Finally a diagnosis along with numorous questions --HELP

christsj
christsj Member Posts: 17
edited March 2014 in Lung Cancer #1
My mom was diagnosed with stage 1 non-small cell lung cancer...here is the kicker...she has it in BOTH lungs. Not a spread but two actual sites, one in the left lower lung (stage 1) and one in the upper right (stage 1). Because she is 82 and has emphysema the Oncology is reccommending Radiation, she would like to see her have whatever the new one is "Targeted" radiation. Here is the problem. The only Cancer Center close at all does not take her insurance...believe that?!?! I don't what to do or where to start on this. The Cancer Center she can go to does not offer the "Targeted" radiation. Also my brother said he thought he heard the Oncologist say that with radiation she is 70% curable...is this possible. I couldn't be there when the oncologist was there but hope to speak with her soon. Thanks for anything you can tell me. *hugs

Comments

  • Artin2010
    Artin2010 Member Posts: 17
    #2
    Information
    My only suggestion is that someone ask her oncologist to refer your mom to a special needs clinic that has the equipment to do targeted radiation therapy and chemo treatments.
    My father was diagnosed with LC several months ago in stage 3 and at 75 years old he made it through 8 weeks of therapy, no surgery and just yesterday I took him in for echogram on heart and comparison CT scan. We will know by the 30th of this month if his C.er is beat.Also you might want to contact the American Cancer Society office closet to you and ask for information about assistance in getting her to the doctors who could offer the best treatment possible. I can only sympathize with your pain and worry, because the last few months for me have been really hard on me, my wife and I have gone through some really tough emotional changes, not to mention the sleepless nights spent doing all the things necessary to keep a patient comfortable as possible. Wish I could offer more help, but know this, thousands and thousands have gone through or are going through what experiences you are about to undergo. Try really hard not to strees and worry, it will only imobilize you and then you will not be able to help the situation for dealing with your own issues and illnesses. Remember, there is hope even when it seems there is nothing left.
    Be strong and know that you're not alone in this!
    Love and prayers for you and mom.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #3
    Getting help
    A couple of options pop to mind. Call the oncologist about the problem and the primary care physician as well. Call the American Lung Association and the American Cancer Society in the area and ask for help. Call the local hospital and ask for the medical social worker and ask for help. Doctors need to write things a certain way to force insurance companies to pay up. Organizations sometimes have money to help folks in jams with certain procedures. Medical social workers sometimes know things that can help that the average person (even the average doctor) doesn't know. The place where the targeted radiation is located may have ideas for funding too. I have seen folks try to raise money with bingo games and raffles. Some move to the area where therapy is given so that the doctors there will order it. Check before you pack your bags though, that it will work.If she is on Medicare, then her options may still be the same no matter where she lives. Some just change clinics to a University teaching hospital where the program is better (I did that to get a better procedure once even though it involved driving 100 miles one way. It was worth it and my husband could drive when I couldn't.)

    Another option I have read about but haven't done involves a special light-activated dye that kills spots of lung cancer without surgery or maybe with only limited surgery if a probe needed to get to the lower lung area. I have read about it on the internet and it is offered in the US, though I'm not sure where. It's worth a look-see while you are exploring funding alternatives.
  • christsj
    christsj Member Posts: 17
    #4
    cabbott said:

    Getting help
    A couple of options pop to mind. Call the oncologist about the problem and the primary care physician as well. Call the American Lung Association and the American Cancer Society in the area and ask for help. Call the local hospital and ask for the medical social worker and ask for help. Doctors need to write things a certain way to force insurance companies to pay up. Organizations sometimes have money to help folks in jams with certain procedures. Medical social workers sometimes know things that can help that the average person (even the average doctor) doesn't know. The place where the targeted radiation is located may have ideas for funding too. I have seen folks try to raise money with bingo games and raffles. Some move to the area where therapy is given so that the doctors there will order it. Check before you pack your bags though, that it will work.If she is on Medicare, then her options may still be the same no matter where she lives. Some just change clinics to a University teaching hospital where the program is better (I did that to get a better procedure once even though it involved driving 100 miles one way. It was worth it and my husband could drive when I couldn't.)

    Another option I have read about but haven't done involves a special light-activated dye that kills spots of lung cancer without surgery or maybe with only limited surgery if a probe needed to get to the lower lung area. I have read about it on the internet and it is offered in the US, though I'm not sure where. It's worth a look-see while you are exploring funding alternatives.

    Okay we found a hospital
    Okay we found a hospital that will take her insurance and her Oncologist wants her to have Stereotactic Radio Surgery. Anyone had this before? Do we know what the cure rate is? Thanks everyone for all your help.
  • Glenna M
    Glenna M Member Posts: 1,576
    #5
    christsj said:

    Okay we found a hospital
    Okay we found a hospital that will take her insurance and her Oncologist wants her to have Stereotactic Radio Surgery. Anyone had this before? Do we know what the cure rate is? Thanks everyone for all your help.

    Stereotatic Radiosurgery
    I just completed 4 sessions of Stereotatic Radiosurgery for NSCLC adenocarcinoma in my left lung but do not have any statistics for the cure rate as I am sure it is different for everyone depending on the type, stage, size and location of the tumor.

