Another Option for Breast Cancer
Since I wrote this article a lot has happened in American's health care (thank you Mr Obama). Dr. Peter Littrup is not preforming Cryoablations. My interventional radiologist, Dr. Jason Williams of Gulf Shores, AL has had to move his Ablation practice to Mexico City. Therefore the contact information in the article is no longer accurate. To reach his assistant Angie in Foley, AL the contact number is now 251-979-1611. I will have further information as to cost etc. of going to Mexico for the procedure as soon as I can. Current contact information is : www.cancerablation.com
Weekdays / 8:00AM–5:00PM CST
Phone: 844-359-4201 / Fax: 251-943-9724
111 W Myrtle Ave, Suite 1
Foley, AL 36535
4800 N. Federal Hwy, Ste B306,
Boca Raton, FL 33431
. Also at the bottom of the article is a study being done in L.A. with all the contact information. It's the next stage where the cryo isn't followed up with surgery etc. just a 5 year follow-up and hormonal therapy.
On November 5th 2012, I went for my annual mammogram. A week later I received a letter in the mail that said my, “mammogram was normal”, and they’d see me next year. My excellent family doctor always forwards me the clinical report sent to her. The first line of the clinical report stated, “Parenchymal (the anatomy) pattern is heterogeneously (consisting of dissimilar elements or parts) dense (crowded closely and hard to penetrate)”. Which translates to, “Your breast tissue is too thick for us to see anything meaningful.”
A personal or family history of cancer, a personal history of benign breast conditions like atypical hyperplasia(when an overproduction of normal-looking cells stack upon one another and begin to take on an abnormal appearance), dense breasts, menstrual periods before age 12 or after age 55, not having a child before age 30, postmenopausal hormone- replacement therapy, obesity, excessive alcohol consumption, smoking, or genetic susceptibility are factors which put a woman into a higher risk category for breast cancer.
I fall into four of these factors so I knew mammography wasn’t enough. For years I followed it with an Ultrasound, but when contrast MRIs became available I went with that. Last years’ MRI was clear so I expected a similar report this year. On December 19th 2012, that’s not what I got. The Radiologist came in a few minutes after the imaging was done and said, “There’s something in your left breast that lit up like a Christmas light.” I called my Doctor; she said that I should have an Ultrasound done to make sure it wasn’t a ghost. There can be false positives with MRIs.
Over the years I’ve had lots of “findings” in my breasts. Some were removed and some were, “let’s wait and watch it for a while”, but this one gave me a bad feeling. It wasn’t a ghost; I scheduled an Ultrasound guided biopsy.
On December 31st, the Radiologist did the biopsy. He was the same one that walked into the room at the end of the MRI. The procedure was short and relatively painless, but the New Year’s long weekend delayed the results. Now it was a waiting game.
The following week I went to my Doctor’s office to get a flu shot. She must have heard me talking to her staff. She came out and immediately hugged me. “It’s not good news”, she quietly said to me. Because of the long weekend and because she knew I would be worried, she had been calling the pathologist to get a verbal result. One in five women has two cancers simultaneously. I had won the cancer lottery. I had both Invasive ductal carcinoma Her 2/neu (grade 2) and DCIS (Ductal Carcinoma in Situ) highly Progesterone and Estrogen positive (grade 2). Because of the aggressiveness of the Invasive Her2/neu, I knew I had a 30 day window from the biopsy to be treated. I had already lost a week waiting for the pathology report. She took me into her office and dialed the Oncologist. “See the surgeon first”, he said.
I spent hours on line for the next two days appalled by the “Golden Standard” of breast cancer treatment. It seems that in the last 40 years all they offered was variations of surgery, chemo, and radiation. It was more targeted, but still slice, dice, poison and burn. It was depressing. I started to look at alternate treatments and found a great deal of gene therapy possibilities. The only problem was that I would be years and maybe never that these therapies would be available. I needed to think outside the box. I started looking at how they were treating other cancers. It was at that point that I started reading articles about Ablation Therapy. Most were studies comparing Microwave or Radiofrequency ablation with Cryoablation. These studies led me to animal studies, going back to the 90’s.
