Julie99
    • Experience with Invasive (Infiltrating...
    almost 4 years ago
    Julie99's Avatar

    finished chemo!

    Celebration

    Three days ago was my last chemo treatment! I'm so happy to be done with another step in this journey. I will radiation in a few weeks, but for now, I'm just going to rest up and hopefully get through the rest of the chemo side effects.

    0 Comments
  8. 8
    • Julie99
    • Experience with Invasive (Infiltrating...
    over 3 years ago
    Julie99's Avatar

    External radiation

    Radiation

    On June 17th I had my first radiation treatment. It takes longer for them to line me up correctly than it does for the actual radiation. I'm still dealing with the fatigue from chemo and sleeping close to 12 hours a day.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  9. 9
    • Julie99
    • Experience with Invasive (Infiltrating...
    over 3 years ago
    Julie99's Avatar

    Finished treatment

    Celebration

    Thursday, July 25th was my last day of radiation!! I finished active treatment! SO happy!!

    5 Comments
  10. 10
    • Julie99
    • Experience with Invasive (Infiltrating...
    over 3 years ago
    Julie99's Avatar

    Prophylactic Salpingo-Oophorectomy

    Decision Point

    Being BRCA-2 positive, I have a 20-30% risk of ovarian cancer, instead of the 1.7% general population risk. A cousin was dx at 38 & died at 40. I WILL need a salpingo-oophorectomy but when? Chemo Feb-May 2012, then 28 radiation treatments ended on 7/25/12. Swapping out expanders for implants will be early Feb 2014. ANOTHER surgery? And I turn 40 Sept 2014. Now or wait??

    1 Comment
  11. 11
    • Julie99
    • Experience with Invasive (Infiltrating...
    over 3 years ago
    Julie99's Avatar

    Abnormal Pap & questions on ultrasound

    Oh No

    Saw the Gynecologic Oncologist for a consultation about a Salpingo-Oopherectomy and had a pap while I was done. That was abnormal. And the ultrasound showed several small cysts on my ovaries. The colposcopy is now scheduled on Sept 26th & I decided not to wait on the Salpingo-Oopherectomy which is now scheduled for October 14th. Biggest fear is that additional cancer will be found. If its invasive, even at stage 1, I would need chemo again, when I just finished in May. :(

    0 Comments
  12. 12
    • Julie99
    • Experience with Invasive (Infiltrating...
    over 3 years ago
    Julie99's Avatar

    Relationship issues

    Oh No

    My boyfriend who has been amazing during this whole thing, my absolute ROCK, isn't "feeling it", whatever "it" is. He is stressed, overwhelmed and needs a break. Something is missing for him. I've been out of work on disability for 8 months, have no extra money as I'm trying to stay on top of the co-pays and other bills, and I live with him at the house HE owns. Just having a really hard time with how cancer may end up taking this relationship as well.

    2 Comments
  13. 13
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 3 years ago
    Julie99's Avatar

    Breast Reconstruction (Implant)

    Procedure or Surgery

    Finally have the expanders out and implants in. HUGE difference! And I really like how they look now. I feel less like a freak with the hard boobs. Glad to have this part done and I feel like I can finally move on.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  14. 14
    • Julie99
    • Experience with Invasive (Infiltrating...
    about 3 years ago
    Julie99's Avatar

    Surgery

    Procedure or Surgery

    On Columbus Day I had a RRSO.

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