Our Friends Answer: Breast Cancer Awareness Month 2015

By on October 2nd, 2015 Categories: Community Knowledge

We reached out to our Facebook community with this question:  It’s Breast Cancer Awareness Month. Are there issues you feel are not getting enough attention?

Our Facebook users had a lot to say about breast cancer, screening, treatment, and much more. Here’s a sampling:

Risk

“More attention to highlight the illnesses that can increase the risk of breast cancer, i.e., polycystic ovaries!”

 Screening and diagnosis

 “Mammograms for 40 years upwards.”

 “Earlier mammograms!!!”

“PET scanning for young women with aggressive cancer that didn’t show up on routine screening tools….we need a fund or pressure to make it covered by insurance.”

“Breast MRIs are not covered as a preventative screening like the mammograms are for high risk women. The American Cancer Society recommends both for anyone over 20% risk, but insurance companies say there is no such thing as a preventative MRI. It is common sense and no one will look into this! Help me on this one! Please. The cost is ridiculous and legislation needs to be made regarding this.”

“MRI should be a routine screening tool for a person who’s already had breast cancer and covered by insurance. My second diagnosis would have been sooner if it had been.”

“I began mammograms at 30 BC of questionable cysts and got Dx at age 49! They should start mammos at age 30. Maybe have them every two years. Raising age to 50 is nuts. I’ve had many friends Dx well before age 50.”

“Cancer at 29, but it was a breast self-exam that really saved my life initially.”

Genetic testing

“I’d love if insurance companies didn’t give you crap about gene testing (I’m specifically talking about BRCA1 & 2) if your Dr. thinks you need it, you need it!”

“Genetic testing coverage by insurance companies! Two women in the same family ought to be enough of a reason, regardless of their age at diagnosis! And yes, we need a CURE!”

Young women

“Younger women’s breast cancer is definitely not being recognised enough.”

“How younger and younger women are being diagnosed with breast cancer. Mammogram screening age must be lowered. I was diagnosed this year at the age of 43. Now I hear insurance companies want to raise mammo age to start at 50. This shouldn’t be acceptable.”

“Agree! My sister was diagnosed at 39 and I was diagnosed at 44!”

“I’d like it to where younger women could be educated. Unlike me, I was 19 when I was diagnosed with stage 4 breast cancer. I had both breasts removed and six rounds of aggressive chemo and numerous surgeries. I am 31 now but I still have physical and mental problems. And no insurance. And no way of getting any. But yeah to educate, cancer doesn’t discriminate against age.”

DCIS

“DCIS — over treated or not over treated?”

Triple-negative breast cancer

“Couldn’t agree more with all of you! I also think triple-negative should be researched more. Never give up, always fight on.”

“More studies on Triple Negative Breast Cancer. Plus, after-treatment attention.”

“Triple-negative awareness because it’s so aggressive yet no one wants to talk about it.”

Metastatic breast cancer

“Metastatic breast cancer and the latest developments in research to cure metastatic breast cancer!”

“Metastatic breast cancer kills! It’s not getting nearly the attention it needs. We need a CURE!”

“Metastatic breast cancer, not enough funding or attention.”

“Totally agree that there needs to be more research for Metastatic breast cancer! I was diagnosed with it this past January………”

“As a recently diagnosed (after 5 years NED) stage IV person, the lack of research dollars appalls me. All I can do is pray.”

“Stage IV Needs More!!!”

“More attention and funding to metastatic breast cancer, and less attention to ‘awareness.’ Even 3rd graders are aware!”

“Stage IV research. Not enough of it. Stage IV life expectancy. Not enough of it. Young women having breast cancer…Not rare anymore.”

Sexuality and side effects

“Yes!!!! Sex!!!! In pelvic floor therapy. There is a SEVEN MONTH WAITING LIST AT JOHNS HOPKINS. My hands are ruined from chemo. Ongoing physical disability. Protocols during treatment are outrageous. The oncologist needs to have a list of other doctors who understand the side effects … The eye doctor? The gyn to start!”

Post-surgical issues

“Yes, ongoing scar tissue problems. 6 years and every day I am reminded due to pain.”

“I think that some of the problems that can crop up after a lumpectomy. Many of us seem surprised by side effects we hadn’t been told could occur. Most are an annoyance but some are not and we should know what to watch for.”

“How about some education on how to care for your breasts and implants during and after reconstruction??”

Life after breast cancer

“The after — the part where everyone thinks it is over for you, but it never is…”

“The after the treatment. Life after dealing with the cancer. I have ongoing physical issues and had depression for a good while. Am better now.”

“I totally agree with others who have said ‘life AFTER primary treatment. There are so many long and late/term issues along with continued doc visits and tests. I was stage 3b locally advanced lobular, so for me I’ll be watched forever. There’s the attitude of ‘You’re cancer free — get over it’ and that really makes it hard at times.”

“The ‘life after treatment.’  I’m a year out from diagnosis, nine months since my last chemo. Depression, anxiety and still having reconstruction, side effects from medications. None of that is really addressed.”

Emotional aspect of breast cancer

“Emotional side of cancer.”

“Psych care during and after treatment.”

Lymphedema

“I will be 10 years cancer free come November. But I’m left with lymphedema in my right arm which is agony.”

Insurance issues

“If you are not insured and do not qualify for public aid in Illinois, then you go without screenings or help if you are diagnosed.”

All of the above

“The difficulty of diagnosing cancer in dense breast tissue, the fact that mammograms have not been effective in reducing the death rates from breast cancer in women under 50, and more money is needed for metastatic breast cancer research. Stage IV needs more!”

“Totally agree with the after and how do you deal with all the issues. It’s like once the doctors have given you their part of the treatment you’re left on your own pretty much. Also need more done for metastatic breast cancer!”

“I’d love to see more discussion as to why more and more women are being diagnosed pre-menopause, and the relationship (is there one?) between soy and hormone receptor positive breast cancer.”

“More emphasis on metastatic breast cancer. 30% of women will have a reccurrence in their lifetime. Also, open book policy where all the money generated in October actually funds research vs. lining pockets of executives.”

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Is there something you feel is not being addressed enough that you didn’t see here? Let us know in the comments area below. Breastcancer.org will be working to ensure all of these issues are thoroughly addressed. We love hearing from you, so please keep the conversation going!

 

Claire Nixon, Editorial Director — Claire directs a team of writers, researchers, content managers, and physicians through the creation of high-integrity web content. She brings 20 years of experience in health communications and journalism to the Breastcancer.org team, as well as the lens of the patient – she was treated for breast cancer in 1998 and again in 2012. In her off-time, Claire enjoys creative writing, independent films, meditation, and the ocean.

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