What Metastatic Breast Cancer Patients Wish Medical Oncologists Knew

Medical oncologist James Salwitz writes a blog called “Sunrise Rounds.”  

In a recent post, “Secrets of Cancer Survivors,” Dr. Salwitz offers 25 tips about “dealing with the dread disease.” He acknowledges that as someone who has never had cancer he isn’t qualified to pontificate about it–his intention is only to share what he has observed over his years of treating patients.

While I agree with most of Dr. Salwitz’s suggestions, it bothers me that he makes no distinction between someone being treated for early-stage disease and those who have advanced disease. It’s not as though people with Stage IV breast cancer could have prevented or survived the disease by adhering to these 25 points. I know many people who were model patients with supportive families and wonderful friends and adorable pets. They took excellent care of themselves–they hydrated, they exercised and they journaled. They were educated and proactive–I am pretty sure at least one of them could have given me a very sound second opinion.

These patients did “uncover every stone” just as Dr. Salwitz urges. But all of them died. All of them had such spirit and heart–many left behind young children–they tried their hardest. Maybe it did buy them a little more time, but ultimately they did not survive. There is no extra credit in metastatic breast cancer–no character witnesses to testify on our behalf. Molecular biology is heartless.

Much of what Dr. Salwitz says is common sense–be on time, bring a friend, don’t let cancer take over your life, educate yourself, ensure all of your medical providers are on the same page and so on. This may improve patients’ overall experiences but I doubt it will truly impact outcomes in the clinic. So much of that depends on subtype, prior treatment, comorbidities and, indeed, what type of cancer the person has. Metastatic testicular cancer is curable; metastatic breast cancer is not.

I can’t offer survival secrets. But I would like to give Dr. Salwitz and his cohorts some ideas on improving the patient experience–particularly as it relates to those dealing with metastatic breast cancer.

RELEASE TEST RESULTS PROMPTLY. When you have Stage IV breast cancer, you generally are scanned every four months to see if  a treatment is working. Some oncologists release test results as soon as the scans are read, others prefer to go over them with the patient. Waiting for results is awful–if you expect a delay (a holiday or some scans results will be delayed) please advise your patients.

Here’s another pro tip: When making a routine call, avoid the ambiguous and ominous message: “This is Dr. So and So’s office. Call us.”  HIPPA may preclude you from saying something like “Your blood work is fine,” but it may be possible to say something like “No big deal, call at your convenience.”

WATCH YOUR LANGUAGE. Shortly after my Stage IV diagnosis, my doctor said she was going to restage me. Great! Maybe I didn’t really have Stage IV breast cancer. But it turned out she just wanted to send me for scans to see if my treatment was working. Please clarify medical jargon.

HELP ME UNDERSTAND WHERE I FIT IN. When I was first diagnosed, I only knew I had Stage IV breast cancer–it was helpful to know I had a small volume of metastatic disease and that it was confined to my bones and that this was “good.”

Now, some years down the road, I want to know what treatments might be next for me–do I have many? Just a few? What is the range of AIs, oral chemos and IV chemos? Not everyone does, but I do like to think ahead.

HAPPY PATIENTS ARE INFORMED PATIENTS. The patient who is waiting and waiting in the aptly named waiting room will likely be less anxious if they know up front you are running behind. Or if the pharmacy is behind. Or if some emergency came up. Just sitting there like a bump on a log sucks.

WHAT IS NOTHING TO YOU IS SOMETHING TO ME. For years, my hospital used a CT contrast drink that required mixing with water and consumption the night before the exam. When it changed to a different type of contrast (no water added, consumed the day of the test) it was unsettling. I was used to my routine–the one thing I can control. And now it is different. No one explained the rationale behind the change–until I asked.

That wasn’t a huge deal–but other changes are. For example, one patient I know  was filled with anxiety after her oncologist’s office called to reschedule an appointment–it turned out the doctor had to participate in a  clinical trial conference call–nothing at all to do with her.

HIRE WISELY. Your front office staff, nurses and techs are a reflection of you. Would you ever tell a newly diagnosed patient “Gee, I’m having a really bad day…I can’t figure out how to install this toner cartridge in my printer”? Well, that’s what your receptionist told me–and I could readily see that her office equipment issue was worse than my chronic, progressive and ultimately fatal disease.

AUDIT YOUR PHONE LINES. Sometimes when I call my oncologist, the “good” phone person answers. What a relief–she is a long-time employee, very friendly and I know she will give the nurse a clear message. Other times, I get the “bad” phone person. Her greeting is both hostile and brief: “Cancer Center” is all she ever says but it clear that what she means is “Why must you patients continue to inconvenience ME?” She will take down the absolute minimum of information–usually just my phone number. This generally leads to further delays because the nurse will have to call me, listen to my issue, hang up so she can consult the oncologist and then call me back.

LISTEN AND LEARN. I  have noticed my oncologists’ notes often reflect who accompanied me to an appointment–but I have never been asked about this. Sometime I am not alone–but the person who is with me had to take a work call–or stay with her young kids out in the waiting room.

I have a friend who prefers to go to her appointments by herself. If she is getting chemo, she can let the nurses take care of her–she doesn’t have to worry about taking care of someone else. Similarly, she can be direct with her oncologist without fear of upsetting her companion.

