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

  1. 1 Procedure or Surgery Icon Procedure or Surgery
  2. 2 Procedure or Surgery Icon Procedure or Surgery
  3. 3 Procedure or Surgery Icon Procedure or Surgery
  4. 4 Procedure or Surgery Icon Procedure or Surgery
  5. 5 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  6. 6 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  7. 7 Loss Icon Loss
  8. 8 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  9. 9 Procedure or Surgery Icon Procedure or Surgery
    ???
  10. 10 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  11. 11 Radiation Icon Radiation
  12. 12 Side Effects Icon Side Effects
  13. 13 Side Effects Icon Side Effects
  14. 14 Celebration Icon Celebration
  15. 15 Loss Icon Loss
    ???
  16. 16 Decision Point Icon Decision Point
  17. 17 Other Care Icon Other Care
  18. 18 Celebration Icon Celebration
  19. 19 Decision Point Icon Decision Point
  20. 20 Celebration Icon Celebration
  21. 21 Procedure or Surgery Icon Procedure or Surgery
  22. 22 Oh No Icon Oh No
  23. 23 Procedure or Surgery Icon Procedure or Surgery
  24. 24 Procedure or Surgery Icon Procedure or Surgery
  25. 25 Side Effects Icon Side Effects
  26. 26 Procedure or Surgery Icon Procedure or Surgery
  27. 27 Celebration Icon Celebration
  28. 28 Milestones Icon Milestones
  29. 29 Other Care Icon Other Care
  30. 30 Other Care Icon Other Care
  31. 31 Other Care Icon Other Care
  32. 32 Oh No Icon Oh No
  33. 33 Side Effects Icon Side Effects

Survivor: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 4 years ago, Female, Age: 47, Stage III, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Axillary Lymph Node Dissection

    Procedure or Surgery

    Had a tough time with cording and just found out that some of my pain comes from my incomplete reconstruction.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  2. 2
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Breast Reconstruction (Implant)

    Procedure or Surgery

    Mastectomy went smoothly, though the tumor was such that there is very little margin, making reconstruction more challenging than expected.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Getting the port flushed every month is a pain. So looking forward to having it removed as this is the second one and it's rotating just like the first.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Mastectomy

    Procedure or Surgery

    I had the mastectomy, recon start, lymph nodes removed, and a full hysterectomy at one go. The first two weeks were really rough, but I'm glad I got most of my procedures out of the way, rather than doing them piecemeal.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo was tough for me. First course landed me in the hospital with low white cell count. Once we figured that out, I would give myself a neulesta injection and that kept me out of the hospital. Lost all my hair, had issues with my nails and skin, lost my appetite, but gained weight from all the meds. Hope to never do that again.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  6. 6
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    Was started on tamoxifen and wound up with two DVTs and some weird neurological episode that no one could explain. Switched to an AI and seem to be tolerating it. Since I had a full hysterectomy, I'm not sure why I was started on tamoxifen. Sure, I'll have to make sure I exercise and eat right to lessen the side effects of anastrozole, but that's already part of my lifestyle. If I lose hair, I'll just go back to wearing wigs.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Body part/function

    Loss

    While I didn't lose any parts that I view as essential, it's still just kind of weird knowing parts of me are just gone.

    0 Comments
  8. 8
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

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

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  9. 9
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Procedure or Surgery

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

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  10. 10
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Pain medicine

    Drug or Chemo Therapy

    No one talked to me much about page onset symptoms. Acid reflux led to aspiration and a trip to the ICU.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    0 Comments
  11. 11
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    External radiation

    Radiation

    Radiation poisoning, even closely monitored and controlled, is terrible.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  12. 12
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Chemo brain

    Side Effects

    I'm still dealing with chemo brain 8 months out of treatment. My problem solving skills are still strong, but speed and agility are really impacted. My memory is shot. I often find find myself walking into a look and not remembering why I went there. I'm also struggling with language, like finding the word I want or repeating a word in a sentence a couple or so times.

    0 Comments
  13. 13
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Depression/Anxiety

    Side Effects

    It's overwhelming trying to get back into life when I feel like I have no reserves. This particularly worries me about when I go back to work. I'm a client facing consultant and can't imagine being able to be sharp and keep it together for 8 to 10 hours when doing simple chores or errands wipes me out at 2 to 3 hours.

