For our March contest, I asked the question, “Did your doctor explain everything you needed to know about your breast surgery? If not, what did he/she miss?”  Boy, did I receive comments from a lot of unsatisfied survivors! This just shows me that the medical community needs to do a MUCH better job explaining the treatment and side effects. Most women were uncomfortable and surprised by what they felt. It’s so important to ask your doctor questions and make sure you are satisfied with the answers he/she gives you! Here are some of the responses:

“The neither the surgeon or the oncologist were honest with me and neither doctor made me aware of all the pain, depression, or later side effects I would have after surgery or after treatment. The surgeon for got to tell me how much different the left breast would be from the right, he did not tell me that I would have severe scar tissue and pain even years later, or the scaring would be so dark. The oncologist did not explain the 4 chemo treatments they planned to give me very well. She did not express all the side effect, how much damage it would do to my body, or what I was going to have to live with the rest of my life. One big thing to me is all the pain I still suffer, and the rash I will have for the rest of my life from the radiation.” Marsha M., Pink-Link member

“During a break between my initial chemo treatments and the stem cell portion of my treatment, I felt good one day and cleaned out my medicine cabinet.  There was a little pain and it felt like there was some fluid running in my chest.  When I mentioned it to my surgeon, he laughed and said that if it hurt to take Motrin.  When I went back to school at the beginning of the next year, I had had a sub for over 100 days and had 3 file cabinets to clean out.  I did what my surgeon had advised and took Motrin.  That was 15 years ago.  I have had my arm wrapped twice, been hospitalized twice with infections and several other infections that my home physician has managed to keep controlled.  If I had gotten the correct information to begin with,  I feel that a lot of expense and suffering would have been avoided. Feels good to get this off my chest!” Judy H., Pink-Link member

“Did my doctors explain everything about my mastectomy and trans flap?  No, I never expected the extreme fatigue, the long recovery, the lack of feeling in those areas (which was probably a good thing)..  the never told me my stomach muscles would never be the same, never work the same or as well, especially when moving my bowels! They did give me a lot of technical info, I can’t complain.  Perhaps it is different with each individual, but I just felt like a zombie for so long.” Melissa M., Pink-Link member

“Some things my doctor never told me: I did not know the drainage tubes would be taken out in the doctors office.  I did not know that the removal of the drainage tubes would be as painful as it was.  The nurse could only remove one tube.  The other tube had to be removed during surgical implantation of a Port. I did not know anything about wearing comfortable clothing when leaving the hospital. I did not know about the affect the chemotherapy would have on me. I did not know why certain medications would be prescribed. I was not told that there could not be any needle pricks in my left arm.  Therefore, the PM shift nurse took blood out of that left arm.” Beverly R., Pink-Link member

“No, my doctor did not tell me everything I needed to know.  Both the nurse in his office and the nurse in post-op said “DON’T TOUCH THE BANDAGES WHERE THE INCISION IS!!!”  When I went back for my 10 day follow up — he was angry — not at me but at them for telling me that.  But he never told me.  He also never said that the pain would start once the nerves grew back a year or so later.  It has since subsided, but it was cause for alarm!  Had additional surgery a month after lumpectomy to remove several  lymph nodes to double ck and I didn’t know that could result in lymphedema, but it did. They leave you in the dark sometimes, but somehow we get through it!!!” Marilyn M., Pink-Link member

“My doctor was very thorough about the details of the surgery in terms of what was going to happen to my breast. I actually went through two surgeries – a lumpectomy, and then a mastectomy. I am almost at my 5 year anniversary, and cannot remember if she gave me details about drainage and such after the second surgery. However, the hospital staff (Fairview Hospital, Edina, MN) was excellent. The nurses explained all about the drainage tubes, follow-up procedures and what needed to be done at home for a healthy recovery. They also had post-op camisoles available for purchase that had pockets for the drain tubes, etc. There were 2 options, both with some sort of lace or decoration, along with fiberfill “poffs”  that I could use once the surgery site healed. I bought 1 of each option. When I left the hospital, I felt that I had a nice option for undergarments for my new body shape. It made a HUGE difference in my early recovery. I only had one breast removed, chose not to have reconstruction surgery for a variety of reasons, and have since found a wonderful store that helps me with my breast forms and undergarment options. (Underneath It All in Eden Prairie, MN).” Sandy E., Pink-Link member

What about you? Did your doctor tell you everything you needed to know? Please comment here.

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This is a guest post by Elizabeth Fine, LAc

In between treating patients at my Acupuncture and Chinese Medicine practice in Los Angeles, I really enjoy cooking for my family.  Recently, I wanted to make a great chicken soup, which I love for all of its health benefits, and when I had finally gathered all of the ingredients, I realized that I had gone to three different stores and had spent more money than I’d ever planned!   As a result, by the time I got home to start making the soup, I only felt ready for a big nap, not ready to cook!

Have you ever felt that way about your breast cancer treatment or survivorship care? Patients often complain they are going to too many appointments, spending more money to get limited information, or have nowhere to begin looking for options to explore.  Completing the optimal ‘recipe’ for your personalized care may include new ‘alternative’ treatment modalities, but it may feel too daunting to try and make any changes, or to not have any direct information, much less how to make a plan.

