The Empowered Family: Cari’s Story

“And that’s where the cancer is….”.  These six simple words, said so cavalier, tore my world apart and my life hasn’t been the same since they were uttered two years ago.  It was July 2020 and I was laying in a darkened room while a doctor examined mysterious subcutaneous bumps via ultrasound.  I felt my face flush and my lips and fingers began to tingle.  The doctor went on to show me two large masses and an abnormal lymph node.  I’m not really sure what he said next… my mind was a whirlwind of thoughts, but mostly I thought… why? And better yet, how?? I had had a mammogram and ultrasound six months prior and there was nary a shadow let alone a large 7cm mass yet here I was not even a year later with what everyone was one hundred percent sure it was a malignant tumor.  

I left the imaging place with instructions to return the next day to get a biopsy as soon as possible.  I sat in my car and cried.  I came home and hugged my two little boys who were 8 and 2 at the time and imagined how their lives would turn out if they grew up without a mama. How was it possible just the day before I was worrying about my statistics final??  

The next few weeks would be a whirlwind of appointments and imaging. New faces, needles, and pokes and prodding. I would discover my cancer was invasive ductal carcinoma, HER2+, Estrogen positive.  Unfortunately I would also learn that I not only had affected lymphnodes but two teeny tiny spots of cancer on my liver. I was officially upgraded to a stage 4 patient.  I was devastated to realize I would never be cured. The most I could hope for would be long remission.  

Less than three weeks later I was hooked up and ready for my first infusion, a deadly cocktail of Docetaxol, Carboplatin, herceptin and perjeta. I underwent 16weeks of the poison that was supposed to “fix me.” During this time I continued to work and go to college.  I’d conduct speech therapy sessions from the infusion room. My oncologist managed my side effects well, but nothing could be done about the hair loss. That’s when my sister and my niece decided to take control and shave my head.  

During the workup at one of the many appointments, my surgeon, an amazingly kind and gentle soul, Dr. Rebecca Viscusi offered genetic testing since I was so young and otherwise in fantastic health.  I agreed to do the genetic panel not expecting much of anything to come back but wanting to know if maybe getting cancer wasn’t my fault.  My genetic results came back as having a germline mutation in the P53 gene, a condition referred to as Li Fraumeni Syndrome.  This gene is a tumor suppressor and ensures your body does not allow unhealthy cells to complete the mitotic cycle.  In my case, my P53 genes don’t work right so my  body allows damaged cells to reproduce.  Women with P53 mutations have a 99% chance of developing cancer in their lifetime because of the already elevated risk of developing breast cancer.  

So there I was… full of disease and also defective in some way.  My first instinct was to check my kids.  My geneticist, Rachel Adger, worked with my childrens’ pediatrician to get them tested.  It was a 50/50 chance either way for both of them.  Unfortunately my youngest son, who was 3 by this time, inherited the genetic mutation from me, but that is another story.

During my first PET scan, my medical oncologist, Dr. Aisha Ahmed, noticed a spot in my brain she was certain was not a metastasis of the breast cancer, but wasn’t sure what it was in general.  Now that we knew I had LFS, any abnormality had to be taken seriously and she referred me to a neurosurgeon.  Right away I clashed with the doctor and his staff.  I will not mention his name, but I was not well taken care of, I was not treated with respect, and I was not taken seriously.  It was at this point I decided to request a referral to Mayo Clinic and get a second opinion.  I had the pleasure of working with an amazing surgeon by the name of Bernard Bendok.  After numerous MRIs, a functional MRI, and a perfusion MRI we still weren’t sure what the mass was. It had not changed, but again, being the genetic anomaly I am, Dr. Bendok and I erred on the side of caution and decided to remove it and have it biopsied.  

The pathology came back as a grade 3 astrocytoma that would require chemotherapy (a shortened and lower dose because I’m already at risk for leukemia) and proton therapy (not radiation because radiation is dangerous for people like me!) my insurance did not want to pay for.  I did the proton therapy at Mayo Clinic with Dr. Terence Sio and his amazing team. The social workers and techs became not just part of my care team, but also friends.  We listened to music together, we talked about our kids, and on my last day of treatment, we celebrated together.  After the proton therapy I underwent 6 months of oral chemotherapy and as of March 2022 I am officially on maintenance therapy and surveillance.  

