Am I Doing Breast Cancer Right?


I have been reading about breast cancer prevention and cures since my mother was diagnosed with the disease in 1980. I picked up the pace with my own first diagnosis in 1988. Some “facts” and some trends have come and gone while others are repackaged with new names 20 years later. If you believed and tried to follow all the advice floating around the internet, you would soon drive yourself crazy. Even the experts get it wrong sometimes.

In the 70’s to the mid 80’s, the alternative cure of the day was laetrile, a compound made from apricot pits. People travelled to Mexico for this wonder cure that wasn’t available in Canada or the US. It went out of fashion as it didn’t seem to actually cure anyone and led to their early death if they were not using traditional medicine alongside it.

The next big wave of prevention and cure methods focused on the mind. Guided visualization was the rage in the late 80’s and early 90’s. Basically it was a type of meditation where you listened to a tape that encouraged you to picture your cancer as weak disorganized blobs while the strong army of chemotherapy warriors came down and slaughtered them all. The premise was that your mind could cure your cancer through these vivid images. Unfortunately for me, these images were anything but calming and empowering. I began having nightmares of raging armies chasing after me, trying to kill me. I stopped going to these “healing” sessions and felt much better for it. This was cancer failure number 1. I was a guided visualization student drop-out.

The other component to preventing or curing cancer with your mind was developing a uniformly positive attitude towards life. There was some research being cited that said optimistic cancer patients lived longer and had less recurrences and metastisies than pessimistic patients. Further research has not been able to duplicate those results.  It is now thought that a positive outlook may increase your quality of life but it won’t prevent further disease or lengthen your stay here on Earth. But at the time of my
first cancer in 1988, the positive thinking rule was firmly in place.

I wasn’t a uniformly positive person.  I was sad, angry, scared, confused and frustrated with both the disease and the effects it had on my life. Hearing that I had to remain positive at all costs did nothing but add another layer of guilt to my emotions when I found I did not always feel happy.  Now I was suddenly responsible for causing my cancer in the first place by thinking negative thoughts and would be responsible for any recurrences or metastasis that later arose.  I did not find that knowledge particularly empowering or encouraging.  That was cancer failure number 2, being more of an Anxious Annie than a Perky Penny.

My mother battled 4 types of cancer in 12 years and managed to remain optimistic under the most dire of  circumstances. She died after that 12 year battle, still visualizing until the end.  I thought that if the most positive person I have ever known could get 4 different cancers and die from the disease, what hope is there for someone like me? But at the same time, I started to get the nagging feeling that maybe, just maybe, it was the theory that was wrong and that the experts didn’t always know as much as they thought they did.

I tested this theory on my breast cancer surgeon. He had told me at age 29 (first cancer) and 34 (second cancer found at my 5 year “cure” appointment), that I would have to wait 5 years to get pregnant from the time of each new diagnosis. I asked him why this was given that my cancers were not affected by hormones. He did not give me a scientific answer but he did get me to stop asking him the question. His less than tactful answer was that if I got pregnant now, “Baby may not have a Mommy in 5 years time”. Somewhere in the back of my mind I realized that he didn’t really have an answer to the specific question I posed. His answer told me science knew very little about 29 year old or 34 year old women with hormone negative breast cancer. That made sense as most breast cancer patients are diagnosed with the disease at a much older age when pregnancy isn’t an issue and their cancers are more likely to be hormone positive. That realization was freeing as it taught me to at least question the expert advice I had been given, to do my own research, to ask tough questions, and to make my own decisions. Now that was empowering knowledge!

My suspicions about my surgeon’s lack of answers to the pregnancy question were confirmed 2 years later with cancer number 3. I had a new surgeon and posed the pregnancy question to her.  She said that doctors no longer applied the 5 year pregnancy rule. She said I was 36, had 9 months of chemotherapy, and would likely have early ovarian failure and early menopause. She said if I wanted to get pregnant, I had better do it now before it was too late. Shortly afterwards my then-husband and I found ourselves in a local fertility clinic that had never dealt with women with a past history of breast cancer before. They consulted with my Cancer Clinic about the advisability of my taking fertility hormones. The initial response from the Cancer Clinic was they had never dealt with this situation before and they would have to consult with other oncologists in other areas of the country. The end result was that I had 2 courses of IVF treatment but I didn’t get pregnant. At least I got to try and it all worked out in the end with the adoption of 2 children. Even more importantly, the mega doses of hormones I took during each IVF treatment did not kill me as my first surgeon seemed to think pregnancy hormones would do. Medical science does not know everything. You have to do your own research and make the decisions that are right for you, even if they are not popular at the time.

