Hello everyone!

I wanted to share my experience with radiation therapy here in the US, with costs, thoughts, and questions. Just a little background...I have injury onset DD in my left hand after a cut from my ring finger across my palm to just under my index finger (14 stitches). The DD started some weeks later, with one nodule (which is now turning into a cord), leading to a total of 3 (the last of which just appeared on July 5th). My DD became really active recently with tingling, itching, aching, discomfort, and the new nodule. I had some success with enzymes last year, but this last flare up had me really worried. So, here I am in Scripps as it seems the only way to stop or slow the progression and the sooner it is done the better.

I arrived Sunday and am staying at the Del Mar Inn with the Scripps rate (thanks to the forum users who shared the information about the hotels). It is right up the road from the clinic and very easy to get to. Summer rates with Comicon and the opening of the races happening in town this week are $159/night. I was in contact with one of Dr. Tripuraneni's nurses, Susan, before my arrival. She arranged for me to be able to start treatment the same day as the simulation, so I didn't have to stay over the weekend and finish treatment the following Monday.

Biller Bob greeted me Monday morning before my scheduled simulation. He went over the billing as a self/cash pay and estimated $886 for the doctor's portion (which is 60% of the normal price) and $3,101 for the hospital portion (which is slightly over the medicare cost or 1/4 of commercial/insurance cost). I had to pay the full doctor's estimate and 1/2 of the hospital for the deposit. The remaining $1,550 will be billed and must be paid within one month from the end of treatment.

The simulation is where they prepare the "stencil" for where the electron radiation will be applied. Doctor T came in and palpated and located the nodules/cord and drew around them. He then drew a large margin around them and this would be the shape that the radiation tech would be using for my treatment later that day. She traced my hand onto a foam block and put wooden sticks to hold my fingers in place and still and then traced the markings made on my hand onto a transparency. Then, a CT scan was needed to ascertain how deep the nodules are and how deep the radiation would need to be. My cousin has been with me throughout the whole process and has been such a good support and advocate. She made sure that during the CT scan I had a lead drape that included the thyroid protection (which they were able to get from another room, but wouldn't have been used if my cousin hadn't asked).

So everyday when I go in for my treatment I put my hand on the blue foam with the little sticks and then the radiation techs line up the transparency on my hand, feel for the nodules to make sure it is in the right spot and compare it with the picture they have from the first day when my hand was marked by the doctor. Then they align the machine with the "stencil" in place, so that the light shows through and matches the transparency. They then put the bolus on top of my hand to bring the radiation to the surface. This acts as a thick skin because the machines are meant to go through the skin and with dupuytren's you want it to stay near the surface. (This is all how I understood it…I may be totally wrong…I am sharing my experience and how I took in the information) You don't need any protective covering as it is isolated to the area the light shines down on (but they do all run out pretty quickly…it makes you wonder).

My big surprise is that the treatment only lasts a minute and a half!! I don't know how long I was expecting, but thy are so efficient at getting everything set up and making it flow smoothly that I was amazed at how quickly it was all over. There are three techs there checking and double checking, who are very friendly, helpful and efficient, that by the time they hurry out and turn on the machine….1:30 minutes later it's done. I am receiving 3 Gy for 5 days and I will come back in 1 month for a follow up to see if he will recommend another round or if this will be enough.

Dr. T said I would have no side effects and that I didn't need to use the urea cream I had read about here on the forum. He almost seemed to laugh it off or roll his eyes at the idea. When I asked if I could continue to work as a server right after the treatment he said at first that I could work, but that I should take it easy for the next 2 weeks. I am hoping to meet with him again and ask for more details on that. I don't know if my body will let me know what too much is, or if I should not work at all to allow for maximum healing. It confuses me to hear that there are no side effects, and yet I should take it easy. Does anyone have any advice on this issue?

I hope this information is helpful to anyone considering RT. I welcome any comments, corrections, or advice.

Katerina,

During the first week of my RT I had a little pain in my palm. My doctor said that was to be expected because the RT is attacking and killing the DD. I was also told to take it easy between RT treatments. After the 2nd round of RT you could see the exact area that was treated because it was a little red and lasted that way for about a week. I have a little dry skin in the winter in that area to this day. I did not do anything during the treatment period that pounded or abused my hand.

Hope this helps and good luck,

Lori

Katerina,
Thanks for sharing your experience at Scripps. I also went to Scripps for LD and saw Dr. T. He does not seem to have a lot of patience for what is being said "online".
I have not returned for second round of RT yet, but I do remember being told to avoid extreme hot or cold.
Please keep us posted on your progress!
Wishing you speedy recovery!
Debbie

I use the nobbed balls doing gentle exercise and use the urea cream every evening before going to bed ! My hands are well worked, soft and gentle now and I can play piano much better than before RT.

For the feet I use changing baths for my feet with hot and cold temperature for about 10 minutes with about 1 minute at each temperature level and than change ... this improves my circulation to the feet ! Afterwards going to sleep ...

In Germany its a variation of KNEIPP foot bath practice ... Otherwise take it easy and don't think every day about feet and hands.

LARRY

Debb,
I'm sorry to hear that it's taken so long for you to see results. All the best for your healing, too.

Larry,
It's good to hear that the massage and cream have been working for you. I have been using cream, but will buy the urea cream today and hopefully find a massage ball.

Updates on my progress or regress...
My second nodule is almost totally unnoticeable. The first nodule, which has always been the largest, is less puckered and has shrunk. The last pea-like nodule is not painful to the touch anymore and is about half the size. My hand looks and feels better. I have been more tired than normal and yesterday my hand was achy. I was told that I will see improvement over the next 2-4 weeks and so far I am very happy with the improvement.

Thanks all for your time and replies. I really appreciate the forum and I've learned so much from your stories. I hope my story can help someone, too. I have pictures of the radiation process and pictures of my hand if any are interested.