    This is a more targeted radiation, accurate within 1 millimeter and you receive much higher doses of radiation with fewer visits, generally it is done with between one and five sessions. It is also supposed to do less damage to surrounding "good cells" and target only the cancer cells. The amount of time for the radiation is about the same as with other types of radiation but the sessions can take up to an hour because everything has to be positioned precisely. Before they start treatment you will have to go for a simulation where they will put markers on your chest and then do several x-rays to make sure everything is lined up perfectly, once this is done they will place 8 or 9 tattoos to mark the spots. These tattoos are just small green spots that will hardly be noticable in time. They also have to make a "bed" for your body so you don't move and you are in the exact same position each time. Your first visit for the simulation can last for up to 2 hours depending on how quickly they can get everything lined up.

    The "bed" they make for you is quite easy, you lay back on a big blue bag which then is filled with air and formed around your body (excluding the head). As the bag fills with air it hardens and maintains the shape of your body. You will use this bed for each of the treatments.

    There is no pain involved and I found the sessions much easier then previous radiation where I had to wear the dreaded mask over my face. Correction on the no pain - I didn't like the needle pricks for the tattoos but they only take a couple of minutes.

    The staff at the Cancer Center where I had this procedure done were awesome and explained everything they were doing which made everything less stressful. Please advise your mom that she will need to take shallow breaths during this procedure, which is quite easy to do. It takes less time to get everything lined up for the radiation as long as she doesn't take deep breaths.

    It really is an easy procedure it's just time consuming :) I hope this helps both of you, feel free to post any other questions or concerns you may have and I will try to help you. Just tell your mom to stay calm and relaxed and everything will be fine.

    Take care and best to you and your mom - I will be thinking of both of you.
    Glenna
  • christsj
    christsj Member Posts: 17
    #6
    Glenna M said:

    Stereotatic Radiosurgery
    I just completed 4 sessions of Stereotatic Radiosurgery for NSCLC adenocarcinoma in my left lung but do not have any statistics for the cure rate as I am sure it is different for everyone depending on the type, stage, size and location of the tumor.

    This is a more targeted radiation, accurate within 1 millimeter and you receive much higher doses of radiation with fewer visits, generally it is done with between one and five sessions. It is also supposed to do less damage to surrounding "good cells" and target only the cancer cells. The amount of time for the radiation is about the same as with other types of radiation but the sessions can take up to an hour because everything has to be positioned precisely. Before they start treatment you will have to go for a simulation where they will put markers on your chest and then do several x-rays to make sure everything is lined up perfectly, once this is done they will place 8 or 9 tattoos to mark the spots. These tattoos are just small green spots that will hardly be noticable in time. They also have to make a "bed" for your body so you don't move and you are in the exact same position each time. Your first visit for the simulation can last for up to 2 hours depending on how quickly they can get everything lined up.

    The "bed" they make for you is quite easy, you lay back on a big blue bag which then is filled with air and formed around your body (excluding the head). As the bag fills with air it hardens and maintains the shape of your body. You will use this bed for each of the treatments.

    There is no pain involved and I found the sessions much easier then previous radiation where I had to wear the dreaded mask over my face. Correction on the no pain - I didn't like the needle pricks for the tattoos but they only take a couple of minutes.

    The staff at the Cancer Center where I had this procedure done were awesome and explained everything they were doing which made everything less stressful. Please advise your mom that she will need to take shallow breaths during this procedure, which is quite easy to do. It takes less time to get everything lined up for the radiation as long as she doesn't take deep breaths.

    It really is an easy procedure it's just time consuming :) I hope this helps both of you, feel free to post any other questions or concerns you may have and I will try to help you. Just tell your mom to stay calm and relaxed and everything will be fine.

    Take care and best to you and your mom - I will be thinking of both of you.
    Glenna

    I thank you all...Glenna I
    I thank you all...Glenna I am printing up your post to take home to my Mom, it should really help her, I can't thank you enough! Did you get real tired? Did it burn your skin? I hope all goes good for you and again thanks to you all!
  • Glenna M
    Glenna M Member Posts: 1,576
    #7
    christsj said:

    I thank you all...Glenna I
    I thank you all...Glenna I am printing up your post to take home to my Mom, it should really help her, I can't thank you enough! Did you get real tired? Did it burn your skin? I hope all goes good for you and again thanks to you all!

    I'm feeling pretty good
    I only finished my treatments yesterday but so far no redness or burns on my chest, they gave me some cream to use but I haven't had to use it yet. The nurses told me I may suffer from fatigue for the next 4 to 6 weeks and I am feeling a little more tired than usual but it has not been anywhere near as bad as the fatigue I had from the 35 radiation treatments to my neck. Actually I'm feeling pretty good right now considering everything I've been through. I also have squamous cell carcinoma of my larynx and underwent chemo and radiation for that prior to the Stereotatic Radiosurgery to my lung.

    Tell your mom that she will do fine with this treatment, she just has to relax and concentrate on taking good care of herself. I have read that this type of radiation is quite successful and does far less damage to any cells other than the cancer cells.

    As I said before, please feel free to post again with any questions you or your mom might have. Take good care of your mom and yourself and let your mom know that I will be thinking of her (and you) and hoping she receives a fantastic report after her treatment. Please post again so we will all know how she is doing.

    Glenna

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