Looking for a place that performed this technique for breast cancer was difficult, but after a search on the National Cancer Institute (NCI) ongoing studies, I found that they were sponsoring a five year twenty hospital ACOSOG (American College of Surgeons Oncology Group) study titled, “A Phase II trial exploring the success of Cryoablation Therapy in the treatment of Invasive breast cancer.” The hospital doing the trial was two hours away. I called them immediately.
The Study nurse was wonderful. She emailed me the study info and consent forms. I spent the next three days feeling like I was one of the “Keystone Cops”. Jumping in and out of my car and running around in circles collecting copies of imaging DVD’s and reports to UPS to the Doctors doing the study. The big stumbling block was the pathologist who did the biopsy. She refused to give percentages on the two cancers. The study was investigating the use of cryoablation for “Invasive” cancer so the strict guidelines didn’t allow for more than 24% percent of DCIS, the second cancer that I had. I assumed that if an NCI study was requesting it, it was common practice to provide this info. She wouldn’t budge. I had to pick up the slides, UPS them to the study hospital and pay another pathologist to redo the report with percentages so that I could be considered for the study. More time wasted.
At this point you must be wondering why I so wanted this particular treatment. It’s always important to ask the right questions when it comes to treatment options in all medical issues but especially in serious illness. The question in this case was not “Why is this happening to me”, but “Why is my immune system not recognizing the cancer and destroying it?” The best lay explanation I found was in an article published in the daily mail titled, “Cancer cells hide immune invisibility cloak”.
Researchers in Canada found that spreading tumors can evade the immune system by remodeling their DNA “packaging”. The genetic code within each cell is held within “chromatin”, a coiled structure made from strands of DNA wrapped around proteins. Because of “chromatin”, more than a meter of DNA can be squeezed inside a cell nucleus. Recently scientists have learned that the chromatin proteins, called “histones, possess a code of their own which can influence control of genes. Professor Wilfred Jeffries and colleagues at the University of British Columbia found that some cancer cells have the ability to alter this “Histone code”. By doing so they remove the molecular “tags” on cells that the immune system relies on to recognize cancer. Without these tags, cancer cells are invisible to the immune system and can multiply and spread with impunity.
Two days later I got my answer from the ACOSOG study. It was a no. My DCIS was 25% of the tumor. I had lost out by 1%. One of my dearest friends, a doctor herself was outraged. She told me they can’t know the exact percentage of the tumor from 4 micro slices on one spot of the tumor. But I had no time to dwell on it. My 30 day clock was tick, tick, ticking. It was January 16th and I was 17 days into the countdown.
I started making phone calls and burnt out three house phone batteries trying to find someone, anyone in the Midwest who would treat me. There was a lot of ablation available for colon, lung, skin, liver, bone, adrenal, kidney, pancreas, abdominal, gynecological and prostate cancers. It’s also offered for corrections of irregular heartbeats and breast fibroadenomas (benign tumors) with great success rates, but I couldn’t find anyone who would do it for breast cancer.
Because of my family history, I was looking for something that was the Holy Grail of Cancer treatments. Something that would protect me from a cancer recurrence. I found it summed up in a “Journal of Surgical Oncology” 2008; 97:485-486 by Michael S. Sable MD, University of Michigan Comprehensive Cancer Center.
Another unique feature of cryoablation that may be exploited is the immunologic response initiated by the absorption of the frozen tissue. The uptake of intact tumor antigen presenting cells and the release of proinflammatory cytokines, both of which are hallmarks of cryoablation, represent the perfect equation for initiating a tumor specific immune response. The “cryoimmunologic” response has been well documented in both preclinical and clinical investigations.
What happens in cryoablation is that the tumor and surrounding cells are rapidly frozen and defrosted twice. This makes the cancer cells explode like water balloons and the now dead cancer cell proteins fall out, many intact with their molecular “tags” now exposed to the immune system. The immune system then produces T cells and NK cells specific to your type of cancer. This is like an in body vaccination, where your immune system attacks any stray cancer cells and prevents them from getting loose causing metastasis(a complex process that involves the spread of a tumor or cancer to distant parts of the body from its original site.) or a recurrence. In this kind of procedure, any blood in the cryoed area is killed off too. There is no chance of a stray cancer cell from the cryo zone hitching a ride through the bloodstream or lymphatic fluid to another part of the body and starting the process all over again.
