Wow!  We obviously hit a nerve with our recent call for questions regarding collateral damage from treatment.  Over 800 of you responded to our call for questions and an additional 200 people signed up for the Health of Women Study.  If you haven’t responded yet it is not too late.  We will continue to crowdsource questions through October in order to develop a questionnaire for the HOW study that will truly reflect the experiences of all of you who have been diagnosed with breast cancer or are at high risk.  Send your questions about the side effects you’re experiencing from treatment (a la Jeopardy) to HOW@dslrf.org.  And of course we need all of you to sign up for HOW and fill out the first questionnaires. Our goal is to launch this new module on collateral damage early next year.

We are doing this as part of HOW, a bigger long term study, so  we can do more than just catalogue the problems you experience; we can also do some analysis to try and figure out who is more likely to experience them.  For example, are women with restless legs more likely to experience neuropathy from chemotherapy?  Is chemobrain more of a problem in people with a family history of Alzheimer’s disease? And to compare the women and men who have experienced breast cancer treatment to those of the same age who have not so we are not attributing to treatment symptoms that are actually due to age or the vagaries of life.  Finally, having a lot of people who have experienced breast cancer or are at risk in this long term study will also allow us to do something I have always wanted to do: figure out why some women with what looks like the same disease and treatment have different outcomes.  In traditional medical research, we study the people who “fail” the treatments, in other words those who the  treatments have failed.  But we rarely if ever study the ones who we expected to do poorly but instead did well!  What are they doing differently?  What can we learn from their experience?

We believe that including your voices in designing this study will give the medical community new insights for research, as well as providing a model for changing the way research is conducted in the future.

So thanks to all who responded and signed up already.  We need ALL of you, both with and without a breast cancer diagnosis, to join HOW and help us document the real cost of breast cancer physically, mentally and financially.  That is the only way we can shift the research emphasis from one largely based on treatment to one based on finding the cause and prevention!

Share →

23 Responses to Changing the Paradigm: Crowdsourcing Research

  1. Bonnie Dowling says:

    A couple of years after radiation treatment I had an acute attack of what has now been diagnosed as COPD. I’m not sure it was related but it could have been.

    Otherwise I am fine, 12 years out. I opted not to do Chemo altho I had triple negative breast cancer.

  2. I live here in the UK — from the research of Dr Sarah Myhill regarding chronic fatigue it seems that mitochondrial function could perhaps be assessed as an indicator of how women experience the effects of treatment. Dr. John Maclaren, a pathologist, of Acumen Labs in the UK, has designed a blood test to test for mitochondrial function and the results are showing that women who have chronic fatigue have ‘low output heart failure’ secondary to mitochondrial dysfunction. It could be worth contacting Dr. John Maclaren of Acumen Labs or Dr Myhill — Dr. Myhill’s site is http://www.doctormyhill.co.uk . They have published several papers in medical journals here.

  3. Morene Havercroft says:

    I had breast cancer in 1980 at the age of 40. I didn’t have radiation or chemo at that time. I am now 72 and have diagnosed with MDS and CMML. I do have the BRACA 1 gene. They think it probably is related to the breast cancer but really don’t know. Has anyone else had this experience

  4. Dorothy Argetsinger says:

    I had breast cancer in 1986 with radiation. In 2005 I was diagnosed with non Hodgkin’s lymphoma and treated with chemotherapy. I was in remission until 2011 when the Lymphoma returned. It was treated with chemotherapy. Six weeks ago I was diagnosed with bone cancer in my pubic bone. The MD said it is from the breast cancer of 28 years ago. I an taking a breast cancer pill and have a calcium shot once a month. I am still in remission from the Lymphoma but never regained my energy. Anyone else have this happen? If so, with what treatment?

  5. Carolyn DeMoor says:

    I had a bilateral mastectomy December 2010, and have suffered nerve and adhesion pains in that area since then. (I did not have reconstruction ) Have been to many doctors, therapists and even acupuncture with no success. I also have nerve pain in my upper arm where the radiation evidently passed. My life has never been the same. My energy level is very low also, which is depressing to say the least.

  6. Mary Gustave says:

    Lumpectomy performed in 2004, with follow-up of 2 treatments of Chemo (CA) and 6 weeks +4 days of radiation to the left brest. 9 years later happy to say, no recurrence. Cardiologist suggests I have enlarged left ventricle of the heart. I also have episodes of neuropathy in my feet and hands, with no signs of diabetes. Can find a doctor that will concur with these side effects being from previous treatments and how to minimize them. Changing diet and exercise routine seems to be helping.

