As I near the end of my current pregnancy, I want to share some important advice that I have learned over the years. Not only from my two pregnancies but from managing health care for myself, family, and observing my mom manage care for my dad during his battle with cancer.
About eleven years ago, I was sitting in an exam room discussing my pituitary (benign) tumor with an endocrinologist. He asked who was my overseeing doctor. To which I replied, "Me". He laughed. I however was dead serious. After watching my mom have to stay on top of paperwork, medications, treatments, and over all care for my dad---and how she had to intervene numerous times with doctors and nurses to stop or redirect treatment, etc because it was not correct, I adopted the mindset that I am the only person who knows exactly what is going on with me. I am responsible for making sure the doctors and nurses are correctly addressing my issues. Now, this doesn't make me an expert on any particular illness, disease, or issue, but it makes me an expert on me, what my limitations are, what my preferences are, and making sure that the various doctors I may see are all on the same page---and have read my chart(s) correctly. (Yes, I've had to argue with a doctor about this information before because he did not read my charts or misread them. It was not pretty.)
In 2013, I became pregnant with my daughter. During my first OB visit, the doctor had expressed concern about a breast lump that I have had since 2000. (This breast lump has been biopsied and monitored since then.) She was very concerned about me having this and being pregnant. She ordered an ultrasound of the breast lump which I was fine having done.
I had the ultrasound done at a nearby hospital, as I was being escorted out of the room to the lobby, the doctor decided to give his two cents saying, "I know you are pregnant but I really think you should have a biopsy done." I looked at him like he was nuts. I replied, "Well, here's the issue. The last time I had a core biopsy done, I ended up with an infection. Right now, since I am pregnant, this seems like too big of a risk." He didn't seem convinced. He also stated, "Chance of infections from biopsies are low." Well, funny, low or not, I still ended up with one.
This ultrasound showed exactly what my previous ones had shown--no drastic changes and still showing the characteristics of a benign lump.
At my next OB visit, my doctor encouraged me to go see a local breast surgeon for her opinion on the matter. I agreed to the consult if that meant my OB would leave me alone. By this point I was getting annoyed. At the consult, which was also the anniversary of the day my dad died from brain cancer, the surgeon pulled over a portable ultrasound to view the lump herself. She had the screen turned so that we both could view the picture. On the screen, was a lump that didn't look like the one from about a month or so prior, it had a dark shadow under it and showed jagged edges. She didn't have to say much since after many ultrasounds, I was more than familiar as to what looked nonthreatening--benign. She expressed concern about it and suggested a biopsy. I told her I'd have to talk to my husband. He was deployed overseas.
As I walked out of the cancer center, I felt so sick. What the hell was happening?! I am pregnant with a potential cancerous breast lump, my husband is deployed, and I don't have family nearby or many close friends for that matter.
After discussing the biopsy with my husband and mom, I agreed to a Fine Needle Aspiration but not a Needle Core Biopsy (since they have to make an incision first which would increase my chance of infection.). The surgeon was fine with this and said she could do this at their office and I didn't need to go to the hospital.
My husband was sent home early from his deployment to go with me to my biopsy. I showed up at the clinic to a surprised and confused receptionist. She didn't have me on her schedule and also said that the surgeon did not do biopsies that day. Huh? I had, had two messages left on my phone about this appointment. I come to find out, instead of the office visit, I had to go to the hospital for this. This raised a red flag. I asked, "For what exactly am I scheduled?" She replied, "A needle core biopsy." I was livid. Not only was I late for my appointment but it was not what I had agreed to have done.
We went to the hospital. I was called to a room to fill out the necessary paperwork. I went back and sat down to begin. By this point I was very close to crying. I didn't know what to do. Finally, I was handed a paper I had to sign stating I would allow the procedure to be done. That's when I slammed the hammer down. "No, I will not sign this. This is not what I agreed to have done." The man looked startled. "I refuse to have this type of biopsy done because I have had one done prior and ended up with an infection. I refuse to have it done and risk losing a baby due to infection." Of course, he replied with the same scripted response I had received months ago about it being a low risk. By this time tears were streaming down my face. I was sent back to the seating area and told to wait until the surgeon was out of his current surgery.
