No RFA for me

th_in_canada
th_in_canada Member Posts: 46
in Colorectal Cancer #1
So today my doctor phoned me (not a holiday here) to tell me that she would/could not do the application for out-of-country funding for my RFA procedures in Texas. She said that it was not "medically necessary" for me and that there was no proof that rfa was better than doing nothing. Apparently she never read the articles I gave her nor did she actually speak to an interventional radiologist. I was very upset but now I'm just mad. It wouldn't have bothered me so much if there was a really valid reason why I in particular couldn't have the procedure but I have a thoracic surgeon who said he could do it.
Here we cannot choose our oncologists nor can I just contact an interventional radiologist.

Comments

  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #2
    Can I ask how many tumors
    Can I ask how many tumors you have? I am so sorry to hear that they won't do rfa for you. I am so disgusted with cancer, the hurt and loss it brings to so many and countries that refuse someone treatment because they don't think it is medically necessary . How will they ever know if it works if they refuse to do it??? Again, I am sorry.
    Brenda
  • th_in_canada
    th_in_canada Member Posts: 46
    #3
    Brenda Bricco said:

    Can I ask how many tumors
    Can I ask how many tumors you have? I am so sorry to hear that they won't do rfa for you. I am so disgusted with cancer, the hurt and loss it brings to so many and countries that refuse someone treatment because they don't think it is medically necessary . How will they ever know if it works if they refuse to do it??? Again, I am sorry.
    Brenda

    lots
    I have 8 tumors in my lungs. The surgeon planned to do 2 or 3 rfa procedures. One of my tumors is in an iffy place so I was considering cyberknife or nanoknife for that one. Apparently, I was dreaming.
    I had been told that I had too many but when I found a doctor who would do it, I thought I'd go for it. My oncologist also thought rfa was too risky. When I'm told there's nothing else they can do for me, being "too risky" seems like a pretty silly thing.
    Tricia
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #4
    th_in_canada said:

    lots
    I have 8 tumors in my lungs. The surgeon planned to do 2 or 3 rfa procedures. One of my tumors is in an iffy place so I was considering cyberknife or nanoknife for that one. Apparently, I was dreaming.
    I had been told that I had too many but when I found a doctor who would do it, I thought I'd go for it. My oncologist also thought rfa was too risky. When I'm told there's nothing else they can do for me, being "too risky" seems like a pretty silly thing.
    Tricia

    I think the Juravinski
    I think the Juravinski Cancer Center (McMaster Univ.) has a cyberknife machine (I could be wrong,) but I saw they were one of two in Canada that have this....you can check out their website, but again, you'd probably have to get a referral from your onc.. Not sure where in Canada you are, this cancer center is in Ontario.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    What do they propose?
    Since they seem to think an RFA is not "medically necessary", just how do they propose dealing with the spots in your lungs? This is disturbing to hear/read about. I have had 4 RFAs done over the past 4 years and it's been a successful treatment for me. So are they just doing nothing at this time? That doesn't seem to be an aggressive approach.
    -Phil
  • th_in_canada
    th_in_canada Member Posts: 46
    #6
    PhillieG said:

    What do they propose?
    Since they seem to think an RFA is not "medically necessary", just how do they propose dealing with the spots in your lungs? This is disturbing to hear/read about. I have had 4 RFAs done over the past 4 years and it's been a successful treatment for me. So are they just doing nothing at this time? That doesn't seem to be an aggressive approach.
    -Phil

    treatment
    I was taken off chemo in September because of progression. At that time I was told that there was no standard treatment left for me but I could check out the Phase 1 drug trials. I was offered one clinical trial but I turned it down as there seemed to be little likelihood it would do anything except make me feel like crap.
    Our cancer center here does chemo and standard radiation just fine but aggressive stuff? Not at all.
  • th_in_canada
    th_in_canada Member Posts: 46
    #7
    smokeyjoe said:

    I think the Juravinski
    I think the Juravinski Cancer Center (McMaster Univ.) has a cyberknife machine (I could be wrong,) but I saw they were one of two in Canada that have this....you can check out their website, but again, you'd probably have to get a referral from your onc.. Not sure where in Canada you are, this cancer center is in Ontario.

    cyberknife
    Yes, you're right, there is cyberknife technology in Ottawa and Hamilton (as well as in Quebec) but I have too many mets for that, or at least that's what I've been told. I mentioned cyberknife to my onc today but no reaction from her. She probably hasn't heard of it. She hadn't heard of rfa for lungs until I told her in June.
    I live in Alberta.
  • thingy45
    thingy45 Member Posts: 632 Member
    #8
    th_in_canada said:

    treatment
    I was taken off chemo in September because of progression. At that time I was told that there was no standard treatment left for me but I could check out the Phase 1 drug trials. I was offered one clinical trial but I turned it down as there seemed to be little likelihood it would do anything except make me feel like crap.
    Our cancer center here does chemo and standard radiation just fine but aggressive stuff? Not at all.

    so sorry Tricia
    So sorry to hear and read all about this Tricia. Since you and I share the same cancer hospital and onc's. What are we to do here in Canada?
    Great however that we were able to meet and share our stories.
    Hugs. Marjan
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    th_in_canada said:

    treatment
    I was taken off chemo in September because of progression. At that time I was told that there was no standard treatment left for me but I could check out the Phase 1 drug trials. I was offered one clinical trial but I turned it down as there seemed to be little likelihood it would do anything except make me feel like crap.
    Our cancer center here does chemo and standard radiation just fine but aggressive stuff? Not at all.