Another important issue for many women is that this procedure lets you keep your breasts intact and does not cause the cratered look of a breast after lumpectomy. I was running out of ideas. “Please G-d”, I prayed, “You are the healer. Help me find the right person to treat me.” Then out of nowhere I got this crazy idea. I’d spent hours and days researching on medical data bases and had gotten a lot of info on cryoablation. There was all this research that was being done, but if I couldn’t find the treating Doctors, maybe I thought, I can find them through their patients.
I went on YouTube, typed in “breast cancer, cryoablation”. The first two videos were ads. The next two were the two IR* Doctors who have been doing this since 2004.
Dr. Peter Littrup
KARMANOS CANCER INSTITUTE
4100 John R St
Detroit, MI 48201
www.karmanos.org/ (to request an appointment)
Dr. Jason Williams
PRECISION IMAGING/AMERICAN CRYO ABLATION CENTER
1680 West 2nd Street
Gulf Shores, AL 36542
I couldn’t believe it, I contacted them both. It’s easy when you have names and locations, easy to check references and reviews. I got an instant response from Dr. Williams’ assistant. He told me to UPS all my medical records and imaging DVD’s. He promised me Dr. Williams would give me an answer within 48 hours of receiving the material. Two days later I got my call back. After a 50 minute discussion, he accepted me as a patient. I hung up and immediately booked my flight, hotel and a rent-a-car. Four days later my husband and I flew down. It was Monday January 21st, 22 days into my countdown and I had the procedure done the next day.
Interventional radiology (abbreviated IR or VIR for Vascular and Interventional Radiology, also referred to as Surgical Radiology) is a medical subspecialty of radiology which utilizes minimally-invasive image-guided procedures to diagnose and treat diseases in nearly every organ system. The concept behind interventional radiology is to diagnose and treat patients using the least invasive techniques currently available in order to minimize risk to the patient and improve health outcomes.
As the inventors of angioplasty and the catheter-delivered stent, interventional radiologists pioneered modern minimally-invasive medicine. Using X-rays, CT, ultrasound, MRI, and other imaging modalities, interventional radiologists obtain images which are then used to direct interventional instruments throughout the body. These procedures are usually performed using needles and narrow tubes called cathers, rather than by making large incisions into the body as in traditional surgery.
Many conditions that once required surgery can now be treated non-surgically by interventional radiologists. By minimizing the physical trauma to the patient, peripheral interventions can reduce infection rates and recovery time, as well as shorten hospital stays.
Now for the personal Story
I told no one that I had been diagnosed except my immediate family and my Rabbi because I wanted him to put me on the Mishebayrach list. I wanted time to research and make decisions as to what would be my next step. I knew that if word got out, I would be fielding concerned phone calls from the community all day and I didn’t have the time. I needed to stay focused and pushed down my emotions; I would deal with them later. I compartmentalized my life and tried to act as normally as possible with my family and friends.
By the first consult with my surgeon January 9th I had done quite a bit of research and brought the ACOSOG study with me. I showed it to him and expected him to try to talk me out of it. Instead he encouraged me to go for it. He also agreed to be my backup in case I didn’t make it into the study. Well I didn’t make it into the study but was determined to follow the ACOSOG protocol for my cancer anyway.
My Rabbi, Rabbi Kalmar and his wife Jessica called me regularly to check up on me and to know if I needed anything. He wanted to know when he could quietly tell people what was going on. It was decided that an email would be sent out for a community wide Tehillim the night before the procedure. And then I found myself on a plane with my husband headed towards Pensacola FL, the closest airport to Gulf Shores AL.
We left Milwaukee at the start of what was to be the coldest week in 3 years and were headed to someplace warm. My daughter-in-law Yaffa made me laugh saying, “look on the bright side it will be a vacation for you and Abba, a romantic getaway with warm weather and a beach.”
