My uncle Tommy put it well when he explained to me that I am currently preparing for battle. While I am still as physically and mentally strong as I can be, I should collect as many pieces of information and as many items of strength and comfort that I can before the real fight begins. Chapter Ten of the Breast Book lends some very good advice in terms of preparation.
Below are some words of understanding, inspiration, and knowledge that I have already put into my arsenal. Ladies, if you’re still pushing through this Breast Bible, then please share any other information you gather from this chapter or past chapters that I too may find helpful as I get ready.
Knowing the battlefield:
“Unlike, say, appendicitis or a heart attack, there’s no pain or fever or nausea – no symptom that tells you something’s going wrong inside” (257).
“The initial shock can leave you feeling confused and not sure how to proceed. Your mind is seesawing between numb denial and terrified comprehension. But once you get the medical information and need to make decisions, things get better. Once those decision have been made, things get better still” (258).
“Getting your breast cut off will not make things go back to normal; nothing can ever do that. Your life has been changed, and it will never be the same again” (258).
“. . .it’s important to allow yourself to feel lousy. Cancer is a life-threatening illness, and the treatments are all emotionally and physically stressful; you need to accept that and pamper yourself a bit” (265).
“The downside is that it takes time and patience to wade through the pros and cons of all the options. You have to take the time, and you have to have a doctor who will travel this road with you, along with your local reputable breast cancer support organization” (259).
“[You] can have a hard time taking it all in. For this reason I suggest your bring someone with you when the doctor explains your options. . .” (259).
When choosing a doctor, it is important that the doctor’s style matches your own. “There is no right or wrong style, so don’t feel guilty if your needs are not the same as those of your friend or neighbor. Remember, it’s about what style works best for you” (260).
“While style matters, so does the knowledge and experience of the doctor. You may need to do some research to find the most knowledgeable doctor available. In many urban areas this will be a surgeon who specializes in breast cancer or even a multidisciplinary breast center” (261).
“You can’t take forever, but you don’t want to hurry yourself either. In my experience, most patients are able to assimilate the information and make their decisions in a month, including any second opinions they may need” (261).
“You don’t have to be Superwoman. Get help from your friends and family – throughout the treatment. Often, when you’re having chemotherapy, the people who were supportive in the beginning start to drift off. At that point, you may want to get into a breast cancer support group. . .” (265).
“[Loved ones] too are feeling frightened, angry, depressed, maybe even rejected, if all your attention is going to your illness, and they may not have as much support for their feelings as you do for your yours. It’s crucial to communicate with one another at this time, to work through the complex feelings you’re all facing” (271).
“But remember, [doctors] are people just like you, and you can bet they’d want someone to pay close attention if they were in your shoes. Never lost sight of this fact – and don’t choose a doctor who has” (272).
“You need to feel that your doctor sees you as a person” (273).
“You will want to be certain that your doctor not only answers questions you may have but also provides you with information that allows you to make decisions or shows your where to look for answers” (273).
“You may want to know every detail. If this is the case, you should expect the doctor you select to explain tests and procedures you will be undergoing. However, you should decide in advance how much you really want to know” (273).
“. . .tape-record conversations with your doctor” (273).
“Procedures, drugs, and information are changing so rapidly that you may stumble on an article, web page, or even information in a chat room that could have a profound effect on your treatment – and that your doctor may not have heard about. A good doctor won’t be threatened by this sort of information but will want to help you interpret it” (275).
“Sometimes patients are shy about seeking a second opinion – as though they’re somehow insulting their doctor’s professionalism. Never feel that way. . .Most doctors won’t be offended – and if you run into a doctor who does get miffed, don’t be intimidated. Your life, and your peace of mind, more important than your doctor’s ego” (276).
“In the long run, I’m convinced you’re better off when you consciously choose your own treatment. . .The end result is more anxiety ahead of time while you are trying to make decisions about your treatment, but fewer regrets afterward” (260).
“The internet generally is a wonderful source of information, but you need to be a savvy surfer” (271).
“Know the site’s sponsor and whether it has anything to gain from the information given” (271).
“Know who is answering questions or giving medical advice” (272).
“Check who wrote the information on the site and when it was last updated” (272).
“If the information that you get on a site disagrees with what your doctor says, print out the page and bring it to your doctor for discussion” (272).
While most of the chapter gives great advice with which I agreed, Dr. Love suggests some things about which I’m not so sure.
What do you think?
“Most importantly, a woman faced with these decisions cannot make a ‘wrong’ choice. If you are given options it’s because these are reasonable options in your situation. When a mastectomy is a better option, your surgeon will say that. In most cases both mastectomy and lumpectomy with radiation work equally well. . .It is not as though if you choose wrong you’ll die, and you choose right you’ll live” (264).
The chapter ends with a lot of information about clinical trials and studies. What do you think about that? If I stick with Dr. Borges at CU, it is very likely she will suggest trials. I am torn. On one hand, it seems like a great idea, especially if she’s targeting my particular type of cancer. That’s why I’m interested in seeing her, right?! On the other hand, it’s risky. Any insight?
Dr. Love urges her readers with cancer to participate in studies; although, given her background, this is an obviously biased opinion. What do you think?
And now, on to Chapter Eleven, which is all about getting to know the enemy. . . .