Breast Cancer Stories

O U R S T O R I E S

We all have our stories and by telling them, we perhaps understand ourselves better and at the same time, provide insight for others. Our group felt that it might be helpful to share our initial diagnosis', our treatments and our “words of wisdom” with the hope that you might find the information helpful. We have also included our e-mail addresses and are more than anxious to talk with you!

This section is also a place which you can share your own experiences. If you come across a breast cancer story on the Internet or would like to share your own, e-mail us with the link or your text and we'll post it ASAP.

THE WOMEN & THEIR STORIES

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Pat Castillo
Nancy Cheung
Becky Connor
Diane DeTar
Linda Groffie-Balint
Elsie Halsell
Pat McCune
Carol Scholz
JoAnn Semones & Julia Barrow
Susan Silver
Sandy Shereman
Regina
Diane Varner

Links to Other Stories on the Internet

PAT CASTILLO

Type of breast cancer: Invasive ductal carcinoma, Stage II, tumor size 2.3 centimeters

Initial Treatment: Surgery: Lumpectomy, Sentinel node biopsy, and axillary lymph node dissection (total of 13 lymph nodes removed).

Post Surgery: 6 months of chemotherapy (CMF, which is cytoxan, methotrexate, and 5FU), 2 months of radiation treatments which I did while I was on chemo., and 5 years of Tamoxifen since my tumor was hormone receptor positive.

Words of Wisdom: Take someone with you to all your initial visits with your medical team so that you have help remembering everything...or take a tape recorder with you. Keep a small notebook with you all the time to write down questions you may think of....and leave space to write answers. With so much going on it's very easy to forget to ask those questions at your next appointment. Talk about your illness with family, friends, etc. Don't try to keep it a big secret. And if you're lucky enough to form good relationships with other women in a support group you'll find yourself being able to cope with everything much better because you will realize that you are truly not alone.

E-Mail: Pat Castillo... I would be more than happy to talk to anyone!

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CAROL SCHOLZ

Type of breast cancer: Invasive ductal carcinoma, stage I, tumor 2 cm, 1 lymph node involved, HER 2 NU over expressed, estrogen and progesterone responsive.

Initial Treatment: Lumpectomy followed by a re-excision to get a clearer margin, 3 sentinel nodes and 10 additional lymph nodes removed. Surgeon was Jocelyn Dunn - absolutely first rate as a person and a surgeon - she has no formal contracts with insurance carriers.

Post Surgery: Chemo Treatments: I used the National Cancer Institute website to find a local clinical trial of Herceptin. Insurance issues forced me to be pretty aggressive about getting approval for treatment at Stanford's Oncology Department. It was an emotional roller coaster that ended with approval for participation in the trial. I received 4 cycles of Paclitaxel in 3 week intervals. During this same period of time I received Herceptin weekly for 10 weeks. This was followed by 4 cycles of AC (Doxorubicin and Cyclophosphamide). This was followed by 6 weeks of daily radiation. I am now taking Tamoxifen daily.

Words of Wisdom: The whole experience wasn't horrible. It was more like a very long, tough endurance test. The worst part was getting the diagnosis. Once treatment was underway and a routine established, I felt much less anxious. You just have to hunker down and get through it.

Clear your calendar. It is a great time to unload all those nagging commitments that no longer bring you satisfaction (you know, the old silver lining idea). You will most likely only have enough energy to deal with the essentials. Tell your neighbors and everyone important to you what is going on and accept all offers to help. One friend volunteered to be a meals coordinator. Dinner was delivered for 3 days following each major chemo treatment. As I became increasingly debilitated towards the end, this was increased to 5 days. Another friend coordinated rides to and from treatments. My husband and children had plenty to cope with and were very appreciative and I could refer people who wanted to know how they could help to my 2 coordinators. Movies - in movie theaters - are a great diversion if you have trouble getting outside of yourself. Pack a lunch and go to a matinee alone - its more fun that it sounds.

I'd say the most complicated part about cancer treatment is dealing with the "patronizing cheeriness of brisk denial that most sick people have to deal with" (Jon Carroll 4/29/02 SF Chronicle). .. Once that wig and a little makeup are in place you look pretty good. I never did feel comfortable with all the little pep talks people felt free to give me. I always felt that I would be OK in the long run it was how I felt in the short run that needed validation. That is where the support group came in.

