Over the summer, two of my blogs received the most positive attention.  One was on the collateral damage of cancer treatment and the other focused on the need for the breast cancer advocacy groups to work together on particular projects.  As the Pink Fog of October descends on the land, I am excited to announce that Susan G. Komen and the Young Survival Coalition and others have agreed to collaborate with us on the Collateral Damage Project.  This unique team will be seeking media opportunities to talk about the Project over the month asking women and men to send their collateral damage questions, topics and experiences to www.questionthecure.org

So far our DSLRF folks have sent us almost 3000 questions!  The top topics in order are:

  • Pain in joints/arthritis 18%
  • Memory 10%
  • Numbness/neuropathy 10%
  • Anxiety/Depression 10%
  • Sexual problems 8%

Others include hair loss, fatigue, weight change, early menopause, problems with nails and teeth, insomnia, smell and taste problems, vision and hearing problems, skin changes and balance/weakness!  Obviously we have only begun.

We hope that this effort to “crowdsource” the questions for the study will demonstrate both a new model of collaboration among breast cancer groups as well as a new model of asking the patients/public about what should be studied.

Using the [HOW] Study will let us match the collateral damage to your age, time since diagnosis, treatment, type of cancer and other medical history.  This should give us a powerful way to document the cost of the cure and report it back to you and the world.

Collaboration and collateral damage….what a way to start October!

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21 Responses to Collaboration on Collateral Damage Project

  1. Janet pedersen says:

    I had a breast lumpectomy with radiation. Ever since I get muscle spasms in my back only on the side I had radiation; this has been happening foe several years; not all the time but frequently at bedtime or if I stretch in the wrong way on that side. I believe the muscles were weakened by the radiation, but have no proof.

  2. Charlotte Brandt says:

    Great start on collaboration. That is so important for us.

  3. Jane Howard says:

    At last, a national entity is addressing collateral damage which can be so devastating during and after cancer treatments. Educating women to the adverse effects of various therapies, chemo and radiation may result in more effective and newer treatment options for breast cancer (about time)! Thank you Dr. Love.

  4. Sheila Margeson says:

    I am 69 years old. Thirteen years ago I had a lumpectomy & two rounds of chemo because I was estrogen negative and not eligible forvTamoxifin. Sometimes I get cramps in my leg muscles during the night, my toes get numb and my fingers get numb sometimes. I have found that aerobics helps with my numbness and circulation.

  5. Joyce Delario says:

    I’m so happy to hear the news about upcoming collaboration. Both communication and collaboration are so very important. I’m 71 yrs old and a breast cancer survivor of 25 years! Following my mastectomy and chemo, I was on tamoxifen for a 10 year period, considered safe for me because my uterus was removed (fibroids) about 4 yrs prior to my breast cancer diagnosis. I’m now struggling to hopefully halt or reverse my recent diagnosis of osteoporosis. Was I taking tamoxifen for too long? Maybe this is the kind of question that will be answered through more extensive studies.

  6. all the best; not a popular subject!

  7. Jennifer Paulsen says:

    So glad for this topic! I’m 4 years post mastectomies , chemo, radiation , reconstruction – still on aromasin. Every year I have physical therapy to break down the scar tissue in my arm area, shoulder pain ,deal with joint pain , sleep issues etc. I have an attitude of gratitude so do not complain but so glad to hear from others!

  8. Ann Marie Macdonald says:

    I’m 67 at the end of the month. Had a lumpectomy 15 years ago with the sentinel node removed, found negative along with several more. Six rounds of chemo CAM, 30 radiation treatments. At the time I tested HER negative and I decided not to take tamoxifen. I had a hysterectomy 5 years previous and had been taking estrogen replacement. I suffered with lymphedemia for a while, had physical therapy, and thankfully subsided over the next five years. Biggest complaint is itching of that breast, numbness of middle toes and inside upper arm on the surgery side, insomnia, and weight gain. My only regret is that I did not have reconstructive surgery because the difference in both breasts is quite significant.

  9. Cathie Green says:

    Ann Marie, as I understand it, it is never too late to decide to have reconstruction. Personally I chose to have a breast reduction on the contra lateral breast post-mastectomy … I was a 38 D & did not want to reconstruct the breast but also didn’t want the hassle of such dramatic a-symmetry. Now for the first time in my life I can wear those little cotton bras & get sufficient support. I like to say that I always wanted small perky breasts – and now I have one!

  10. Catherine says:

    Good luck! I’ll be sure to share the message of the study online.

  11. Pat Yetman says:

    I am 65 years old. I had a lumpectomy in Dec. of 1997 followed by chemo (CMF), radiation and Tamoxifen (which I only took for <3 years due to severe hot flashes!) I have since been treated for osteoporosis and other annoyances such as worsening arthritis, including bilateral shoulder replacements, dry brittle fingernails and itchiness (especially around the scar on the left breast)! This could be related to heredity – or maybe not?
    This collaboration could be interesting!