    0 Comments
  14. 14
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Finished treatment

    Celebration

    It was a relief to finish treatment. It was low key. Once I get through recon, I want to throw a party for my friends and family that did such a great job of supporting me.

    1 Comment
  15. 15
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Loss

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

    0 Comments
  16. 16
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    decision for chemo, surgery, radiation, hormone treatment

    Decision Point

    The first three were an easy yes. I'm struggling with the various hormone treatments. All seem to have terrible side effects, such that it feels kind of like I'll be dealing with cancer for the next 5 to 10 years.

    0 Comments
  17. 17
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    Naturopath is awesome. Chiro and accupunture did nothing, but massage helped greatly with neuropathy.

    0 Comments
  18. 18
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Starting to find a new normal

    Celebration

    I'm still on disability awaiting two more surgeries, so since I took up manicures as a new hobby, I asked friends to choose a number between 1 and 163 (I know. So much nail polish!) and I would do a new manicure each week with the color that corresponds to the number chosen. I did the first one yesterday with glitter and bling, as it was that persons birthday. I also wrote her name on the bottle of her color. She loved it and said it made her cry happy tears. I'm already looking forward to next week's manicure! Little celebrations, but decidedly awesome.

    0 Comments
  19. 19
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Change treatment facilities

    Decision Point

    My old onc wouldn't put me in survivorship, but also wouldn't see me to discuss my concerns about new cancer in my family. My PS performed a sub-optimal recon and decided to use a smaller implant than expander. So, fed up trying to get consistent answers and have a say about my body, I fired that facility and moved to another one. Next week I move into survivorship and next month my recon will get revised. LOVE my new onc and PS. I'm feeling pretty positive about the change.

    2 Comments
  20. 20
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Breakthrough

    Celebration

    I'm finally officially moved to survivorship and insurance is willing to pay for revising the dodgy recon I started at my old facility.

    2 Comments
  21. 21
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    I finally got the port out. After all this, the port removal hit me hard. I was shaking as the doc was removing it, but it's such a relief to have it out!

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  22. 22
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Misdiagnosed

    Oh No

    Not so much misdiagnosed, but change in recommendation on reconstruction from an implant and fat graft to a DIEP flap and potential prophylactic mastectomy. Eep! So much change in two days.

    0 Comments
  23. 23
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 2 years ago
    JNW's Avatar

    Breast Reconstruction (Flap)

    Procedure or Surgery

    Radiation damage left me with few options for reconstruction. I just got out of a 5 day stay in the hospital for a surgery that went 10 hours. Recovery is sometimes a bit rocky, but I make progress every day. I'm still very swollen, but it looks like it will be a match for the breast that didn't have cancer. The constant pain I was having is gone. Here's hoping it stays gone once I'm all healed up. It's such a relief to have two breasts that look like breasts. No more getting out of mammograms, but also real living flesh. It looks like all the heavy lifting for reconstruction is finally over!

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    4 Comments
  24. 24
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    about 2 years ago
    JNW's Avatar

    Breast Reconstruction (Flap)

    Procedure or Surgery

    My original PS, just swapped my expander for an implant. The other breast was revised. At the follow up, he told me that was all I could expect and got pretty chilly about a second opinion. The mammery folds were at different heights, my reconstructed breast was so obviously an implant and not matchet to my other breast at all. So, I went to my 2nd opinion PS and she was appalled. We determined a course of action. A week before my surgery, she called and told me, while drawing up the exact plan, she realized that route would mean a revision every couple of years. Considering my age, that would mean a lot of revisions. Luckily, one of her colleagues ranks in the top 25 in the US. She saw me immediately and agreed that my PS was right. So, DIEP flap was the way to go. 10 hours on the table and I now have a XXX that is actually warm to the touch and enough tissue so my PS can do her magic. I see her in a month, and we'll come up with another plan. On one hand, I'm impatient to have if done already. On the other hand, I'm starting to get heartily sick of procedures, poking, proding, not having a nipple. However, mad props to Emory Winship. A few more steps and I'm done with reconstruction. As for the DIEP flap, I'm glad I did it. It was hard, but worth it.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    2 Comments
  25. 25
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 1 year ago
    JNW's Avatar

    Pain

    Side Effects

    I've been spending months trying to get pain relief, almost two years out of treatment. This latest crackdown on narcotics is driving me batty. The only pain medicine they will give me is methadone, so other docs profile me, and refuse to change it, assuming I'm trying to kick some addiction. I guess I am ; pain.

