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Thread: Have you had breast cancer?

  1. #1

    Question Have you had breast cancer?

    If you are a woman with SCI/D and have had breast cancer post accident/trauma/developmental and would like to share your story please email me or PM me here.

    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

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  2. #2

    Breast Cancer

    Hi Liz,

    I know that your post was made last year, but I thought that my recent developments might still be of interest. In October, I was diagnosed with breast cancer and had a lumpectomy to remove -- all edges were clean and there were no lymph nodes involved. Unfortunately my pathology report showed that I have triple negative and will need chemo followed by radiation since it's an aggressive form and fast moving. My treatments CMF (Cytoxin, Mespthotrexate and Fluorouracil) will begin in the early part of next year and last 6 months (8 treatments every three weeks) after which, I'll have 6 weeks of radiation daily (5x per week for 10-15 min intervals).

    I've been searching everywhere for information of other people with SCI who have undergone chemo, but am having no luck.

  3. #3
    I had chemo 9 years ago, but it's not changed all that much. My experience was vomitting, (they have meds for that) excessivly tired (sorry, no real meds for that) memory lapses (it's called chemo brain) and hair & weight loss. I didn't have radiation, but my Aunt did - same symptoms. I worked 1/2 shifts during my chemo, had it on Fridays so I could keep working. I'll pray for you.

  4. #4
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    No here but Mom had it and my Dad's sister died of it at about my age. With my aunt it was a reoccurance from when she was about 35. She died in 1984. My Mom was diagnosed when she was 59 and had a full mastectomy on one side and chemo. Hers started to return at 74 when she was diagnosed with terminal colon cancer. Yes, yearly!

    Mikki, has anyone mentioned joint or bone pain as a side effect of the radiation? I discovered this when trying to find a cause for my Dad's hip pain. His doctors saw nothing on CTs or MRIs but when I quit using medical terms I wound up on a breast cancer site about radiation. I added male to my search and prostate cancer sites came up and that was Dad. It has rally effected his walking endurance due to pain. It seems docs never mentioned it. Now I understand they try for heavier but fewer doses to try to prevent this in both groups.

    I'll ask our SCI RN to take a look in here, Mikki. I'm sure our VA System must have treated some of our vets. And one of our other members.

    Best of luck on a great outcome and that both you and Colleen stay cancer-free.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    I have had several clients who have had breast cancer after their SCI. Also both men and women with other types of cancer (lung, renal, bladder, prostate, bowel, lymphoma, leukemias, etc.) who had to have chemo and/or radiation.

    Concerns that are somewhat unique in SCI are issues with potential breakdown of old pressure ulcers or surgical incisions, or failure to heal of current ones during chemo, and due to WBC suppression, higher risks of infections such as UTIs and pneumonia. Those that don't appear to be altered by the SCI are problems such as fatigue, nausea & vomiting, hair loss, stomatitis, etc. Now days, radiation burns are much less common so we don't see problems related to that much anymore, which can be concerning if these occur in weight bearing areas without sensation, as they can quickly turn into pressure ulcers.

    One of my clients has talked about her experiences with breast cancer in her book, recently published, which is described in linked here:


  6. #6
    Thank you so so much, everyone for your thoughtful replies.

    Colleen, if I may ask, did you have breast cancer or another form? I was told that my side effects would somewhat be in cycles -- nausea, fatigue -- and will be more apparent after the second round. I almost feel as if I can deal with the other things, however the chemo brain is going to be a struggle.

    Sue, it sounds as if you and I have similar family histories when it comes to cancer -- it is prevalent in mine as well and both my parents and maternal grandparents died of it too. I have not heard of bone pain, but will ask my oncologist and chemo nurse about it.

    KLD, thank you so much for the link to The Upside of Down, the title alone caused me to smile. Yes, I'm concerned with potential problems concerning my white blood cell count and will be taking extra precautions to avoid precarious situations and especially those that may lead to pneumonia. Unfortunately, I have two pressure sores that were healing well (though slowly) which my plastic surgeon, who performed other flaps on me, has warned me the chemo will slow the healing further. As long as they don't start going backwards then I think that I can deal. as for radiation, the only issues I'm concerned about is one that my dentist mentioned in saying that due to the proximity,breast treatments have been known to cause damage/weakness in jaw and lower teeth. Does it ever end???

    Thank you again, everyone. for all of your well wishes.

  7. #7
    If they do include your neck (and those lymph nodes) in the radiation, yes, the jaw and teeth issues can be major issue. I would recommend talking to your radiation oncologist about this. If the neck does not need to be included, I would ask if they can provide a lead shield to cover this area during treatment to help prevent this.


  8. #8
    Mikki, you might be a candidate for breast brachytherapy, an alternative to external beam radiation for treatment of small, early-stage cancers without lymphatic involvement. Brachytherapy delivers radiation only to the area where the cancer was located, sparing healthy surrounding tissues.

    I had brachytherapy for early-stage breast cancer in 2001, with excellent results. Radiation is delivered via a radioactive "seed" about the size of a grain of rice, introduced into the breast either through a small balloon placed within the cavity where the tumor was removed, or via several thin catheters inserted around that area. Treatment typically consists of two 20-minute appointments per day (one in the morning and one in the afternoon) for a period of five days. The amount of radiation delivered is equivalent to a five-week course of external beam therapy, with identical therapeutic outcomes.

    Since your tumor was small and had not spread to the lymph nodes, you might want to ask your radiation therapist about brachytherapy. You can read more about it here.

  9. #9

    KLD, the radiation treatments will be localized and should therefore, with proper preventative care (lead shields) in place, perhaps this will not cause a problem. For common side effects such as cotton mouth and ulcers, I am stocked with Biotene products which are said to lessen these issues.

    Bonnette, though I'd read about the brachytherapy way before the chemo was introduced in the plan, I haven't spoken with the radiologists since that tratment will not take place until July-ish. Though there's no reason why that conversation regarding alternatives can't begin now unless the final results of the chemo play a part in those decision. Thank you though for providing the information.

    I do plan on keeping a journal as well as videos to better aide others who might be facing these same issues and plan on starting a thread detailing how to prepare for the different steps and procedures, side effects, tricks of survival learned along the way, nutrition and anything else that might be of help.

    Call me crazy, but I figure that cancer treatment (depending on stage of course) is small
    beans compared to our fight back to life from a SCI.

  10. #10
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    If mouth or other sores around or in mucous membranes are a problem start on about 500mg of L-Lysine. I had incredibly painful sores after rehab and all those antibiotics. I was sipping then gargling with chloreseptic than spitting before eating, brushing teeth and even just waking up as my mouth would dry and hurt the sores. My husband mentioned it to our family run pharmacy doc and he also had a side degree in homeopathic medicine besides his doctor of pharmacology. He suggested the L-Lysine. I love that man! After internal hemmoroids that I saw on a colonoscopy I made it a permenant supplement. Not even a scar on this past scan. We had been talking surgery because I lost so much blood at times. We were both reluctant because of the normal healing time and pain induced AD with surgery.

    And yes, I have to carefully chart my schedule of mammograms and colonoscopies. Another 2 polyps this past month on my 5 year but haven't heard back from pathology yet. So far the scariest was a bone infarct in my left tibia near my knee about 3 years post SCI the ortho expert said was due to the methylpredisolone. Needed an xray every 3 months for 18 months to ensure it filled in with healthy tissue. Found it because it hurt. But it was all good at 18 months.

    I worry a it as a quad about mammograms. We lose muscle and it begins to feel like tendon after awhile. I'm curious about false positives because of this.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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