By Andrea Whittle
Oh, the extended “shit stick” from cancer. If it’s not difficult enough being diagnosed with cancer at a young age, being told a period or babies can bring back your cancer is a VERY difficult thing to hear in the prime of your baby makin’ life.
Young adults are either about to start a family, in the process of growing your family, or not even ready to make a baby because of schooling, finances, or no partner, etc.
I felt deceived by my team of oncologists. They skirted around telling me the true facts of my cancer. I was triple positive/HER2 positive breast cancer. They started off by giving me injections every three months while I did chemo to stop the periods. I was under the impression that doing this would save my eggs, then once chemo and radiation were done, my radiologist asked when would I have my ovaries out. I was shocked because I didn’t know what he was talking about. Next, my oncologist came in and explained that my hormones are my enemy and food source to my cancer. If I have periods or a baby, my cancer will come back.
Hmm. It sure would have been nice to know this from the beginning. I had hopes to extend my family after I was better. I always wanted lots of kids.
Navigating the strong emotions menopause causes is very difficult. Going from extreme sadness to explosive rage within minutes or hours apart is very stressful, especially when the emotions feel so unprovoked. Then there are the never-ending hot flashes and flushes — yes there is a difference! Hot flash = hot wave over your body. Hot flush = hot wave that produces sweat from pores all over the body (gross right!) There are chronic night sweats. Every morning when I wake up, I immediately have a hot flash; it’s like I start each day with a fast reminder that I had cancer.
When I had my ovaries removed, I also started hormone therapy to stop my body from producing hormones. That added to the terrible side effects like chronic joint and muscle pain and back aches. At the end of each day, I feel like my body’s joints have seized up, every movement and step hurts. After four years of menopause and hormone therapy, my bones are deteriorating and my spine has started to shrink. I’m in early stages of osteoporosis and I am 35 years old. I did a treatment this spring called Zoledronic acid which should bring calcium from my body back to my bones. Fingers crossed it works.
After struggling silently over the years, I decided to use my YACCtivist training and write a blog. I surveyed to my fellow YACCers to get some tips, tricks, and advice to hopefully help others who are in similar boats.
12 participants took part in the survey
- 1 appendix cancer
- 1 thyroid cancer
- 2 ovarian cancer
- 3 cervical cancer
- 5 breast cancer
The ages at diagnosis were 28-37 and the average age was 33. The current age of participants is 30-40 and the average age of them are 35. All of the participants are currently in menopause. The average length of time they have been in menopause is three years. Nine of them had their ovaries removed, and four were getting injection menopause. I asked how they were coping with menopause and the average answer was fair, and an even split of three bad and good.
I then asked them to explain how they were coping with menopause symptoms:
“On patch, but levels are a mess when I miss a day.”
“Oral birth control with no breaks and this has managed menopause symptoms amazingly.”
“At first not well, but now has evened out a bit after finding the right dose/combo of hormone therapy.”
“Better, but struggle at times. I usually make a joke about it.”
“Tylenol for joint pain, cannabis, fans, and naps.”
“Symptoms have gotten less severe, but can sometimes be debilitating.”
“Still getting hot flashes.”
“Ok, trouble sleeping, hot flashes mostly at night, vaginal dryness, and still fatigued.”
“Good very mild symptoms (no hormone therapy).”
“Hot flashes and night sweats sucks, my quick reaction response, I need to learn to hold my tongue sometimes!”
I asked if they had any tips or tricks to help with menopause symptoms:
“Making sure I’m changing my patch regularly.”
“Have an icepack handy and a fan. Avoid caffeine.”
“No tips, but fatigue and anxiety seem to be triggers.”
“Layers for when you need to strip, thinking about a hot flash will cause a hot flash!
“Bedroom fan and exercise helps.”
“Increased estrogen-and hot flashes are gone.”
“Cold showers, and a cold room.”
“Portable fans, and ice water.”
“Keeping active, exercising helps, avoiding alcohol and hot drinks.”
“Bamboo pillow covers, meditating while flashing, keeping hair up.”
Eleven of them said they were doing hormone therapy. I asked what type of hormone therapy and I got a list of different brands and kinds. Ranging from birth control patches/pills to hormone blockers and expressers. The average length of time they have been on hormone therapy is three years.
I asked them how they were coping with the side effects:
“Depends on the day, but finally found the right dose/combo, so better than before.”
“Struggling with joint pain.”
“Extra black hairs are not fun!”
“Not well at all, I feel like an 80 year old woman.”
“Not fun changing patch two times a week, but better than menopause.”
“Part of my daily life, just have to except them.”
I asked if they had any overall advice or thoughts they’d like to share to others:
“I may have gone for the elective surgery to keep my ovaries.”
“Taking an oral contraceptive has been very effective for me, so far. When speaking to a peer support who also went through treatment for cervical cancer, she say’s that her menopausal symptoms were terrible, she was not on birth control.”
“I asked my oncologist why I wasn’t just getting my ovaries removed instead of taking multiple drugs long term to suppress ovarian function. She told me she wanted my body to return to normal as much as possible after the 5-10 years of hormone therapy, which meant possibly going through menopause twice. I find this very frustrating, though I understand the dangers of early menopause.”
“It’s getting better.”
“Talk to a nurse if possible, prior to starting hormone therapy and several months after you started. I found it really helpful to be able to discuss the side effects.”
“It’s a constant struggle.”
“Its hell, but hopefully it wont last long.”
“I find exercise helps me a lot with regulating hot flashes, will help with reducing bone loss. It’s just good overall anyways!”
“When you feel like you’re at your breaking point take time for you, talk to someone, write it down and remember your not alone.”
After reading what my peers had to say it feels so damn reassuring to know I’m truly not alone, and I learned from their insights and advice. Thank you everyone who took part in my survey.
I hope that the readers to this blog feel encouraged and feel less lonely in their symptoms from menopause or hormone therapy.