Who's in Charge Here?

By Gail Garfield Schwartz

I'm a blogger in search of an audience. I am looking for a subject that SHARE-ers find interesting and important. So this month I'm veering away from the specific NBCC MYTHS about breast cancer to talk about a bigger subject that applies to anyone diagnosed with breast or ovarian cancer. (If you want to read the Breast Cancer Myths, which are very educational, please go to NBCC's web site.)

If you do read this, please comment -- just "I read it" is enough! More comment of course is even more welcome: your story that fits or contradicts a point here will help make the subjects real and useful.

Emotional Roller Coaster.

Each of us remembers how we felt when we first got a new diagnosis of breast or ovarian cancer. I, at quite an advanced age and having had a mother who had had breast cancer, thought, "Well, it's here at last, what a surprise." But old, young or middle-aged, any person is likely to feel scared, angry, and even guilty.

Even more upsetting is a discovery of recurrence or spread to another organ, or rarely -- thank goodness -- a new and different cancer.

Often the response to a first or later diagnosis is to do what your first doctor says to do, and hope for the best.

Wrong!

It's wrong for at least Five Easy Reasons.

1. One size does not fit all. For either breast or ovarian cancer, standards of treatment vary according to type and stage of disease. For some, surgery is needed first. For others, treatment by radiation or chemotherapy first is becoming a new standard. This is called neo-adjuvant treatment and has been found by some research to be more beneficial in some cases than traditional surgery-first treatments.

2. "Surgeons cut, radiologists burn, oncologists poison, and with any luck the patient doesn't die until they're all done." There's truth in the dismal old saw: Let's face it, doctors are people, too, and different specialists may have biases towards or against one type of initial treatment. You, the person with the disease, owe it to yourself to understand how those biases might influence a doctor's recommendation.

3. Your illness is their business. Am I a cynic? Sure, a bit of one. There are many cancer centers around the country where teams of different specialists can give the best options to each individual. Anyone diagnosed should try to get to a Cancer Center.

But here's the funny part. You'll see and hear ads from Cancer Centers saying something like, "Where you are first treated can make all the difference." These centers are -- guess what --running a business. They are trying to get patients to come to them. Ironically, even with all the cancer in this country, all the treatment centers are not chock full of patients. So, this is an advantage for a patient. When you contact a Cancer Center for an appointment, keep this in mind. If you don't like how they respond to you, let them know politely that you know there are other choices.

4. Do Not Pass Go. Many people are so frightened by a diagnosis that they just want to get the cancer out, fast. But it has been there for years, usually, and a few weeks of decision-making time generally will not affect prognosis. What will affect prognosis is a complete treatment plan. So don't rush to initial treatment, take well-thought-out steps to Go.

5. SOS works. Seek help. Find cool people who can help you understand what doctors are saying or what you can read on line on the scores of websites about your disease (American Cancer Society, National Breast Cancer Coalition, National Institutes of Health are some examples). Don't choose your terrified relative because that person can make things harder for you. Sensible, unemotional folk should go to visits to doctors with you if possible, and at least discuss what the docs said afterwards, and help you clarify your choices. They should not tell you what to do, they should help you decide what to do. And don't forget to call SHARE's hotline at 866-891-2392 to talk to a survivor who's been there.

Who's in Charge Here? You are.

Posted January 26, 2010.

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Comments

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Add a Comment

I read it.

— Sheyla

Hello, when I first was diagnosed in 2008 I was devastestated.....after attending the NYUCC in NYC and met with the best doctors I was convinced that I had a lot to live for. I was diagnosed with Mestatic Breast cancer in the right breast...no surgery was suggested just a small white pill and IV every three weeks of Herceptin....as of today I am cancer free and doing fine...My entire outlook on life has changed and I owe it all to Cancer and the great support team I meet with at Restoration Plaza - Brooklyn. thank you for caring enough to hear our stories

— Ernestine Lewis

Thank you so much for your blog. Although my experience with a breast cancer diagnosis was 36 years ago when there wasn't a whole lot of information to be had I devoured whatever was available and I was lucky since it was diagnosed very early and the alternatives were ONLY radical or modified radical mastectomy. But the thing I remember most was that I was introduced to a woman, about my age, then 42, who had just been diagnosed with ovarian cancer who, I thought could be my buddy in checking out whatever information there was at that time for our particular types of cancer.
When I suggested this, in addition to offering the support of SHARE, with whom I became involved in a very meaningful way, her response was to place her complete faith in her doctors without question. Although I had faith in my doctor, (Eugene Thiessen), I knew that I had to know as much about my disease....it was my responsibility. Of course, it was probably my attempt to have some control over my disease which, in those years, didn't offer much hope.
This woman, who became a friend, might not have survived under any circumstances, but I always wondered.
All I can say at this point is that you owe it to yourself to become as informed as possible so that you can "participate" in your treatment decisions and thereby gain some measure of control over the dreaded diagnosis.

— sandy berger

I READ IT............
I'M TIRED OF PEOPLE TELLING ME HOW GOOD I LOOK
AND I STILL HAVE METS BC TO MY LIVER.

— SUSAN SAMUEL

Great to read your level-headed comments. In addition to taking a calm family member or friend to medical appointments, I think everyone should take a copy of your blog.
Barbara

— Barbara Krauser, SHARE Hotline Director

thank you for giving your time and effort to help others . i have just been diagnosed with metastatic breast cancer and i have been terrified for 2 weeks now. knowing that others know my feelings and have gone on to live happy productive lives is comforting keep up the good work i love my doctor that treated me 6.5 years ago for stage 1 breast cancer but i will seek a second opinion because i am worth it and deserve the best care.