Join a support group. These are the people who know exactly what you are going through or have been through. As good as it feels to keep up appearances for your friends, these are people that understand a fatigue that is pretty hard to describe to someone who hasn't experienced it. It was an enormous relief to be in the presence of these other women. Support groups are a great source of information, an opportunity to compare notes about your treatment , a chance to share lots of laughs - there is humor even in the worst of situations and most important an opportunity to make new friends.

Finally - get as much exercise as you can tolerate followed by as much rest as you need if at all possible.

E-mail: Carol Scholz “I am more than happy to talk any time.”

NANCY CHEUNG

Type of breast cancer: Invasive ductal carcinoma, Stage II, tumor size 1.4 centimeters, HER2/neu positive.

Initial Treatment: Lumpectomy, Sentinel node biopsy, and axillary lymph node dissection (1/9 nodes positive)

Post Surgery: 4 cycles of chemotherapy (AC, which is cytoxan, Adriminxin), followed by 2 months of radiation treatments then followed by 4 cycles of Taxol. Currently on tamoxifen since my tumor was hormone receptor positive.

Words of Wisdom: When I was first diagnosed with the disease, I wanted to find all the information on breast cancer. My surgeon gave me the book written by Susan Love, “Dr. Susan Love's Breast Book”. I found the book very helpful and it gave me the information I needed at that time. My suggestion to newly diagnosed BC patients is to try to find a support group; a good support group is going to give you a lot of support during the time of your treatment.

E-mail: Nancy Cheung “I would be more than happy to talk to anyone!”

BECKY CONNER

Type of breast cancer: Diagnosed at age 39 with invasive ductal carcinoma, stage III

Initial Treatment: Modified radical mastectomy (unilateral), reconstructive surgery, and axillary lymph node dissection (total of 9 lymph nodes removed, 4 malignant).

Post Surgery: Chemotherapy...3 months of Adriamycin/Cytoxan followed by 3 months of Taxol. 6 weeks of radiation treatments some of which I overlapped with chemo. My tumor was estrogen receptor positive so I'll be taking Tamoxifen for 5 years.

Words of Wisdom... My advice: Pay attention to what you need to do to take care of yourself physically, emotionally, and spiritually. ie - Eat the foods that are right for you at this time. Exercise if it feels right at this time. Take comfort in the abundance of emotional support that is there for you. Maintain a healthy attitude. You are unique. You have individual needs. Zero in on what they are and take good care of yourself.

E-mail: Becky Conner “Let me know if I can be of help.”

LINDA GROFFIE-BALINT

Type of breast cancer: invasive ductal carcinoma, stage II, 2.1 cm tumor DCIS lobular carcinoma in situ

Initial Treatment: Surgery...lumpectomy and axillary lymph node dissection (21 lymph nodes removed, 3 malignant) mastectomy and tissue expander inserted behind chest wall for future reconstruction because I did not get a clear margin with my lumpectomy and a re-excision would deform my breast breast reconstruction using silicone implant and a saline implant in the other breast to match the reconstructed one since I went up a size from an A to a B!

Post Surgery: 6 months of chemotherapy CMF-(cytoxan, methotrexate and fluorouracil) followed by 6 weeks of radiation (because I still didn't get a clear margin with the mastectomy), tamoxifen for 5 years because my tumor was hormone receptor positive

My experience and a bit of wisdom: I think the scariest part of the whole ordeal was getting the diagnosis and figuring out what plan of treatment I should follow.That caused the most stress for me. I had a great support network of friends and family that were there for me the whole way, including my husband and 8 year old daughter. I think you should follow your gut feelings about what treatment plan you should follow and not go with what everybody else seems to be doing. Get all the facts, maybe even several opinions, if that is what it takes to help you make up your mind. I got 3 opinions before I was able to make my decision as to what chemo to take. Do things that make you feel good about yourself. I tried meditation, yoga and Stanford's support group. The support group turned out to be a bonus because I made some wonderful friends that are going through similar stuff. If friends offer help, take it because it really does help you and your family and it helps your friends feel like they are doing something, instead of feeling helpless.

E-mail: Linda Groffie-Balint “I would be happy to talk to anyone that wants some information.”

PAT MC CUNE

Type of breast cancer: Ductal Carcinoma in Situ (DCIS) inside a Papilloma. (Wart inside the duct). Stage 0 found only because of nipple discharge. Unable to be seen on Mammogram and not palpable.