I have had many more cancer fails over the years. I don’t identify much with what the media seems to portray as the ideal breast cancer survivor. You know the one dressed in pink who talks about how breast cancer changed her life for the better, how treatment was just a small dip in her otherwise perfect life, and how she is now happy, happy, happy that all that bad stuff is behind her because SHE BEAT CANCER. While this may accurately represent some survivors’ realities, it doesn’t represent mine.

I was frightened at each diagnosis. I found surgery painful, radiation exhausting, and chemotherapy nauseating. I haven’t beaten cancer although I hit the 5 year “cure” mark with cancers 1 and 3 only to have it return again. I won’t have beaten breast cancer until I die from some other cause. I worry about leaving my children behind at too young of an age as my mother left me. Cancer failure number 3 – cancer was not the best thing that ever happened to me. And once again, I am not Happy, Happy, Happy all the time. It is the think positive movement all over again, except this time it is wearing a pink track suit and is “running for the cure”.

Many of these examples I have given were from the pre-internet days where you were exposed to a limited number of medical opinions from the Drs. you dealt with and the books or magazine articles you read. Now with a few minutes of googling, you can find a mountain of research and websites giving information on everything from miracle cures by diet and supplements, to using the law of attraction to bring you good health, to the latest advances in medical technology, and to lists of all the clinical trials across the world.

Trends in cancer prevention and cure come and go in the blink of an eye. One day we are supposed to take shark cartilage supplements because sharks don’t get cancer and the next day we are told that logic is just bad science. Last year seemed to be all about not letting your water bottles get warm in the sun and not wearing a cell phone in your bra. This year, it’s all about avoiding sugar, alcohol, and dairy products. When I was first diagnosed with breast cancer, lumpectomy with radiation was the popular treatment of the day. Now the tide has turned and double mastectomy is all the rage. The guided visualization sessions of the 80’s and 90’s are now mindful meditation groups. The more things change, the more they stay the same.

Are you doing breast cancer right?
Is there even a right way to do breast cancer? With so much information available about advances in traditional medicine and on the other side, complementary or alternative treatments, how can a person know what is the right thing to do?  I don’t pretend to have all the answers, but these are some suggestions for sorting the good ideas from the bad.

First, get a copy of all the records and reports that relate to your cancer. The pathology reports will provide information about the kind of tumour you have, it’s hormone status, it’s size, it’s grade and it’s stage. As the treatment varies depending on the kind of breast cancer you have and the stage it was detected at, you need this information to do any meaningful research on your particular cancer. If there are terms in the pathology report you don’t understand, an online medical dictionary is only a click away.

Secondly, ask your doctor lots of questions, even the ones you think are too dumb to say out loud. Write your questions out in advance so you don’t forget to ask something important. Bring a friend, a notebook and a pen, or a tape recorder as you may forget the information you receive, especially if it is in the early days of a cancer diagnosis when you are already feeling overwhelmed.

If you are interested in complementary holistic treatments, ask your doctor if there are any that are available to you at your hospital or clinic. If you are taking holistic supplements, tell your oncologist as some types can interfere with traditional treatments, especially chemotherapy. Contrary to popular belief, there are many oncologists who will support the use of some forms of complementary treatments.  On the other hand, you probably will not find a medical doctor who supports you taking a completely alternative approach instead of one of the traditional forms of medical treatment. Think of Steve Jobs and Farrah Fawcett, two celebrities who tried to cure their cancer in non-traditional ways. What else do they have in common besides their cancer and their celebrity status? They are both dead. Medical science may not have all the answers but it does have ways to prolong life and halt the progression of this deadly disease, at least for awhile.