Pensacola was disappointing. The part we drove though was a Navy town and it had seen better days. I was a little concerned that this is where the doctor was located. As it turns out the scenery changed completely when we crossed the border into Alabama, beautiful white sand beaches with expensive homes and condominiums. I was a relieved. It took an hour and 20 minutes to get to Gulf Shores and to get to our hotel. Dr. Williams has a discount arrangement with two hotels in the area for patients coming in from out of town. One is the Holiday Inn Express (251-948-6191) next to his clinic and the other is 5 minutes away. It’s called the Staybridge Suites (251-975-1030). It was beautiful; it had a living room with eating area and an office area. The office area had a desk with all the ports so that my husband could set up a little office for himself. There was a separate bedroom with two queen size beds and most importantly it had a kitchen with a full sized fridge. This was very important to us as there were no kosher restaurants in the city and no shuls. If there were any Jews around us we certainly didn’t spot them while we were there. There was a Publix grocery store though down the street that had Empire Chicken and Meal Mart Meat and a Super Target next door where I bought an inexpensive crock pot and we were set. In the hotel they served breakfast every morning where we were able to get coffee, fruit and yogurt as part of the package. It was a relief that food wasn’t a problem. I prepared crock pot chicken for the next day so that when we got back from the clinic Ben and maybe I would have a good meal waiting for us.
My appointment the next day was scheduled for 12:15 pm. The Clinic was a villa on the outside and decorated like a spa on the inside. This was the first time I have ever experienced a place that encapsulated the concept of Boutique medicine. All the staff was dressed in matching dark blue uniforms. You couldn’t really tell off the bat who was medical staff and who was office staff.
My consult with Dr. Williams went well. He spent about an hour examining me, explaining the procedure and answering our questions. He was warm, totally focused and prepared for all my questions as we discussed what was coming next. He wanted to lightly sedate me for it but I asked him not to. My personal experience with anesthesia is that it makes me feel more ill than the procedure. We agreed to start me off with an IV and I could at any time during the procedure request pain relief if I needed it. I changed and proceeded to a large room. There was a surgical table and I climbed on it. The staff was very professional but laid back and warm. There was an Ultrasound technician and her sidekick. Also there was the Nurse who inserted and would monitor my IV and vital signs. His job included the administration of anesthesia should I need it. Another person monitored the cryo equipment and of course the Doctor. There were 5 people in the room besides myself.
I raised my left arm over my head and the Ultrasound tech mapped my breast. When that was done sterilization came next. I turned my head to the side and saw that the word Galil was logoed on the cryo machines. “Where are those from?” I asked the doctor. “They’re made in Israel”, he said. “Why are you using them instead of the Sanarus?” I asked him. “I like them better because the cryoprobe needle is thinner and I can get two into a smaller tumor”, he said. He injected me with a local and then inserted the cryo needles like chopsticks into the tumor. I barely felt it, just a very slight tugging. “Why are you using two needles?” I asked. “I can get a much larger ice ball with two. I sometimes we use three with a larger tumor,” he answered. I spent the rest of the procedure watching the screen as the ice balls formed around my tumor. It took a long time, over an hour for the ice ball to reach maximum size. It measured 4.6 by 2.7 cm. As the ice ball grew past 2.5 cm I started to feel a little burning and pinching sensation. Nothing I needed anesthesia for but to tell you the truth it was my shoulder that was aching by the end of the procedure. We waited eight minutes and then went through a six minute defrost cycle. The whole thing was then repeated, and in two and a half hours it was done. He finished the procedure with a shot of Interferon into the now dead cancer. “This is a record”, he told me. “It’s the fastest it’s ever gone. Usually it takes four hours.” On the screen my tumor had gone from black to a grayish white.
I knew then why I wasn’t accepted into the ACOSOG study. This was the place G-d had intended me to be. Thank you Hashem I thought.
Medicine is part science and part art. I was guided to a Doctor who was experienced, innovative, an excellent technician and an Artist. I didn’t intend to say it out loud, but when I saw the transformation on the screen I said, “Bye Bye Cancer”. The medical staff smiled.
I would say that the discomfort level for the entire procedure was a 2 ½ out of 10. He told me that the breast would swell up and I might need some pain meds for tonight. I thanked him and said no thanks. At 5:30 pm they let me go back to my hotel. I took two extra strength Tylenol tablets prophylactically and iced the area. It was the first time that I was really able to enjoy my dinner in three weeks. By 10:00 pm the slight stinging was gone and I went to sleep. The weight of all that worry was off my shoulders.
