Breast Cancer Update 2017

Several organizations have posted their latest information on the status of breast cancer in the US in 2017. I just found this overview with links to various resources for more information. So go read up on

Research for Cancer People

I would be happy to participate in research that might benefit other cancer people in the future. However, I am always told that I have too many other ailments and am not eligible. Insert 'Unhappy Face' here.

But I was overjoyed to find out that there will be a program on this Friday February 10 at 12 pm ET that will talk about how people with cancer can participate in research. Its a webex session meaning that you can participate remotely.

I learned about this program by being subscribed to Johns Hopkins Artemis (which provides the best information on new breast cancer research). If you have breast cancer and aren't subscribed, you should.

This is the blurb that is available when you register:

Ask the Experts: How to get Involved in Research As A Survivor:

The George Washington University (GW) Cancer Center invites you to join us for an upcoming Ask the Expert session titled How to Get Involved in Research as a Survivor . Survivors' cancer experiences give them unique expertise that is crucial to strengthening research and improving patient-centered care. Survivors can improve patient-centered research by sharing their insights in a number of capacities, for example by reviewing research proposals, advocating for research funding and participating on the research team. Yet, understanding the research process and learning how to get involved can be daunting. Join us for a lively discussion with an exciting panel of survivor/research contributors to hear about their experiences getting involved in research, and learn how you can too!

Learning Objectives:

• Learn the valuable role patients and advocates can play in influencing research from the initial development of the research question to translation into clinical practice
• Learn the importance of being an informed consumer of medical care and developing “critical health literacy”
• Discuss steps that cancer survivors can follow to identify research advocacy opportunities
• Describe the value of incorporating the patient voice into the research process

To find out more you can register here and participate remotely. Apparently it will also be recorded and available later. Go register, sign up for Artemis and learn how your disease could help others in the future.

The Difference With A Good Doctor

This morning I had a wonderful experience having injections in my spine around T8 and T9 where I have a couple of desiccated discs. (Apparently I did something to my back in the previous years - my money is on the time I knocked the wind out of myself in front of the upper ski lodge with a deck full of skiers.) Desiccated discs are common in older adults (70+). Once again I am proving I am less healthy than most people 20 years old than me.

Today my new pain management doctor did the procedure. He was nice and talked to me first. Then he asked me during the procedure if I could feel anything and he would add more pain meds. He asked me how I was doing. He told me if I felt pressure, he would add more pain meds. Afterwards he told me it would take a few days for I to feel any improvement. And he repeated his instructions to me about changing my other medication levels.

What a difference.

My old pain management doctor never asked how I was doing. He never offered to give me more pain meds while doing injections. He would shove in the pain meds and they would BURN! Then he would push in the steroids which would cause a lot of pressure in the area. And he never talked to me about anything else.

I am very impressed with my new pain management doctor. This really show the difference between a good doctor and a bad doctor.

• A good doctor asks how you are doing during procedures
• A good doctor talks to his patients to make sure they are doing okay.
• A good doctor is concerned if his patient is uncomfortable.

When you find a good doctor, keep them.

World Cancer Day - Was Yesterday

I forgot. Well maybe someone said something yesterday but I missed it. Yesterday was World Cancer Day. I blogged about it in 2014 and have since forgotten about it. (Maybe chemo brain?) Its supposed to be a day to debunk the myths surrounding cancer among other things.

But if us cancer people can't remember it, its not going to work. I almost feel like its another 'Hallmark' holiday. I don't think it has much significance to me. Especially when I can't remember it and have to go look it up every year.

I guess its just not working for me.

The Bigger Problem Than Lack of New Cancer Treatments

I constantly read articles on the advent of new cancer treatments. I think they are wonderful. But they are not always instituted.

In 2014, new guidelines started to recommend sentinel node biopsies instead of full axillary node dissections to detect cancer spread.  They are told not to do axillary node dissections (AND) if the patients cancer is under 5 cm and if breast cancer was only found in one or two sentinel nodes.

"Sentinel node biopsies are done on early-stage breast cancer patients to stage their cancer and determine if it has infiltrated the lymph node system, a common signal of cancer spread."

Axillary node dissections (AND) are much more likely to leave the patient with lymphedema and limited arm movement. In 2009, my surgeon did a sentinel node biopsy first to find any malignant cells (which they found) before he went on with the AND (and now I have lymphedema).

In 2005, the guidelines then stated that sentinel node biopsies should be done first and if any cancer is found, then an AND should be done.

But still in 2017, ANDs are done regularly for women with breast cancer.

"In smaller hospitals, particularly in rural areas, many women are still being told they need a full axillary dissection. There are economic issues, geographic issues and education issues for both clinicians and patients..."

So after over 12 years of established practice, the new guidelines are not being followed by breast surgeons.

I think this is a bigger problem than lack of new research to cure cancer. Any new care standards should be more widely followed by doctors and medical centers. Why do we need new research if no one is following it?

A Really Good Reason For Not Eating Tofu

I have been aided in avoiding tofu by the confusion over whether eating soy contributes to breast cancer growth. I really hate tofu. My mother fed it to us as children and I didn't like it then and I don't like it now. I might eat a little bit in my hot and sour soup but I will never order a dish which is tofu based.

But now (finally) we have clarification on the soy or no soy for women with breast cancer:

The issue is eating soy products seems to give women protection from breast cancer. Asian countries where soy products are eaten regularly have much lower rates of breast cancer than the US. But the estrogen-similar stuff in soy products has been thought to contribute to breast cancer growth, especially with hormone sensitive breast cancer.

So the truth was found in some recent research using rats:

"The researchers found that rats that were given soybean isoflavones to eat throughout their lives — in particular, one type of soybean isoflavone called genistein — had improved immunity against cancer. But rats that weren't given the isoflavone until after developing breast cancer didn't have that same immune response to kill cancer cells. Instead, these rats had higher rates of cancer growth and higher rates of recurrence after their tumors were removed."

And more:

"All of the rats were then treated with tamoxifen to kill the cancer. The researchers found that the rats raised on genistein had only a 7 percent chance of breast cancer recurrence after tamoxifen treatment, but the rats that were recently given genistein had a 33 percent recurrence rate."

So if you eat soy all your life, your risk of cancer should be lower and remain lower for recurrence. But if you are diagnosed with breast cancer, don't start eating soy. 

See now I really have a good reason for not eating tofu.

Coping With Breast Cancer with Friends

After living with breast cancer for nearly 10 years, I have some thoughts about how we all cope with it. I know personally I have gone from total, sheer panic to somewhat calm acceptance with a large dose of humor.

Humor has always been my 'go-to' when coping with anything. If I am not cracking jokes, I am really stressed. I mean I sometimes crack really bad jokes when stressed but if I get to the point where I am too stressed, my sense of humor vanishes. That means trouble.

I have noticed that most of my cancer friends do the same thing. We all have kept our sense of humor as we cope with life with breast cancer. We have all coped differently and faced our demons separately but we all have learned to laugh together.

Yes, our demons have been very bad at times. We have lost some friends along the way but our humor keeps us coping.

Living with breast cancer has tested us in many ways and, as each of us are unique, we have bonded together and our bonds allowed is to cope even better. I cannot imagine going through breast cancer without my friends.