A portrait of advocate Anne Jacobs

Community Member Spotlight: Anne Jacobs

Meet Anne Jacobs, a community member for AdvancedBreastCancer.net who has been living with breast cancer since her initial diagnosis in 2003. She shares her story with us.

How & when were you diagnosed with metastatic breast cancer?

I was initially diagnosed with stage 3 triple-positive breast cancer in January 2003.

During my monthly self-breast exam in December 2002, I found a lump in my left breast, requested an appt with my OBGYN who sent me to get a mammogram. The mammogram didn’t show the lump (because I had dense breasts; but I didn’t know about dense breasts until years later), so I walked across the hall to get an ultrasound which showed the lump and many calcifications. A biopsy was scheduled and by that time, I had 3 palpable lumps in my left breast.

All 3 biopsies showed breast cancer. I chose to have a bilateral mastectomy even though my right breast was clear. I wanted to get all of the breast tissue off of my body because I didn’t want to take a chance that cancer would eventually end up in my right breast. (Also, I am a Libra and like things balanced ~ a bit of humor here).

I instantly knew that my cancer was fast growing and I asked to have surgery sooner than 3 weeks out; it was scheduled the next week. By the time of my bilateral mastectomy surgery, my left breast was dimpling and there were 5 lumps.

When I was healed enough to start chemotherapy, I started and completed 6 rounds of A/C; this was thought to be aggressive in 2003. I thought I was then done with breast cancer!

Less than a year later, after a backache wouldn’t go away, I had X-rays done of my lower back which showed metastatic breast cancer in my L3-L5 area and my left hip. A PET/CT scan showed that there was also a suspicious spot in my right lung, but at the time it was too small to biopsy. It later turned out to be breast cancer.

I have been on treatment for metastatic breast cancer consistently since 2004 with only a few breaks over the years.

Because the characteristics of my cancer are more aggressive, I will always be on treatment. My ideal situation is to be stable or NED while on treatment. Once the cancer becomes noticeably more active, I change treatments.

What type of breast cancer do you have?

I have triple-positive breast cancer.

Was it recurrence or de novo?

It was officially recurrence but I believe if a PET/CT scan was done after my stage 3 treatment had ended, metastatic cancer in my spine would have been detected.

What information/support was most helpful for you when you were newly diagnosed?

In 2004, there wasn’t as much support as there is now. I found breastcancer.org discussion boards to be the most helpful. There was also a local breast cancer non-profit that had metastatic breast cancer support groups, but I wasn’t drawn to the idea of support groups at the time.

My husband and 3 sons were and are remarkable in their endless support of me. I received invaluable love and support from close friends and family through conversations, encouragement, meals, arrange for the cleaning of our home, and help with our 3 sons.

What's your favorite part about AdvancedBreastCancer.net?

I enjoy the positive posts on Instagram and the articles posted. Even though I am in my 17th year, fortunately, advances in breast cancer are always being made, and I love to read about those advances, as well as how cancer affects other’s lives. I always come away from ABC’s posts with something new or reinforced.

How has online support helped you?

I am a member of 3 closed Facebook groups:

  1. All metastatic breast cancer
  2. HER2/neu positive
  3. Integrative approach to breast cancer

I also visit the discussion boards on breastcancer.org., and follow various metastatic breast cancer Instagram accounts.

Online support gives me a sense of not being alone and inspiration to keep going; I get feedback from women who are going through what I am; I get ideas from other women’s approaches to their MBC; I get questions answered and learn from others’ experiences. I also am happy that I can be on the giving end as well and to offer hope.

What 3 pieces of advice would you give to someone who is newly diagnosed with metastatic breast cancer?

This is more than 3 pieces of information but I think these are all important:

  1. Breathe and focus on the here and now. Be conscious of breathing deeply a few times throughout the day. This helps with stress.
  2. Do not look up longevity statistics online as they do not apply to you as an individual and are probably outdated.
  3. Exercise when you can.
  4. Trust your instincts
  5. There are many online support communities for metastatic breast cancer that can prove to be very helpful. It is easy to become overwhelmed with all the information/advice which is out there. Take your time to go through the information, decide what is right for you and see how/if you can or want to apply it to your life.
  6. Write everything down (questions you have, symptoms you may have, etc.) and take someone with you to your doctor appointments so they can write down answers to questions, decisions made, etc.
  7. Do not be afraid to ask questions until you get the answer that makes sense to you. Your doctors are part of YOUR team to help you live the best life you can for as long as you can
  8. It is okay to get second opinions.
  9. Have a conversation with your doctors about what is important to you in your medical relationship/interaction.

Questions to consider when working with your doctor

Here are a few additional questions that I have found helpful when deciding on the right healthcare team.

  1. Do you like to get as much information as possible to make the best possible decision?
  2. Do you just want him/her to make a recommendation?
  3. How important is quality of life vs. type of treatment?
  4. Does your hospital system have counseling services, integrative oncology department, breast cancer navigator, cancer nutrition services, to which you can be referred or have access?
  5. Does the doctor's office/hospital system use an online portal? If so, how do you sign up?
  6. If not, how do you get test results and how do you communicate with the doctor’s office?
  7. Is there a co-payment advisor in your hospital system/doctor office that can provide you with information to have any of your treatment covered by an entity other than your insurance provider?
  8. When and how are you notified about scan/test results?
  9. Do you want results to be posted after the doctor reviews?
  10. Do you want results to be posted as soon as a report is available prior to review?
  11. Do you want to wait to review results at your next doctor appointment?

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AdvancedBreastCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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