Sunday, November 2, 2008

Radiofrequency Ablation - RFA

When I met with my oncologist this past May and he showed me the CT report describing the growth of my lung tumors, he reminded me that I told him of a technique last year that kills tumors one by one. “Maybe it’s time to pursue that,” he said, just before panic set in. I went through my DVR recordings and found the Discovery Channel special, Living With Cancer, that I mentioned in my October 26th post. Leroy Sievers had a procedure called a radiofrequency ablation, or RFA, performed on camera, and that procedure has influenced my cancer status dramatically. There is quite a lot of information about this procedure online (a basic Google search will bring up volumes), but few patients know about it, and were it not for Leroy, I wouldn’t know about it either.

I researched and found the doctor that performed three ablations on Leroy, and I went to see him. His name is Dr. Christos Georgiades and he is at Johns Hopkins Hospital in Baltimore. At our consultation, Dr. Georgiades said that he could ablate all 8 of my tumors. My relief was indescribable. Although it may be uncommon to ablate as many as 8 tumors in any one location, he recognized that, because Adenoid Cystic Carcinoma of the Breast (ACCB) grows so slowly, RFA could be of tremendous benefit to me. The doctor I saw on TV was telling me, basically, that he could save my life – or at least prolong it for a really long time.

There was just one problem. Although most of the lesions were on the periphery of my lungs, one was right next to my aortic arch – the superhighway of my heart. In his interview with Ted Koppel, Dr. Georgiades said, “There are limitations. For example, if a part of a tumor is too close to a critical structure like the heart or a major blood vessel, we may not be able to perform this procedure.” After consulting with thoracic surgeons from two hospitals, I was told, for different reasons, that surgery to remove this tumor was not an option. And since surgeons don’t want to operate if all the cancer can’t be removed, they wished me the best of luck. But Dr. Georgiades saw a way to safely perform the ablation without risking a “catastrophic complication” with the superhighway.

On August 28th, I had my first RFA procedure. Dr. Georgiades ablated the tumor by my aorta and another one in my right lung. This was done under a live CT machine with a needle that carries very high frequency electricity and essentially burns away the tumors along with a small margin of tissue. I was under conscious sedation and I was in no pain. I was sore for a few days, but I was able to return to work quickly with almost no discomfort. It takes several months for the inflammation to recede completely, but I’m confident that this procedure was successful. On November 4th, I returned for a second procedure to kill the two remaining tumors in my right lung. Again, I was feeling almost 100% recovered after a few days, and I can’t even find the marks where the ablations occurred. I’m scheduled for a third RFA, this time on my left lung, on November 18th, after which I will only have two tumors left.

Here is what I learned since pursuing RFA as a treatment option: Interventional Radiology (IR) is a new field of cancer treatment that offers RFA for tumors in the lungs, liver, bones and kidneys, as long as they are smaller than 3 or 4 cm. This procedure can be a life saving option, especially for patients who cannot have surgery. In addition to RFA, interventional radiology offers a number of minimally invasive techniques that have the potential to change the face of cancer treatment in the next few decades. It’s important to find an interventional radiologist who has done this a lot and knows the techniques well. Often these doctors are not marketed by their hospitals very well, so patients may need to do some research to find them. Some insurance companies may not cover IR techniques because they are still relatively new. But I am lucky that my health insurance covers RFA procedures and that Johns Hopkins accepts my insurance, which is Aetna.

After many tests and scans, I’ve been told that the lung tumors are the only detectable cancer in my body. But eliminating them doesn't eliminate metastatic disease. I still have to figure out how to curtail the metastasis and send it into dormancy. No one really knows how my cancer spreads, so this is a big project. At first I thought it was arrogant to think that I could rein in metastatic disease when my cancer only occurs in a handful of people worldwide. But as I stumbled upon various medical practitioners and scientists who not only offer their expertise, but actually listen to what I have to say and respect my choices, it doesn’t seem so crazy anymore. Dr. Georgiades is one of those people, and I’m very grateful to him and his staff.

