Dogs and cats. Dragons and swords. Miracles and magic.
These are the subjects that dance in my heart and set my soul on fire! This is what I’ve been writing about for the last eighteen years. Today I’m going to be writing about fallopian tubes. Go figure.
If you’ve taken a peek at my last two blogs When Cancer Comes Calling and Cancer: Coming Through the Fire you know how I spent my summer vacation. In case you missed it here’s a quick synopsis: pool of blood, good biopsy, good blood test, concerning ultrasound, scary right-side ovarian cysts, small chance of ovarian cancer, three doctors loudly screaming TOTAL HYSTERECTOMY and me screaming even more loudly NO!!
In addition to the cysts I have three uterine fibroids which possibly could be addressed with a minimally invasive out-patient procedure. Fibroids are common in women of all ages. I asked my gynecologist to order a pelvic MRI so the radiologist who performs the procedure could review it. The MRI is required before he’ll set up a consultation. Smart radiologist.
The MRI was performed a week ago and I received the results this week. Here’s the really good news: I DON’T HAVE OVARIAN CYSTS ON THE RIGHT SIDE! What I do have is a fluid-filled fallopian tube that isn’t a problem unless it becomes a problem. Here’s the really creepy news: I have a gynecologist, oncologist and endocrinologist who all wanted me to have major surgery to remove cysts that don’t exist, on ovaries it would be best to keep, to eliminate cancer I don’t have.
For those of you who may not know what fallopian tubes look like here’s a picture of them attached to a uterus:
It’s hard to imagine doctors talking to me about cancer and urging me to schedule surgery without sufficient testing. I did a search on MRI vs. Ultrasound as a diagnostic tool for women’s pelvic problems and it brought me to Dr. William Parker. He is the Clinical Professor of the Department of Obstetrics and Gynecology at UCLA Medical Center and Past President of the American Association of Gynecological Laparoscopists.
I was especially interested in his post Why is MRI the Best Way to Help Decide What Fibroid Treatment Might Be Best for You? Although he specializes in fibroids I believe the issue of ultrasound vs. MRI would be the same, especially after reading his post. He tells patient stories that include photos from both ultrasound and MRI diagnostic tests. The difference between them is hard to believe—like looking at the cosmos through dirty eyeglasses vs. a high-end telescope. The doctor was only able to determine these women’s medical issues by using the MRI results.
I’m one of the lucky ones. I could be sitting here right now wondering why there’s a loud echo in my pelvic region. I can’t help wondering how many women have ridden gurneys into operating rooms and had hysterectomies based on faulty information. I realize that for thousands of women avoiding a hysterectomy isn’t an option. I have women friends who were grateful to undergo this surgery because it put an end to symptoms they could no longer live with. I also know that staggering numbers of women are diagnosed each year with gynecological cancers. There’s no doubt every single one of these women would give anything to trade places with me. My travels through that world brought great sadness which was exacerbated by the brick wall I faced with my doctors.
When I began this journey it didn’t take long for my doctors to start pushing me toward a hysterectomy. That led me to begin searching online for anything that pertained to septated cystic ovarian tumors. I found a large ovarian cancer screening study that had been done on 30,000 women over 22 years. A little over 1300 of these women had the exact same complex cysts I was told I had—septated cysts that had no solid or papillary areas. The study concluded that these cysts are most likely benign.
I emailed the gynecological oncologist who was involved in this study to see if there had been any updates or if he was aware of other tests I might look at. It was my hope he might email me back with some ideas but he didn’t email me. Instead, he called me from his home and spent a considerable amount of time on the phone with me. He wanted to know all my test results so he could offer his best advice. This man was patient, kind and caring about my situation. I envied the women who were lucky enough to have him on their side. Before we hung up he made sure I had his cell phone number in case I had other questions. Now that’s a doctor who cares about his patients! It’s heartening to know there are medical professionals like that in the world.
What I’d like to leave you with is this: WHEN IT COMES TO YOUR BODY PLEASE DO YOUR HOMEWORK! Don’t rely on doctors to have the answers you need. Don’t assume they are up to speed on all the current studies. Make sure they’re doing the necessary tests so an accurate diagnosis and treatment plan can be made. Don’t allow them to coerce you into anything you don’t fully understand or have concerns about. Stand up for what is right for you and your body. Use the internet—but use it well. Message boards where patients share stories can be helpful but focus on actual medical studies. Search on topics that match or closely relate to your situation. Visit websites for doctors who specialize in areas pertinent to your condition and read their bios, training, experience and affiliations. Contact them if you think they may be able to help. If they’re not local they may take a moment to exchange a few emails. If they do phone consultations it could be a wise investment to schedule one.
When you bring your findings to YOUR doctors don’t let them trash your research or speak condescendingly to you as one of mine did. If they tease you for wasting time contacting “Dr. Google” have an appropriate response ready so it doesn’t intimidate you. My suggestion would be to offer them this Uterus piñata:
I would not have missed one moment of this journey! Yes, there were tears, but there were also moments of great joy as more hidden parts of myself were revealed. It was a conversation last week with a friend about my pelvic issues that led to an unexpected side-trip—one that brought me to a place I never could have imagined.
I wondered if I should write about this next leg of my pelvic adventure. Would readers be interested in a baby doll I bought in 2005 at Toys-R-Us when I was writing my book Old Dog and the Christmas Wish? That doll has been on the top shelf of the closet for ten years. Something told me to take it down the other day. The next piece came yesterday in a hospital support center for cancer patients. When I saw what had made its way into my hand I knew I needed to share this story.
I don’t know how to begin thanking each and every one of you for your love and support. I’m wrapped up in all the kindness and good wishes you sent my way. Without all your heartfelt prayers and lovely shoulders to lean on this would have been an even scarier time for me. I’m grateful beyond words to you all.
Love, hugs and blessings,
Great information your sharing here. !
I’m really impressed by the actions of the Dr. whom conducted the study and his response to you.
I hope everyone heeds your good suggestions’ to take authority for their own body.
There are many resources for our use, thanks for showing us that, when in the thick of things it’s easily forgotten.
Stan, you’re so right—the doctor who did the study went above and beyond to help me! But when I think about it, most of the people I know would have responded the same way if someone came to them for help. It was my local doctors who sort of dropped the ball. As the great Maya Angelou said “When someone shows you who they are believe them.”
Keep taking those beautiful photos!
I’m so glad that’s the outcome! And I know the answer to the question is that it’s best to just remove everything, that way there is no chance of cancer. But what that does to our bodies is very bad in the long run.
Thank you so much, B! From all I’ve read and heard this surgery can take a terrible toll on a woman—both physiologically and emotionally. Maybe the Universe felt my two spine surgeries were enough!
Excellent advice Chris. Thank you for sharing your journey. I love the Uterus pinata. It is so true, we do have to be our own advocates, especially within the medical realm. I would be dead by now, if I had not taken charge of my health and doctors 6 years ago. There is just no substitute for having your own knowledge of your situation whatever it is.
I am truly happy for you that your journey has come to a much more positive, healthy place. Keep spreading the news my friend. Tis a great service you do. Blessings to you.
Thank you for those blessings, Sue! I’m so glad you learned the importance of taking charge of your health—would hate to think of a world without you in it!