During this entire time I have managed to continue working mostly full time, take care of my kids, graduate from college and get accepted into a master’s program. I wouldn’t say I’ve quite adapted to life as a chronic cancer patient but I have definitely accepted it.  My infusion nurses are some of the best friends I have.  As a “lifer” patient, we’ve gotten to know each other and by association, each other’s families.  I have met amazing people during this experience: social workers, advocates, patients, doctors.  Sometimes I still get a little discouraged or bummed out, knowing I will never put this behind me. Knowing that every single thing in my life has to revolve around a treatment regimen. Knowing that I will never sign the wall or ring the bell signaling the last chemotherapy treatment.  But I have also realized the physical weight of this is heavy enough, I don’t need to add any mental weight to it.  

I have also learned that it is so beyond important to not only trust who is in your corner or on your care team, but make sure they can and will advocate for you as needed.  If you don’t have a doctor willing to do that, it’s a giant red flag.  If that first neurosurgeon was the be-all end all opinion, I’d be dead right now.  That leads me to the second thing I’ve learned:

I have learned that you must also advocate for yourself.  Information is readily available to us by a simple click of the button.  Be informed and be knowledgeable.  You are the only one that has to live with the decisions made about your treatment. 

I could give you a lot of crap about how I learned to appreciate the little things, and to cherish the “small moments” but let’s be real: that lasted about a month.  That in itself was reminded me that no matter what my diagnosis was, I was still me.

I get nervous and unbearable anxiety when I have imaging or blood draws. The slightest jump in numbers sends me into a tailspin, and it will most likely be that way forever.  I’m not saying that to make you feel bad, but to remind you that it’s ok to be scared but it’s not ok to let it consume you.  

The Empowered Family: Cari’s Story2022-12-12T03:32:11+00:00

Clinical Trial Experience Interview: Hedva Gonen, Melanoma Cancer Survivor

We are interviewing members of our community about their experience participating in clinical trials. Your story could save lives. If you would like to be interviewed, please complete this quick questionnaire. 

Dr. Hedva Gonen is a biochemist working on the faculty of the Technion Israel Institute of Technology. She is also the CEO and founder of the Israeli Melanoma Association. Hedva is very willing to speak to other cancer patients about her trial experience. If you would like to speak to her directly please contact us here and we will be happy to put you in touch.

1. When were you first diagnosed with malignant melanoma?

I was first diagnosed with malignant melanoma in 2013.

2. Can you describe your cancer treatment journey?


In March 2013, I was diagnosed with metastatic melanoma stage 4 of Unknown Primary origin. In Israel, the melanoma oncologist recommended six cycles of combination therapy: chemotherapy and Interleukin 2 (IL2). At that time, May 2013, Dr. Wolchok and his colleagues published preliminary results of clinical study, in which patients with unresectable melanoma were treated with two immunotherapy drugs: Ipilimumab and Nivolumab. The results were promising. Digging in the clinical trials website showed that two groups were still recruiting, one of them at the MSKCC under Dr. Wolchok’s supervision. I addressed Dr. Wolchok and was invited by him for consultation. It happened to be that I fit the study. In July 2013, I started the Ipi + Nivo phase I trial.

Today after six years, I am treatment free, with no active melanoma, having CT scans every six months.

3. What role have your friends and family played in your cancer journey?


My children and my sister’s family support me in every way. They trusted my decisions and showed a significant involvement in the process of my healing.

4. How did your oncologist speak to you about clinical trials?


The idea to join a clinical trial came from my friend/colleague, not from my oncologist. At that time, there was nothing for me in Israel, and Israeli oncologists do not recommend going abroad for clinical trials.

5. What made you decide to participate in a clinical trial?


I am a scientist, and I realized there was no other promising treatment for me, just an extension of life of less than one year.

6. What was your clinical trial experience like?


My physician in MSKCC conveyed optimism from the first moment: “You will be fine.” He thoroughly explained what I am going to get, what obstacles there might be, and how we can overcome the expected difficulties. The entire team was kind, patient, attentive, and caring.

The only thing I hated was all the imaging tests the clinical trial required. I had to take the risk since metastatic melanoma is much more dangerous than 3-4 additional scans.

7. What do you think people should know about clinical trials, and take into account when considering to participate?


People should know that clinical trials are not “scientists playing with our lives” any more.

A clinical trial can save your life!!! You should consult your oncologist about the best choice for you and be aware of all its advantages and disadvantages. When you are entirely whole with the decision, the coping will be more comfortable, as well as the chance to recover.



Clinical Trial Experience Interview: Hedva Gonen, Melanoma Cancer Survivor2020-10-01T16:59:23+00:00