The next morning I woke up feeling terrible. My joints ached, my head hurt. I felt like I had come down with the flu. At my follow up appointment, Dr. Williams asked how I was feeling. I told him the truth, “terrible”. He was happy to hear it. “It means the interferon has triggered your immune system.” I went back to the hotel and straight into bed.
We could have really left Gulf Shores late Thursday night. But there were no flights to Milwaukee at that point. Shabbat comes in so early this time of year and that meant that we would have to leave for the airport Friday morning by 5 am to be in Pensacola on time. There was no way I was able to do that. We spent Shabbat in our hotel room, talking, reading, opening the windows wide and letting in the sunshine and the warm air. It was a cathartic Shabbat for me. I finally had some time to take a mental evaluation of myself, to admit to myself how scared I was, how mad I was and to digest the events of the past three weeks. I needed some crying time and to again admit to myself, (as if I didn’t already know), how fragile life is. Like many who have been tried by cancer I was asking myself, “How was this going to change me? What was I going to take away from this experience?” Late Sunday night we were home.
One week after the Cryo I went in for blood work. My results show that my immune system is triggered and working to fight the now dead cancer “infection”. I also had a post-cryo MRI with contrast. The report said, “Following contrast administration, dynamic subtraction images demonstrate a typical post-cryoablation ‘blackhole’ with a halo noted which surrounds the cryoablation. There is no evidence for residual or recurrent neoplasm (an abnormal mass of tissue from abnormal proliferation of cells) currently”. Translation: No more tumor.
Continuing to follow the guidelines of the ACOSOG study protocol the next step was a lumpectomy with a sentinel node check on day 28 after the cryo. After speaking with my surgeon and noting that the cryoed area went way past the margins of what he would have removed (thanks to the two needle process), we skipped the lumpectomy. After all I didn’t make the study and there was no need to examine the tumor remains for posterity. All that was left to do was a sentinel node biopsy to make sure there was no micro-metastasis in them. (Lymph nodes are the filters along the Lymphatic channels. Their job is to filter out and trap bacteria, viruses, cancer cells, and other unwanted substances, and to make sure they are safely eliminated from the body). We scheduled it for January 20th.
Micrometastasis is a small collection of cancer cells that have been shed from the original tumor and spread to another part of the body. They can not be seen with any imaging tests such as mammography, MRI, ultrasound, PET, or CT scans. These migrant cancer cells may group together and form a second tumor, which is so small that it can only be seen under a microscope.
Ben and I arrived at the hospital at 5:30 am. The intake procedure took about an hour. The nurse was confused as to why I was there for only for a node check and why I wasn’t having a lumpectomy. She went to call the surgeon to ask how she should proceed. Then I was taken to Nuclear Medicine and the doctor there did the radioactive tracer prep to find the sentinel nodes. It stung more than I expected and the Doctor told me my nodes weren’t in the usual place. Then he also sent out a call to the surgeon. He needed to speak to him too.
When I was done in nuclear medicine. We walked up to the operating room area and I got onto a gurney. The surgeon came in and spoke to me and then the anesthesiologist. Next I was rolled into the surgical bay. Then nothing until I woke up. The surgeon spoke to my husband while I was in recovery and told him that Dr. Williams had done a good job and that I would be getting the pathology report on the sentinel nodes by Friday or Monday.
The reason I titled this article “Another Option” and not “A New Option”, is that this procedure is not new. It has been available for the past 20 years and Dr. Williams told me he thought it would take off ten years ago. In my opinion it’s hasn’t for two reasons.
1. The “Golden Standard”, of breast cancer treatment should be renamed the “Golden Goose Standard”, of breast cancer treatment. The tab a woman runs up for this treatment is extraordinary. Average cost for Surgery run from $15,000 to $50,000 for Mastectomy, $17,000 to $35,000 for Lumpectomy. Chemo depending on the mixtures, runs from $10,000 to $120,000 or more. And Radiation cost from $20,000 to $35,000 depending on how many days they treat you (the average is 6 ½ weeks, daily). I won’t even go into the cost of reconstructive surgeries or costs of treating Lymphedema but there seems to me to be a financial disincentive to move to cryoablation. With 217,000 new cases of breast cancer every year in the USA and so much money being involved, there’s not a big push to change things; especially with insurance paying most of the bill. There’s not a lot of money to be made with cryoablation.
