Survivor Stories 2015:
1. How did you first find out you had cancer?
One day I was taking off my bra and noticed that there was a small spot of blood it in. I assumed I probably had a bug bite that I had scratched, unknowingly. However, when I started looking for it I noticed a small amount of blood expressed from my nipple. I examined myself a bit closer and found a small lump. I was hesitant to go to the doctor because at the time I didn’t have insurance and couldn’t even afford the office visit. After my step-mother offered to pay for the visit I agreed to go. The physician sent me to have a mammogram, which showed a small lump. I was then sent to a breast surgeon who told me it was probably a benign papilloma. I went in for surgery to have it removed a week later. The pathology report from that surgery showed it was cancerous.
2. How did you react when you heard the news?
I started laughing. It was probably the last reaction anyone would expect, but I had recently opened my law practice two weeks earlier, having not been able to find a job during the recession. When the surgeon called me she said, “You have a little bit of cancer.” To which I responded (while laughing), “Is that like being a little bit pregnant?” At the time, I took it as par for the course as not much in my life had been working out to my advantage. I spent the remainder of the day attempting to comfort other family members who did not take the news well. It wasn’t until I went back to the surgeon’s office to reschedule a second surgery and discuss treatment options that it hit me. The moment she said, “You are going to lose all your beautiful hair” is when I started crying. I realized that I had “real” cancer and that it was serious.
3. What course of treatment were you prescribed?
My initial oncologist wanted to be extremely aggressive. Although the majority of testing I had undergone indicated I was in the “grey area” for whether Chemo would be effective, he felt it was better to be safe than sorry. I did some very heavy soul searching and research. After a conversation with my mother, I decided that chemo was not the right course for me, and I chose a new oncologist who was less paternalistic and more willing to listen to my concerns. My new oncologist made me feel like we were a team and that the ultimate decision for my body lied with me. I agreed to undergo 5-10 years of endocrine therapy (taking a pill everyday) and several months of radiation. I could not be happier with my decision almost five years later.
4. What most surprised you about your treatment?
I was surprised by the side effects I experienced, both from radiation and medication. I was told I might have some minor skin irritation and fatigue from the radiation. What I was not told was the excruciating joint pain, scalp pain, headaches, and exhaustion. After bringing that up to my radiation oncologist, he dismissed it as not related to the radiation. Not being one to give up, I started asking all the other patients in the waiting room before and after my radiation visits if they were experiencing the same thing. I would say that very close to 100% of them were, and either were not telling their doctor or had told their doctor and had been dismissed.
As far as side effects of the medicine, I knew that it was likely I would experience a “menopause like effect,” but the doctor was vague on what that might be. I ended up gaining 30 pounds, which my physician said was probably not related to the medication. From the patient perspective I can tell you that I never changed my diet or exercise routine. I had been vegetarian and ran three miles every morning. I knew that the weight gain was directly a result of the medication. Further, I started becoming increasingly forgetful, and perhaps the worst side effect was the vaginal atrophy. No one ever told me that was a potential side effect or just how bad it would get. I went for three years where it was practically impossible to have intercourse due to the dryness and pain. I begged my doctors for a solution, but all I was told was to try lubricant because I was unable to take any of the hormone treatments on the market as my cancer was hormone fed. I finally found relief when I was admitted to a clinical trial using MonaLisa Touch, a new CO2 laser that helps with gynecologic health issues. Since then, life has been great!
5. What would your advice be to anyone who’s just received a cancer diagnosis?
You MUST be your own advocate. No physician knows what is right for you. They have years of training and experience, and you should take in their advice, but at the end of the day it is your body and your life. Only you know what is right. And more so, what is right for others may not be right for you.
NEVER allow any physician to dismiss any of your symptoms. Go online, find forums and chat groups, read medical papers and journals. Do anything you can to find an answer and never stop. Do not allow one or two physicians’ lack of knowledge or a gap in research to pigeon hole you into a miserable treatment process. There are no perfect or easy solutions, but there ARE things that can help.
6. How long have you been cancer free?
I was diagnosed with cancer December 13, 2010. I had a follow up surgery on December 17, 2010 to remove the remaining cancer. Shortly thereafter I began the other treatments, but I always consider December 17 to be my “cancer-versary” so I have been free from cancer for almost five years.
7. What lessons did you learn from the experience?
The hardest decision I ever made in my life was to look in the eyes of a “cancer expert” (my initial oncologist) and tell him that his ultra-aggressive approach was not the right decision for me. Shortly thereafter, a nurse said to me (very sarcastically), “You are not taking the chemo? Well, good luck with that. I hope you know you will probably die.” To be mistreated by those who are supposed to be there to guide you during the most difficult time of life shows you how little empathy and understanding is left in the world. However, there were several people who came out of the woodwork that I had not spoken with in years that provided more support that I could ever have expected. You learn quickly what is important in life and who really matters. You also learn that you are stronger that you could ever have expected and no decision you will ever make in life will be as difficult.
8. If you could send one message to all the Good Enough Mothers out there – what would it be?
I would share one of my favorite quotes, “A bird sitting on a tree is never afraid of the branch breaking because her trust in not on the branch, but on her own wings.” Never omit a piece of yourself or dismiss your own concerns to make your physician or anyone else more comfortable.
At 29, Lisa Elliot was diagnosed with breast cancer. Her subsequent treatments lead to menopausal symptoms including extreme dryness, irritation, itching and painful sex. As a young lady in her early 30s, she wasn’t able to sit at her desk without being in severe pain, much less have sex with her boyfriend who didn’t really comprehend why/how this could be happening to someone so young. Then, Lisa’s gynecologist introduced to a new, non-estrogen therapy. Within two days of her first [of three] treatment, Lisa reported that she had a dramatic improvement in her symptoms. Upon returning for her second treatment, she rejoiced that she had been partaking in sex again with NO pain. One year following her series of three treatments, Lisa’s symptoms have not returned.