Has anyone had Radio Frequency Ablation or Proton beam therapy?

Joan M
Joan M Member Posts: 409 Member
in Colorectal Cancer #1

I was diagnosed with colon cancer late February 2016 and they said it was at stage 4. 

I have been told that I cannot have surgery due to the number and location of liver tumors - I have 20 tumors which are spread through every section of my liver.  The only treatment I have had is chemo: 8 rounds of Oxaliplatin, Avastin, and 5FU, then on maintainence chemo of Xeloda and Avastin since July.  The largest liver tumor shrunk from 4.9cm to 3.3cm, the other large one went down to 1.9cm.  I also have 12 small tumors in my lungs that are under 1cm. The largest lung tumor went from 9mm to 6mm with chemo but the rest are referred to as stable.  They also did not want to do any surgery on the primary cause of cancer - a colon tumor that has now went down to what they refer to as a "mural thickening" on the sigmoid colon.

I was also told that radiation would cause too much scarring by the doctors here in Fargo and also at the Mayo Clinic in Rochester.  

Am hoping to go to MD Anderson after the holidays to see if they will do anything different for me.  I want to see if they will perform either the proton beam therapy or the radio ablation therapy to kill off these tumors.

My dream is being told that the tumors have disappeared (as I have read from others on this board), but hasn't happened yet and the shrinkage has not happened as much as I thought it would from the chemo.       

Any experience or information anyone has about either procedure would sure be appreciated! 

Thank you,

Joan

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    I have had an ablation

    I had a microwave thermal ablation on ONE 2.2 cm tumour in April 2014.  I know my case is vastly different than yours, with only one tumour to take care of. 

    I have had no evidence of disease since my ablation. So, it is working for me, thus far. 

    I am sure someone will be along soon, whose case is as severe as yours. Until then, I hope my little story of success has been somewhat helpful. 

    TRU

  • Joan M
    Joan M Member Posts: 409 Member
    edited December 2016 #3
    Thanks for the information

    When I looked it up on the internet it said that RFA is supposed to be good for those who are inoperable due to number and/or location of liver tumors.  That gives me some hope.  I do not understand why my doctors have never discussed it with me. 

    Glad to hear it worked for you!  Hope it can work for me too.

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    edited December 2016 #4
    HAI Pump Therapy

    I've had around 7 or 8 RFA's over the years in my lungs with very good success. Have you looked into HAI Pump for treatment of your liver mets? Many hospitals do not offer HAI pump therapy. Why? Who knows. Dr. Kemeny has a 61% 10 year survival rate with her patients. I can not stress enough that like all treatments, results vary. I would certainly look into this option if I were you.

    1: Dr. Nancy Kemeny from MSKCC (My oncologist for the past 12+ years) Link 1 

    2: Another video where Dr. Kemeny discusses the HAI pump Link 2

    3: AHPBA 2009 DVD 11 by medicaldtv: Special Debate: HAI Therapy for Colorectal Metastasis - Is there a Role? Debate: Pump chemotherapy has an excellent track record vs Systemic chemotherapy will suffice in almost all patients. Nancy Kemeny, MD vs. Jordan Berlin, MD Link 3

     

  • lizard44
    lizard44 Member Posts: 409 Member
    edited December 2016 #5
    I had a radiofrequency ablation

    I had one  cancerous liver tumor plus two  spots that showed up on a CT scan but didn't light up on a PET scan. I had FOLFOX plus avastin that shrank the tumor from 1.5 cm to 1 cm, then received 28 rounds of radiation plus  a 5FU pump, that shrank my rectal tumor to almost nothing but the liver tumor grew to 3 x2.4 cm.I went on 5FU plus Fusilev and Avastin, but the tumor continued to grow.  My chemo was changed to Erbitux and Irinotecan and the tumor shrank back down to  1.7 x 1.3 cm. At that point I had the ablation, and the surgeon also  zapped the two other small  spots.  I was told that the ablation works best on tumors that are less than 3cm, but  if they are larger or there are  many, sometimes  RFA  combined with embolization may work, and as PhillieG mentioned,there is also the HAI pump treatment as an option in some cases. Be sure to research and make a list of questions to ask your medical team, and make sure they take the time to answer. Best of luck in finding a treatment that works well for you.

    Grace/lizard44

     

  • Joan M
    Joan M Member Posts: 409 Member
    edited December 2016 #6
    Happy to hear RFA worked

    So glad to know that this treatment has helped those of you that had it and hope it may be a viable option for me.  I meet with my doctor in a couple of weeks so am going to talk to him about a referral for RFA.  I heard from a couple other long term survivors who had the HAI pump and RFA.  Sure hope these treatments can help me fight this disease!   

  • John23
    John23 Member Posts: 2,122 Member
    #7
    Joan;

    Joan;

    You would want to get an appointment with an Interventional Radiologist, since that is the profession that provides the most use of that technology.

    I was made aware of Radio Frequency Ablation (RFA), thanks to PhillieG. My wife had a cancer tumor hopefully destroyed thanks to that technology recently. Her physicians, including her Pulmonary lung specialist never mentioned RFA. Only open surgery was suggested and they made referrals for a biopsy and surgery. I suggested RFA and she asked my Interventional Radiologist about it. (I use him for my PICC and Nephrostomy lines). She cancelled her "referrals" for  biopsy and surgery and had my Doc do the Biopsy. He discussed at length regarding the RFA procedure, and she found great comfort in learning about it.

    Her procedure went as planned. Like the biopsy, it was done as an "outpatient procedure". She came home with a band-aid over the incision area; one small incision. After a few days, no band-aid or scar! Absolutely amazing technology! Especially so, when one knows what the open surgery would have been like. She was (and remains) without any pain or soreness. She just had a follow-up CT and it appears clear. Hopefully in a few months a follow-up PET will indicate the same good news. If not (the IR says), he'll just hit the area again and take care of it.

    We can all learn here at CSN; knowledge abounds!!

    And I can never stop thanking you PhillieG.

    Best of health,

    John

     

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