Initial Treatment: Needle Loc and Surgical biopsy followed by Lumpectomy for wider margins.

Post Surgery: Radiation therapy for two months followed with Tamoxifen for 5 years with regular checkups with Oncologist and Surgeon.

Words of Wisdom: Depend on your family and friends for support. But be sure to join a support group with other people that are going through the same situation. Always get a second opinion and have faith in your Doctors Be sure to do a lot of research about your type of cancer before you decide on your treatment.

I learned to put myself first and give myself the time I need for me. The other good thing that happened was that this has brought my husband and I closer together. He was very supportive and said he would stand behind me in whatever my decision was for treatment. Most important he was there when I needed him.

I worked half-time during my Radiation Treatments as it keep me and my mind busy. I was a tired but at least I was able to sleep better at night. Be strong and take good care of yourself because you deserve it!

E-mail: Pat Mc Cune "Please contact me as I would be happy to chat or help in any way I can."

SUSAN SILVER

Type of breast cancer: Non-invasive Ductal Carcinoma In Situ.

Initial Treatment: Surgery... Lumpectomy, Sentinel node biopsy.

Post Surgery: No post-surgical treatments, although the standard treatment of radiation was recommended (Tamoxifin would have been recommended except for my age and the possibility that I may still want to have children). My decision to forego radiation was based on a second opinion I received from a pathologist who specializes in DCIS. He based his recommendation on my tumor size, grade of cancer and the fact that I had clear margins. His own research had shown that, in cases like mine, adding radiation wouldn't make a difference in the recurrence rate (7% either way). Rather, I chose to be very proactive in my follow up with my surgeon and also includes MRI scans in addition to mammograms.

Words of Wisdom: First and foremost, be good to yourself. Give yourself the space to grieve and surround yourself with supportive people (if you have an opportunity to join a support group, do it). Don't be afraid to ask questions and get second opinions.

E-mail: Susan Silver I would be more than happy to talk to anyone !

SANDY SHEREMAN

Type of breast cancer: Invasive ductal carcinoma, Stage IIA, tumor size 9mm (not palpable, discovered via annual routine mammogram) and ductal carcinoma in situ.

Initial Treatment: Lumpectomy with sentinel node biopsy, and axillary lymph node dissection (9 or 10 nodes removed), followed by mastectomy (warranted by the fact that I had multi-centric disease), with immediate placement of a tissue expander in preparation for breast reconstruction. Silicone Implant and Breast reduction/lift for symmetry.

Post Surgery: 8 cycles of chemotherapy (4 cycles of AC (adriamycin/cytoxan) followed by 4 cycles of Taxol. No radiation. 5 years of Tamoxifen.

Words of Wisdom: Don't tackle this alone. I found a support group invaluable. For as supportive as my family, friends and co-workers tried to be, I found great comfort in the presence of those who were experiencing the same thing as I was experiencing.

Get as much information as you need to make you comfortable about the treatment options presented. You have to buy in to the treatment your physicians are prescribing. Ask as many questions as it takes. Take notes. Write down your questions and their answers. Tape record the sessions. Take along a second set of ears.

I was able to continue working throughout my chemotherapy. I found it helpful (although I'd wear out about 2 pm daily) to keep my mind busy. I was lucky, in that regard, as my employer was very supportive.

E-mail: Sandy Shereman

DIANE VARNER

Type of breast cancer: Diagnosed at age 42 with tubular invasive carcinoma, Stage I. Palpable, 9mm, estrogen receptor positive. Had previously had a needle aspiration two years prior to the diagnosis. At that time, it was considered benign.

Initial Treatment: Lumpectomy, sentinel node biopsy, and axillary lymph node dissection. No lymph node involvement.

Post Surgery: 6 weeks of radiation, 5 years of Tamoxifen.

Words of Wisdom: I have to say that for me, the time between being told that you “might” have cancer and then finding out that indeed you do was the most difficult! Your life is turned upside down and you realize, without a doubt, that you've lost the little control that you “thought” you had. Try to remember, things do indeed get better. Be kind to yourself, give yourself the time you need to absorb the changes that are taking place in your life. Accept the love that others will be so anxious to give you even though you might feel that you can “handle it” by yourself.

If possible, join a support group—it can be your lifesaver. There will be doorways and gateways which you won’t want to pass through but will have no choice. Having the support of group members to help you through those times will be invaluable, not to mention the sharing of information in regards to treatments, medications, etc.

