The Plan & How to Help

written by Rachel

The past two months have been filled with 8 doctors appointments, 6 imaging scans, a biopsy, and a boatload of anxiety. As stressful as it has been for Joe and our family, careful planning and having an accurate diagnosis were critical to ensuring treatment is approached in a manner that balances risk and reward to ensure the best possible long-term outcome.

Plan A

There are several types and subtypes of kidney cancer . If Joe’s cancer had been the most common type of renal carcinoma - clear cell renal cell carcinoma (ccRCC) - there would have been a higher likelihood that immunotherapy would have been successful in reducing the size of the kidney tumor and reducing (or possibly eliminating) the cancer in the lymph nodes prior to surgery. Joe would have still needed surgery eventually because that kidney is no longer functioning, but by reducing the size of the tumor and lymph nodes it would have made the surgery less risky overall.

Unfortunately, this is why we were not able to proceed with Plan A:

As Joe discussed in his past post, the pathology report from the biopsy revealed that his type of cancer is not the common ccRCC type. There was suspicion it may have been a rare subtype called translocation renal cell carcinoma (tRCC) , which is why the biopsy was sent to Mayo Clinic for further analyses (FISH and immunohistochemistry). The results of the pathology report from Mayo indicated that the tumor is renal cell carcinoma (RCC) but not clear cell RCC or tRCC, and they could not identify the subtype. So, it is categorized as “RCC, Not Otherwise Specified” or RCC NOS for short, and sometimes also referred to as Unclassified RCC. Basically, the pathology helped us to identify what it is not, rather than what it is.

This makes planning for cancer treatments more of an art and less of a science because there is very little data available regarding proven treatments for RCC NOS subtype (note: this does not mean that immunotherapy or other treatments won’t work, just that there is not enough data from large-scale clinical studies to confidentially determine which treatments will/will not work for RCC NOS). It’s also important to keep in mind this is all based off of a single biopsy and biopsies can be inaccurate for a variety of reasons. Once the kidney and lymph nodes are removed, samples will again be sent for pathology and will provide a more accurate assessment regarding the type/subtype of cancer, staging, and nuclear grade.

There were a few other ‘good’ things the pathology report showed us that are worth mentioning: there are no sarcomatoid features, no necrosis, and it is a nuclear grade 2 (not to be confused with the Stage 3/4 - this is different and indicates the size of the tumor and how far it has spread). Having any of these and/or a higher nuclear grade would have indicated a worse prognosis overall.

So, because Joe has this very rare unclassified subtype of RCC, it means that Plan A of doing immunotherapy first before surgery is no longer the best approach because we would be gambling on whether or not the immunotherapy would be successful.

We are on to Plan B – Surgery…

Plan B

On April 5, Joe will have an open radical nephrectomy and regional lymphadenectomy, which means full removal of the right kidney and as many of the nearby lymph nodes as possible. This will be a long surgery (4-8 hours) and is not without risk. Any surgery has risks, and Joe’s surgery will have some added risk due to the large size of the tumor and the size/location of the affected lymph nodes, with one of them being located along two major veins – the anterior abdominal aorta and inferior vena cava. That said, we are confident in his surgeon, who was a transplant surgeon prior to switching to urology. The surgeon is going to be as aggressive as possible while balancing the overall risk. The goal is to get the kidney and tumor removed, and remove as many of the affected lymph nodes as possible.

Joe will be in the hospital for 5-7 days, and will then face a long 6-8 week recovery at home. We are lucky to live near family and are so thankful to have my mom staying with us for the week while Joe is in the hospital to help take care of the kids, and Joe’s mom will stay with us a few days once he is discharged home (bonus – she’s a nurse!), and Joe’s sister will be here for the first week Joe is back home to help with the kids. Thank you!

After Joe recovers and we have the additional pathology results, we’ll consult with his oncologists to develop next steps. It may be immunotherapy to help reduce/eliminate any microscopic cancer that remains in his system, maybe a clinical trial, but it is too soon to tell what the next steps will look like.

Thank You and How to Help

Thank you to everyone who has offered help in various ways and words of encouragement. Please continue to keep Joe and our family in your thoughts!

We are very fortunate to have access to top-tier medical facilities, great health insurance, resources, understanding jobs, and an excellent family/friend support system. For these reasons, we have been reluctant to ask for additional support from extended family and friends and feel a bit…guilty?... about doing so. In a recent conversation with a close friend of mine, she helped me to see another side to it. She expressed that she feels helpless, and wants to help, but doesn’t know how to help – probably the same sense of helplessness that many of our family and friends have felt. She asked me to let her help, even if we may not need the help right now, and convinced me to give our family and friends a few suggestions of how to help.

Here are a few different ways you can help to contribute if you would like, but again, please know that your well-wishes and positive thoughts are really all we need:

You can donate to any of the following non-profit organizations to support advocacy efforts and the advancement of kidney cancer research:

Kidney Cancer CURE (KCCure)

Kidney Cancer Association

Gilda’s Club Chicago

Some have expressed interest in a meal-train, however, we will graciously pass on this offer for a variety of reasons. We aren’t yet sure what type of dietary restrictions Joe will have post-surgery, I’m a vegetarian, and the kids pretty much live off of hotdogs, pancakes, and applesauce. We fear we would end up wasting a lot of food. If you would like to donate something related to food, things like gift cards for Instacart, Marianos, or DoorDash/GrubHub would certainly be appreciated.

Finally, for those who prefer to donate the old-fashioned way, we have set up a GoFundMe for financial contributions that can go toward helping to cover insurance deductibles, co-pays, and other medical out-of-pocket expenses:

GoFundMe: https://gofund.me/5ccb3c5a

Thank you to everyone who has been supportive to Joe and our family throughout this very difficult journey.

- Rachel

P.S. I think you could tell by the writing level that the usual, less educated author did not write this post.- Joe