Those of you who responded to my recent blog on the collateral damage from cancer treatment will remember that I said the Health of Women (HOW) Study was going to investigate the price of the current treatments to our bodies, our minds and our souls.  In order to do this we need your help.  If you haven’t already, we need you to sign up for the Health of Women Study so that we can document your health, breast cancer diagnosis, and breast cancer treatment.  We also need you to help us develop a questionnaire that we can use to collect all the varied side effects from treatment.  We have several questionnaires in development, including those that focus on exercise, diet, and the environment, and hope with your help to put one together on the consequences of breast cancer treatments that we can release in January 2014.

We are soliciting your suggestions regarding side effects from your surgical, radiation, hormonal and/or chemotherapy and targeted therapy.  Although physicians and researchers have developed questionnaires in the past, there has never, to my knowledge, been a questionnaire developed by those who experience the problems.  We are interested to learn about any symptoms or side effects that you have experienced related to your treatment, including joint pain, chemobrain, lymphedema, numbness, pain in the chest wall, sexual problems, and anything else that you’ve noticed.  This is our chance to document what you are experiencing rather than just what the doctors THINK you are experiencing.

If you would like to help, we ask that you email us at how@dslrf.org.  It will help us if you can, as in the game show Jeopardy!, put your response in the form of a question rather than a paragraph describing what you went through.  For example, “Is it normal to keep forgetting things that were so easy to remember before my breast cancer?”  or “Will the numbness in my toes ever go away?”  Remember we will have the information about your health and cancer treatment from previous HOW questionnaires, so you don’t need to repeat it.

Once you are finished, pass this email on to your online and in-person support groups and all the survivors you know!  We need lots of input!  We will pull all your questions together and make a questionnaire for survivors in the HOW Study.  Once we collect the data and analyze it, we will let you and the world know what we find.

As many of you pointed out, this is a topic which we rarely talk about because we are indeed happy to be alive.  That being said it is important for us to let the world know that there is a big price for the cure – not only in dollars but also in our bodies!  We need to remind the medical world that there is a need to find better treatments with fewer side effects.  And most important, we need to find the cause of breast cancer so that no one has to pay the price of survival.  Join us!

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13 Responses to Living with Breast Cancer? We Need Your Input!

  1. I am looking foreward to reading what you find from this questionaire! In Denmark I experience that once you have had breastcancer, you automatically become a member of an informal social network, where we svare experiences, remidies that has helped with various sideefects and unpleasent consequences of The hash treatment! I also experience that doctors and nurses are VERY aware of how un-precise and course The treatment is toddy, and say that in the near FUTURE they will be much better equipped to treatment cancer more precisely and ‘gently’ for the rest of the body!
    THANK you,
    Marianne Ottosen

  2. As you stated on my facebook metastatic breast cancer advocacy page, you are also looking for metastatic patients input too, correct? …” We are looking for women with metastatic disease to join the HOW study and also send us the questions they think should be asked regarding the collateral damage of treatment. However the only way we could figure to call out to everyone who has had cancer was to use the survivor word as you can see below. And the new study we are recruiting for in the AOW which is specific for women with metastatic disease also uses that word. Ideas???”….I am posting your commentary to clarify for the metastatic breast cancer community that you are not just looking for “survivors” .