Once diagnosed with cancer, I believe that life is never quite the same. But I'm happy to say (now having had some time for reflection) this can be a good thing. Despite all the darkness, it brought me to a better place for myself spiritually and introduced me to wonderful women (and some men... Dr. Dirbas & Dr. Carlson) whom I would never have had the experience of meeting otherwise.

Last but not least, if you keep journals or have thought about doing it in the past, now's a great time to start. It's a wonderful way to get out those overwhelming feelings that are going to come up. If interested, you can read some of my journal excerpts that I wrote after surgery, and my reflections of the first support group meeting I attended.

E-mail: Diane Varner “I'm anxious to help in any way possible!”

STORIES CONTRIBUTED BY OTHERS...

ELSIE HALSELL

Type of breast cancer: Diagnosed at age 52 with ductal breast cancer.

Initial Treatment: Complete mastectomy with reconstruction.

Post Surgery: 4 Chemo Treatments

Read Elsie Halsell's harrowing and heartfelt experience from the time she learned that she had breast cancer to the time when she could finally say to other women “I assure you that THERE IS LIFE AFTER BREAST CANCER.” Click here to read her story.

E-mail: Elsie Halsell

REGINA...

“No matter how hard it is, it amazes me how we can rally to fight when we have to...

Knowledge is power, and when you have a disease that can make you feel powerless, taking control of what you can by becoming informed returns to you some of that power. Controlling what you can makes you an active part in your treatment and recovery. Try to be strong and learn what you can to help you and your doctors fight.”

Visit her website: “My Cancer Odyssey”

DIANE DE TAR

I lost my dear sister Diane to Breast Cancer on July 18, 2002 at the age of 52. With dignity and grace, just as she lived her life, our precious angel has entered into eternal rest. Before Diane died she wanted so much to share her story with the world in hopes that her experiences with breast cancer would help others.

I invite you to visit her website: Living Life with Breast Cancer
And Dying with Dignity, to read what she has left behind for not just her family but for all of us. I sincerely believe, that even in death, Diane is helping so many people dealing with this dreaded disease through her web site.

Sincerely, Lyn Bissonette (Diane's brother)

JOANN SEMONES (left) AND
JULIA BARROW

Two years ago, my partner (and best friend), Julie Barrow, was diagnosed with advanced breast cancer. As dedicated as I was in the role of caregiver, I often felt that I was only standing by. After all, I didn't have the disease. In time, I realized that I shared the same fears and celebrated the same victories as Julie. Her journey became my journey as we fought the battle side by side.

Before Julie's diagnosis, we spent many hours engaged in coastal volunteer work, including as lighthouse docents, near our home in Half Moon Bay. Our love of the sea helped us through the uncertainty of a year of treatment, and now, we are both survivors. These combined experiences led me to write “Lighthouse Whisperings.”

Click here to read "Lighthouse Whisperings"

MORE STORIES FOUND ON THE INTERNET...

• Faces of Breast Cancer: Each person in the in the gallery   represents the approximate 1000 that are diagnosed every
  two days in the US.
• Lifetime Viewers share their struggles and successes
• Susan G. Komen: Celebrating Survivors... their stories.
• National Breast Cancer Center... Stories from women & men
• Show Me Personal stories...
• Journal of a Living Lady by Nancy White Kelly - humorous,
but honest look at the course of metastatic breast cancer in
the life of a 54-year-old female.
• Shared Stories by Many Survivors ... share your own story
• Personal Breast Cancer Stories
• Margie's Speech Margie's Speech given at the Relay for Life,
   April 2001
• Stories of Hope & Inspiration
• Facing Breast Cancer, Embracing Life: Four Greenebaum Cancer   Center patients share their breast cancer experiences
• Breast Cancer Haiku: Survivors, Thrivers, Warriors -- whatever
you call us, these words speak eloquently and sometimes   humorously about our experiences and feelings.
• Available Light: My name is Lauren Brower, I'm 34 and on
Oct 10, 2000 I discovered a lump which was found to
be cancerous.
• Breastlink: Stories of breast cancer survival.
• Natalie Boston was 26 when she found what every woman
dreads - a breast lump
• A breast cancer diagnosis has a profound impact on your life...
• I was diagnosed at the age of 31...
• There was no way she could have breast cancer...