Finding Support and Hope After a Rare Cancer Diagnosis

I was diagnosed with a rare ovarian cancer in January 2024. To be exact, it was juvenile granulosa cell tumor stage 1. I had a radical hysterectomy (surgery to remove the uterus, cervix, ovaries, fallopian tubes and nearby tissue) and am currently on surveillance every six months.

One of my friends reminded me it is a good thing that I have a lot of Greek evil eyes. My response was, “Too bad that I never stuck one in my vagina.”

Through research, loved ones’ support and my assertiveness, I have acquired an incredible medical team that includes oncology, naturopathic medicine, acupuncture, massage, Reiki, yoga, meditation, strength training, nutrition and art as healing. I also include my friends as part of my medical team, as they have provided the kindest words, inspiration, gifts, flowers, cards and daily texts. I have been able to keep my support going with my health journal through Caring Bridges. In addition, my medical team includes the incredible and most valuable nonprofits for me: the Cancer Support Community as well as Unite for Her.

Mental Health After a Hysterectomy

It has been quite interesting having a radical hysterectomy. Everyone is concerned about the pain. After the first 10 days since the surgery, the pain had mostly disappeared. I was no longer on heavy meds. I am still quite bloated, and my pants are a bit snug like I had more chocolate than usual!

I also learned that when you have a hysterectomy, there is new unclaimed space that the rest of your body is trying to figure out its new existence. My digestive organs have been adjusting to this space, which has been quite painful. The doctors say that will go away and patience is important.

Then after 14 days, I had a fever and went to the emergency room. I had surgery complications: a blood clot in my lungs and an abscess in the reproductive area. This resulted in five days in the hospital. Once that was over, I was able to address my mental health in a much more focused manner.

The mental has been the most challenging, especially when I was waiting for weeks for the pathology report after the hysterectomy. This would tell me what stage my cancer was. I even wondered if someone lost the slides with my luck. Before I knew the staging of my cancer, I was in fear. I had experienced my brother and mother dying within weeks of their diagnosis of metastasized stomach cancer. I thought that it was now my turn.

Why was I on the couch with my blanket in some sort of shock? I should have seen it coming. I would look at my husband sitting there with me and wonder what would happen after I passed away.

I think of the most bizarre things in your head, and some of them I would even be embarrassed to share. Am I terminal? Does this mean I can now eat chocolate cake all day every day because I may die soon? Not to mention my eating was out of control — suddenly my diet for Crohn's had not been followed as strictly.

I finally got back on track after I received the pathology report stating my disease was stage 1.

Self-care has always been a priority for me in the last 10 years. But with the cancer diagnosis, I wanted to make sure that I researched and was consistent with even more self-care. I am consistent with my monthly Reiki, acupuncture and massage appointments. I meditate daily and attend yoga two times per week. I go to strength training classes and take nutrition courses. I visit my oncology nutritionist and naturopaths each month and have further improved my nutrition through research on cancer. I look outside of the box and ask lots of questions.

Keeping stress low and myself grounded is quite important in such a journey. I have never felt better as I do right now.

Research Participation Gives Me Purpose

After receiving my diagnosis, I have been filled with all sorts of emotions: love, fear, anger, sadness, gratitude, relief. Living with the uncertainty of the disease is a daily work in progress. I’ve learned through participating in a research study that adult and juvenile granulosa cell tumors are extremely rare. I still remind myself that my disease is stage 1.

Having a rare ovarian cancer changes the game. There is less research, which means fewer ideas on treatment. You must be careful that the medical field does not lump you into typical ovarian cancer. This is not the same as ovarian cancer. That is why I have been finding research studies to participate in. This has helped me feel grateful to help others in the future. The researchers also give me feedback on what experts discover, which is incredibly supportive and gives me relief.

I also want to share my story to help others. If I can take this cancer and do something positive, then it gives me more purpose. I may even turn my health journal into a more detailed book to help women with this rare ovarian cancer.

Advocacy Organizations Provide Support

Before my cancer diagnosis, I started out as a volunteer for the Cancer Support Community. This is a national organization with resources in many locations in the United States. I led expressive art workshops and worked on fundraising activities.

Now I am also on the other side of the table and participate in the activities for patients with cancer. The Cancer Support Community has provided the most incredible support for me. I have been really enjoying all my activities with the Cancer Support Community. I cannot stress enough how valuable this organization is for me. The support group has been incredible with a compassionate therapist and compassionate patients. We share so much information with each other.

It is so important to share information, as no one hands you a guidebook when you get cancer. In the support group, I have learned so much from the other patients with cancer and I always research what they share. For example, one of them mentioned Dr. William Li, CEO of the Angiogenesis Foundation, who focuses on beating disease through nutrition. I read his book and took his four-week online course, which resulted in more awareness and action with my cancer nutrition. The support group through Cancer Support Community Arizona has been the most powerful method of healing and support: being with the other cancer survivors/patients.

Through these programs, I also reconnected with a former neighbor who happened to also be on a Zoom activity. I had not seen her for many years, and she also got diagnosed around the same time as me. We have reconnected and now support each other. Cancer Support Community Arizona has also motivated me to continue my art creations, which also provide healing for me. I am still volunteering and leading some art activities as well as creating my own art at home for myself.

Another incredible national non-profit is Unite for Her. They focus on patients with breast and ovarian cancer. Their services include a passport valued at $2,000 where you choose what support you need — therapy, grocery gift card, food delivery, Reiki, fitness, etc. All of these services are free as well. There are also lots of opportunities for online workshops and webinars as well.

There is lots of support out there, but we have to know how to find it. I hope by reading this, someone will be able to learn to find the resources that work for them.

This post was written and submitted by Olga Tsoudis. The article reflects the views of Tsoudis and not of CURE®. This is also not supposed to be intended as medical advice.

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