Heartland Cancer Foundation Patient Spotlight:
In 2010 I was having problems with my periods, so I went to my Gynecologist and she put me on one month of birth control pills. I was doing breast exams, and within two weeks I found a lump in my right breast by accident. I went to my primary care physician, and he sent me for a mammogram - that was the first time I had done a mammogram – and then they found out that I needed to have a biopsy. I did the biopsy, and the results came back while we were on our way to a renaissance fair, which we used to do as a hobby. The Doctor told me the biopsy was positive, which just devastated me. We didn’t do the renaissance fair but stayed in the hotel and spent time as a family. When I came back, they sent me to the surgeon for a lumpectomy, followed by seven weeks of radiation. Two c-sections were the only other surgeries I had ever had. It was devastating to me and my family.
It really was hard. I am the caretaker for my husband who is 100% service connected through the VA, and for my son who has Autism and Asperger’s. I have been taking care of them for a long time. I do all the stuff in the house and the yard, and I work full-time in my shop, and one day a week at the VA.
So, they sent me for my treatment for my tamoxifen and radiation. I guess I was a little ignorant of the situation because everybody is throwing information at you and didn’t know what to expect. I didn’t know about the markings for radiation, for example. I had radiation every day. I was so sick I lost ninety pounds. I didn’t eat. When it would finally wear off, on Saturday night, I had a craving for Big Macs! Don’t ask me why, I’ll never eat them again. But I would have a Big Mac and French fries, and that’s what I lived off for seven weeks. Then I had to start all over again.
When they put me on Tamoxifen - I was really, sick from it - and they also gave me injections to stop my periods. I didn’t realize that the combination of the two was just awful. I was really needing empathy and information beyond what is in the pamphlets that they give you. I took the Tamoxifen for two and a half years. Then I was told things were good. And I was feeling good, so yeah, I just wanted to quit.
I did continue mammograms with my Primary physician through 2014. Then we found a lump in the same spot as before - same breast – and I went to my Primary and did a mammogram which came back fine. I was still complaining about the pain. We did an ultrasound. Every month I complained to him about the shooting pain in my breast, and he said it was from the nerves.
I continued my mammograms. In 2017, I had a gallbladder attack and had to have it removed. That was really, awful. In between all that time, I had kidney stones. I have been to the emergency room several times. In February of 2019, I had a huge kidney stone that I thought I could pass. My urine output was almost nothing, and my daughter, who is a paramedic, forced me to go to the emergency room. I was having kidney failure and a kidney infection. They put me on lots of antibiotics and gave me a stint. They found a 9mm kidney stone, and behind that, a 10mm kidney stone. On the other side, the right side, there was also another 10mm kidney stone. Needless to say - I thought that was the worst of the worst!
So, with that, they took me off all my regular meds that I take. I had been taking Spironolactone as a cancer drug from the first time. Within three months of going off, the pain was increasing. I went to the cancer center, and told them what was going on, and they saw me the next day. From May through June of this year, I have done a mammogram, CT scan, MRI with contrast, twelve biopsies, core biopsies, and a PET scan. By the time I got the results, they told me it that was E-R positive, progesterone negative, and HER2 negative. My only option was to have a mastectomy.
You know, I was not really looking to do a mastectomy. I researched and researched and researched. I finally came to the decision of doing a double, with silicone implants. Some women don’t want to do that. However, I decided that I didn’t want to be any different or look any different - for me. And when they told me that diagnosis, I had asked so many questions, I didn’t leave the office until I was satisfied. One of the big questions was: if I had kept taking the Spironolactone would I still be in the same position as I am now? Or if they had gone back to see that my mammogram in 2014 had noted in my chart that the cancer was a malignant neoplasm, would it be different? So, I’ve been searching for how fast tumors grow now, and information about the medications I’ve been on.
I was set up with a surgeon and a plastic surgeon. I have spent hours researching doctors and their views and their “stars”. When I went to the surgeon it was so overwhelming, and they gave me all this information. I just wanted to know what they were going to do. My husband, and my daughter, and my son were there, it took two and half hours. I then saw the plastic surgeon and we talked about me doing a double mastectomy. He showed me the silicone implants and what they were going to do. It was so overwhelming- everything was.
Afterward, after the surgery, I had so much lymphedema, and so many questions. Having the implants is very different. None of my bras fit, none of my clothes are fitting. And you know, if there were diagrams, so you could see it, hear it, and then see it – I would understand so I wouldn’t have to research over and over. Which, people still do, because you want to know. All the questions that I have asked the doctors regarding like, “how will I feel after this surgery?” I would like it to be written down and handed back to me, so I can look back at the papers.
I am in a support group on mastectomy and reconstruction on Facebook and that has been awesome. You get a lot of information about what everybody is going through, but I know everybody’s case is different. And when my family gets tired of me talking about it, I can go there. It’s an emotional roller coaster. I have people that tell me “well, you caught it early” or “thank goodness you’re alive”. And that’s all find and dandy. When I all wanted to do was get back on with my life; having all this the second time, stopped the caretaking of my husband and my son. And asking for help, I just don’t do that. I applied for social security disability to help me, because there is a thing for breast cancer, but they denied me. I didn’t have breast cancer consecutively for a long enough time period. So that makes it hard.
My life has changed so drastically.
After this last surgery I had to make a choice on my treatment: do nothing, take Femara, or do Femara with Chemo. The only difference of treating with Femara and Chemo is a 7% chance of recurrence. Everybody asks me if I am going to do Chemo, but it’s not their decision, it’s my own. It’s like, why go through all the agony with Chemo for only a 7% change? I think people don’t understand that.
I have looked at genome testing to try to decide what drug might work the best and possibly alter the treatment plan for me. There is only one place in Nebraska that will do it, and that is the University. My insurance is going to pay for it, so I want to see if there might be a change in my treatment based on that testing. It might not change, or be worse, and I understand that. But I am hoping that there is a different answer that is better for me.
I think things should change to get better for treatment. The big thing I am looking into now, since my cancer is estrogen positive and I am supposed to take an anti-estrogen medication, is studies on estrogen suppression, and whether complete ovary suppression will stop estrogen in total, and help people not have a recurrence of breast cancer. The current medication that suppresses the estrogen right now, doesn’t do it permanently, so eventually you’ll have a recurrence. So, what about total ovary suppression? They used to do it, why did it stop? It might be another option for people. And the Thyroid plays into it too, so there’s a lot of questions there. I also want to find an alternative medication that doesn’t cause kidney failure – all the drugs have a percentage of that as a side effect. There has got to be an alternative.
So that is where I am, right now. No one is helping, I am doing it all on my own. I have done a lot of research! Physical Therapy has also helped tremendously after the mastectomy. I look forward to that visit each time- it is awesome. I had a 30-degree difference in raising my arms after my first visit! This kind of follow-up treatment should be non-negotiable for all mastectomy patients. It just helps so much.
Yeah, I am the type of person where, you know, I just don’t take everything as the final answer. And if it is the final answer after other opinions, then fine. I am who I am.