RFA, Microwave ablation, or Aggressive Chemo?

rrob
rrob Member Posts: 158
edited March 2014 in Colorectal Cancer #1
I could really use some advice. I was dx'd in Oct 2007 with Stage IV cc with mets to my ovaries. I had a hysterectomy, but no resection then because the colon cancer was a surprise. One month later I had a resection for an adenocarcinoma to my small bowel. I then did 6 months of Folfox w/Avastin and remained NED for several months. For the past 1.5 years we've been watching 8 small nodules in my lungs that have been too small to even biopsy. We've tried a short period of 5FU with Avastin that didn't change anything and I started Xeloda, but stopped almost immediately to go back into the watch and wait mode. In December, I had my PET scan and at my dr visit, he said two nodes have grown minimally, with one now being at the 1 cm mark. He recommended waiting, rescanning in 4 months, and then considering chemo if there is more growth. He then said that thinking outside the box, would I like to see a radiology oncologist about the nodes since I'm clean everywhere else? I said sure, met with the ro, who said that 6 to 8 nodes is too many to treat with radiosurgery. He recommended aggressive chemo with radiosurgery followup if anything remains. That's his first choice. He did say I might be able to have Radio Frequency Ablation and then do the radiosurgery on any nodes left. So he referred me to an interventional radiologist for a consult. Man, I didn't realize how many different procedures and doctors get involved in this!

I met with the IR about the RFA on Wednesday and I'm scheduled to do either RFA or microwave ablation on Thursday, Jan. 13. He can zap 2 this time, then 2 in another month, and then 2 a month later. That would leave only 2 nodes for radiosurgery. But he also explained that he thinks I should do chemo because "even though we don't see anything anywhere else on your scans, you probably have more elsewhere." And statistics show the RFA will prolong my life 1-3 years. Well, I cried all the way home. I called my oncologist who is supposed to call me Monday. I spoke to his nurse last night and she basically said that the RFA and radiosurgery are because you don't want to do chemo. I explained that it's not that I don't want to do chemo. I want to win this fight, whatever it takes. I thought the RFA/radiosurgery was an alternative to get rid of these nodes permanently because I don't have anything showing up anywhere else.

I'm a single mom with two sons in college and I have a good job that pays the bills, but I work a lot of hours. There's no other money coming in. My ex-husband covers the boys' college expenses, so that's good. Bottom line, I have to work to pay my bills. I have no other means of support. So aggressive chemo is going to make working a lot tougher. I drive two hours a day for my job and then work 8-9 hours. In busy season, I work 10-12 hours a day. Obviously, I'll do the chemo if that's my best option. But here's my question? What if I do the RFA and nothing else shows up? Plus I can still do the chemo if something does show up later, right? What am I missing? Is it really better to do the chemo now?

Please tell me what you think because at this point, I'm probably going to cancel the RFA. But I also am more depressed than I've ever been because the message I'm getting is pretty negative. I know the odds, but they didn't expect me to live this long and I'm one of the healthiest people I know. I've got these d**n spots and that's it. I'm so tired of hearing that Stage IV terminal message...I get the message, but I could also be terminal if I get hit by a bus tomorrow! Sorry, I just needed to vent. Please let me know what you would do.

Comments

  • John23
    John23 Member Posts: 2,122 Member
    Vent away, it's good for you!

    My mother had lung cancer. Rather than attempt to treat each spot,
    they took 1/2 of her lung. She lost some more in later years.... But
    she lived for 17 years past her prognosis. And decently healthy years,
    at that!

    I'm probably way off base, since I never did chemo, radiation,
    or any of that stuff (in spite of being a 3c/4 CC victim), and I probably
    shouldn't be offering my three centavos worth....

    However - It seems to me, that when they try to "save" a cancer
    patient from losing part of an organ, or having to have an ostomy,
    they manage to create more of a problem.

    Both chemical therapy and radiation are blanketing killer agents;
    it's like nuclear carpet-bombing your front lawn to kill crabgrass.


    Oh yeah, it'll get rid of the crabgrass, but if the good grass doesn't
    grow back fast enough, the crabgrass will. And it'll take over the
    entire yard.

