Tammi is a stage 4 clear cell RCC survivor. She shares the story of her diagnosis and how she has continued to live with cancer!
Feb. 14, 2017 I took myself to the ER right after I got home from work because suddenly the left side of my chest and mid to upper back went into full muscle spasms that were so horrible I could not catch my breath. Twelve hours later, after a CAT scan, I was told to contact my Primary Care doctor because the scan found a large mass. That was all I was told. The next day my Primary Care called me and sent me to an Oncologist. The tumor was so large it completely covered all the organs on the left side of my body. To say that the doctors were completely freaked out is putting that mildly.
Two weeks later I had the radical nephrectomy – left side. The tumor was so large the doctor thought I was going to lose the spleen, part of the colon, adrenal gland and kidney. The scar is from sternum to belly button then from belly button to the left hip. Good news was only the tumor, adrenal gland and kidney were removed.
Every three months I had to get CT scans and blood work. Everything was great until Dec. 2017 when the CT scan showed the lymph nodes that were located behind where the left kidney was were very large. The doctor suspected that they were cancer. This was ten months after the 1st surgery.
I was sent to a different doctor whose specialty was the next radical surgery I had. Because the lymph nodes were so close to the artery (like a cm away from) this surgery was much more intense. They had to remove my stomach and intestines in order for the team to get to those nodes (and then place them back inside of me) The surgery was a success. I was told that there was a 50% chance that the cancer would return. That was Jan. 31, 2018.
From the time I was told about the tumor even until now, I did research. I do not count on the word of anyone. What I was not told was RCC can recur and spread to other parts of the body. I found out by doing research and asked the doctor a lot of questions. I always walk in to my appointments with a list of questions.
Six months after the 2nd surgery another CT scan pulled up another lymph node enlarged, this time in the thoracic area. That was when I was told I had clear cell Renal Cell Carcinoma. I immediately transferred my care to Memorial Sloan Kettering.
I was in great health for four months until Sept. 2018 when pain in my back took me off my feet for one week. No one could figure out what happened. It went away by itself.
Everything was good until Dec. 3, 2018. The pain in my back was so bad I kept passing out every time I walked. MRIs of the spine are done and they found a malignant tumor on my spine exact opposite location of where the cancer was in the thoracic lymph node.
I do not remember the month of December. I was out of it in pain. I ended up in the hospital three times. In the middle of that I had one radiation treatment with very heavy dosage of radiation to the tumor on the spine. My pain level is now 20 plus.
I was put on Votrient and in one week I ended up back into the hospital. Blood clot and pancreatitis and a severe blockage in my intestines because of the opioids.
From Dec, to Feb. 1st, 2019, I was in so much pain I don’t remember the two months. The doctors at Memorial Sloan Kettering and at the hospital I was in worked together very hard and were finally able to find a working pain management plan and get me home, recovering.
I was taken off the Votrient immediately and I have begun Immunotherapy. I broke out itching like crazy and had a light rash, and have Hyperthyroidism. All are side effects – GOOD side effects.
I would much rather have itching than the excruciating pain.
Cancer sucks. There are no if, ands or buts about that.
1. Find the best medical care
2. ASK questions. Do not hesitate to ask questions. Get savvy with your cancer – it got savvy with you, take control.
3. Surround yourself with loving, helpful, positive people
4. Find support groups – and attend. They speak a language that loved ones who do not have cancer don’t speak and they KNOW what you are feeling, and KNOW how to help.
5. Be patient with friends, family and co-workers. They have all best intentions and honestly really think they are being helpful. Accept what they have to offer.
6. EDUCATE yourself! I can not stress the importance of this. No one owes you anything. Make phone calls, reach out to others, support groups, therapists, and yes, go to a therapist, Social Worker, Psychologist, etc. THEY HELP! It helps to talk.
7. You will cry. Cry. Let it out. It actually helps in your healing.
8. Your healing is not just physical. It is mostly MENTAL, EMOTIONAL.
9. Keep living. You are still alive, so live! Travel, find new hobbies, focus on life, not the cancer. Yes, it is a part of your life but do not allow it to take over.
10. Look into the services available for cancer patients, such as Acupuncture, Meditation, Yoga, Massages…and USE them!!! They really do help you.
I finally found clear cell RCC survivors and fighters right where I live and I can’t wait for us to get together. I am still young in this journey and look forward to many years ahead . Stay positive. Stay informed. Stay connected.