Cancer advocacy and asking the right questions

It has been just about a month since we have been home. One of our primary reasons of moving back to Orlando was my Mom’s health. 

There have been some updates.

First, during her surgery a few months ago, the extra infected lymph nodes were actually removed and her chemo that she is undergoing right now is more preventative. I have absolutely no clue why this was never shared with us to begin with. We thought that the lymph nodes were still in her body and they would be removed later after the chemotherapy. Only during a doctors appointment a few weeks back did Mom mention the lymph nodes and her Oncologist said, “oh we removed them during your surgery.” URG. Why were we not automatically given all of the medical notes on discharge so we knew what happened in the operating room

Her oncologist here in Orlando, has stated that some of her cancer on her liver has grown. We don’t know how much of the cancer, or how much growth, or what scans they are comparing the growth too. In the past, her doctor here in Orlando and the Drs. at NIH have used different scans and not always had the same results and answers for us.

Her oncologist here, Dr. Z, has spoken with her doctors in Maryland at NIH. This discussion was preempted by a talk I had with the NIH doctors. Her oncologist here wanted to stop her chemo for the Colon Cancer and go back to treating her renal cancer in hopes of stopping the growth on her liver. The problem…NEVER have they biopsied her liver growths…so how the heck do they know which type of cancer to treat anyway!? This Thursday she will have a needle biopsy to determine the type of cancer on her liver. She is scared to undergo more medical treatment, but it really is for the best.

My biggest problem at this point, is that her oncologist here in Orlando has been treating her almost weekly for the past 5 years. The doctors in Maryland see her once a year. 1) Why has Dr. Z never brought up the idea that her liver has NEVER in 16 years been biopsied? 2) Why is he not being more proactive in advocating for her healing and defeat of this disease? 3) Why are all of the doctors not looking at everything, the whole picture, and just trying to help her beat all of this instead of treating parts at a time?

This morning I did a quick simple google search. I typed in Renal Cancer and Colon Cancer. The first article that popped up was of a Mayo clinic study done between 1970-2000 (in which time my Mom was a patient), published in 2006 (6 years ago!!!)

RESULTS Of the patients studied 2,188 (80.4%) had clear cell, 378 (13.9%) had papillary and 128 (4.7%) had chromophobe renal cell carcinoma. Patients with papillary renal cell carcinoma were significantly more likely to have colon cancer (p = 0.041), prostate cancer (p = 0.003), any second malignancy (p <0.001) and multiple malignancies (p <0.001) compared with patients with clear cell renal cell carcinoma. In addition, patients with chromophobe renal cell carcinoma were significantly more likely to have colon cancer than patients with clear cell renal cell carcinoma (p = 0.020). Although patients with papillary renal cell carcinoma were more likely to have bladder cancer, the incidence did not differ significantly compared with that in patients harboring clear cell and chromophobe renal cell carcinoma (p = 0.193). We did not find a significant difference in the incidence of breast cancer, lung cancer, rectal cancer or lymphoma among histological subtypes.

Um…HELLO!!!! And when looking in more detail, none of my mother’s doctors at NIH were even a part of the study.

The conclusion of the study:

Our data indicate that patients with papillary renal cell carcinoma are more likely to harbor secondary malignancies, including colon and prostate cancer, than patients with clear cell renal cell carcinoma. These results may have important implications for patient education and followup evaluation, and they should prompt mechanistic investigations.

This was published in 2000, by one of the Mayo Clinic’s cancer research teams, published and easily found in the US National Library of Medicine, National Institutes of Health. My Mom has been a patient at NIH since 1998. So, why were her doctors never on the lookout for this?

As a non-medical family member, not educated in Oncology, how on earth do you even know what questions to ask or what to point out to the doctors. Why are so many doctors not looking out for the possibilities of what may for their patients?

This all goes back to the idea of if you know what questions to ask, if you direct the doctors in the right direction, then possibly they may find the right solutions. I have asked her doctors questions in the past, but mostly the answers are very short, to the point and I am handed off to a nurse. It seems that many don’t like to be questioned and patronizing.

Where is Dr. House when you need him and his very curious team? Why can’t all teams fight like his group of wonderful actors? Where is the list of questions all of us should have on hand when we go to the doctors with loved ones?

How do you ask questions if you have no idea what to ask?

I guess my next steps are going to be to try to contact these doctors at the Mayo Clinic and see how they treated their patients.

 

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