 

QUIT IGNORING US. Go into an oncology clinic and try to find information and support services for metastatic breast cancer. You will find that most of the material is geared for early stage breast cancer–the American Cancer Society, a group that supplies publications on a wide variety of cancers, just gives us a page or two in its general “So, You’ve Got Breast Cancer, Sure Sucks to Be You” brochure. Note that 90% of those in the metastatic breast cancer ranks were previously treated for early stage breast cancer–therefore about 90% of the material in the general breast cancer brochure is irrelevant. Groups like MBCN, LBBC, YSC and the Metastatic Breast Cancer Network do offer brochures but patients generally have to seek these publications out on their own.

LET’S BE HONEST ABOUT THOSE TOUGH CANCERS. As someone with MBC, I really struggle during October–all those happy pink celebrations–usually for people with the curable form of the disease. What about people with pancreatic cancer–the majority of whom are dealing with metastatic disease? How about the lung cancer patients? Lung cancer is the single largest cause of cancer deaths. Not everyone with lung cancer smoked but that is the popular assumption and probably the reason we don’t see professional sports teams donning special gear to mark Lung Cancer Awareness Month.  Rather than ignoring the “difficult” cancers, why not give us equal time? Aren’t our stories worthy of sharing?

BusChancesPLEASE FORBID YOUR STAFF FROM SAYING THE BUS THING. Last year, I was upset to learn my disease progressed. A nurse attempted to cheer me up by invoking the dreaded bus phrase: “Well, you never know, you could get hit by a bus.” This only served to make me more upset. The number of people who die from MBC annually (40,000 in the US) FAR exceeds the number of pedestrians mowed down by buses and other vehicles (something like 4,300  in the US). So actually, I have a fairly slim chance of getting hit by a bus, but  a 98% certainty this disease will flatten me–although I don’t actually have a time frame for that.

INVEST IN PATIENT COMFORT. I visited one oncology office where the front desk looked like the bridge of the Starship Enterprise–very modern and gleaming. Meanwhile the waiting patients were crammed in a tiny vestibule with chairs that were probably salvaged from the Partridge Family’s garage. Same thing in the exam room–more crummy mismatched chairs and paper gowns.  Small things make a difference!

This isn’t a list of grievances–just things I think that could be better. (I’m sure I have overlooked a few.)  I have been fortunate to be under the care of gifted oncologists and I am grateful for their empathy and skill  and all the dedicated people that work with them . I hope my patient perspective is helpful!

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9 thoughts on “What Metastatic Breast Cancer Patients Wish Medical Oncologists Knew

  1. Janis says:

    As always, you are spot on. I agreed with every point and was nodding in approval.

  2. katc56 says:

    As both a survivor and an oncology RN, I agree heartily with your remarks. If it takes me the rest of my career, I will try to get my colleagues to understand how hard it is to wait for results.

  3. Heather says:

    Great article. I might add one thing (well it is a two parter)….please do not send in residents to give bad news about progression. If it’s unavoidable (sure they have to learn) please make sure they come in prepared.

  4. Laura says:

    Myself, my sister and my dad accompanied my mother on every appointment when she was metastatic. You have made excellent points! We were always hitting roadblocks with certain staff members and doctors, it took the strength of all of us to fight it. Every time we were told there was like a “1%” chance of this or that horrible side effect…poor mom got it. The doctors really seemed puzzled and honestly uncompassionate and shocked that we would protest or ask for other solutions. Mom didn’t fit in their “peg” and they weren’t willing to extend themselves to help us many times. Despite all this my young mother was the absolute most optimistic person on earth no matter what; we helped to keep her buoyed and laughed in the face of all the pain. God Bless You and keep you…keep announcing and demanding they listen and help!

  5. Pat Wetzel says:

    Great article. As someone dealing with long term incurable lymphoma, your points resonate! I’d add one thing: please make the waiting room a cheery place. The people waiting are ALIVE. They may be more alive than anyone on your staff! Get rid of the institutional and grim decor! And please have the receptionist be at least mildly personable!

  6. Jill says:

    I agree! I hope you figure out a way to get oncologists to read it.

  7. Connie Guth says:

    The hospital admin who house the chemo treatment center should know that our chemo nurses make it their job to get to know us and care for us. My hospital let go several nurses because they weren’t under the hospitals umbrella and were a part of another system but they had been involved in my care from my first diagnosis in 2009 and then when I had metastasis in 2013. Those same women remembered me! Then one day they were gone and a whole new staff appeared. Of course after a year has passed I know them just as well but it was a scary adjustment. Our nurses are on the front lines, they are honest and up front with us and know if we are a hard stick and what tricks to try and how to comfort us. We trust them. Don’t just rip them away from us. Oncology nurses have a special gift.

  8. I just found out yesterday that my stage 3 breast cancer has spread, and I am officially stage IV. EVERYTHING you said is spot on. Thank you for posting this, I feel a lot less alone now!

  9. Reblogged this on hello world and commented:
    I found out yesterday that my IBC (stage 3c) had metastasized, and now it is officially stage 4. I got cancer at 27, and I’m now 28, about to be 29. I already had a modified radical mastectomy, in which all of my lymph nodes under my left arm were removed. Afterward, I was told ” a few rounds of radiation,some physical therapy, and you should be done!” by my surgical oncologist. She must not have even looked at my file, because not even a week later, my chemotherapy oncologist told me that it was looking more and more like advanced-stage. So, she did some tests, and she was right. My false balloon had been popped. I was so sure I was ALMOST DONE- only to be told I have the final stage of this evil disease that has taken over my breasts, lungs,bones,and liver. Then I read this and didn’t feel quite so alone in my doctor-dissatisfaction.

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