Kathy

CANcer + HEALth = CAN HEAL

5 comments:

  1. I am 82 and have always been very active but in recent years I have suffered from arthritic spinal pain like yelping in public plus sleep was very difficult. My wife's kidney doctor told her he had read about a procedure to cut the telephone cords that tell our brain we are in pain, RFA. She did it and it worked so I had it done and I am pain free. The important point here is that our orthopedic surgeon, who was our next door neighbor, had never heard of RFA. The author of this article had to inform her doctor of a new procedure. This is a bad scene, are surgeons protecting their turf?

    George Bogdan

    ReplyDelete
  2. Absolutely, George. The answer is yes, surgeons are protecting their turf. RFA is less invasive, easier on the patient, very effective, often curative, and cheaper. The lack of awareness goes to politics and profit. I was lucky that I learned of RFA on my own, thanks to a Discovery Channel special on cancer. We are now in a world where we have to be in charge of our own health care and treatments. The days of trusting the family doctor are over, and the days of 2nd, 3rd and 4th opinions are here. In a way, it's good because there are more options, but when you're in pain, you shouldn't have to educate doctors about what they should already know about.

    I'm so glad that RFA worked for you and your wife. Thank you so much for sharing your story. Be well and pain free!
    Kathy

    ReplyDelete
  3. I am so glad for your blog and your information, Kathy! You have struggled through exactly what I have.. ACCB metastasized to the lungs (as I just found out little over a week ago). I will pursue the possibility of RFA in my locality (I'm in Ontario, Canada) and see what I find. I will let you know of progress in future. Thank you so much for your information!! God bless!

    ReplyDelete
  4. Kathy, I have posted a note on your blog already, but I don't see it yet. In any case, I have the same problem you had - ACCB metastasized to the lungs. My current oncologists are telling me I'm not a good candidate for RFA due to the number of lesions on the lung (potentially 50+). I'm wondering if in your research you have come across anything that would indicate RFA is still an option for us, even with that many tumors, since this is a slow growing cancer?
    Thanks!
    btw - I'm from Ontario, Canada

    ReplyDelete
  5. Hello Anonymous,

    I'm so sorry to hear of your lung lesions. The RFA option would depend on the size of the lesions and their location. Dr. Georgiades at Johns Hopkins in Baltimore told me that if a lesion is too close to a critical structure, as one of mine almost was (just next to the aorta), RFA would be too difficult. Also, he said that 3 cm, possibly 4 cm, is the largest that a lesion can be for RFA to be effective. If I were you, I would find out about these two factors, and have the doctor or radiologist show you the CT slides so that you can see the lesions yourself. Then I would seek out a specialist in RFA and see what they recommend. If they tell you the reason RFA can't be done is because of the number of lesions, find someone else. The number is not what's most important. If the lesions are tiny and not threatening a critical structure like the aorta or a major bronchial pathway, you are absolutely correct: the cancer is so slow growing, RFA can kill the biggest lesions as they begin to grow. I call them lesions because some of them may NOT be cancer. We all have spots on our lungs because we live in a dirty world. Because you have ACCB, everyone ASSUMES that your spots are cancer, when some of them may not be cancer at all. I still have some spots that we have been watching for this reason. I think that Dr. Georgiades may be willing to look at a CD of your CT slides and let you know his opinion of your options. I don't want to speak for him, but it's worth a phone call. The number for his patient intake center is 1-410-614-2227. Please keep me posted. I really think that RFA may be a great option for you, and I'm so very happy that you reached out to me. You can email me directly at k_seeley@comcast.net.

    Good luck and try not to worry.
    Kathy

    ReplyDelete

If you don't have a Google email account and you don't know which "profile" to choose, select the Anonymous option. If you'd like your name to appear, you may sign your comment. Thank you!