Radiation Recommended Over Surgery

Just a quick update to let you know how my consultations went at Mayo Clinic Jacksonville this week.

Yesterday (December 17) I spoke with Dr. Sanjay Bagaria (surgical oncologist).  His summary notes are below:

I explained that resection of the mass posterior to the right kidney is possible.  However, there would be considerable risk to his right kidney.  The patient has underlying Chronic Kidney Disease (CKD) and therefore the risks likely outweigh the benefits.

Though I'm somewhat surprised as to the apparent complexity of such an operation, I give him credit for at least hearing me when I said "Don't put me on dialysis, doc!"

Today (December 18) I spoke with Dr. Michael Rutenberg (radiation oncologist), who offered up the following radiation treatment options:

1. Stereotactic Body Radiation Therapy (SBRT) -- This is what MSK was offering to do years ago, though they later indicated that getting proton radiation treatment at Emory in Atlanta would be a better option for me.  The downside of this type of radiation is that it uses X-Ray radiation, which causes more "radiation splash" since the beam continues to release radiation energy beyond the target, along the entire path through the body.
2. Proton Therapy -- This is what I had done 2 years ago for my pelvic tumor at Emory in Atlanta.  This type of radiation is thought to be safer for the surrounding organs (namely my right kidney) because it stops releasing radiation energy at the target.  The downside of this radiation is that it practically takes an act of congress to get it approved!  Can I be twice lucky?

With either choice, there is still at least some risk to my right kidney.  At the same time, there is also risk if I do nothing.  Therefore, my first choice (my only choice?) is to go with Proton Therapy.

And now for the "funny" part: I'll likely end up going back to the Emory Proton Therapy Center in Atlanta to get treatment.  Why Atlanta?  Don't they have proton therapy elsewhere in Florida?  Well, Mayo Jacksonville is currently building a Proton Center, but I'm about 1 1/2 years too early for that.  Also in Jacksonville is UF Health, which has a Proton Therapy Institute.  Unfortunately, however, they are "out of network" with United Healthcare (UHC) after recent contract negations failed.  This set of circumstances effectively leaves Emory as my only viable option for proton therapy.  I for one was very happy with the results of my treatment 2 years ago, so I'm sure they would do a great job with this new tumor too.  It's fortunate for me that Myxoid Liposarcomas respond well to radiation treatment as not all sarcoma types do.

Dr Mark McDonald, Medical Director, Emory Proton Center Atlanta

In summary, all I want for Christmas is Proton Therapy!  (But I actually don't want to start it until sometime early next year.)  Please say a prayer that the folks over at UHC agree that this approach is worth the extra cost over SBRT!

New mass "Positive for malignancy"

Almost 2 years ago I started proton radiation for my main tumor in my pelvic/sacrum area.  Since that time, that main tumor has shrunk slightly and has been classified as "stable".  I think the radiation really did a number on it!

Unfortunately though, cancer is "smart" and apparently has found a home nearby that is far more hospitable than the "nuclear wasteland" of my right pelvic area.  Where, exactly, is it?  It's just behind my right kidney.  Let me show you:

It currently measures 3.5 x 2.2 cm, which is about 50% larger than it was earlier this year.  And with growth like that, you know they're going to want to do a biopsy.  To that end, I had a CT-guided core biopsy this past Friday (December 6).  The following picture is from the biopsy itself:

The results of this biopsy just came in and read as follows:

Soft Tissue, right perinephric mass, biopsy: Positive for malignancy.  Involved by myxoid liposarcoma.  No round cell component present in the submitted sample.

So, what does this mean?  What treatment is next?  Well, for one, I think it sort of implies that my current chemotherapy is not effective enough for new tumors.  Sure, it might be just enough to keep my main tumor in check, but clearly it's not doing a good job at stopping further metastasis.

As to other chemotherapy options, well I will ask, but I'm 99% sure that there are no other options.  I've already tried them all and they have either proven ineffective (over time) or were too toxic for me to tolerate.  About 2 years ago I had an opportunity to be part of a new Clinical Trial at Mayo Clinic Jacksonville but at the last minute the parameters of that trial were changed to exclude Myxoid Liposarcoma patients.  Perhaps a new trial will be starting soon, but currently I have no news on that front.