Third, when doing research, consider the source you are consulting to see if it is reliable and respected. Medical research should be based on controlled scientific studies that can be duplicated by others who will get the same results. “Research” that consists solely of testimonials and celebrity endorsements is not research at all but is usually a scam to get your money. Also be wary of bold statements made in the popular press saying that scientists found this substance causes cancer or that scientists have found using this substance will cure cancer. These headlines are often misleading as the actual studies may have been done on mice or rats and human trials, if they ever get that far, are a decade or more away.

Finally, I would suggest you join a support group, especially a large online one, to pose questions and learn the different approaches being taken across the continent by others living with the same kind of cancer as you. A support group is a great place to find people who can answer your questions of what chemotherapy or radiation are really like from a patient’s perspective rather than from a doctor’s point of view. It is the kind of place where others understand your fears and concerns, having lived them too. It can be a great place for emotional support on the bad days and for congratulations on the good days when you have cleared a treatment hurdle or reached a milestone of any kind.

I no longer think there is a right way or a wrong way to live with, prevent, or treat breast cancer. There are many decisions to be made at every step along the way. You sometimes choose treatments you don’t really want to do because they will prolong your life a little or a lot, but not every decision is of the life and death variety. As so much cancer advice has a very short shelf life, it is really not necessary to jump on every new band wagon that rolls into town. Until science has more definite answers as to why 40% of us die from breast cancer while the other 60% of us do not, follow the tips that make sense to you and leave the rest behind. They will all be forgotten anyway when the next hot tip of the day comes around.

Sharon Greene November 11, 2014

Posted from WordPress for Android

Advertisements

31 thoughts on “Am I Doing Breast Cancer Right?

  1. Sharon,

    Thank you for sharing your story. I appreciate that you ‘found’ my blog and reached out, so I could connect and read your story. By now you know I’m the older sister of a BC fighter, recently diagnosed.

    Just today, she texted to tell me it’s time to shave her head. Every day is a new lesson to learn.

    Hugs from FL,
    Robin

    Like

    1. I’m sorry your sister is battling breast cancer. The hair loss is always a shock even when you know it is coming. I didn’t shave my head. I took a wait and see approach because maybe, just maybe, it wouldn’t happen to me. They said it would fall out on day 14 after chemo. I still had hair on day 16 and went grocery shopping. That’s when it decided to fall out. I had a huge clump of hair in my hand at the store which I didn’t know what to do with. By the end of the night, I was bald. Best wishes to your sister and I hope she regains her health very soon.

      I loved your article on the creative mind and the messy desk. So very true!

      Liked by 1 person

      1. Oh my gosh!! Oh, Sharon. I just cannot imagine. Hers began to fall out on Day 15, the day I blogged about. I thought she cut it in preparation, only to learn that night it had begun to fall out.

        Like

  2. I am so touched by your story, honesty and transparency. Your overall point is unsettling and will remain that way as science tries to catch up with the true cause of breast cancer, if in fact there is only one cause. I don’t know. Breast cancer runs heavy on both sides of my family but none of us test positive for the BRCA genes. There’s something we have in common which science has yet to identify.

    I’ll keep you in my best thoughts and positive vibrations (for whatever good that will do, it can’t hurt.) I admire you deeply! 😀

    Like

    1. There are probably many causes of breast cancer but they haven’t been identified yet. Science is finding more and more genes that relate to breast cancer that aren’t BRCA but there still is no means to fix those genes so they no longer promote cancer. Finding out I was BRCA 1 positive was for my a relief as it took away the lingering guilt that I somehow brought my cancers on myself through my attitude,or diet,or lifestyle. So while the knowledge was good, the solutions aren’t great as they revolve around breast and ovary removal on one hand or surveillance on the other. But there really is no good way to do surveillance for early ovarian cancer so many of us opt for removal. I hope that at least in my children’s lifetime there will be a vaccine or less devastating treatments or maybe even a cure. I hope they will look back on these days as the primitive period of cancer prevention and treatment when so much was uncertain and the treatments were sometimes worse than the disease.

      Liked by 1 person

      1. When I was 35, I was having “bad” periods and a pap smear came back suspicious so my OBGYN did biopsies and found “suspicious” cells. Since I just had my 4th child, I was fine with getting a hysterectomy, especially since cancer runs rampant in my family.

        At 59, my mammogram and ultrasound showed “suspicious” cells which, through the stereotactic biopsy proved to be cancer.