    Clinical Trials
    I'd be wary of a Phase I trial too unless I really had to try it. I was part of a Phase III trial but that was different. I don't expect you to be able to answer this, but what are people supposed to do? RFA has successfully been used for many years, they need to get with the program.
  • standbyme
    standbyme Member Posts: 41
    #10
    PhillieG said:

    Clinical Trials
    I'd be wary of a Phase I trial too unless I really had to try it. I was part of a Phase III trial but that was different. I don't expect you to be able to answer this, but what are people supposed to do? RFA has successfully been used for many years, they need to get with the program.

    lung mets
    Tricia,

    We live in Saskatchewan. My husband has 10 mets scattered throughout both lungs. He also was taken off chemo in September. It is just too many mets to remove by RFA according to the 4 doctors we've talked to. It is an awful thing to be in good physical condition and know there is nothing you can do. We feel we've tried everything we can.
  • th_in_canada
    th_in_canada Member Posts: 46
    #11
    standbyme said:

    lung mets
    Tricia,

    We live in Saskatchewan. My husband has 10 mets scattered throughout both lungs. He also was taken off chemo in September. It is just too many mets to remove by RFA according to the 4 doctors we've talked to. It is an awful thing to be in good physical condition and know there is nothing you can do. We feel we've tried everything we can.

    lung mets
    Yes, this is how I feel. I couldn't find a doctor in Canada that would look at someone for rfa if they had more than 3 lung mets.
    Did the doctors ever tell you what was the issue with the number of mets? I tried to find out but couldn't get a straight answer. Since rfa can be done in several sessions, I couldn't find out why they couldn't do 2 or 3 at a time, multiple times. If I had been told that too much lung damage could occur, or it wouldn't work on so many, or something like that, I would have dropped it months ago. Perhaps it's not economically feasible??? I actually talked to and asked the interventional radiologist in Saskatoon why he couldn't do 6 (the number I had in the summer) and he said "if you have 6, you have more." So???
    I just really wanted an answer that made sense.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #12
    th_in_canada said:

    lung mets
    Yes, this is how I feel. I couldn't find a doctor in Canada that would look at someone for rfa if they had more than 3 lung mets.
    Did the doctors ever tell you what was the issue with the number of mets? I tried to find out but couldn't get a straight answer. Since rfa can be done in several sessions, I couldn't find out why they couldn't do 2 or 3 at a time, multiple times. If I had been told that too much lung damage could occur, or it wouldn't work on so many, or something like that, I would have dropped it months ago. Perhaps it's not economically feasible??? I actually talked to and asked the interventional radiologist in Saskatoon why he couldn't do 6 (the number I had in the summer) and he said "if you have 6, you have more." So???
    I just really wanted an answer that made sense.

    Let's Go(away) Mets
    I've only had 1-3 mets done at a time during my ablations. I don't know exactly why they can't do more at the same time, maybe too much going on in the lung at the same time makes it harder for it to heal? I just had a followup scan about 1 month after my RFA and there is still some fluid in there.
    When I did have more mets they were dealt with by wedge resections which was decided to be the better way to get rid of the clusters of them.
    I wish you well
    -phil
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #13
    standbyme said:

    lung mets
    Tricia,

    We live in Saskatchewan. My husband has 10 mets scattered throughout both lungs. He also was taken off chemo in September. It is just too many mets to remove by RFA according to the 4 doctors we've talked to. It is an awful thing to be in good physical condition and know there is nothing you can do. We feel we've tried everything we can.

    self directions
    There is often a later point where some turn to biological alternative and experimental medicine to try to buy time, improved health, extra chances or sometimes seeming miracles. We don't qualify for that particular timing, because we started sooner, at the very first as an alternative neoadjuvant tx that reduced spread, then used as complementary tx when chemo was added after 1st surgery. We credit the biologically based CAM for helping to prevent mets before and after the 2nd surgery. John23 might be a better example of alternative medicine.

    Getting to a successful surgery takes everything you can find. The surgeons are grappling with two issues, first the number of targets to remove and second, the containment of systemic disease before and during surgery. The latter part is where CAM + immunochemo was crucial for my wife's success.
  • standbyme
    standbyme Member Posts: 41
    #14
    th_in_canada said:

    lung mets
    Yes, this is how I feel. I couldn't find a doctor in Canada that would look at someone for rfa if they had more than 3 lung mets.
    Did the doctors ever tell you what was the issue with the number of mets? I tried to find out but couldn't get a straight answer. Since rfa can be done in several sessions, I couldn't find out why they couldn't do 2 or 3 at a time, multiple times. If I had been told that too much lung damage could occur, or it wouldn't work on so many, or something like that, I would have dropped it months ago. Perhaps it's not economically feasible??? I actually talked to and asked the interventional radiologist in Saskatoon why he couldn't do 6 (the number I had in the summer) and he said "if you have 6, you have more." So???
    I just really wanted an answer that made sense.

    The way I understand it is
    The way I understand it is if there are that many, there will be more that are too small to see that will eventually grow. The last cat scan my husband had, before they stopped chemo, showed an increase in all mets, plus one new one. The doctor explained it that his were so widespread, in every lobe and all over the place, that they couldn't just "cherry pick" them, her words. There would be too much damage to his lungs, also there would be more to replace the ones removed. I am going to send you my email by private message, if you want to talk to me. We understand how you feel.

    Judy

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