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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?

 

 

 

20 thoughts to “Self-Advocacy & Taking Some Time Are Vital After a Cancer Diagnosis”

  1. I was discussing this topic with another cancer survivor friend just yesterday. We feel so rushed and overwhelmed after a diagnosis. These are great words of advice. Could you share this blog with our network this month?

    1. Angela, Sometimes one can indeed feel too rushed. The decisions made at this time are huge and require serious thought and consideration don’t they? Thanks for commenting. And yes, I’ll share. Thanks for asking.

  2. Thank you for this worthy advice. I have witnessed so many close friends,relatives, & clients rush in their decisions and really fall victim to the cancer machine.
    In fact a friend of mine just got a full mastectomy after being diagnosed with an early stage cancer only 2 weeks ago.

    Self-advocacy is key. I will save this one and share when appropriate.
    Thank you,Judy

    1. Judy, Self-advocacy really is key isn’t it? It’s not good to rush any kind of non-emergency medical decisions really. I’m one that requires a certain amount of “processing” time. I don’t think I’m alone. Thanks for commenting and yes, please do share when appropriate, Judy.

  3. Great post. Self-advocacy is so important. As is taking the time you need. My diagnosis to surgery went pretty quickly with some well-defined decision points along the way. Honestly, I didn’t feel that I needed more time because things were fairly clear cut. But had some outcomes been different, I would have needed more time to process. I find that post active treatment, in this maintenance phase, there are lots of decisions, and lots of thinking that needs to be done as well. It’s always good to know that you can take a breath, stop, process and gather more info as needed.

    1. Elaine, Of course, sometimes things are pretty cut and dry. This is true. Even then, however, a person might need a bit of time to process through. You raise a good point about this “maintenance phase” requiring lots of decisions too. Sometimes we forget this. Stopping to breathe is always good, right? Thanks for reading and commenting.

  4. Taking your time, not rushing, realizing that, usually, you have more time than you think to make decisions, is one of the hardest things to do when, mostly, you feel like a deer in the headlights. I did my best, but in retrospect — which began to arrive early on — I don’t feel that I got to make the ‘best’ decisions in my own case because I never really got honest and complete information from the doctors I consulted. Sad to say, but we have to trust that we are really being given the tools to fulfill the concept of ‘informed consent’ even when we are not. But if we’re not fully informed, then how can we understand what we are consenting to?

    It’s not easy to take it all in, for sure. You feel like you are taking a crash course in oncology. There were no nurse navigators available when I was diagnosed. That notion was just beginning here at the time, and it may have helped me a lot if I’d had one. But ultimately, there are very few ‘wonderful’ choices when you face cancer, just the lesser of various evils, at best. So you do the best you can, and hope you can deal with the consequences. And that’s where Elaine’s point is so important to keep in mind. I would have felt much better, physically and emotionally, with the choices I did make if I had not felt an utter lack of real help or compassion for the aftermath of treatment from my docs. That has really got to change.

    1. Kathi, I’m sorry to hear you don’t feel as if you received honest and complete information. Do you think certain things were withheld? I wonder if it’s even really possible to take it all in at such a time, but certainly everyone deserves honesty. I did not have a nurse navigator either. As you said, we do the best we can through all this crap don’t we? I do really believe one needs to take at least a little time before jumping into decisions. Usually, it’s alright to do this. Thanks for sharing.

  5. Nancy, this is such an important topic! It is hard not to feel you must act immediately upon hearing you have cancer. In some cases this is true, but in many, it is OK to take some time to think through your decisions!

    I was diagnosed in early December and fell into the “there are no appointments available before or after the holidays” hole.

    This bought me time. My surgeon also gave me a great piece of advice: “Your cancer has been growing for years. Another few weeks is not going to make any difference in your treatment plan.” He was right.

    It’s also important for newbies to know they can say NO! I was originally scheduled for a lumpectomy and it happened so fast that I had a panic attack. But I listened to my gut and said NO. That bought me time to get an MRI — after which my hospital’s tumor board determined I needed a mastectomy.

    So sometimes it pays to wait if things aren’t sitting right with you. We have to listen to our guts even in times of great crisis.

    1. Renn, You’re absolutely right in that there are instances when things can’t wait, but for the majority of cases, there is time to ponder things for a bit. And you’re also so correct in stating we can always say no. Ultimately all decisions belong to the patient, or should. Going with your gut is often the way to go as you certainly know. Thank you for your insights.

  6. 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.

    1. 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.

  7. 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?

    1. 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.

  8. 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.

    1. 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.

  9. 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

    1. 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.

  10. 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.

    1. 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.

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