  3. Even though a lot of the side effects are the same for early stagers and stage IV patients, there are vast differences in the information that they supply to us in regards to our debilitating treatment effects on our body and failing organs, for instance, a woman with liver mets is progressing because the same chemo she is on is taxing her liver so how do we promote a healthy liver while on chemo? How can one go about “de-toxifying” or repairing the colon and gut after chemo sloughing? How about when I was first diagnosed, why didn’t my breast surgeon give me an option to save my tumor tissue? This would have been very helpful to me when I metastasized a year later as I would have had an option to get my tumor tested and have the right chemo the first time which would have possibly saved me from liver mets-WHY wasn’t this information available to me? Or “why was my oncologist and my gynecologist so hesitant to remove my ovaries, knowing I have ER+ cancer, and waiting until I was metastatic to do so?” and my question regarding prophylactic Hysterectomy/Oopherectomy “Why did I have to hear about the option to have a total Hysterectomy on an online support group from a total stranger and not from my medical community as my Tamoxifen failed and there were no other options for an AI for me as I was pre-meno? I would have never known to ask for this procedure as my only other option would have been to continue chemo treatment for life as the post meno AI’s were not an option-yet” Where is our info regarding treatment options for an MBC patient? Another question, “Why is it that 10 years post-radiation I still have random sharp pains and discomfort in my ribs on the cancer side?”….Another question “How to recognize and treat shingles, cellilitis and mrsa..MDS”….these are all valid questions regarding an MBC patient and the severe side effects from treatment that we endure; how about letting us know if chemo doesn’t work on bone mets or that certain procedures for lung mets will/will not work and that bisphosphonates only do there job initially but as an MBC patient, the longer we stay on it as opposed to an early stage person, the drug actually starts working against us….Liver toxicity is a huge factor but what should a patient do that has liver mets? My Onc thinks it is safe for me to take up to 6 Ibuprofin (200 mg) with a 5 mm liver tumor for my spinal mets pain which is constant 24/7 pain. Chemo and the liver? When should we take breaks from chemo to rest our liver? Most Onc’s want to keep giving us treatment until our cell counts give out and only then will they give us a break-an mbc patient is scared into thinking that if they take a small chemo holiday to enjoy a summer vacation with the family then their disease will progress… how about when our blood vessels collapse to the point that they cannot even draw blood from our veins? Any tips on how to cope with painful blood labs for folks without ports? Let’s ask questions regarding titanium rods and spinal fusion surgery and is it beneficial for a MBC patient to continue with a bisphosphonate when it is obvious that the bones are deteriorating and prolonged, long term use of bisphosphonates efficacy has not been proven and is currently under study…..What about drugs that will help a patient with cognitive decline during brain mets WBRT treatment? A friend of mine complained about falling all over the place, her team of Onc’s suggested nothing, they said it is a SE of treatment-deal with it, I researched through several medical channels and published articles online and found a drug that was approved for dementia for brain mets patients yet this patient was never told about the drug-she took the info into her Onc and he gave it to her and within a week she was walking and talking normal again and taking care of her children, husband and home. Brain mets treatment is so debilitating yet you will never here about these things on cancer websites, this is where we differ from the early stage patients! Here is a link to the drug if anyone is interested! http://www.cancer.gov/ncicancerbulletin/111312/page3

  4. Wanda Chil says:

    I want to help. I found you on inspire.com in the Advanced Breast cancer section. I

    Here’s my question: When is something going to be done for us Stage IV’s? We are living longer but it seems we are being ignored by Komen, etc. Komen only has a small blurb about us, that we live “2 or 3 years”. Yet I’m on Inspire.com where I have “met” women who have been stage IV from anywhere from 8-15 years! My oncologist didn’t give me a time limit. So WHY is more not being done for US?

    Okay here’s my story:

    I was diagnosed with Stage IIIA breast cancer in November 2002 at the age of 43. I had no family history and no warning that anything was wrong, until I felt a lump high up on my right breast. I had a lumpectomy of a 3 cm tumor, and removal of 26 lymph nodes, it was positive in 4 of them. I had 8 chemos (4 A/C, 4 Taxotere), 33 radiations and spent 5 years on Arimidex.

    10 1/2 years cancer free until I got the news on June 28, 2013…it’s back, stage IV. Recent P.E.T.scans, CT scan, MRI show no organ involvement. I have a few nodules on the outside of my right lung on the lining, & “c” (I hate to say the whole word) cells in the fluid around the lung (I had pleural effusion which sent me to the dr & hence this discovery). Some lymph nodes in my chest are involved. I have bones showing lesions: pelvis, spine, ribs, tailbone, left upper arm. But my breasts are clear, which was a surprise.

    Before I got rediagnosed, I had the genetic testing done for my daughters. I am NEGATIVE on Brca 1 and 2.

    I just started Arimidex again Friday June 28th, will start Xgeva shots soon. I had to have dental work before the Xgeva and it hasn’t healed yet..

    Prognosis from my dr (same dr.): manageable chronic disease, not in crisis and not terminal. He has hope and so do I.

