Fay A. Posted April 5, 2004 Share Posted April 5, 2004 Could use your help. My choices are: 1. I have targeted radiation to the node in the mediastinum along with chemo. This means that the node will probably go away, which is good because it's in a VERY bad spot. Problem is if I chose this option it means no going back to radiate the entire mediastinum at a later date. I'm stuck with spot treatments from that point on. 2. If I have the entire mediastinum zapped it will damage the heart, my only lung, etc. but it will probably take care of any micro mets in the area. If you've been in this position and had radiation to the mediastinum I would appreciate hearing from you about your choices and the the side effects. I'm just so glad I have still have some options.... Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted April 5, 2004 Share Posted April 5, 2004 I had it done last Feb 2003. I felt like I had to fight it one day at a time and not worry about next year. I have done ok so far. Good luck, Love Ciny Quote Link to comment Share on other sites More sharing options...
Andrea Posted April 5, 2004 Share Posted April 5, 2004 Gosh Fay, that is a tough choice. Did the radiation oncologist give his recommendation? I have no idea what they are doing on my mom--whether it is a spot or the whole banana, I never thought to ask, she starts tomorrow. I know they are doing the lymph node areas that showed up on the PET at diagnosis. They got the lymphs and tumor out during surgery, but those stupid microscopic cells. The radiation oncologist told us that the risks are damage to the other lung, but in her case not bad since it is not as close; heart, all of that stuff, and radiation can cause another cancer in 10 years, but he said we have no choice or this cancer will almost definately come back It is the only potential remedy right now. They are tatooing the area they radiated so if there is a recurrance, they know what area they touched. I know this is no help to you, I am just sharing what I just learned. Personally, if they recommended the whole banana to me, I would just go for it. Kill the deamons off! Ask the radiation oncologist what he would recommend for his (or her) wife, husband, mother, etc. Keep us posted Quote Link to comment Share on other sites More sharing options...
Melinda Posted April 5, 2004 Share Posted April 5, 2004 Fay, I know nothing-absolutely nothing. Sorry. What does your doc. recommend? Have you gone to get a second opinion from another doc.? I find that a second opinion (even if it completely contradicts the first) forces me to discover what I really think--and after all the research, consultations, etc., I am more sure of my gut instinct on a matter. But that's just me... Please keep us posted on a) what you learn what you decide and c) when you decide to go ahead with either procedure. You are in our thoughts, Melinda Quote Link to comment Share on other sites More sharing options...
Nancy B Posted April 5, 2004 Share Posted April 5, 2004 Hi Fay, Boy, what a tough decision. Have you gotten other opinions? I had a lung cancer specialist (oncologist) at Norris that was highly recommended. Her name is Valerie Israel. Please know that my prayers are with you and if I can do anything, please let me know. Hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
gail Posted April 5, 2004 Share Posted April 5, 2004 Don't have a clue, but wanted you to know I am behind your decision 100%!! gail Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted April 5, 2004 Share Posted April 5, 2004 Wow, there's an ugly choice. How good is your radiology department? If they're very confident at spot-treatment, then future spot-treatment would be less worrying. You're having chemo at the same time...that's for micro mets, right? I personally would worry about losing strength from the damage if the entire area were radiated. But I have no experience with it, so what do I know. I hope you come to a decision you are comfortable with. Quote Link to comment Share on other sites More sharing options...
Mr Ry Posted April 5, 2004 Share Posted April 5, 2004 Fay, I had the whole banana. They radiated the right lung and mediastinum along with cabo/taxol. The tumor in the mediastinum was the most life threating. I was told near the end that I was considered an emergeny case. It was causing and still does put pressure on the vena cava. I am not sure but I believe this caused the most damage to the cancer in both areas. With the whole banana there is a point where they have to stop if you want to be evaluated for surgery. This is based on the number of rads you have had. Once you have the maximum number of rads, the area will not heal for surgery. They continued radiation on me because surgery was not an option. I now have slight heart damage. I have mitral valve prolapse(leaking valve). Also a small amount of fluid around the heart. Good luck with whatever you decide. Side effects were a sore throat, fatigue and in my case a perrmanent loss of hair to that area. For some people that can be a good thing. John Quote Link to comment Share on other sites More sharing options...
