blaze100 Posted January 4, 2007 Share Posted January 4, 2007 I met my gastro doc today. Very nice doc. He reviewed my tests said point blank my heart stents were because of radiation scarring. And most likely I have scarring in esophagus too which is causing my gastro problems. So I am having a endoscopy this month. Anyway, I can see the writing on the wall. I should never have had the radiation and chemo. I was so scared. But I can see now this radiation crap has lead me down a dead end street. I reread my path report and my tumor was 12.5 cm with a 0.1 mm margin at hilar. I don't see how I could have passed on the radiation. Still it is really causing me major health problems now. Any perspective would be welcome. I'm really depressed with this whole mess. My family is all long lived, I just grew up thinking it was my birthright. Now I'm having these kinds of problems at age 52, the long term doesn't look good. I am so sad tonight...I'm just ready to give up. Barb Quote Link to comment Share on other sites More sharing options...
mary colleen Posted January 4, 2007 Share Posted January 4, 2007 Barb, I know that you are at a low point, and as a newcomer, non-patient, and outsider, I still have the nerve to say that I understand that to some degree. I don't know a lot, but I'm sure that you used intelligence and logic in deciding your course of treatment, no matter how much fear was involved. Your tumor was unusually large, and it called for a full plan of attack...which you launched. Good for you, because you are still with us! My little vote is that you hang in there and wait for a better day; you will attack these current issues as the survivor and fighter that you clearly are. Hang in! Mary Colleen Quote Link to comment Share on other sites More sharing options...
Don M Posted January 4, 2007 Share Posted January 4, 2007 Barb, I am sorry you have to deal with long term effects of treatment. I hope it is something that can easily be managed. Don M Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 4, 2007 Share Posted January 4, 2007 Barb, so sorry you have to deal with this as well. You did the best you could with what you knew at the time. Unfortunately, we never know the whole picture and other choices could also lead to dire results. It is a risk every time we make a decision. I hope you have someone you can talk with on a regular basis to air your feelings. That is needed to get you through all this. I hope things get better for you. Don Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted January 4, 2007 Share Posted January 4, 2007 Barb,At the time we make the decisions as to have radiation and or chemo we are informed of the possible side effects down the road.I too am having many problems with things that are related to chemo,radiation,tests,medicines etc. When I think on it,I still really feel it has been worth it since I truly feel those tx's all combined have given me a lot of extra time with my family and loved ones.In the neighborhood of probably two and a half years or so. Now that my options and time line are shortened I still try every day to make each day a special one. Hoping the scarring and other problems can be managed and dealt with.Don't give up the ship yet. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted January 4, 2007 Share Posted January 4, 2007 Barb, I'm so sorry you're having to deal with these additional health issues. You can't second-guess yourself on treatment you received in the past because, unfortunately, it's just a useless exercise. Lots of energy spent going nowhere. You've got plenty of fight in you, and when you know what direction to head in, you'll take on the new problems with spunk and grace. I'm sending extra prayers out for you today. Stay strong. Trish Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 4, 2007 Share Posted January 4, 2007 I too am so sorry to hear your having the dreaded long term side effect from chemo and radiation. ( I can Relate) However, I did my treatments 11+ years ago, and I gotta say, I honestly believe my treatments have bought me the 11+ time here on earth. When I did my treatments, they did say chemo and/or radiation could cause problems down the road. They never really went into detail as to what problems, but that's probably because they didn't think I would live 11+ years. But I do remember heart being mentioned, and diabetes, & leukemia as being a long term (down the road) side effect of chemo treatments. I asked how much damage the radiation would do to my heart and my doctor said, "none, we protect the heart by blocking it" Well, on that note, I have since learned she was pullng my leg and full of crap. But, to be honest I KNEW even 11+ years ago that radiation would and can cause heart problems. I had a girlfriend that had radiation for lc and 5 years after her treatments she died of a heart attack, and I will never forget what the surgeon said when he came out and said she was gone. He said, "There was so much scar tissue in her heart do to radiation that we couldn't do anything to save her." This happened before I was dx.d with my lc. So I DID know radiation could cause problems. I know that my heart problems are in part because of radiation and chemo, but I know it's not the only reason I have these problems. I look back at when I did my treatments and I say, "Treatments or Possible Death?" I opted for treatments, but I'm not sorry I did that even with my heart problems and all the other hoohaa I have going on. ((((((((((BARB))))))))))) Quote Link to comment Share on other sites More sharing options...
