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.
CJ,
ReplyDeleteThank you for taking the time to Blog about your experience and research. I was diganosed with PVNS in March 2012 I was 46 years old. Its back. Saw my doctor. Having surgery next week. Follow up with radiology oncologist two week post-op.
Thanks,
Shawn
New Orleans, LA
Thank you for your comment. I'm glad that it has been helpful. When I was first diagnosed, I had difficulty finding information and I figured others were too, so I created this site.
DeleteI hope surgery went well and you're well on your way to recovery. Sorry for the delay in response, I've been Ill since the beginning of June, so I've fallen bit behind in my correspondence. If you decided to have radiation I hope that has gone well for you. Be well and happy healing.
Thanks for making this site and explaining about this rare disease. I was diagnosed with localised PVNS in left knee in March 2013. It's been 10 days since I had surgery to remove part of my knee lining, but I have several tumours at the back of the knee still to be removed at a later date.
ReplyDeleteOne thing which scares me about this disease is the alarmingly fast recurrence rate. I'm seeing time and time again, people say it came back within a year of surgery, and sometimes annually after 3-10 surgeries.
I knew there was a high risk of it returning, but had no idea it would be so fast. I was hoping it would take many many years between surgeries. This really does sound like an aggressive disease and I think RF is probably wise, even despite the risks and treatment hassles.
I have the localised form of PVNS so I'm hoping I'm lucky and mine doesn't return, but since it's the knee, as I understand it, the risk of returning is still fairly high, but not as bad as the diffused form.
Paul (42)
Worcestershire UK
Paul, thank you for your comment, and you're welcome. I've been ill, so I apologize for the delay in response. PVNS is an aggressive disease but keep in mind that most of the stories that you will find on the internet are not equally balanced with the success stories. Technically you should see a 40% diffuse recurrence/60% remission balance; lower with localized/nodular. in reality the people that don't have recurrences usually don't continue to write about their experience with pvns. So the balance of stories end up being closer to 85-90% recurrence stories vs successes/remissions.
DeleteYou are very fortunate to have the localized version which has much lower recurrence rates. It still can recur but personally I wouldn't have radiation therapy with localized pvns unless there had already been at least one recurrence. Radiation is very good, costly, but it does have risks that need to be cautiously balanced with benefits. If I had localized pvns without any recurrences, I personally would not choose radiation therapy.
Localized PVNS can return but fortunately the chances of it are much lower than diffuse. The important thing for you is to have a schedule of follow up MRI's and this timing varies per surgeon and is case specific. Secondly, I've learned to enjoy the time I'm in remission and focus forward.
As far as the PVNS I've been in remission since my first synovectomy, but even with that the pvns had destroyed my cartilage requiring a partial knee replacement. Now my knee doesn't hurt at all and there is no swelling. I also hope that pvns is behind me, and only time and monitoring will tell.
I wish you the very best in your journey and I hope that you don't have any more problems with this disease. I can also suggest a very good PVNS support group on Facebook; "PVNS IS Pants" Thank you again for your comment and I wish you wellness.