RT...Questions To Ask About PVNS Radiation Therapy

Questions To Ask Your Radiology Oncologist

1.   Why is radiation a good or poor choice for me?
2.   How many PVNS patients have you treated?
3.   What are my chances of recurrance with or without radiation treatment? 
4.   How does radiation effect the PVNS and healthy cells in my joint? 
5.   What dose of radiation will you be using and how/why did you select that dose?
6.   How often and how long will I receive radiation treatment?
7.   What are the chances that radiation will cause a secondary cancer?
8.   Will the dose of radiation have any effect on fertility?
9.   What kind of side effects will I experience during the treatment?  Fatigue, etc
10.   What is the process for setting me up for radiation and how long will it take?
11.   Will I need a post surgical MRI or CAT scan?
12.   What is mapping and will my surgeon be participating it?
13.   If I have radiation now will I be able to have the same joint radiated in the future?
14.   What is your follow up care plan?
15.   Is there anything that I can do to reduce adhesions from forming?
16.   How much will my treatment cost and do you participate with my insurance?
17.   What is the best time of day to schedule my appointments to avoid long waits?
18.   If I experience treatment complications who do I call and who handles it?
19.   How will my joint be immobilized to prevent movement during treatment?
20. I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Radiation Post TKR

Recently there was a question asked if you can have radiation treatment after a TKR? My orthopedic oncologist said that you can have radiation treatment after a TKR. She said generally they would do it to control symptoms vs controlling the disease because their isn't as much of a natural joint that the pvns can harm. The other question posted was “ how can pvns return after a TKR?” During a TKR they don't take out the entire joint capsule (synovial tissue) because you still need it so your joint will function. There is still a possibility that PVNS could be in the remaining tissues but the chances are reduced.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Radiation, Recurrence Update

Stats on external radiation are looking good and decreasing recurrance to 15-20% vs 45% in diffuse pvns. That is why an increasing amount of physicians are utilizing it early on in pvns treatment. We know from the stats on malignant tumors the area that the radiation actually dose hits will sterilize the cells so they can't reproduce, but then again treatment is only as good as the mapping and dosage which is not only a science but an art. Radiation does not come without it's own risks and consequences. 

In my case I over healed and had to be knocked out again for a manipulation to break up the adhesions. It now feels like there is a tight band around my knee and it stiffens easily. In all fairness you can get the same thing from just having an open synovectomy like I had, so I'm not sure how I would feel if I didn't have radiation. Radiation also increases recovery time, for me it was 6 weeks before I had my normal energy level and it did add onto physical therapy time. The tab for my RT was $26,000 thank goodness for insurance but I still had copays.

The surgeon and I again discussed that it was a right decision to get RT in my case since it was diffuse throughout my knee combined with my past medical history. They removed all pvns that showed in the mri and all that was visible, but it's impossible to get out the microscopic cells. Unfortunately it looks like there are now new areas of pvns. She isn't convinced that it is pvns on the tendons and if it is the only thing that they could do is graft a new tendon into the knee which would cause more problems then the pvns at this stage. Another new area that it is showing is almost into the muscle which it won't damage the joint. There are other areas that are probably pvns and time will tell. My joint is still good but in my case it looks like the pvns may acting very very aggressive.  So yes RT was a wise decision in my case. My next mri is in 3 months. Hind site is 20/20. The dice could have just as easily rolled the opposite way and I would never know if I caused unnecessary damage to my knee. Everything is a roll of the dice when making treatment decisions about pvns. Remember certain effects from radiation and chemo can not be reversed.

Update: 08/2014 I'm now approaching three years of being PVNS Free. 


(During 12/14/2012 surgery discovered pvns had not recurred and the mri was showing scar tissue)

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Radiation Therapy: Do your research

All I can say is to do your research, remember that each case is different and there aren’t any absolute right or wrong ways to go with treatment. I had my first knee synovectomy for diffuse on 12/14/11. Two months later I had 18 treatments of 200 greys each. radio-oncologist told me RT will decrease recurrence from 40+% down to 15-20%. In her opinion RT in this region will not have any effect on fertility but there is a very small chance of forming a secondary cancer at a later date at the radiated site. The risk was explained to me like this; I have a greater risk of having a life threatening reaction to anesthesia from repeat surgeries than to forming a secondary cancer from RT. I should note that as far as the doctors that I've spoken with and my own research there has never been a reported case of malignant pvns post radiation treatment.  My surgeon and radio-oncologist worked together to map the radiation. Radiation tends to cause scar tissue to form (so keep the joint moving to break it up) and it will most likely make you temporarily very fatigued. My personal opinion is that you will gain more benefits from RT if it is given prior to severe damage from the pvns and multiple surgeries. 

Nodular pvns is more easily contained vs diffuse. Even after the best surgeon has performed a synovectomy on diffuse pvns...there are still microscopic pvns cells that remain. It only takes one of these cells to seed the tumor and get it growing again. This is why radiation treatment is given. The radiation sterilizes the remaining cells so they are unable to reproduce. With that said there is still a chance that the radiation may not hit every last pvns cell. Mapping decides with pin point accuracy exactly what area will be irradiated. If the mapping or actual delivery of the radiation treatment is not exact then a pvns cell can be missed and those cells can reseed the tumor (just like with cancer). Radiation does work but it's only as good as the mapping and delivery of treatment. Even if all of the pvns cells are killed they could return.....there was a reason why they were formed in the first place. Having RT extended my rehab time and has cost me additional time off of work. 

There are risks to every treatment and procedure and it is up to you to determine what you are willing to risk and what kind of treatment that you can afford.  My orthopedic oncologist keeps up to date on the latest research of pvns and recently said “ There isn’t any one type of treatment or surgical approach that stands out as the correct way to treat pvns” They used to have people wait for recurrences before they would administer radiation treatment but now that is changing. They are seeing peoples joints being totally destroyed not only due to the pvns but the damage caused by repeated surgeries. 

The problem with monitoring PVNS is that in some people it grows rapidly and others very slow  with no way of knowing how it's going to react in your system. Note: After surgery scar tissue makes reading MRIs more difficult and can easily be misinterpreted as a recurrence so caution must be taken.  Everyones personal and physical condition differs so please take the time to do your research to find the best options for your situation. I wish you the best. 

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional to determine your individual risk factors. 

PVNS Radiation Treatment 9

The radiation treatment is becoming more difficult with each session because the damage that it causes is cumulative. I've ceased making progress with my physical therapy and range of motion because of all the swelling caused by radiation. I'm walking faster but much more still then I was at one week out of surgery.  There is a slight burning sensation inside of my knee and on the skin. The swelling is causing much pain that feels like a vice grip is tightening every time I bend my knee. The level of pain has been a steady 3-4 and the fatigue is horrible. You may ask is it worth it. I believe that I am very fortunate to have a husband that says take care of your health first and concentrate on getting better. He knows I am anxious to return to work. Yes it is worth having my chances of recurrance drop from nearly 59% to 10%.     Everything has it's risks but each individual needs to access them and apply the risks to their own situation.