When I asked Dr. Williams why cryoablation for breast cancer wasn’t readily available everywhere. He told me that the Oncology community won’t support something like this until they’ve seen enough studies. They’d like to see thousands of women treated and reported on with cryoablation. “That’s crazy” I told him because in the five year ACOSOG study which ends March 2013, I was going to be number 78 of 99 women nationally. Until more women receive this treatment it’s still considered experimental and the probability is, that your insurance company won’t pay for it (even if they do for almost every other ablation). This is crazy on their part too. They are shelling out between $150,000 to $200,000 on average, for every case. They could be saving a lot of money, especially on women diagnosed early, using this technique. My cost (not including airfare, rent-a-car and Hotel) was $25,000. It sounds like a lot of money but that’s about the cost of buying a car, affordable if necessary for most people. In all likelihood, my long term out of pocket expenses for what would have been the average eight months of treatments, under my current insurance plan, would have cost me more with the standard protocol.
2. Doctors like most people are a products of their education and life experiences. They tend to specialize in their area of expertise and interests. Even the magazines they subscribe to and the conferences they go to tend to focus on their specialties. They don’t delve much into many other medical specialties. I belong to a Synagogue populated by many doctors, also there are many doctors in my community. Those that spoke to me about this almost without exception asked me, “How come I’ve never heard of this treatment for breast cancer before”?
The End and Beginning of the Story
I got the voicemail from my surgeon when I turned on my phone after Shabbat. It was Purim night and I was distracted and a little unfocused while listening to my messages. There it was, my surgeon had called me back with my results. It was only a 21 second message. I had to play it back, to focus on what it said, it was short and sweet. “Hi Sara this is Dr. Cattey. I wanted to give you the final pathology report. Both nodes were negative......”
I had dodged the bullet. No surgery, no chemo, no radiation. Wow,I felt totally humbled. Like the Jews whose lives were saved in the time of the Purim Story where it states, “...they gained relief on the fourteenth day, making it a day of feasting and gladness.”” (Esther 9:17).
Though I had done my due diligence and had certainly benefited from a sprinkling of divine providence. Two of the most important factors in my positive outcome was early detection through a breast coil MRI with contrast and finding Dr Williams. If you have the risk factors mentioned at the beginning of this article, push your doctor into providing you with it yearly. You might have to jump through some hoops with your insurance company or find another doctor to advocate for you, but do it! I needed a second MRI about a week after the cryo. At the facility I usually go to, the cost was $3,700. With the help of my doctor and by shopping around I found a smaller facility in a smaller town outside Milwaukee that charged me (cash up front) $650 for the same procedure.
Guidelines Protocols and Patient Candidates
When I asked Dr. Williams what he is looking for as a good candidate for this procedure, he sent me the following.
“As for potential patients, it is certainly best if the tumor is less than 4 cm, but I will tell you, sometimes we treat larger. Often these are patients that we are trying to decrease the size of the tumor prior to surgery.
The ideal patient does not have evidence of lymph node involvement. Generally I tell patients to send me their scans, mammos etc so that I can review it and give my opinion on if they are a good candidate or not.”
When diagnosed with cancer it is hard to breath let alone think. You tend to get herded into treatment quickly. I hope this will help. Although it was impossible for me in this format to provide comprehensive references, I want to at least provide a springboard for you to do your own research and also provide you with something to bring along to your own doctor to see if you are a candidate for another option.
MRIs Emerging Role in Breast Cancer Screening
Since I wrote this article, the results of the ACOSOG study have been presented.
Cryoablation Shows Promise as a Non-Surgical Alternative Treatment for Early Stage Breast Cancer. You should take into consideration that the results they ended up with (a 69% success rate), was in my opinion limited due to the fact that they used a senorus cryo machine (made in California, that's mostly used for fibroids). It gives a 2 cm (max) diameter cryo ice ball. Dr. Williams uses a different machine made in Israel that has much thinner needles and therefore he can stick a very small (mine was .8cm) with 2 or even 3 needles to enlarge the size of the cryo ball to the size that's necessary to eliminate the tumor and any DCIS surrounding it if necessary. There is nothing that can replace skill and experience; he's been doing this since 2004.
This is a study underway for Cryo only (without surgery afterwards to check the results), in Los Angeles.