Welthy Posted January 4, 2007 Share Posted January 4, 2007 Barb, At the time, what choice did you have? Hopefully things will get better and you will find that positive side again. ((hugs)) Welthy Quote Link to comment Share on other sites More sharing options...
chloesmom Posted January 4, 2007 Share Posted January 4, 2007 Barb, In 2001, when I was getting ready for 33 radiation treatments for breast cancer, the radiation oncologist went over the possible side effects of radiation to my chest and one of them was an increased chance of lung cancer. At the time, I knew that my best chances of not getting breast cancer again laid with my getting radiation, so I did the radiation. Two years later, guess what? Lung cancer--directly behind the breast cancer site. From the chemo I got for the lung cancer (which I was told would help my chances of survival from 5-15%), I have a noticible hearing loss. I hate that, but I would take that risk all over again for those extra percentage points. I sure do understand your frustration, but I think this is the new thing that researchers need to work on.....managing the long term side effects of treatment for cancer. It used to be that they didn't seem to concern themselves about long term side effects because there weren't many long term survivors. I'd do it all over again for the chance to survive, and I think most of us would too. I hope your problems ease up for you. Cindy Quote Link to comment Share on other sites More sharing options...
marym Posted January 4, 2007 Share Posted January 4, 2007 Hi, I agree with all. You make the decision and then spend your time making that a decision that works. I believe there are things that can be done to loosen the esophagus - if that is the problem. Remember the choice of radiationwas versus something else undesireable. In my case, I had radiation to alleviate pain. My esophagus was tight for awhile but is now normal. But the pain is gone and that made this well worth it. Anyway, Hang in there. You are just in a new reality and sometimes it stinks. And sometimes you should feel badly and get it out of your system. Then you can get back to dealing with the reality and the good part of it. Hope you feel better and the doctor can find treatment to improve your situation. Best, Mary Quote Link to comment Share on other sites More sharing options...
Ry Posted January 4, 2007 Share Posted January 4, 2007 Barb- John also has damage to his heart from the radiation and chemo he received- but it saved his life. The body is an amazing thing-- especially the heart-- it will compensate for the damage. John has Superior Vena Cava Syndrome, the tumor has completely blocked his vena cava but his body has grown new vessels and the inferior vena cava has taken over the job and with medication his heart is working fine. So don't despair, you may be here a long time yet, give the ole ticker a chance to adjust. Quote Link to comment Share on other sites More sharing options...
carolhg Posted January 5, 2007 Share Posted January 5, 2007 I am so sorry to hear what the long term effects of chemo and radiation have caused you. Do you think this might be something that you could ask Dr. West about. There has got to be a solution for this problem that works for you. Carol Quote Link to comment Share on other sites More sharing options...
blaze100 Posted January 5, 2007 Author Share Posted January 5, 2007 Thanks for the words of encouragement. You made me feel much better. They told me the radiation could hurt my heart too. Who was thinking long term? It was so scary, I would have ate horse poop if they said it helped my chances. Hubby and I are taking a "Successful Coaching" course on-line right now, and just covered "winner thinking" and "loser thinking". I was definitely thinking like a loser yesterday. You guys are so right, second guessing is wasted energy. I have to work with what I have. So I continue to take my heart meds, do my exercises, eat my low fat foods. These are small steps that point in the right direction. And darn, I was going to ask Dr. West something but I totally forgot to check in. Barb Quote Link to comment Share on other sites More sharing options...
mary colleen Posted January 5, 2007 Share Posted January 5, 2007 Barb, glad you are feeling better. Everyone gets to have their moments - I have mine as well. We have something in common...I forgot the live chat was tonight, too. I haven't known what day of the week it was since approximately Thanksgiving! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 5, 2007 Share Posted January 5, 2007 Radiation... ...hit my thyroid. I'm overweight. I'm alive to b*tch about it. Yay, rah, radiation... Long term side effects? Yep, probably, most important word in that phrase is LONG. So I'll be fat for sixty years, guess I can handle it - that's why God created elastic waistbands! Perspective? If yer b*tchin', it means yer livin'. Keep doing that and you'll survive a good long time. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 5, 2007 Share Posted January 5, 2007 I agree with Becky. Any day you can get up and put your feet on the floor is a good one. My radiation problem has to do with tightness affecting the use of and feeling in my left arm and hand. I had a stay in the hospital/extended care facility this summer/fall, and the shoulder area (my resected thoracotomy area, which was extensively radiated) tightened up quite a bit --fibrosis, which is why the physical therapist kept speaking of radiation as the gift that keeps on giving. But -- ain't it grand to be here to b*tch? Chin up! XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
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