legaljen1969's Journey:

Patient: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: 6 months ago, Female, Age: 50, Stage I, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    4 months ago
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    Just Diagnosed

    Oh No

    Calcifications detected on mammogram. Had two more follow up mammos to verify. Got referral to surgeon who will schedule biopsy and get care team together (apparently that's the normal protocol here in this area). Got a referral to do a stereotactic biopsy on 12/10/19.

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  2. 2
    4 months ago
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    Stereotactic Biopsy

    Procedure or Surgery

    Had stereotactic biopsy and had marker placed.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    4 months ago
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    Just Diagnosed

    Oh No

    12/16/19 found out I definitely have DCIS. Plan is to do lumpectomy, then radiation (5x/week for 6 weeks)Then a course of Tamoxifen. All sounds pretty simple. Ready to go. Scheduled surgery for 1/22/2020. Will be done with Savi scout. Have to get Savi scout markers placed pre-surgery. Scheduled for 1/20/2020.

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  4. 4
    4 months ago
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    Savi Scout Transmitter implant.

    Procedure or Surgery

    Went in 1/20/2020 to have Savi Scout implant to track appropriate incision site. Waiting and waiting for radiologist and surgeon to discuss implanting site. Find out maybe place between "two areas." What? Two areas- this is news to me. Breast care nurses show me images and tell me "long way apart in surgical terms"- Surgeon out of town, have to come back 1/21/2020 to have Savi Scout implant(s). " Arrive back 1/21/2020 and it is decided two (2) Savi Scouts to be inserted to "bracket" the area. Insertion of Savi Scout markers without incident, but I am shocked to know we are focusing on more than one area with many calcifications. Didn't realize this was a concern. All previous meetings with surgeons only shown one area and discussed. Feeling confused.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  5. 5
    4 months ago
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    Lumpectomy

    Procedure or Surgery

    Surgery 1/22/2020. Knew lumpectomy for removal of calcifications- know there are two areas so know margins will be larger than initially planned. Apparently quite a bit larger margins than anticipated according to surgeon's post-op discussion (very minimal since I was under anesthesia).

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  6. 6
    4 months ago
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    Cancer has spread/Metastasized

    Oh No

    Got radiology/pathology results back on Monday 1/27/2020. Doctor very discouraging/discouraged- seems absolutely stunned that invasive is now in picture. Told me again about larger margins- much larger- but no longer contained In Situ. It has become more invasive. Will schedule me for PET Scan/MRI. I am current waiting for appointments for that. Surgeon says it is much worse than she expected and we are going to have to mastectomy to left breast to be sure. I am mindblown. Spoke to nurse navigator/coordinator who says pathology indicates its still in ductal system but spreading/invading in same area. No signs yet it has gone anywhere else. Just gearing up and showing it wants to behave like a cancer and is willing to grow. Seems much more encouraged that this is only step from Stage 0 to Stage 1- still good prognosis. Doctor's demeanor/discussion left me with much different impression. Have wound check/post surgical follow up on 2/4/2020. Guess will see then what we are looking at.

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  7. 7
    4 months ago
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    My mind/Sense of Humor

    Loss

    My surgeon's assistant has constantly complimented me about always having a smile on my face. Well, it was successfully knocked off and eliminated with the news about "way worse" and anticipated mastectomy. Don't know when my smile will come back, if ever.

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  8. 8
    4 months ago
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    Second Opinion Time?

    Decision Point

    Based on how fast this trajectory is changing, should I get second opinion? I feel so stressed with everything else- the prospect of having to gather records and find a new doctor to give second opinion is just another stressor. But I have somewhat lost confidence. Just don't understand how things went so bad so fast.

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  9. 9
    about 1 month ago
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    PET SCAN and MRI

    Procedure or Surgery

    I underwent PET scan and MRI to determine if there was any evidence of disease in the right breast. Thankfully no.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  10. 10
    4 months ago
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    If anything shows up in right breast, proceed immediately to double mastectomy?

    Decision Point

    Surgeon said no signs this was invasive in initial mammogram. I asked are we going to look at right breast. She says will look with the PET/MRI tests- much more thorough and in depth.

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  11. 11
    2 months ago
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    Mastectomy

    Procedure or Surgery

    Had mastectomy on 2/26/2020.- left breast. The worst part of all of it was the surgical drain. Once that was out I have felt much better.

