Success with Adjuvant PVNS Radiation Treatment, Story

Why Did I Choose To Have Adjuvant PVNS Radiation Treatment

 I had my first "open knee synovectomy" for diffuse Pigmented Villonodular Synovitis on Dec 14, 2011. My oncologist orthopedic surgeon assured me that she had removed all visible signs of the pvns - which is a very aggressive nonmalignant tumor of joints with synovial tissue such as the knees, hips, elbows, ankles etc.  She emphasized that it only takes a single PVNS cell to reseed and begin the process of tumor growth. I was uncomfortable with the variable yet high recurrence rate of up to  60%, even when all visible tumor had been excised.

I read many research studies comparing the short and long term statistics of  chemotherapy, and radiation therapy as an adjuvant treatment for diffuse pvns.  I found that I wasn't a candidate for chemotherapy due to having polyneuropathy, so the only other treatment available in my case was external radiation treatment. 

Radiology Oncologist Assessment

I constructed a {list of questions} to ask my radiology oncologist, at my consultation appointment. The answers to these questions are case specific, but the following is in general.

In my case, pvns recurrence after an open synovectomy was estimated to be in the high 40 percentile. Open synovectomy with adjuvant external radiation would reduce my recurrence rate to the mid-teen percentile. 

I was concerned about rumors of external radiation treatment dangers such as the possibility of forming a secondary cancer. I was assured by my radiology oncologist and years worth of research, that this fear was totally unfounded. There has never been a reported case of secondary cancer from PVNS radiation treatment. 

The level of risk as explained by my radiology oncologist..."you are much more likely to suffer from a serious adverse reaction to anesthesia during surgery than to experience a secondary malignancy caused by radiation treatment for pvns." There are possible complications and risks associated with all treatments, including repeated surgeries... so the risks and benefits must be carefully evaluated.

I'm neither for or against radiation or chemo in the treatment of PVNS, because they both have a place in it's treatment with their own unique risks. Recent studies are showing that they have nearly the same effectiveness. However there are additional concerns that should seriously be looked at when using a systemic drug on a disease that is confined to one joint. Unfortunately, I've found that many of the physician promoting chemotherapy agents have some type of association or financial interest in promoting chemotherapy drugs and their trials. A consultation with an oncologist or radiology oncologist will be able to provide you with a personal risk for these adjuvant treatments.

Radiation Therapy Experience

On my seventh week post synovectomy, I decided to have 18 external radiation treatments of 200 greys each, Monday - Friday for 3 1/2 weeks.  This is the normal radiation dose used by most physicians for the treatment of diffuse pvns in the knee. 

Second week of radiation treatment: I've had four treatments, flexion range of motion (ROM) 84º, extension is normal, pain 3-4 with increased activity, increasing fatigue and swelling.

Third week: I've had nine treatments, flexion ROM 84º, I'm feeling the cumulative effects, pain 3-5, slight burning sensation, vice grip feeling, heat at site, darkening of skin, swelling, fatigue is overwhelming. I had to back off on physical therapy due to the swelling interfering with proper positioning of my knee during RT delivery. Compression, elevation, ice, and medication is helping to control the side effects.  

Fourth week: I've had 14 treatments, flexion ROM 74º. I'm finding that it's a challenge to keep my attitude in check as the fatigue drains my ability to keep pace with my normal daily activities. I'm told that the fatigue will pass as my body recovers from the treatment. 

Fifth week: I've had 18 treatments and I'm now finished with radiation. Flexion ROM 81º It is now 12 weeks post op and I have physical therapy 3-4 days a week to work on increasing my ROM.

16 wk post synovectomy, 4 wks post radiation therapy and my flexion ROM has been stuck at 81 degrees for 2 wks. Prior to RT my ROM was at 84 degrees. I lost 10 degrees during RT= 74 degrees, regained 7 degrees the 1st 2 wks post RT

18 week post op my flexion ROM is stuck at 81º and I am now having  a knee manipulation under anesthesia followed up by aggressive physical therapy. This procedure worked well in breaking up scar tissue and my flexion ROM is now at 113º.

PVNS and Pain Free 15 months post synovectomy, RT, manipulation, false pvns recurrence and arthroscopy, several months of physical therapy, partial knee replacement with flexion ROM now at 118º. Normal knee flexion is 130º

In summary, I feel that I've attacked this disease as aggressively as possible, and only time will tell if my choices were worth the risks. I know that the radiation treatment damaged my knee in the sense that it caused additional scar tissue. Although, surgery also caused scar tissue. Hopefully I will remain in remission, and I'll  have MRIs done every six months and eventually yearly for the rest of my life. The partial knee replacement will make the MRIs even more difficult to read, but it was necessary since the pvns and treatments left me with painful bone on bone arthritis.  

Making The Right Decision

I will be very cautious in approaching any surgery for a possible recurrence of pvns, since I've already had one false positive recurrence on the MRI reading (scar tissue). One year after my synovectomy, I had an arthroscope which ruled out a pvns recurrence, my meniscus was repaired, and that's when they discovered that I needed a knee replacement. 

Nearly a year after making my decision to have external radiation treatment after my first synovectomy....I'm seeing a trend toward more aggressive treatment on the onset of pvns and not waiting until there has been a recurrence. I honestly don't know if this is a good thing or not. Once again only time will tell. Obviously my thoughts were to throw every weapon  at it, to kill it off on the initial assault, and so far it has worked for me. I can't say this is the right route for others because there are just too many variables in each case, and I'm not a doctor. The information that I share, are links to empirical studies, otherwise it's just my personal opinion based on my experience, and it should not be taken as medical advice. 

When I was under the impression that there was a recurrence of the pvns...I questioned whether I made right decision to be treated with radiation. However, I feel strongly that it was worth decreasing my recurrence rates by having the radiation treatment, and I would do it again. Only time will tell if I will remain in remission. One year after my open synovectomy I had a partial knee replacement.  Nearly three years later, I remain pvns and pain free, but I will never know for sure if RT has played a role in my positive outcome or not. Statistics point to yes, but there are others that have had less than satisfactory outcomes.