Snowflake Posted April 5, 2004 Share Posted April 5, 2004 Fay, I had the whole banana - wasn't given an option of "spots" because the doc was going for them thar free radicals that were possibly doing the hippie thing in their little VW pop-up bus through my lymph system heading in that general direction (one positive node in the medistinum)... Definite side effects toward the last third of treatment, but in the grand scheme of things and looking back, they weren't THAT bad...okay, maybe they were, not being able to swallow was "not cool", napping was a given...missing out on some of my boy's school functions "just in case" wasn't real fun, and the weekly blood letting wasn't a joy, either...but I didn't need pain medication, so it couldn't have been all bad... I'm not sure what I would have done given the choice, but then again, DRAMA is the way to go with this disease and err on the side of over-kill! Take care, Becky Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted April 5, 2004 Share Posted April 5, 2004 Fay, Whatever you decide, I wish you the best possible outcome. It sounds like the lung damage, which I would have been more concerned with, is minimal with whole radiation. I also believe in overkill, because sometimes as much as you want to you can't back up and make the other decision instead. Prayers at you... XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
norme Posted April 5, 2004 Share Posted April 5, 2004 Fay, I don't have any answer for you other then what road you have chosen in the past for yourself has been the right one so flip that coin and go again. when is this suppose to start?????sure wish we were neighbors, i would be there to help you.....Love Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted April 5, 2004 Share Posted April 5, 2004 Hi Fay, Just wanted to say my thoughts and prayers are with you for the best of results regarding whatever decision you make. Peace, take care and God Bless. Rich Quote Link to comment Share on other sites More sharing options...
Eileen Posted April 5, 2004 Share Posted April 5, 2004 Dear Fay ----sorry I cannot answer what you should do (I am not much help am I?) I really do not know what I would do as I never had to decide --- but I guess if it were me, I would most likely go with the targeted spots and not cause damage to the heart and lung---(probably not a popular opinion) but how much damage would it cause? what ever decision you make, I am sure it will be right for you ---and the wisest choice best wishes to you Quote Link to comment Share on other sites More sharing options...
Elaine Posted April 5, 2004 Share Posted April 5, 2004 Gosh Fay, I don't have a clue, but I just want you to know that I have faith that you will make the best decision possible for you. Elaine Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted April 5, 2004 Share Posted April 5, 2004 Fay, I'm not really qualified to offer an opinion .... but that never stopped me before ... so .... Seems to me it's kinda like the choice between a 357 magnum and a tactical nuke. Both will get the job done it just all depends on how much "collateral damage" you're willing to put up with and how many times you're willing to pull the trigger. I think if it were me I'd go the spot route. I don't like the sound of words like "damage the heart, my only lung, etc". Just my opinion and you know you better than I know you. Good luck whichever way it goes! Dean Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted April 6, 2004 Share Posted April 6, 2004 My Rad was to an area about 9 inches x 12 inches in the middle / right side of my chest (and back). My main tumor was wrapped around the superior vena cava so they had to try and get as much of it as possible. I had trouble with my esophogus but that was the extent of "damage". My heart and left lung were fine. My esophogus has healed now but I still have trouble swallowing from time to time. Good luck and best wishes on whichever you decide on. God Bless, MO Quote Link to comment Share on other sites More sharing options...
Debi Posted April 6, 2004 Share Posted April 6, 2004 Fay, I wasn't going to post because I have never been in your shoes but realize that Dean Carl and myself have more in common than lung cancer I also feel uncomfortable about the possible damage to heart and lung. Overkill is a good thing with lung cancer, but you only have one heart and one lung and you have been through alot. That said, you are a smart, courageous woman and I don't think you have made any wrong choices so far....I know in my heart that whatever you decide will be the right choice for you.... Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted April 6, 2004 Share Posted April 6, 2004 Hi fay,My situations a little diff. but where my tumor was it was I'm told dangerously close to the heart.When getting radiation they said make absolutely sure I didn't move,cough,burp,etc. or I was in trouble.Even tho I never moved,coughed,hic-cuped,burped,or blinked for 30 treatments I have had damage to my one surviving lung,and blood clots.Far as I know there was no damage to heart?????.The bright side was considerable shrinkage.(will find out 04/15 where i'm at now--that being the next scans In your position I would opt for the spot rad.Whatever you decide I and everyone else will back you.You are without doubt one of the most inspirational members of this site.I and all of us are with you 100%. Also a big THANK YOU for all your posts and wisdom GOOD LUCK FRANK L. Quote Link to comment Share on other sites More sharing options...