And of course there is always radiation and/or surgery.  I plan to get consults for each and will keep you informed as to what I hear.  Either way, I think my chief concern is that the radiation, surgery, and the tumor itself does not damage my right kidney!  For those who know me, I'm already diagnosed with Stage III Chronic Kidney Disease (CKD), a side effect of the AIM regimen I had back in 2008.  In other words, I don't want the treatment (or this new tumor) to push me over to dialysis.  That would truly be life-altering (and obviously not in the good way).

The one thing I'm certain of, however, is that treatment will not begin until sometime next year (January if I'm lucky).  Sure, Mayo might be able to squeak in a consult later this month*, but with the holidays here and people headed out on vacation, I'm not expecting anything substantial until next year.  And that's all fine by me too as I have my boys (who are unaware of this latest diagnosis) coming here for Christmas.  My job, therefore, is to focus on them (not me), show them a good time here in Florida, somewhat spoil them rotten, and certainly make sure they feel loved.

Word to the wise during this holiday season: cherish your health, show kindness towards others, spend time with your friends and family, hold your loved ones close, and take advantage of every opportunity life may send your way!

*UPDATE December 12, 2024: I am happy to report that I have consultations scheduled with Mayo Clinic next week to discuss both surgical and radiation options, so expect a blog update soon!

63

Today is a special day: I just turned 63 today and, coincidentally, also had my 63rd round of chemotherapy at Mayo Clinic in Jacksonville.  What a fun thing to do for a birthday, right?!?  Honestly, I don’t mind at all, especially given that this chemotherapy is what contributes to future birthdays.  A small price to pay for the greatest gift of all: life.

I know it’s been a while since I made an update, so let me just say now that my health remains fairly stable-ish.  Main tumor (in right pelvis) has been stable now for nearly 2 years. There are possibly a few other areas of concern, which are being closely monitored, but nobody (neither my oncologist nor me) is getting too excited/concerned at this point.  

I continue to work full time and travel when I can.  Holly and I just returned from the wedding of our nephew in Lake Geneva, Wisconsin.  Beautiful weather during our visit:

For me, the best part about traveling is getting to meet new people and hearing their stories.  It was great seeing family and getting to know our new extended family.

Wishing all my friends, family, and readers many more happy birthdays and future travels!

Scans Remain "Stable"

 Just had a fresh set of scans yesterday and the results are in:

• CT Abdomen/Pelvis -- Peritoneal metastatic disease does not appear significantly changed over the prior several exams. No evidence of new metastatic disease in the abdomen or pelvis.
• CT Chest -- Stable exam. No findings of thoracic metastases.

A great start to a fun weekend!  Cheers!

5 Years *NOT* NED

Although I haven't been the most diligent in updating this blog, I'm delighted to share some positive news: I'm alive, well, and today marks the 5-year anniversary since my re-diagnosis. As you may recall, doctors discovered a large metastasis in my right pelvic region during my 10-year NED (No Evidence of Disease) scans.

This revelation was a stark reminder of my previous life as a cancer patient, something I had almost completely moved on from. Shortly thereafter, I began a new chemotherapy treatment (Yondelis) and continued it for about 4 years until it became ineffective. A year ago today, I finished proton radiation therapy. Since then, I've been receiving Doxil (another chemo drug) at Mayo Clinic in Jacksonville, Florida. Originally I was getting that every 4 weeks, but due to skin complications, this was reduced to every 6 weeks. Side effects since that change have been fairly minimal -- a little nausea and fatigue here and there but generally no big deal.

I continue to be scanned quarterly, with my next set of scans coming up on January 26. Things have remained "stable" since my proton radiation and I'm optimistic that they will remain "stable" indefinitely.

Reaching this five-year milestone as a stage-4 cancer patient is indeed significant. I'm deeply grateful for every new day and find joy in staying active with new friends in our beautiful Florida neighborhood.

Wishing you all the best for a happy and healthy 2024!