    If I were in your shoes, I would seek advice from surgeons specializing
    in cancer, not oncologists. Oncologists specialize in killing agents,
    with the idea that the toxins will manage to kill cancer and hopefully
    allow your body to manage to continue living. It's an interesting
    concept that has always managed to elude my comprehension, but
    not without it's merits, I'm sure (?)

    A qualified and well experienced surgeon will know what can be
    safely removed, and what shape you'll be in afterward. They trust
    in their own experience, not what some chemical manufacturer
    or radiation developer claims their product will do.

    Well....... That's "my take" on it, anyway.....


    Better health wishes to you!

    John
  • geotina
    geotina Member Posts: 2,111 Member
    Take a deep breath
    John already gave you some good information. You have 8 mets and that may be too many to have lung surgery depending upon where they are. Consult with a lung surgeon and get his take on thing. One of our members "idlehunters" just had cyberknife on a lung met that showed up. Perhaps you can pm her about her experience. Cyberknife, RFA, radiosurgery, microwave ablation etc. can be very confusing for a patient so make sure you thoroughly understand everything before making a decision. Since this stuff of yours is so slow growing, if growing at all, you have time to make an informed decision. Another member, "buzzard" just had lung surgery to remove mets, perhaps he will share his experience with you if you send him a pm.

    Is the interventional radiologist talking about doing the RFA procedures followed by chemo or chemo followed by RFA? Both plans sound like standard procedures with a dual attack.

    Take care - Tina
  • lesvanb
    lesvanb Member Posts: 905
    Kinda in the same boat
    but I only have 4 lung mets which are slow growing, 2 just over 1 cm atthis last scan, which allowed for a needle biopsy which confirmed adenocarcinoma. My oncologist says that I am strong and healthy with small slow growing nosules and recommended delaying chemo until after another scan in March. Yes I got the "we're treating this as a chronic disease" speech, but he wants me to stay healthy for as long as possible which I totally agree with. He did say that if I wanted to try something radical I could look into stereotactic radiation (Cyberknife). I meet with the RO next Wednesday.

    Meanwhile I am on subcut Iscador (mistletoe) plus IV Vitamin C according to UKansas clinical trial protocol plus juicing, meditation/yoga QI Gong, supplements, plus a radically changed my diet, and under care of naturopath and anthroposophical doctor and acupuncturist and TCM. I weight lift and cross-country ski and feel the best I have in seven years...just this little problem. Since I have one nodule in each lobe, R and L sides, I am not a candidate for thoracic surgery.

    Hope this helps and feel free to PM me.

    all the best, Leslie

    dx 5/08 stage 4 rectal cancer; 1 met to liver
    radiation 28 tx xeloda/oxali 6/08
    LAR 9/08
    R hepatectomy 10/08 NED
    FOLFOX 10 tx 1/09-5/09
    6/10 multiple lung nodules; 1 in each lobe(4)
    12/10 4 nodules w/largest 1.2 cm
    lung needle biopsy positive 12/10
  • rrob
    rrob Member Posts: 158
    John23 said:

    Vent away, it's good for you!

    My mother had lung cancer. Rather than attempt to treat each spot,
    they took 1/2 of her lung. She lost some more in later years.... But
    she lived for 17 years past her prognosis. And decently healthy years,
    at that!

    I'm probably way off base, since I never did chemo, radiation,
    or any of that stuff (in spite of being a 3c/4 CC victim), and I probably
    shouldn't be offering my three centavos worth....

    However - It seems to me, that when they try to "save" a cancer
    patient from losing part of an organ, or having to have an ostomy,
    they manage to create more of a problem.

    Both chemical therapy and radiation are blanketing killer agents;
    it's like nuclear carpet-bombing your front lawn to kill crabgrass.


    Oh yeah, it'll get rid of the crabgrass, but if the good grass doesn't
    grow back fast enough, the crabgrass will. And it'll take over the
    entire yard.

    If I were in your shoes, I would seek advice from surgeons specializing
    in cancer, not oncologists. Oncologists specialize in killing agents,
    with the idea that the toxins will manage to kill cancer and hopefully
    allow your body to manage to continue living. It's an interesting
    concept that has always managed to elude my comprehension, but
    not without it's merits, I'm sure (?)