Having treated hundreds of women in my own practice for over ten years, I have seen this separation of services and information as a large hurdle patients have had in getting the best and most comprehensive care that they seek.   Unfortunately, breast cancer centers across the country have not traditionally been places for women to receive information on alternative choices, often lacking resources towards integrative approaches or access to quality practitioners.

‘Holistic’ care until now has been usually referred out to an individual specialist’s office, such as an Acupuncturist like myself, but is too often isolated from all of the other healthcare professionals communicating together about your case, and also isolated from other kinds of treatment modalities.   More and more women are asking, “Are there alternative ways to help, and if so, what are they, and how do they really work with my other doctors and treatments?”  In addition, women who may be aware of high-risk factors are now also looking for access to information and need support systems.

I am so very privileged to work with a truly integrative team of professionals within the Samuel Oschin Comprehensive Cancer Institute at the Cedars-Sinai Medical Center in Los Angeles, where we are addressing these kinds of issues, and guiding women to options in a more comprehensive way.  This program, called “Journey To Wellness” is an innovative and inclusive approach that speaks to the kind of individualized care that women are now demanding.   Our expert team incorporates an Acupuncturist, a Physical Therapist, Nutritionist, Social Worker, Geneticist, Nurse Practitioner, and a Meditation instructor.

A wide variety of patient-centered support can be offered after surgery, chemo, radiation, and subsequent drug therapies.  There is effective help available for challenging symptoms from hot flashes, lymphedema, fatigue and “chemo brain”, to body aches, weight gain, anxiety and depression, and even post-operative complications.   We also have a separate program that serves women with high-risk factors who are looking to decrease risks and increase their awareness of prevention.

In fact, a very recent research study shows that Acupuncture can be used successfully to decrease hot flashes in women with breast cancer.  

Developing more comprehensive care, which includes alternative treatments integrating alongside more ‘mainstream’ choices, is the crucial step in getting women better quality health and healing.   It is my hope and belief that we will all continue to develop access to the most effective treatment modalities, working together to eradicate breast cancer and encourage real wellness for survivors.

Elizabeth Fine, LAc is a licensed Acupuncturist in Los Angeles, CA who has been treating patients alongside Cedars-Sinai Medical Center for over 10 years, working significantly with cancer patients of all kinds. She is one of the very few in L.A. who is privileged and authorized to perform Acupuncture within their hospital.  Specializing in women’s health, Dr. Fine works extensively in oncology and reproductive & infertility medicine alongside the top physicians and clinics in the area.

For more information on Acupuncture ~ Please contact Elizabeth Fine at Elizabeth@fineacupuncture.com or visit her Website: www.fineacupuncture.com

To contact Journey To Wellness directly – Please Call: (310) 423-9331

Learn more about all the breast care programs at Cedars-Sinai: www.cedars-sinai.edu/breast

 

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2014 New Year’s Resolutions

March 3, 2014

Every year, we receive 10 copies of Beyond Boobs Survivor Calendar, A Calendar to Live By. So, for our December contest, I asked for the top 3 New Year’s resolutions our members have been thinking about. Here are the top 10 responses we received. What are your top 3 New Year’s resolutions? 1.  Get Better […]

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The Most Important Type of Support

February 5, 2014

For our October contest, I asked the Pink-Link members to describe their most important type of support. Here are some of their responses. My most important support before,  during & after treatment has always been my husband.  He never made me feel like I was fighting alone.  I wish I could do more to show […]

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Combating Cancer While Consuming A Culinary Champion

February 5, 2014

This is a guest blog post by Sylvia and David Burnett Life can often times be pressure-filled and stressful with sickness becoming all too common in our society, although, these may be present, hope is also present too! Hope in the middle of our personal struggles and storms can be the cog which empowers us […]

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The “New” Normal after Breast Cancer Treatment

January 7, 2014

For our August/September contest, I asked the Pink-Link members to describe their “new” normal. Before you were diagnosed, your “normal” life consisted of work, kids, husband, play, etc. But, AFTER your diagnosis, you experienced a “new normal.” Here are some of the responses we received describing a new normal.

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Feeling Sexy after Cancer Treatment

January 7, 2014

Breast Cancer treatment can take away your feelings of femininity and sexiness. For our July contest, I asked our members to describe what makes them feel sexy. Here are some of the responses. You can also check out Barbara Musser’s website for more information about regaining your sexiness after treatment.

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Handling Stress during treatment

December 6, 2013

Going through breast cancer treatment is hard and stressful! I’m so thankful that my husband was with me every step of the way! But, it was still very stressful dealing with kids, schools, grocery shopping, dinners, exercising, etc. For our July contest, Jude Callirgos donated 10 copies of her book, “Breast Left Unsaid.” She is [...]

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My Silver Lining

December 6, 2013

For our June contest, we gave away a copy of the book, “The C Card and Me,” by Ali Gilmore. In her book, she talks about her silver lining from breast cancer. Now, I would never wish breast cancer on anyone, BUT I feel that breast cancer was a blessing in my life. It taught [...]

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Living Beyond Breast Cancer (LBBC) and 5-hour Energy

October 16, 2013

Last week, I was watching television and happened to see a commercial for the 5-hour energy drink. Normally, I’d change the channel, but what got my attention was the fact that they had partnered up with Living Beyond Breast Cancer (LBBC), an organization that I’ve followed over the years and loved. They do some great [...]

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