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  12. 12
    about 1 month ago
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    Sentinel lymph node biopsy

    Procedure or Surgery

    Sentinel Node biopsy was done at the same time as the mastectomy. I really didn't know people did it at another time. So I just thought it was part of the deal with the mastectomy.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  13. 13
    about 1 month ago
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    Home care

    Other Care

    I had a home health nurse (actually several different ones because the COVID-19 crisis started to ramp up just as I had completed surgery). They came to take vitals and help me with checking the incision site and surgical drain. I could have done okay without them, but it was more a backup for me. Years ago I got cellulitis after a surgery and I was apprehensive about the risk of infection and fevers. I didn't want to worry about every little thing, so I opted for home health to come twice a week.

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  14. 14
    about 1 month ago
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    Relief At Minimal Treatment

    Celebration

    After thinking initially that I would have to undergo radiation, that was off the table when we decided to move forward with mastectomy. After getting news that there was no evidence of spreading to the sentinel nodes, that was another relief. After the Oncotype DX score came back low and my oncologist said we would just proceed with hormone therapy, I was so relieved I was not going to have to undergo chemotherapy. I won't lie. I almost feel like I cheated the whole thing. I am glad I don't have to do it, but I have so much guilt because I don't understand how people with such amazing lives and outreach have to endure radiation and chemotherapy and I really got off easy. I am celebrating that I really was able to get through this mostly unscathed. Sure, I am missing a breast but that's a small price to pay.

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  15. 15
    about 1 month ago
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    Prosthetic or Reconstruction

    Decision Point

    The longer this "shelter in place" goes on, the more time I have to look in the mirror and see the part of me that is missing. Right after my mastectomy, family was asking when I wanted to go ahead and pursue reconstruction. My surgeon was preparing me for meeting with Alala to get a prosthetic. I really think my surgeon knows that in my heart, I just can't face any more surgery right now. I really want to do the type of reconstruction using my own tissue/fat. But I know that will be even more invasive. I am getting used to my "flat" chest on one side. I want to be able to go and get a prosthetic. It's something I could have done by now if not for this "shelter in place" situation. It is hard weighing everyone's expectations of my getting back my breast. Right now, I would be fine if the other one just went away so I would have a "matching" chest. I am somewhat relieved to have longer to think about it, and whether I even want surgery. I know I have to get my weight on down and be physically ready for this. Ugh, so much back and forth right now.

    8 Comments
  16. 16
    about 1 month ago
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    Mastectomy Incision Healed Well- No More Appointments for Awhile

    Celebration

    My incision and drain port healed well. Surgeon was pleased with everything. I cried a bunch of happy tears- catharsis. I got a "knitted knocker" today to put in my bra to help balance me a little. I am so grateful for my caring and compassionate doctor and her assistant.

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  17. 17
    8 days ago
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    Received Mastectomy Bra

    Celebration

    This was a bittersweet celebration. I am glad to have a bra that makes my chest area look a little more balanced. I am glad I don't have to try to figure out ways to put a zillion things in my bra that get bunched up or fall out. It is a much nicer bra than I anticipated it would be. I thought it was going to be really clinical and awful looking. Not that anyone is going to be looking at my bra. I am certainly not planning to use it as enticing lingerie. Yet it was another reminder that this annoying journey ever happened to me. It was another reminder that I will never be able to do enticing lingerie again. It was a reminder that until I am able to possibly get reconstruction, there will be no swimsuits. There will be no beach. There will be no sundresses and cool clothes for the summer. I know people now wear sundresses and tanks with bras that people can see, but that's a hard NO in my book. I really thought myself relatively low maintenance and not vain at all, but I am discovering a lot of things I miss. Over this past week I have learned a lot about people I thought were my friends and people I thought cared about me. I have learned that looks really ARE important and perfection really is the standard expected by the world. Sounds like I am whining? Not so much. It has clarified things for me to move forward and rid myself of a lot of unnecessary "baggage" I didn't even realize I had been carrying.

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  18. 18
    7 days ago
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    Breakthrough

    Celebration

    I finally got back to cardio training at the gym. My last session at the gym was January 20th before my lumpectomy and then my mastectomy. Then just as I was released to do strength training, COVID-19 closed down the world and my gym was ordered to close. I have been walking and doing a little bit of yoga all along. On Monday, my gym re-opened. I was so happy. I am still having to build up. Monday's cardio was a mess. I couldn't get good control of my heart rate and slow it back down. I was used to doing 30-45 minutes of interval training AND then about 45 minutes of strength training. Well Monday was 30 minutes cardio only. Wednesday was 40 minutes interval training and I tried a little weight session. It was interesting to feel the sensations in my body. I immediately felt how much I was favoring certain muscle groups and how I was compensating. That's the great part about having a good trainer before my surgery. I immediately knew what I needed to do when I felt things I shouldn't feel. I knew what I shouldn't feel. I look forward to starting again with my trainer soon. Get ready world, I am coming back.

    5 Comments