    0 Comments
  26. 26
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 1 year ago
    JNW's Avatar

    Breast Reconstruction (Flap)

    Procedure or Surgery

    Right now I'm in that 24 to 48 hour most painful stage, but hopefully I'm ending this part of the journey and will find my new normal relatively soon. *fingers crossed*

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  27. 27
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 1 year ago
    JNW's Avatar

    Radiation Burn Scar Is Healed, Back to Reconstruction!

    Celebration

    Finally got started back on reconstruction! May need some tweaks, but it finally feels like cancer is in the rearview mirror and school is in front of me!

    0 Comments
  28. 28
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    over 1 year ago
    JNW's Avatar

    Starting School

    Milestones

    I just started an esthetics program with the thought to help cancer patients and survivors. At first, it looked like that wasn't going to work - cancer can be a contraindication. However, we now have a new director who is an oncological esthetician and I'm going to be a model for an oncological esthetics boot camp in a week. I'm thrilled that there is a path. I feel overjoyed that I can take my experience, get my training, and help others in a way that often gets overlooked.

    1 Comment
  29. 29
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    about 1 year ago
    JNW's Avatar

    Hospitalization

    Other Care

    Well, at the age of 46, I had my first migraine ever. The full experience: pain, nausea, sensitivity to light, sound, touch, smell, hallucinations, issues with speech and locomotion. Three weeks and we finally broke it. It's most likely a result of my forced menopause. I'm taking a nightly prophylactic and have a humdinger of a migraine med, should there be a break through. It's odd, apparently, they shoot to reduce migraines by 50%, but having never had a migraine before I'm not sure how we measure 50%. Considering I'm having migraines every couple of weeks, I'm going to say that we probably aren't hitting our goal. Yikes!!

    0 Comments
  30. 30
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    8 months ago
    JNW's Avatar

    Outpatient Surgery

    Other Care

    Last reconstruction surgery! This should be it. Now, it's time to get my references together and scrape together the money to get my memorial tattoo because way would I bother just getting a nipple and areola tattooed when I now have a perfectly good excuse for getting a woman dancing through fire tattoed across my belly and onto part of my frankenboob?!?

    2 Comments
  31. 31
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    8 months ago
    JNW's Avatar

    Palliative care

    Other Care

    Nerve blocks and trigger points to help with recurring pain around the mastectomy site. This helped a little over a year ago. This time, instead of helping, instead, the pain got worse and spread from one area right by the mastectomy site to my entire right torso. Doctors and breast cancer rehab facility are still trying to figure it out. Meanwhile, I can't drive, can't finish school, can't get on with this so called "new normal" that everyone keeps talking about. I'm starting to wonder if the "new normal" is like the "American dream".

    2 Comments
  32. 32
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    7 months ago
    JNW's Avatar

    Unexpected Diagnosis

    Oh No

    I've had three major bouts with pain while in survivorship. The first time, docs threw narcotics at it and it kind of helped, but I mostly got used to the pain. The second time it was worse, and they eventually gave me nerve blocks and trigger points. This third time, nothing seemed to help and they are now calling it Post-Mastectomy Pain Syndrome. Now, I'm in breast cancer rehab, which is much more involved than the simple PT I'd been given before, I've been upgraded to a migraine specialist and I'm being referred out to a different pain center that specializes in PMPS. I've been non-functioning for almost two months, trying various meds. I'm really hoping the new pain center can offer more help.

    2 Comments
  33. 33
    • JNW
    • Experience with Invasive (Infiltrating) Du...
    7 months ago
    JNW's Avatar

    Chemo brain

    Side Effects

    Over 2.5 years out of treatment and after many expressions of concern over my cognitive functions, I was given a neurosych test. The results came back saying, yup, I still have chemo brain and it might or might now get better. My neurologist seems to think that, while there is room for improvement, I shouldn't expect to get back to my prior cognitive levels. On one hand, it's kind of nice to have some validation that what I have been experiencing is quantifiable. On the other hand, it's a little daunting.

    1 Comment