— Mary Little

I read this and am given encouragement to seek better care. I have had ovarian cancer for almost three years, been through four surgeries and am still undergoing chemo treatments. I have had no other help except the treatment,. The doctors just give me more pills when I complain about being sick. Right now I can hardly eat, have terrible pains in my stomach and am very depressed. Trying everything that is suggested, but unable to get the support I need. I do not live in a big city and therefore help is not readily available. I depend on my computer for encouragement and help

— Pat Stillman

I read it, and though I agree, would say that it is more of an ideal than reality for most. I was diagnosed with ovarian cancer this past June. Even with a supportive family, I felt rushed into surgical decisions. I live alone, don't want to impose on my siblings, both of whom are married with young kids, and here I am, with aches and pains my doctors seem fine to leave unaddressed at this point, unless I want to go to the hospital's ER for a work-up every other day...where, I suspect, their "business" makes the most money from my insurance company. So, yes, I am tired, in pain, and though I agree I should be "in charge," I have given up. It has not even been a year, and the system has beaten me down. The scary thing is that up to this point in my life, I have always been wildly independent, the most vocal advocate for myself and others, and have never let anyone dismiss me the way I have come to allow the medical profession to do now. I am disheartened with them, with me, and most of all, with my body's failings.
Reading your advice, though I know it comes from a good place, just got me angry. Perhaps it is because I failed at it and never thought I would. There should be a support group for that too.... People who were once able to help themselves or find the help they needed, but no longer can? Who knows... Amongst the long list of things I can't get anyone to address is that I have not been able to sleep since surgical menopause kicked into my 41 year old body--so my brain is mush at this point...which reminds me I should probably stop typing already... sorry...

— Legal Lady

Thank you all for responses. Legal Lady, you write vividly and poignantly about deep funk. I get it and I thank you especially. (Barbara Ehrenreich's excellent book Bright Side is about too much uplifting advice.) Yet, you didn't fail and you can get help and you will find things in life that make you glad you are you. Any support group will likely have people in it who feel or have felt as you do. Maybe for a bit, something more than that is called for, such as psychological counseling? Can you force yourself to let at least some family members know what you need, because it might help them to help you? And, SHARE's hotline is there for you to hook up with someone who has been through the same problems you are now battling. I hope this doesn't make you madder, but if it does, I apologize. I wish you the best.
Gail Garfield Schwartz

—

I am having a recurrence of my 2009 ovarian cancer. Two months ago after a trip to the emergency room because of severe pain in the bowel, I had a CT scan that showed cancer specks all over the bowel and up on the liver. I was told that the reason I was in so much pain was because the bowel had pretty much adhered to itself where the specks appeared and was all but not functioning. I was told that my only hope was chemo. Remembering my 2009 chemo treatments and the lingering side affects propelled me into looking for alternative methods.

Long story short: I happen to be listening to a talk radio show during that same time period. Someone called in and said people he knew were having luck with their cancers by eating habanero peppers and garlic daily. It seems, that garlic is a natural cancer killer. But cancer cells have a coating around them called "fibrin" that must be dissolved first so that the garlic can get in there and kill the cancer. It was also mentioned that people that have a really hard time eating peppers can substitute with grated ginger.

In my experience, on the day I was listening to this conversation, I did have garlic in the house, and I immediately diced up a couple of cloves and ate them. At this point, I had been really sick for several days and was just getting by with pain medication. So you can imagine my surprise when the next morning I awoke and as soon as I opened my eyes I knew I felt much better. I found the peppers that next day and since then, I (daily) dice one pepper and 2 cloves of garlic on a piece of bread to make a half sandwich and just eat it.

It was quite a mental process in the beginning because it was hard for me to even imagine eating something that hot. All I can say is, at the time I began this, I was really sick and looking for some relief. As a result, I do continue to feel better. It took a little while, but the bowel is acting more normally these days and what's even more astonishing is that I have more energy and I look and act more like I do when I am well. Whether or not it is killing the cancer has still not been determined. I am trying to work with my doctor but he only knows the word "chemo". So I just take it day by day and if I continue to wake up in the morning feeling good - I am not going to question it. Because to me, eating peppers and garlic is a small price to pay.

— Rose Hutt 20 Nov 2010

HI rose I would love to hear how you are now doing with your garlic/pepper regime as my partner has recently got recurrent ovarian cancer and is looking for natural remedies.

— Deborah Kelland

Hi, I read it. Thank you very much for your clarity. Some info come late, unfortunately and we have to learn the hard way. I am aware that only I am in charge of myself, but it's so difficult to keep a clear mind in that moment. I was diagnosed with ovarian cancer in February 2011. It was devastating at first: I've never smoked in my life, never taken ANY drugs (not even the legal ones), never drank alcohol, always eaten organic food, very healthy life style.....yet there I was with a stage 3 OC. I have no health insurance, and went to Bellevue Hospital in NYC. They have a sliding scale fee that suits our very low income. My husband started researching as much as possible. We were overwhelmed by friends who wanted to tell us what was right for us. I considered: 1) doing nothing; 2) alternative care; 3) the conventional medicine path. I decided to live and go with the conventional medicine. We stayed with Bellevue. I had a wonderful surgeon Dr. L. Boyd who has a very caring and prepared staff. I am finishing my chemo cycle next week. Hugs and love to all women. Let's support each other. Thank you. 7/2011

— Claudia

It's Claudia again. I was thinking about Rose's posting about garlic and pepper. I'd appreciate some update about that. As you must have understood, I have been a health NUT all my life, and also grew up with garlic....never eaten in a sandwich with pepper though. How are you doing? Thanks for your reply. 7/'11

— Claudia

Gail Garfield Schwartz

Gail is Volunteer Manager for Advocacy at SHARE.
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