  7. Jan says:

    I had a lumpectomy in 2001, followed by 4 rounds of chemo and many radiation treatments. I can’t recall how much radiation, but I had to take a break in the middle of it because my underarm got so bad it looked a lot like a burst baked potato. Since that time, I have experienced “chemo brain”, was downgraded in my position at work because of memory failure, have to have a cardio every year due to heart murmur, and just today, am sitting in pain in my underarm and entire breast. Doesn’t it ever stop? I also want to point out that I was a Peer Navigator thru UCDMD for 3 yrs, but discontinued it because of my recurring pain & inability to always speak positively to the newly diagnosed patients I was there for.

  8. Jan says:

    That should read UCDMC

  9. Jan G says:

    The lack of women of color in the study is concerning. What efforts is the team taking to reach out to these populations of women?

  10. Dr Susan Love says:

    Jan, I agree with you about the lack of women of color. We are applying for funding as we speak to hire something who will just focus on women of color and Hispanic women. If we don’t have all women represented we won’t have information that is applicable to all women.

  11. Karen D says:

    I was diagnosed Jan. 2012 with stage 3a lobular cancer. Treatment consisted of six rounds of Taxotere and Cyclophosphamide and 33 days of radiation. One year later, I still have a bald spot the size of a fist on my head. Has anyone else experienced bald spots? And did the hair ever come back? This is more depressing then losing a breast.

  12. Laurie Bullock says:

    I was diagnosed with bi-lateral invasive, estrogen and progesterone positive cancers back in ’98. I had NO positive lymph nodes, hooray! I did radiation treatments and tamoxifen for 4+ yrs. I did NOT do regular chemo even tho the docs wanted me to. I think I was more afraid of the chemo than the cancer and the advantages (percentage wise) just didn’t make sense to me. As it was explained to me by 3 different docs it would have only changed my chances of recurrence by 2 1/2 – 5%. So I chose to see a naturopath and see what she had to offer. Her treatment amounted to some changes in diet(nothing drastic) and a vitamin regamine. I felt great all the way thru radiation which was perhaps helped by the vitamins? The only problems I had from the treatments were night sweats from the tamoxifen and a shoulder that got hyper-extended during the sentinel lymph node surgery. Almost 15 yrs and counting!!!

  13. Kathy D. says:

    I had triple negative cancer 8 years ago. I had a lumpectomy and followed up with 4chemo. treatments and standard radiation. No serious problems with either treatment. However will I ever get full energy back? It was about 6 years before I even wanted to entertain dinner guests. Things are better but not great.

  14. Leigh Bogle says:

    I had a lumpectomy and radiation almost 2 years ago now. I’m tired all the time and my right breast and right arm still hurt. I get cramps in my rib cage which concern me, anyone have that? I was on Aromasin stopped taking that after 9 months. I made me dizzy. I have been on Femara for 4 months now and my joints hurt especially my hands. I would be perfectly happy to sit and do nothing. If I didn’t have to work I would probably do just that.

  15. Margo M. says:

    Have a three-generational family history of breast cancer on both sides of the family, including my mother (bilateral) and father. In 2001, at the age of 56, I discovered a 2 cm fast-doubling cancer in my left breast and had a lumpectomy, followed by a full course of radiation treatments. Decided against chemo after consulting three oncologists (one aggressively for, two marginally against). Was put on tamoxifen. After three months, when it was found that I had developed Crystalline Maculopathy as a rare side effect, I was put on Arimidex instead, which I took for 10 years. Of course, it went to 1/10 the price the year I stopped taking it!
    Side effects of the radiation are pain in the scar and surrounding tissue when pressed, and paroxysmal atrial fibrillation with no functional underlying cause. My recurrent fatigue could be a result of the radiation, the occasional a-fib, and/or the medication I’m taking for it. I did have a shoulder issue, which the physical therapist said was caused by my “guarding” of my left breast, but it’s back to full use now.

  16. Jan S says:

    I just passed the five year mark after treatment for estrogen and progesterone positive breast cancer. They found four out of ten lymph nodes positive. I had both chemo and radiation treatments and then was on an aromatase inhibitor for the five years. Some of the new literature refers to taking the aromatase inhibitor for longer which I would like to do but I have gone from osteopenia to osteoporosis during that 5 years.
    I also have moderate lymphedema in my arm with occasional pain in that arm.
    What affects me the most, however, is the neuropathy that I developed with the chemotherapy treatments. It has contributed a great deal to my disability in walking so I find myself limited in what I can do in moving around. Limited energy has made this worse.
    In all of this, I am most thankful that the treatments were there and I have been in remission for so long. I dreaded the chemo before I received it but found it not nearly as difficult as Ie expected.
    Any thoughts about any of this, Dr. Love?

