Radiation Question for those who have had it

mykidsmommy
mykidsmommy Member Posts: 76
in Colorectal Cancer #1

Hello Dear Survivors - 

 

My CC returned to my right lung in 2016. Original diagnosis was 2009. NED for 8 years. Here we are. In June of 2016 I had my right tumor removed, along with my entire right lung. I have done very well since surgery but those dam pesky cells are still growing in the area where my right lung was, and I am now going to start radiation and an oral chemo - xeloda on radiation days. I am a silver linng kinda gal - so still thankful that this reoccurance is contained in my lung area. But crazy how fast and large this mass grew since surgery. Yuck. I am doing everything i can holistically - which helps my mind and my energy post lung removal. 

Just wondering about radiation and your experiences with it. I have not had radiation through this process. 10 years ago I had a resection and 12 rounds of chemo. I am very optimistic that radiation will zap this crap and force the cells do dye off - clearly the two surgeries didn't get it all. 

 

Thank you for your radiation input .... I don't want to me too Pollyanna about it - and think it' will be a walk in the park ! Here's hoping. 

 

Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    #2
    MKM

    I am Wolfen, mother of Johnnybegood, who was a warrior here until she lost her battle in July 2014. Like Sue, she did not have radiation to her numerous lung tumors, only colon and rectum. However, my husband, who was a warrior also, had radiation for a tumor in his left lung. I can remember that it caused redness on his chest and extreme fatigue. Sadly he is no longer here to provide helpful information having lost his battle in 2013 due to medical complications.

    Perhaps our Phil has some information also.

    I am so, so sorry to hear of your recurrence.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Radiation

    I have only had radiation on my colon, rectum, anus, and that was sheer HELL. 

    I know JanJan has had radiation on lung mets, so same area; and she will surley have some sage advice. She is doing well.

    I am so very sorry to hear about your reccurance. You and Abrub, making it eight and nine years NED and then having it back again, is truly sobering. 

    Well, your positive spirit has brought you this far. Here's to eight more years, with eight and eight on top of that. 

    SUE

  • John23
    John23 Member Posts: 2,122 Member
    edited November 2016 #4
    Tumors

    Ask about Radio Frequency Ablation (RFA). The Interventional Radiologist shoots Microwaves, Heat, Cold, or Chemo directly into the tumor(s). A very small incision for the "tools" that usually will only require a band-aid afterwards. (my wife just had this done; ask "PhillieG" here about RFA).

    Good luck and best of health!

    John

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited November 2016 #5
    The radiation I had for the

    The radiation I had for the lung mets was very pinpointed and localized, not at all like the radiation I had previous to the cancer surgery. I only had four sessions and had no burning or redness, really no side affects at all. The first radiation did give me some discomfort in my rear end and I think gave me fatigue but I had it along with chemo so I don't know if they both did or one did and, if so, which one did.

    That being said, my surgeon said at my last visit that radiation doesn't get rid of cancer and my mets are growing again, just very slowly. So I don't know if it helped much or at all. My oncologist who done the pinpointed radiation of the lung mets called it 'a great success' but now I don't know what to think. If they get bad I'm going to check into ablation but I'm told it's not a protocal here in Canada.

    Good luck, I hope they get the bugger out of there once and for all. As for my situation I'm not sure who to trust anymore. It seems like all the professionals say something different.

    Jan

  • John23
    John23 Member Posts: 2,122 Member
    edited November 2016 #6
    JanJan63 said:

    The radiation I had for the

    The radiation I had for the lung mets was very pinpointed and localized, not at all like the radiation I had previous to the cancer surgery. I only had four sessions and had no burning or redness, really no side affects at all. The first radiation did give me some discomfort in my rear end and I think gave me fatigue but I had it along with chemo so I don't know if they both did or one did and, if so, which one did.

    That being said, my surgeon said at my last visit that radiation doesn't get rid of cancer and my mets are growing again, just very slowly. So I don't know if it helped much or at all. My oncologist who done the pinpointed radiation of the lung mets called it 'a great success' but now I don't know what to think. If they get bad I'm going to check into ablation but I'm told it's not a protocal here in Canada.

    Good luck, I hope they get the bugger out of there once and for all. As for my situation I'm not sure who to trust anymore. It seems like all the professionals say something different.

