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Self-Advocacy & Taking Some Time Are Vital After a Cancer Diagnosis

I am a firm believer in the necessity of being one’s own staunchest advocate. This is true for all areas of your life, but it’s vital if you want to receive the best medical care.

This is not to say you shouldn’t have trust and faith in your team of medical care providers, but you do need to feel free to speak your mind, have your opinions heard, ask questions, stand up for yourself and ultimately make the final decisions.

Perhaps most importantly, when something is being discussed and you don’t understand it, ask and then keep asking for clarification until you do understand.

Actually doing these things is much easier said than done, especially when faced with a serious diagnosis like cancer.

When you receive a cancer diagnosis, you are initially in a state of disbelief. You feel as if the words “you have cancer” must be describing someone else. I remember quite vividly the afternoon I received the phone call confirming my diagnosis and the disconnection I felt to those words.

I couldn’t believe they were describing me. It seemed impossible.

After receiving a cancer diagnosis, a person is in a very vulnerable state of mind. Yet during this period, you are suddenly faced with the harsh reality of seemingly countless appointments and procedures.

In addition, you are trying to absorb volumes of new information while also attempting to make life-altering decisions. At times it all seems just too overwhelming because it is. 

Yet this is the time when you must advocate for yourself most diligently.

In order to do this effectively I believe one must take the time to step back, breathe, slow things down a bit and think things through.

Too often decisions are rushed.

While this need to hurry up, get the cancer out and just get on with it is understandable, it might not be the best strategy. Of course, taking too long isn’t good either, but generally it’s okay to take some time.

Usually a cancer diagnosis is not an immediate medical emergency, even though it certainly feels like the emergency of a lifetime. My doctors kept reassuring me most cancers have a window of six weeks or so. During this time frame, tumors don’t generally change enough to impact decision making.

Therefore after a diagnosis, there is usually time to absorb, process and adjust to your new reality. During this period of days or even weeks one can mentally prepare, gather information, compile lists of questions and hopefully put together a plan.

By taking this extra time, you will undoubtedly become better informed, feel mentally more prepared and ultimately feel more empowered to make better decisions.

You will begin to feel more in control of your medical care and your life.

It won’t be easy. In fact, at times it will seem undoable.

Ultimately, it is your life. It is your cancer. It is your body. The final choices are yours to make.

Isn’t this really what being your own best advocate is all about?

Did you feel rushed to make decisions after your diagnosis?

Do you find medical self-advocacy to be difficult? 

When did/do you feel most over-whelmed?

 

 

 

Elizabeth J.

Thursday 29th of August 2013

Excellent post for most cases. Most breast cancers are not that aggressive that reasonable time cannot be allowed.

Unfortunately, in a few cases they are. But, in those cases, doctors can and should make clear the difference. I had inflammatory breast cancer. I went from a barely perceptible rash to a swollen breast with peau de orange texture over most of it in one months time. The first ultrasound compared to the one just before chemo started was the stuff nightmares are made of. In my case, once I read the information my doctors gave me, plus what I looked up on my own about IBC, it was actually reassuring they were moving quickly.

One thing that helped was that IBC treatment does not start with surgery, but with chemo. So I actually had months to talk with the doctors, study up on it myself, to understand why there was no choice but mastectomy in my case. And also that immediate reconstruction would not be a possibility.

With most breast cancers where surgery is the first treatment, and where the cancer is less aggressive, rushing could easily lead to a lifetime of regret. And despite advances in reconstruction, women need to realize a mastectomy is in fact irreversible.

One new lady in my support group was in tears because she had chosen double mastectomy with immediate reconstruction over lumpectomy because she was told she would have better cosmetic results, and she woke up to these nipple-less unrecognizable sensationless masses (her description)on her chest. Although her surgeon had told her there would be fillings, and then switching to permanent implants, the only after pictures she had been shown were the completely healed reconstruction, no prep for immediately after. And no one told her she would lose sensation, something she would have valued over the cosmetic outcome. Ladies who had had the same surgery were able to reassure her about how she would eventually look, but she was devastated to realize loss of sensation was permanent. Clearly she was rushed into a decision without full info. It is a pity, unlike me, there was no reason to rush, and unlike me, she could have had real choices.

Nancy

Friday 30th of August 2013

Elizabeth, Thanks for making such great points. As I mentioned in my post, most bc cases are not immediate medical emergencies and there is time to think things over a bit. Your case was certainly different. The story you shared about the woman in your support group is really sad and probably not all that uncommon. These decisions are huge and a woman needs to be well informed and if time allows, also be allowed to ponder things over a bit. Thanks for sharing.

Jan Baird Hasak

Monday 14th of May 2012

I absolutely felt rushed to make decisions after both my diagnoses. Time was of the essence, as they say in the law. My own fears paralyzed me, and yet I had to arrive at final decisions pronto. Self-advocacy was difficult for me, a person who in the past tended to be medically compliant. After all, didn't doctors, like fathers, know best? I found out later that this was yet another myth. My life is now cluttered with myths. If I can help one single person to dispel a single life-altering myth, I will be happy. And brushes with cancer bring out those myths like none other. Thanks for this enlightening post. xx

Nancy

Monday 14th of May 2012

Jan, Self-advocacy is difficult even when we are feeling our strongest. I think it can be extra tough for women because we are often brought up to be compliant and some of this carries over into the medical realm as well. No one should ever be afraid to question, analyze, get second opinions or just speak up. Thanks for your comments.

Beth L. Gainer

Friday 11th of May 2012

Oh my gosh! This posting is excellent! You are so right about self-advocacy being so important, and so many people don't know about how to advocate for themselves. As you know, I'm writing a book about this in efforts to help people figure out how to fight for their best interests.

Yes, I encountered hurdles (a year's worth) to get my double mastectomy with DIEP flap construction. Doctors fought me on this, I fired them, and I found replacement docs. I cried a lot during that period, but I persisted and got the medical care I needed.

Nancy

Friday 11th of May 2012

Beth, I know this is a topic near and dear to your heart. I can't wait to read your book. I'm sorry you had to face so many hurdles getting your doctors in sync with what you wanted. You persevered, though, and that's what self-advocacy often requires. Thanks so much for your comments.

Catherine

Thursday 10th of May 2012

The advice to keep asking questions is excellent. It’d be wonderful if patients were made to feel empowered to ask questions, maybe they could have a nurse or volunteer with them who asks: Do you understand? Can we explain anything more clearly? What do you understand right now?

Nancy

Thursday 10th of May 2012

Catherine, I like your idea of a nurse or volunteer buddy. Even a past patient might be willing to fill such a role. It would be nice to have someone to call when you get home too, because often times your questions don't pop up until later. Empowered patients are the best kind, right? Thanks so much for commenting.

Barb

Wednesday 9th of May 2012

I wish that I had been more of an advocate for myself upon dx. I was rushed into surgery 10 days after dx and in those 10 days was rushing around getting blood tests, seeing drs, getting scans etc. I had no idea that I might have had options. I had no idea that one of those scans would show mets and what that might mean. Perhaps I would not have had to have the mx. I still feel less knowledgeable and therefore somewhat intimidated by any Dr. but, I am learning how to be more active in my treatment! It is so important to let any newbies know that, yes, you do have time to take a breath and ask about what options there are.

Nancy

Thursday 10th of May 2012

Barb, I'm sorry you felt so rushed and were not made aware of other possible options. That's too bad, but don't beat yourself up. It's all a huge learning process for sure isn't it? We do our best as we go along. Good for you for becoming more active in your treatment decisions and thanks for be so open about your experience in this matter, Barb.

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