  5. Wanda Chil says:

    PS I tried the email, it came back

  6. If men are allowed to join maybe you could change the name to ‘Health Of Wo/Men’

  7. Victoria-what was that other suggestion “Army of WO/Men!!!! I especially like that!

  8. hellen says:

    Hello my good friends please do not see this strange cause it my life story
    about my healing, i was having HIV for good 6yrs. Things were not working
    fine for me due to my health status i know longer have friends know lover
    it even takes time before my family co-operate with me due to this i tried
    all possible means i can to get this devilish sickness out of my body i
    went to hospitals churches and other heath organization but all remains the
    same till yet i never gave up cos i was not born with this illness so i
    decided to take it over to the internet to see if i could get remedy, on my
    search i saw a testimony of a woman, she said she was also having a
    terrible sickness for over 3yrs but now she is healed i was surprise at
    first when i saw her test so she wrote a name Dr Salumbo and also
    gave his email
    id so i mailed them which is (Herbalhealingtemple@gmail.com) i told them
    about my problem and after the processes he told me that am healed but i
    never believed he told me to go and confirm it from the hospital were i
    have been taking treatment still i never believed also although he gave me
    evidence that the sickness was gone.
    Finally i decided to go for check up and to my surprise my doctor said the
    sickness was know longer there with thought of joy i started shearing tears.
    My friends today am now married bless with 2kids, so if you have any
    sickness kindly email (Herbalhealingt@gemplemail.com) sir i will forever
    remain in you debt.
    Thank you sir am grateful

  9. lizzy says:

    Special thanks go to God almighty for using dr. okorom in curing my Cancer disease, I was having a Breast cancer and doctor told me that I have two years to live, that news brought sadness into my life, I was depressed, don’t know what to do. One faithful day I saw a testimony on how a spell caster cured a lady, who is called Rachael Mark, due to her testimony the man is a great man, quickly I copied his email, then I contacted him and he asked me not to bother myself that all my problems are over. I was happy to hear such words, he told me to buy some items, though I couldn’t find the items myself he asked me to send down the money to buy the items for me, faithfully I sent him the money he bought the items and prepared a cure for me. He told me that he is going to send the cure through courier delivery service, I paid to the courier delivery service, then, I got the cure, he instructed me on how I will take the cure. I took the cure and I was freed from the cancer, I went for scanning, the cancer was no longer there. I am very grateful for what he did for me. If you have any disease you can contact him via email on dr.okoromspellhome@live.com,

  10. lizzy says:

    Special thanks go to God almighty for using dr. okorom in curing my Cancer disease, I was having a Breast Cancer and doctor told me that I have two years to live, that news brought sadness into my life, I was depressed, don’t know what to do. One faithful day I saw a testimony on how a spell caster cured a lady, who is called Rachael Mark, due to her testimony the man is a great man, quickly I copied his email, then I contacted him and he asked me not to bother myself that all my problems are over. I was happy to hear such words, he told me to buy some items, though I couldn’t find the items myself he asked me to send down the money to buy the items for me, faithfully I sent him the money he bought the items and prepared a cure for me. He told me that he is going to send the cure through courier delivery service, I paid to the courier delivery service, then, I got the cure, he instructed me on how I will take the cure. I took the cure and I was freed from the cancer, I went for scanning, the cancer was no longer there. I am very grateful for what he did for me. If you have any disease you can contact him via email on dr.okoromspellhome@live.com

  11. ODUDU TEMPLE says:

    He that work and never ask for anything thanks DR.
    ODUDU for good work for healing my brother for HIV
    sickness he was very sick for a year + and my daddy
    have spend so much money on medical care and drug
    he have being taking to some many place for healing…

    even different pastor have pray for him it get worse
    every 6 hours the man that heal with 45mins is here
    the man that the lord god have giving the power to put every thing in place the man that give a word and
    never fail my kid brother was just chatting one day
    when he see this post of jack about the curing of HIV
    virus by DR. ODUDU he ran to my daddy and told
    him about the man, my daddy decided to call him and
    confirm it if it is true about the cure, the man just
    assure him about his work that the great power of his
    fore-father and his gods cure any disease including
    HIV/AID, Ebola, Rota virus, Smallpox ,Hepatitis well we
    have hope on him which we give a try to after 45 mins
    my kid brother started getting better as i’m writing this comment he is at work now. What a miracle….. if you need help from DR. ODUDU contact him now my
    friend through his email or phone number Oduduspellteemple@hotmail.com

  12. james says:

    My name is Janet. I want to testify of a great spell caster that brought my ex lover back to me just within 24hours. You too can contact this great man also on, oduduspelltemple@hotmail.com

  13. Karen says:

    Good morning everyone, my name is Miss Bernille from USA, i have been suffering from Hiv/Aids for over 4years now, and suddenly, i have spent all my money all to make sure i get healthy all day, but happily, last month January 12th 2013, i came in contact with a traditional doctor also known as a chief priest on a newspaper who is called DR.Kumar who has help much people to cure their aids disease, firstly i taught it was a joke until i contacted him ” indiahealthcare14@gmail.com

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