    Jan

    Some Canadian Info

    Canadian Cancer Society

    CTV NEWS

    Cancer patient wins funding battle with Ontario (2007 / old news)

    Canadian Cancer Society  Ablation for cancer

    This list can go on forever, just do a "Google" for "Canada Radiofrequency Ablation Cancer"

    https://www.google.com/search?num=30&newwindow=1&safe=off&complete=0&biw=1366&bih=622&site=webhp&q=canada+Radiofrequency+Ablation+Cancer&oq=canada+Radiofrequency+Ablation+Cancer&gs_l=serp.12...419694.423232.0.426931.0.0.0.0.0.0.0.0..0.0....0...1c.1.64.serp

     

    "Yes Virginia, there is a Santa Claus"

    Be well, dammit.

    John

     

  • mykidsmommy
    mykidsmommy Member Posts: 76
    #7
    RFA

    Thank you all for the replies - Here's the deal on the RFA - One year after my DX in 2007 - after 12 rounds of chemo and a resection - they foind one spot in my right lung. We did RFA on the spot - fried it - but it reamined there - as RFA does - AND SO guess what decided to grow this many years later - yep you guessed ..... one of those tiny pesky cancer cells in my right lung. ..thus the tumor and the the removal of it and my right lung. Radiation is my hope for killing this crap that is growing fast under myr ight  arm. YUCK. 

  • John23
    John23 Member Posts: 2,122 Member
    #8
    Caaaaancer

    Cancer has a habit of recurring, regardless of treatment. The customary options we have for treatment range from "fairly safe" (as in Ablation), to the very high risk (as in radiation).

    Chose your weapon carefully, too often the attempt to cure is worse than the problem.

    My best wishes are with you,

    John

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited November 2016 #9
    John23 said:

    Some Canadian Info

    Canadian Cancer Society

    CTV NEWS

    Cancer patient wins funding battle with Ontario (2007 / old news)

    Canadian Cancer Society  Ablation for cancer

    This list can go on forever, just do a "Google" for "Canada Radiofrequency Ablation Cancer"

    https://www.google.com/search?num=30&newwindow=1&safe=off&complete=0&biw=1366&bih=622&site=webhp&q=canada+Radiofrequency+Ablation+Cancer&oq=canada+Radiofrequency+Ablation+Cancer&gs_l=serp.12...419694.423232.0.426931.0.0.0.0.0.0.0.0..0.0....0...1c.1.64.serp

     

    "Yes Virginia, there is a Santa Claus"

    Be well, dammit.

    John

     

    Thanks John! You rock as

    Thanks John! You rock as always!

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    edited November 2016 #10
    RFA's

    First off, I'm sorry it's back.
    I've had at least 9 RFA's and had no problems with them at all. Aside from my first one, they were all same day procedures. On my first one I could have gone home but they wanted to keep me for observation. They were deemed successful. I never had them grow back in the same spot.

    I only had radiation 1 time. It was 3 short targeted doses over 5 days. The reason why I was given radiation and not another RFA was because the spot that had to be removed was very close to an artery and they didn't feel they had a good enough margin to work within. It permanently screwed up the upper part of my right lung. It's not common but there was the possibility of it happening and I was aware of that.  If I wasn't walking or climbing stairs I had no trouble breathing. I did have to carry oxygen with me if I was out and about.

    I did do a month or so of pulmonary rehab and got a bit better. I don't use tanks of oxygen anymore and I have no problem kayaking. It's different type of exercise. I've tried cycling and still get out of breath easily. I also tried tennis this past summer and did so-so. I feel I could possibly work my way up to playing casual doubles.

    As John the 23rd said, "Chose your weapon carefully". There are risks with all options and as they always say in the fine print "results may vary"

  • carrieh
    carrieh Member Posts: 146 Member
    edited November 2016 #11
    Life Threatening Experience

    I had a terrible, life-threatening experience with radiation. Not to scare you..but do read the fine print. Those things can really happen. I was young and got a pat on the back, "you'll do great" sort of deal...then sent to hospice after months in the hospital. Lived through it...3 years ago..but my life and body are forever altered. That being said, a lot of people have minimal side effects and go on to be cancer-free. There is a genetic condition that causes extra sensitivity to radiation. You might ask about it just for peace of mind? It's a pickle to be in..just be well informed. Expect the best...but yes, radiation can steal life as well as give it. I'm sorry if that's difficult to hear.  ..but if I could go back? I wish I had read more and heard about more experiences. Just don't let doctors bully or scare you into doing it...and stay away from Varian serviced radiation machines (class action lawsuit for deaths).

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