How to navigate medical decisions when diagnosed with cancer

Posted by Jonathan on 1/27/2018 to News

There are so many beliefs out there and everyone has a personal decision to make When first diagnosed with Cancer and believe me, after going thru it in my family many times, I find that everyone's reactions and decision processes are totally different.

My Brother Steve was an active wonderful father of 5 energetic girls and grandfather to 9 at the time(Now 20 grandchildren), intelligent and a man strong in his faith. Steve decided to do treatments but at first after a time it seemed the treatments were almost making things worse. I mean, it was treatable cancer from our knowledge of colon cancer. So off he went to a naturalist who proceeded to prescribe expensive out of pocket “homeopathic” treatments. Supplements, some several times a day, to help offset the effect's of colon cancer treatment’s and directly fight cancer itself did seem to help. I remember after he passed away reading about the supplements; pills to stop irregular cell growth, pill's to produce energy, pills to produce cell regeneration, pills to help increase appetite, to help with vomiting and nausea every vitamin and on and on AND ON – all meant to help but did it hurt him? He was diagnosed in January with simple stage 2 cancer, certainly a very manageable stage and by November, right before his 57th birthday, he was gone. Was it the treatments, lack faith, the homeopathy?

I've known others, like my mother, who, after being diagnosed with stage three Breast cancer, say that she would do the Lumpectomy but no treatment. Through surgery it all gone the first time, but when it came back with a vengeance three years later, she said, “No more, I am not even doing surgery. I'm ready to go home and that is that.” She is on a chemotherapy pill and today, three years later, no cancer exists inside her.

Then there is Robert Cook, owner of AJ’s Wigs, and my husband, when it is this close to home it is even harder to navigate decisions or even feel like what you are doing helps. Bob has fought cancer on and off now for 18 years now we as a family decided to fight it all the way with treatments, faith and a mix of homeopathy. I think of my brother's pills and then I see what we have purchased we are blessed that the homeopathy helped Bob, the treatments worked for advanced cancer and now we just navigate the maintenance of follow-up. Bob is the quintessential example of what has worked from faith, diet, juicing, homeopathy, treatments, and now like my mom, he is on a chemotherapy pill and an injection. Bob will tell anyone that having a personal advocate that looks at all treatments or a palliative care professional is what helped him the most. Then navigating not just treatments, but work, family, self and the big one cost. We have fought the good fight sometimes with insurance sometimes without and the one thing that Bob said always works is having a nurse advocate to help you navigate the waters.

Navigating Challenges.

The collaboration and formation of a “team” is one of the most important aspects of treatments. Your physician/surgeon/PCP knows the tumor or infected cells and area, but on the other hand, you know how you feel. You know your beliefs and you know the value of consulting with your family as to which treatment is best for you. In the past, the relationship between patient and physician was always, almost paternal in which you did absolutely everything your physician told you to do, but in the last 10-15 years, patients have taken a more proactive position on their own care. Patients are more informed these days, as well as many, are learning to get a second opinion. Getting a second opinion, whenever possible, I think is very helpful. It's helpful for several reasons. For one thing, it can certainly help the patient understand more about their disease when they speak to an expert in the field. And that can make them more comfortable about the treatment decisions that are being made. Another thing to consider is that physicians are also encouraging patients to do the myriad of clinical trials while they closely monitor you.

I think it’s incredibly important for patients to seek out experts who know the most about their disease. I realize this is not always possible, depending on the geography of where a patient lives. But being in contact with somebody who focuses on that particular type of cancer is very important for many reasons. I think one of the main issues is that cancer, as a field, has just exploded in terms of the amount of information that’s there which has made it both easier to navigate and harder at the same time. I say harder because sometimes one can feel overwhelmed

As one physician put it:(Source 1)

The diagnosis of cancer can be very overwhelming and scary. And many patients feel that they need to move quickly in terms of making the decision of treatment. But it’s very important when you meet with your specialist to understand the nature of the tumor, the options for treatment, and the side effects and what are the goals of treatment. And this information is important not only partnering with your physician but also to give you a sense of understanding where you’re at in terms of your illness.”


The most difficult decision we find with our patients here at AJSWIGS, is which treatments will give you a better quality of life which going through the treatments, especially when in stages3or4. We all know, that Stages 3 and 4 are more severe. Decision making about cancer might seem to be a simple matter: Choose the option that prolongs life most. If treatments are equivalent in prolonging life, then choose the one that maximizes quality of life (the treatment that gives us a better quality of life). However, decision making is not that simple. Ideally, any treatment you choose will not only prolong life(if not get rid of the Cancer) but give you the quality of life minimizing the effects.


However, there are alternate treatments (non medical treatments) that will truly help with your progress or mental health, such as Massage, facials, Makeover, a new Wig, mini vacations, develop a bucket list of things you want to do. Look good Feel good


CONCLUSION

Although people have more choices today then ever before, and people are being more proactive, and there are more treatments on the market with more coming out every year, confusion set’s in which is why, more then ever, you need to depend on your second opinions, family and friends (as they know you best).So, In a way, Cancer(treatments, choices, different opinions of people who don’t know what your going through) is more complicated due to today's technology and vast portals of information. Cancer is hard enough on an emotional level without being so complicated, so it’s time to get back to the basics i.e. eating a clean diet, developing a relationship with your PCP and being open about your health status at all times. Every pain or twitch must be reported to your care team.

Source 1  American cancer Society