    A qualified and well experienced surgeon will know what can be
    safely removed, and what shape you'll be in afterward. They trust
    in their own experience, not what some chemical manufacturer
    or radiation developer claims their product will do.

    Well....... That's "my take" on it, anyway.....


    Better health wishes to you!

    John

    Thanks!
    John,

    Thanks for the advice. Right now I'm not a candidate for lung surgery because the nodules are scattered in both lungs. There are 5 in my right and 3 in my left and they are in upper and lower lobes. Surgery would be the ideal solution and it's what I'll be working towards whether I do the RFA or the chemo. I'm hesitant on the chemo because I know that it's systemic and how much damage it does at the same time it's killing cancer cells. If that's the best and only alternative, that's what I'll do, but I do want to investigate other options. Thanks again for the advice.

    Rebecca
  • rrob
    rrob Member Posts: 158
    geotina said:

    Take a deep breath
    John already gave you some good information. You have 8 mets and that may be too many to have lung surgery depending upon where they are. Consult with a lung surgeon and get his take on thing. One of our members "idlehunters" just had cyberknife on a lung met that showed up. Perhaps you can pm her about her experience. Cyberknife, RFA, radiosurgery, microwave ablation etc. can be very confusing for a patient so make sure you thoroughly understand everything before making a decision. Since this stuff of yours is so slow growing, if growing at all, you have time to make an informed decision. Another member, "buzzard" just had lung surgery to remove mets, perhaps he will share his experience with you if you send him a pm.

    Is the interventional radiologist talking about doing the RFA procedures followed by chemo or chemo followed by RFA? Both plans sound like standard procedures with a dual attack.

    Take care - Tina

    Lung Mets
    Tina,

    Thanks for sharing the information with me. I'll definitely look at Buzzard's posts to see his information. Right now we're looking at the RFA without chemo until it's needed if something else pops up. I have decided that I'm not doing this on Thursday. I need a little more time to investigate my options and do some more research. Thanks again.

    Rebecca
  • rrob
    rrob Member Posts: 158
    lesvanb said:

    Kinda in the same boat
    but I only have 4 lung mets which are slow growing, 2 just over 1 cm atthis last scan, which allowed for a needle biopsy which confirmed adenocarcinoma. My oncologist says that I am strong and healthy with small slow growing nosules and recommended delaying chemo until after another scan in March. Yes I got the "we're treating this as a chronic disease" speech, but he wants me to stay healthy for as long as possible which I totally agree with. He did say that if I wanted to try something radical I could look into stereotactic radiation (Cyberknife). I meet with the RO next Wednesday.

    Meanwhile I am on subcut Iscador (mistletoe) plus IV Vitamin C according to UKansas clinical trial protocol plus juicing, meditation/yoga QI Gong, supplements, plus a radically changed my diet, and under care of naturopath and anthroposophical doctor and acupuncturist and TCM. I weight lift and cross-country ski and feel the best I have in seven years...just this little problem. Since I have one nodule in each lobe, R and L sides, I am not a candidate for thoracic surgery.

    Hope this helps and feel free to PM me.

    all the best, Leslie

    dx 5/08 stage 4 rectal cancer; 1 met to liver
    radiation 28 tx xeloda/oxali 6/08
    LAR 9/08
    R hepatectomy 10/08 NED
    FOLFOX 10 tx 1/09-5/09
    6/10 multiple lung nodules; 1 in each lobe(4)
    12/10 4 nodules w/largest 1.2 cm
    lung needle biopsy positive 12/10

    Lung mets
    Leslie,

    Thanks for sharing your information. How did you find your alternative doctors? I'm like you--I feel great and it's hard to believe I have these darned spots. I'm sure I'll have more questions, so I definitely will be back in touch. I'm headed off to get a good night's rest and start all over again tomorrow. I'm postponing the RFA for now. My oncologist had also suggested no chemo until we do another scan in March, so it sounds as if we're on the same schedule. I'm really curious about the Cyberknife because it was the one option that wasn't suggested to me. I'll have to ask my doctors some more questions. Thanks again for sharing your info and keep in touch! Good luck.

    Rebecca