  17. MJ says:

    I had lumpectomy and 3 lymph nodes removed 2.5 yrs ago followed by SIX chemo treatments and a month of radiation. I know why they don’t give 7 chemo treatments — nobody would come! Now research is saying six is no more effective than four! I’ve taken no further medications because cancer was triple negative. I am sad to read about those who have continuing problems. So far I am doing great. I was an active golfer before and last spring was one of my best scoring. I had a heart scan before, and the after scan showed a few percent less function. Also my white blood cell count may always be a tiny bit below average, but I have no fatigue problems and am not any more tired than any other 69 year old and am thankful for that. I hope it continues through the years.

  18. Rona Mael says:

    I read with extreme interest the note from Morene Havercraft. I had a Lumpectomy and Radiation in 1993 at the age of 60. I have recently been diagnosed with CMML Also. I am receiving Chemo now –Decitabine. I have received 2– 5 day doses.

  19. Laurie Swanson says:

    Saw Carolyn DeMoor’s note. I, too, had mastectomy (bilateral) in 2010 and I, too, have chronic adhesion pain. My chest is always tight. I have full range of motion in my shoulders, but if I cross my arms in front of me, they’ll “go to sleep”, which wasn’t a problem before surgery. If I use my arms much (eg, a scrubbing motion), boy am I sore. Lately, there have been some “needles stabbing” in one side off and on. For some reason, my chest skin is more itchy now. I can’t say it totally ruined my life, but sure did put a crimp in it. I tried implants, but I was even less comfortable and one failed, so had the other out, rather than try another form of reconstruction. Didn’t like what I read from others about lat dorsi (chronic scar pain), figured I have enough to deal with for now. I wasn’t aware there would be so much issue with adhesions. My right chest skin is totally “glued” to my chest wall and doesn’t move when you try to rub it. Very strange. No one else I’ve talked to here has these issues, they all seem to have healed great, so thanks, Carolyn, I’m not the only one!

  20. Doris T. says:

    I had a lumpectomy and radiation, and am currently on aromatase inhibitor Letrozole (Femara). Four months after radiation I suddenly experienced acute swelling and inflammation of my entire breast; it turned deep red and hot to touch–and unbearably painful. Was told it was a rare delayed reaction to radiation. I wonder. It was far worse than any of the multiple side effects experienced during radiation treatment. Simultaneously an infection appeared in the lobe of the lung on the same side as the affected breast. Whether the lung and breast issues were related or not is unclear to me. Nine weeks and scads of antibiotics later the lung is healed but the angry breast is still a problem, though slowly improving. I lost weight and I am exhausted all the time. Am wondering: is radiation going to ambush me like this in perpetuity? The Letrozole hurts my joints–especially the hands and wrists. And I’m fighting depression, too. Will I ever feel well again?

  21. Mary s says:

    Note for Doris T. Have you gone back to your medical oncologist about your swelling and inflammation? If not I would recommend doing so.

  22. Angela R says:

    I see myself in so many of these posts. At age 40 DX with Stage II node positive ER/PR positive BC. 6 weeks CAT chemo and 30 rounds of radiation. I did two years of tamoxifen and attempted aromatase inhibitors but I couldn’t tolerate the joint pain and overall felt almost suicidal. Being thrown into menopause “overnight” was a nightmare. I have since had a complete hysterectomy due to tamoxifen (uterine pre-cancer). I now control my estrogen levels with a supplement called DIM and I am on testosterone pellet therapy which has given me my life back. No more hot flashes, night sweats, joint pain. My energy level has returned as well. I’m almost 4 years out from end of treatment. Has anyone else discontinued standard of care meds due to the side effects? I felt they were stealing my life.

  23. Jane Woulfe says:

    I had a L mastectomy in ’93 and 5 years of Tamoxifin. In ’99 I had a R mastectomy for a new primary. I had 6 sessions of CMF. I declined Aromasin because I had joint pain with the Tamoxifin and didn’t feel it added much if any, benefit. I am self employed and cut way back on my business because of extreme fatigue which lasted about 5 years. In 2010 I had a wide excision on the L chest wall. I did 6 wks of radiation and had to stop because my chest wall was in such bad shape. I did finish about a week of booster after the chest healed somewhat. I declined to take Tamoxifin, Aromasin, Femara, etc. I have had lymphadema on the L for 18 yrs. I did not do any reconstruction. I have quite abit of arthritis pain. I found the bilateral surgery easier to deal w/ than having only 1 large breast. I have had years of depression that I can only deal with on antidepressants. Therapy has been of limited benefit. I watch my diet and exercise regularly and am grateful to have survived this long.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>