Joe B Posted April 6, 2004 Share Posted April 6, 2004 Hi Fay, I am about 3 months out from finishing my radiation. I breezed through the initial process- however, I am experiencing after effects. I am now dealing with inflammation of my right lung (lower lobe), and a slight cough that periodically worsens and then goes away. Not sure what I would do if I were you, but I want you to be aware that radiation effects can last for 6 months to 1 year. Lung damage is a risk to doing the whole area. I think they under report the occurrences of radiation pneumonitis. You are in my prayers.... I am sure you will make the right decision for your current situation.... Joe Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted April 6, 2004 Share Posted April 6, 2004 Fay, I had the whole bananna radiated, then was filleted like a flounder in the mediastinal area, not to mention the chemo. Still, I have two enlarged lymph nodes that are suspicious for canncer in the mediastinal area on my trachea. It is the only area where I intially had pain and still do sometimes. Have you been radated at all yet? If not, then I say go for the whole bannana. The doctor told me that radiation to the heart in really minimal, unless radiating that area directly. As far as lung damage, yes, this could happen if it is over radiated. You should also be aware of the possibility of further damage, to yor lung, but again you will be getting hit in the center of your chest , and not your lung. PLus chemo could be used to mop up any excess cells. Chemo isn't as effective on BAC as it is on other cancers, However, these two combined really nuked cance! I had problems swallowing, but this magic mouth wash I was prescribed really worked so I could numb my throat long enough to eat. They can also give you a medicine to minimise throat problems when receiving radiation. I got a weird pains all the way up to the top of my head when I swallowed. Radiatin is weird. You cant hear it, see it, feel it, smell it, or taste it, but the damage it does is unbelievable. My MIL e-mailed info on a new precision radiation treatment, being done in Shreveport La., I will find it and PM it to you. Which ever choice you make we are here for you. I have plenty of tips on eating and nausea. I had the top of my stomach hit hard too, and vommitted for a week and needed to go to ER to get hydrated twice. This was after the radiation was over, the effects last up to six months. I will send you some more info soon. Cheryl Cheryl Quote Link to comment Share on other sites More sharing options...
Nushka Posted April 6, 2004 Share Posted April 6, 2004 Dear Fay, I had lymph node involvment found during my surgery. They removed the left upper lobe and all of the nodes on the left side. I then had chemo (carbo/vp16) and radiation to the mediastinum. I have had some residual effects. My heart has a new murmor that it didn't have (aortic valve), a cough and wheeze. I too used the majic mouthwash during treatments and it helped alot. I was fine during treatments but by the end of them I was exhausted and stayed that way for weeks. I had 37 treatments and have been told that I can't have any more radiation in that area no matter what happens now. Mine was as a precaution...no tumor to size or anything...and the same with the chemo. So far so good but I go for scans in the next two weeks. Will let you all know how that turns out. I was dx'd IIA/IIIA. I don't think there is a right answer here. Do what your heart tells you to and don't beat up on yourself no matter what happens. You are in my thoughts and prayers. Nina, aka Nushka Quote Link to comment Share on other sites More sharing options...
paddy Posted April 6, 2004 Share Posted April 6, 2004 Goodness Fay? What a terrible dilema you have. Whatever you choose my thoughts and prayers will be with you. You are such a brave lady and deserve the very best results whichever way you choose to go! Paddy Quote Link to comment Share on other sites More sharing options...
karen335 Posted April 6, 2004 Share Posted April 6, 2004 Fay, I wish I had and answer for you. It sounds like quite a few have gotten the whole area radiation. I had 17cm of radiation in the right lung. I believe mine was whole median area then chemo. I would consider what Dean has posted. You need to get answers from your docs and maybe get a second opinion. You are in my thoughts and prayers. I will call you when I get home from hospital... Blessings, much affection and hugs, Karen Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted April 6, 2004 Share Posted April 6, 2004 Whew.......that's a tough one. I don't have any experience with radiation, but the thought of not being able to ever radiate again would bother me. I know you will make the right decision. Best wishes!! Angie Quote Link to comment Share on other sites More sharing options...
J.C. Posted April 6, 2004 Share Posted April 6, 2004 Fay, Best wishes on your decision it is a hard one to do, but you know your body and care for life. Luck to you. J.C. Quote Link to comment Share on other sites More sharing options...
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