eweneek's Journey with Breast Cancer

Patient: Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Female, Age: 61, Stage IIA, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Diagnosed

    Oh No

    I found the lump while getting ready for bed. I knew immediately it was cancer. I thought it would be a couple more years down the road, but ever since my Mom started her battle with breast cancer, I accepted the fact that I would eventually face the specter as well. The next Oh No was realizing my preferred surgeon was not a participant in my insurance plan.

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  2. 2
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Lumpectomy

    Procedure or Surgery

    At the time of my biopsy, the surgeon said the lesion was very small - stage I; however, he did not get it all on the first try - the tumor overlapped the margins of the excision and he had to go back and cut more out. Luckily, the sentinal lymph node was negative so my final diagnosis was stage IIA. The actual surgeries were easier than I expected, but I developed cellulitis at the lumpectomy site and a huge hematoma at the lymph node site which delayed my recovery, kept me home from work and had a big impact on my daily life.

    Went as Expected: Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I started therapy with the only oncologist in the area.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Unhappy with the local oncologist, I decided to go to CTCA in Tulsa.

    Decision Point

    I was referred to the only oncologist in the area who is probably a fine doctor albeit overworked. I was not able to establish a good rapport with him. The treatment plan he presented to me and my family is not the same plan he wrote orders for which seemed to really confuse his nurses as well as me! He did not address my concerns about side-effects and did not communicate with my surgeon. I sometimes wondered if he ever looked at my chart. When my blood count dropped, his nurse called to tell me that I would need to get a shot to stimulate the white blood cells. She also said, "You are at increased risk for infection so you should not eat any fruits or vegatables, avoid crowded places, and, ummm...let's see, I'm trying to remember what else is on that list." I decided then that I needed to seek another provider and went to the Cancer Treatment Centers of America in Tulsa, Oklahoma.

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  5. 5
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    When I transferred my care to the Cancer Treatment Centers of America in Tulsa, it was discovered that the chemo was raising havoc with my heart. I was given supplements to help support my heart and immune system. The medication given for nausea worked very well. The effect that interfered most in my life was the exhaustion, especially the second day following chemo. I was usually able to go to work on the third day, but I felt completely drained when I got home and was unable to do much in the way of housekeeping. I am so glad to have the support of my family.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Fatigue (tiredness)

    Side Effects

    Fatigue was the most debilitating of all the side effects I experienced.

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  7. 7
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Chemo brain

    Side Effects

    I did not experience chemo brain to a life-changing degree, but I was certainly slower and more easily distracted than before. It was very annoying to have to work so hard to remember things that used to come naturally with no apparant effort. At CTCA I was given brain puzzles and tips to help me overcome the effects.

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  8. 8
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
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    Depression/Anxiety

    Side Effects

    Walking the dog outside or working in the garden were the best ways to improve my outlook, although I had to walk very slowly because of the shortness of breath. When the weather kept me inside, I found it harder to make myself exercise and depression and anxiety about the cancer and my limitations increased to the point of needing medication.

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  9. 9
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Hair loss (alopecia)

    Side Effects

    My husband routinely shaves his hair short in the summer time. When my hair started falling out, I had him give me a buzz cut as well. When he finished, he lovingly put his arms around me and pulled me close, laying his freshly buzzed head on my freshly buzzed head and said, "I wonder if this is how they invented velcro?!?" Isn't he romantic! Loosing my hair was not so traumatic as I expected it to be. I've always wanted curly hair, so that is the type of wig I chose. I was also very comfortable just wearing cute caps, hats and scarves. Now my hair has come back, thick and curly, and I have a very cute cut.

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  10. 10
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
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    Heart problems/heart damage

    Side Effects

    The heart damage caused shortness of breath which, combined with the chemo fatigue, really limited my activities. Taking supplements to support my heart helped to a certain degree.

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  11. 11
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
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    Mouth sores

    Side Effects

    My CTCA oncologist prescribed something he called magic mouthwash which relieved the pain and cleared up the mouth sores very quickly.

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  12. 12
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    At one point, typing felt like so many papercuts to the tips of my fingers. Reflexology gave the most relief. The rebuilder (socks and gloves with electic stimulators) was also very beneficial.

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  13. 13
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    Nausea/Vomiting

    Side Effects

    Well controlled with medication.

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  14. 14
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    My treatment team at CTCA includes a naturopath, nutritionist, psychologist, physical therapist, manual therapist, as well as the radiologist and oncologist. The eight weeks of cardiac rehab I had while I was undergoing radiation was most beneficial. After I finished chemo, I could barely walk across the yard without becoming very short of breath. I had a tendancy to overdo, but the therapist taught me how to listen to my body so I could gradually build up my stamina. It was very effective and I was so grateful to be striding quickly through the halls again.

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  15. 15
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    thrombosis - superior vena cava syndrome

    Side Effects

    A couple months after completing treatment, I developed swelling in my neck and eventually my face and entire upper body. I also experienced shortness of breath, visual disturbances, vertigo, throbbing in my head and neck, all exacerbated by bending over. I found it difficult to breathe when lying supine, so I started sleeping in a recliner. I visited several doctors over the next three months, but none could come up with an answer. At one point, the sympoms were so severe, I went to urgent care where the PA consulted a radiologist who said the symptoms indicate a blood clot in the large vein above my heart. A CT confirmed a blood clot in the superior vena cava which the radiologist described as being "as long as a hot dog and as big around as a Twinkie." The clot had formed around the access port used for chemotherapy. The radiologist wanted to do a cath procedure to disolve the clot, but the ER doctor and the hospitalist convinced me that was too dangerous. I was admitted with IV heparin and went home on Coumadin. I was hospitalized two more times with the Coumadin level being raised each time and adding once-a-day Lovanox shots to my tummy. The clot continued to grow and invaded my jugular veins and the symptoms intensified. None of my doctors knew what to do and a couple days ago I was finally referred to a well-respected vascular surgeon in another city. He seemed to be much more knowledgable about this phenomenon. He said this type of clot does not respond well to Coumadin and that the amount I was taking is very risky for intracranial bleeding. I am now taking the Lovanox shots every twelve hours. My symptoms have improved slightly. Although I completed treatment with no evidence of disease, the vascular surgeon recommends a PET scan, because, in his experience, this type of clot often indicates active cancer.

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  16. 16
    • eweneek
    • Experience with Breast Cancer
    over 4 years ago
    eweneek's Avatar

    External radiation

    Radiation

    The radiation was the least stressful of all my treatment experiences. I received my treatment at CTCA of Tulsa which is 700 miles from home, so it definitely had an impact on daily life. However, staying at the center allowed me to participate in cardiac rehab, accupuncture therapy, and manual therapy which were very beneficial in overcoming the afteraffects of chemotherapy.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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