In a few minutes, we were called back to his office. As we sat in his office, I was angry. I was already prepared to fight back with this surgeon. The surgeon walked in and the first thing he said is, "Let's just wait until after the baby arrives." I was so engrossed in my thoughts about how I was going to fight him, that it took a bit for me to realize what he had said. He continued, "How about we just do an ultrasound today? Most breast cancers are slow moving and since we have only a few more months to go for the baby to arrive, I don't think we need to rush into a biopsy right now." I could have hugged him.
He took me back to the ultrasound room, where the technician revealed a wonderful sight. The lump looked exactly like it had at the first ultrasound I had done that was ordered by my OB. I asked the surgeon why the one done at the other surgeon's office showed something different. He thought the resolution was not set correctly and also that portable ultrasounds are not as good. She probably had needed to adjust her settings. He told me he was going to go call my surgeon to discuss our decision.
After a very very long time he returned. He apparently took a lot of heat from the other surgeon about our decision. But she had finally agreed to it. What an enormous relief! I was so grateful to this surgeon for working with me and standing up for not doing the biopsy.
Fast forward to 2017, I finally had the lump removed and it was benign. I decided to have it done because we had once again moved and we were wanting a second child. And before I had to go through more pain with new doctors, I decided it was time for it to go.
My current pregnancy has been interesting. I have been flagged as geriatric because I am over 35. However, up to 37 weeks, I had not had a single problem and neither has the baby. I've said no to some extra testing etc which were pushed just because I am a number--35 and now 36. I feel like the doctors have their heads stuck in the books and have forgotten to look at the overall person. Yes, I am older, but I am healthy and so is the baby my health has not drastically changed from yesterday just because according to a calendar I am now 36.
For both pregnancies, I hired a doula. Doulas are great for providing support during pregnancies--answering questions, educating clients about the birth process, etc, but the main reason I have hired a doula is for her to be my advocate. I realized that in the middle of giving birth, a lot is going on and it may be difficult to think clearly during contractions. This is why I wanted a doula because she could stand in as the person to say "Wait a minute" to give me and my husband time to talk about any issues or she could help explain the options. She could help us differentiate between being rushed into a decision when it is not necessary versus a true emergency. A few weeks ago, I had a meeting with my doula. We were going over some last minute items to prepare for the birth. I told her I had agreed to being tested for Strep B and having a vaginal exam to see if I had started to dilate. It hurt and I was miserable for two days after it. I told her that I wasn't really wanting to go through this every week until the baby showed up. She looked at me, paused, and said, "You don't have to have them done." Crap, she was right. I had totally forgotten my rights to my body. Yes, I didn't have to have the exams done.
The next appointment, I was really nervous about telling them no. When the time came, I told the nurse no. She said okay not making a big deal about it. What a relief! It also made me feel good about picking this doctor for my OB for this pregnancy. Now the nurse asks if I would like an exam today. I really wish this is how it was done for everyone. Not saying you have to have it but rather asking if you would like one. After all, it is your body not theirs.
So I hope my post helps you realize that you should ask questions, you can say yes or no, you do have rights to your own body, and you have rights to a second opinion. You are your own advocate, so speak up. My lumpectomy and first child's birth went extremely well because of the nurses and doctors and because there were open lines of communication between me and them. That is how health care should be. Working together, respecting each other, and allowing for conversations and questions.
I believe this is the same as when flying an airplane, if you fly with a crew, your family, or a friend, it is important that open communication is maintained to allow questions to happen--to challenge those in charge if someone feels something is not right. My husband and I do this with every flight together. He has thousands of more hours and experience than I do, but I have never been afraid to challenge him about something I think looks off or wrong. It's both of our lives on the line and any passengers we are carrying. It's not time to be quiet and watch something go from off to causing a major issue. The same can be said about your health. Respectfully challenge your doctors if you feel something is not right or speak up if you have questions. Don't sit their quietly and hope for the best. It's your life not theirs.