  12. S.J.H. says:

    I am a 28 yr. survivor on the left side, 13 yr. survivor on the right side . I’m so excited about helping other women with the collardial damage….I now have a lupus clotting factor, lymphdemia really, really bad on my right arm …nothing seems to help….awful painful.

  13. Nancy says:

    Had left mastectomy in 2008, her2nu, stage 2b, I had to stop chemo with 3 more doses to go because of side effects: heart capacity in the 30% range, neuropathy of right foot and leg to mid calf, left foot to ankle, and memory issues. Today,41/2 years later my heart capacity is 55% and improving and with it my ability to do more things. I have only 1/2 feeling in my feet and toes, My cuticles have never come back on the sides of my nails which causes nails to split before the grow. I don’t know if my memory issues are the chemo or the anesstesha. I am very glad you are collecting feed back on residual effects!

  14. Teresa Thompson says:

    Two year survivor, stage 2. 4 ac chemos, 4 taxol , 56 radiation treatments. Numbness under my upper arm on surgery side, numbness in toes of both feet and regular severe cramping in legs, back and neck. Cramping has lessened since the switch from tamoxifen to femara. I’ve had deep tissue massage on my surgery incision to break up scar tissue to include a neuroma. My sleep hasn’t ever really been the same since. Still, very grateful to be alive.

  15. Diana says:

    I am fifty-eight years old and gratefully, a five year survivor this month! I will conclude five years of Arimidex in April 2014. My oncologist is contemplating five more years of the medication. I was diagnosed with systemic lupus in my early twenties. I could not have radiation because of the lupus and had to have my left breast removed. I did receive breast reconstruction and have been pleased with that. My hair grew back in after chemo, but it is very thin and balding in the crown area. Recently, one of my toes on my left foot feels “dead”. The skin on my neck and around the jaw area of my face is losing its elasticity. I have always felt that the hair loss and skin issues were related to the chemo, but not until many of your collateral damage symptoms did I consider that the toe may be in some way related as well. Thank you for sharing. An suggestions for the skin and hair? I am under the care of a dermatologist in addition to my rheumatologist and oncologist.

  16. Susanne says:

    Are you separating aromatase inhibitor symptoms from chemo- and/or radiation therapy symptoms? I have only had aromatase inhibitor and clearly has multiple side effects!

  17. paula selby says:

    I am 9 months post bilateral mastectomy. My nodes were clear. No chemo or radiation. Also not on tamoxifen of arimidex, but I am experiencing neuropathy. Any ideas on why? My doctors seem very puzzled.

  18. Norma says:

    I am a 16 year survivor with left mastectomy, chemo & 5 years of Tamoxifen. I feel blessed that I’m alive. However, I was hoping that lymphedema would be one of the topics, since it always seems like it’s lost in the shuffle, because there aren’t as many mastectomies as before. I have lymphedema in my left arm and it presents a real problem fitting into sleeves or even going sleeveless , because this arm is much bigger than my right arm. I’ve had massage & compression therapy, but of course insurance companies will only cover about 6 weeks per session every once in a while & just when it starts to make progress, I have to stop. Do you know if there are any new therapies or if there’s any new research being done on lymphedema ?

  19. Karyn says:

    In Febuary this year I had a lumpectomy for a small DCIS and invasive breast cancer with sentinel lymph node biopsy which was negative. The removal of the sentinel node caused lymphodema for the first few months. Even though this was mild it did cause anxiety that it would become worse. I still experience mild swelling around the elbow with repetitive tasks with this arm or if the weather is hot and I am exercising. It bothers me that removing the node was the only course available to check if the cancer had spread to the nodes. I also still have staining on my breast from the blue dye used to detect the sentinel node I chose not to have radiation or to take hormone therapy. With the documented side effects I decided that I wanted to remain well and follow lifestyle therapy to endeavour to remain well. I have lost 22kg, have changed my diet, see a natropath and my GP who supports this approach in my circumstances, and exercise regularly. I also practice meditation. I feel better than I have for many years. I would like to see some researcher done into the long term outcome for people like myself who choose not to follow the conventional treatment plan. I have researched my treatment decision and have the support of my surgeon.

  20. Laura says:

    I’m shocked that lymphedema is not among the collateral damage symptoms you list as being reported by respondents. It is a very common side effect of breast cancer treatment because most physicians have received almost no education on the lymphatic system and so take no care to preserve the vessels. Many women are not even warned to watch for symptoms upon their release from cancer treatment. Lymphedema is incurable and as Norma attests in her comment, insurance companies provide only limited coverage for beneficial therapies.

  21. Cindy says:

    I also wish lymphedema would be covered more completely. 13 months after Mastectomy is when it made its first appearance but muscle pain is horrible! Fasting is the only thing that really helps to bring it down, but even that only works so much. Please, if someone knows how to bring down muscle pain please comment.

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