Hi Everyone. I am a newbie here and am glad I found this sight. I was diagnosed about 3 years ago and turned 40 this past July. I had a small lump in the palm of my hand under my ring finger. Just thought I hurt my hand somehow. My PCP sent me to a hand doctor and he diagnosed me. He told me they basically wait, if it gets worse they first inject it with a steroid, and then if it keeps going he would do surgery. But he said do the wait and see approach.

Well recently the bump is getting larger and I think I can feel a cord now. I can still pass the hand test on the table and there is no contracture yet. But I am starting to freak out. I have been trying to read as much as I can on this disease. It seems at this stage that RT would be my best bet.

But I am scared because there are no long term studies that even show that RT works. Also it seems like all doctors have there own way of treating this.

Has anyone's hand doctor in the US actually recommended that you go for RT in the early stages? It seems like the people on this forum have to search out someone that actually does this. And usually aren't they and oncologist that does this?

I live in Massachusetts and am wondering if anyone has a hand doctor that they are really pleased with. I want to go to a doctor that is up to date with all possible treatments and not just surgery. I would like some input from them and not just try to figure this out by myself.

This sucks. Help!

Thanks,
Derek

Thanks Callie,
That made me feel better. I'm glad to hear about your dad and that sometimes no contracture happens. But I can start to feel the nodule getting bigger. So I was wondering if I should seek out RT now before, or if, contracture happens. From some of the things I read it was suggested that RT should be done before contracture occurs.

So it sounds like you opt for surgery as opposed to any of the other options? You had said you will wait until 40 degrees contracture and then get surgery.

Thanks,
Derek

Derek,

I understand the freaking out. I was so shocked when I was diagnosed that I got lost in the hand doctors office trying to find the way out, and it was a straight walk to the exit door. All the doctor said was there were no treatments until my hand contracted to the point that "I couldn't take it anymore" and then to have surgery.

I researched the data and chose RT because I felt like it was the first line of defense. My hand went from a red spot to a cord within 6 months. I was in pain, my arm ached, and I was losing the ability to grasp, type on the computer, and do minor things. Being in pain and seeing my hand change before my eyes made me feel that I was not going to be one of the lucky ones and it would stop on it's own. If I had a nodule only and it had stayed that way for months, I might have been more likely to take the wait and see route. But, since I had a cord starting and it was begining to pull down my middle finger and I could see puckering beginning to occur at the base of that middle finger, I felt like RT was worth a shot to see if it could stop the progression. The RT worked, but if it had not then I would have waited and then had NA at the appropriate time.

Unfortunately, other than from this forum in the US, I don't remember reading about anyone getting all inclusive advice about all of the treatment options from a hand doctor. I wish someone could make the decision for you. I wished someone could have made the decision for me. Unfortunatley it is your hand and only you can decide what is the appropriate treatment for you.

I recommend taking pictures of your hand on a weekly basis and documenting if it changes. If it appears to be rapidly changing (the cord appears to be getting longer, larger and beginniing to contract), new nodules, pain, loss of grip, etc.. then that should help you in deciding how to treat. RT worked for me and I have had no new growth in over 2 years. I would do it again if a nodule appeared in a new area and appeared to be rapidly growing. I feel like if starting with RT works then that is great, if it doesn't then you always have other options like Xiaflex and NA, and surgery. I personally did not want to have to deal with the problems of contraction, like not being able to hold a knife and having work related problems as in typing on a computer that I was already experencing. RT was the least intrusive, least painful, and research appeared to show it had good results.

Good luck with the decision process and ask questions. Everyone on here has had different experiences.

Lori

Edited 02/14/12 17:49

Derek,

I am in North Carolina. I live near Charlotte. I saw Dr. Crimaldi from Southeast Radiation and Oncology for RT treatment. I know Dr. Crimaldi has helped find other RT doctors in different states for forum members when they were unable to find RT doctors in their area. It took me calling about every oncologist in Charlotte before I found Dr. Crimaldi. You are lucky to have those 2 doctors names for treatment. If you are thinking of RT, give them a call. It can't hurt and you will be able to get some of your questions answered. Ask them about their treatment protocol, then get back to the forum. Also if you go the "search forum" area and type in their name or your state, you will be able to see if anyone has used them or had an opinion about them.

Good luck,

Lori

My hand doctor/specialist only did surgery originally because that was/is traditional medicine. He did many surgeries until he found out about NA. He also does Xiaflex now. He prefers the less invasive treatments. He says surgery can always be done after NA or Xiaflex, but it doesn't work the other way. He supports RT and referred me to a radiologist in SF, but I went to Scripps in San Diego since it is nearer.

My right hand progressed really fast. I had NA done first because there was some contracture then followed with RT. My left hand developed nodules in my forefinger just above the MC joint about a year ago. I have several cords in that area, too. The cords haven't gone crazy yet, but I'm watching it.

NA takes about 20 minutes and 2 days of keeping your hand elevated then Bacitracin on the punctures for a couple of weeks. Recovery is nothing, but it is an effective treatment.

Keep researching and asking questions.