        I am so thankful that I had that hysterectomy all those years ago or I most likely wouldn’t be here today!

        I too hope for my grandchildren and daughters-in-law that science hurries up with finding cures. I believe there is nothing to be gained from blaming people for developing cancers. That is absolutely non-productive and even negatively damaging to ones health.

        Liked by 2 people

  3. 🙂 Wow Sharon, your story is very touching. I’m sorry at some points you felt guilty. I knew from the comment you left on Kurt’s blog that your point of view was well based and not just something you thought about at the time. You only know when you are there.
    I can only say that I wish your guardian angel stays all the time by your side.
    And pretending to be happy when you are not, it’s probably one of the worst feelings a person can have. Hugs to you ❤

    Liked by 1 person

  4. “I won’t have beaten breast cancer until I die from some other cause.”

    Yup. Exactly. I read this and just kept nodding and nodding. Your “voice” is so relatable, I already just like you so much. Happy the Round Up sent me over here. xoxo

    Liked by 1 person

  5. Thank you. Thank you for blogging and putting yourself out there. Thank you for providing your perspective as well as proof that cancer isn’t “the best thing that’s ever happened to us.” Good for you for adopting and providing a home. We don’t know how long we’ll be around for our kids, but that doesn’t mean we should be afraid to provide a home for them.

    Cancer sucks. Cancer can go suck it. Cancer needs to go away. I can’t say enough how much I hate cancer. One of my sisters had leukemia when she was little, going through chemo during kindergarten; she hated her wig so the kids teased her for being bald. Now she’s in her 40s and has three kids and one grandchild. One of my sisters had non-hodgkins lymphoma. One of my stepbrothers had leukemia and was cured; because he wouldn’t take care of himself, he has relapsed.

    My mother-in-law had breast cancer two years ago and was cured. Now she has lung cancer and is blogging about it (www.stupidfuckingcancer.com). I expect her to come through it. The doctors are optimistic. I don’t want to lose her, but even more, I don’t want my seven-year-old son to know yet what it’s like to lose someone you love. Not yet. She’s 67. Give her another 20 years please.

    I’m rambling. My point is that we’re all in this together. I figure it’s not a matter of if but when. Hang in there.

    And thank you.

    Liked by 1 person

    1. Wow! Your family has suffered so much from cancer. I’m glad to see that you are still well. Hopefully they will find an actual cure if not in my lifetime, than at least in the lifetime of my kids. One of the good things about adoption was that I didn’t pass my faulty genes to my children. This particular mutation will end with me.

      Liked by 1 person

  6. Excellent writing, and spot-on thoughts! My son had leukaemia when he was 8, and when he went off treatment at age 11, we bought T-shirts that said “I kicked cancer’s ass!” He passed his 10-year event-free survival mark this year, drinking, smoking and eating nothing remotely healthy. I started treatment for my triple negative breast cancer Dec. 30 last year, and finished active treatment in August. I am trying to cut down the sugar, up the veg and fruit consumption, exercise, etc. and still wonder if I’m doing cancer right. I am not Happy, Happy, Happy, hated October, and can’t even look at the pink pieces in my closet that I wore before diagnosis. But I’m doing everything you noted here, and with FOUR bouts of TNBC, you are my new hero!

    Liked by 1 person

    1. I’m sorry that you and your son had to join the cancer club. I have come to believe that cancer is pretty random in who it allows to live and who it allows to die. I know people who did everything right and didn’t make it while others (like me) really shouldn’t still be around. Thanks for calling me heroic. Most days I don’t feel anything like a hero.

      Like

      1. Living through four dx and four tx?!? That’s hero material. I feel like a mess every day, and docs say “Just keep putting one foot in front of the other.” So I do. I have to say though, it drives me round the bend seeing how my son flaunts his good health. Random is right!

        Like

      2. It is a cliche,but your doctor’s advice of putting one foot in front of the other,one day at a time, actually works. The alternative is too overwhelming and can leave you paralyzed with fear. Best wishes on your cancer journey and hoping your good health will soon return.

        Like

  7. Thanks for sharing you experience. One therapy or treatment isn’t always the right one for everybody. It’s really hard to navigate all the conflicting information and advice out there. In the end, we all have to find what works for us and feel good about the choices we made. I wish you continued health and wellness!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s