niececola Posted September 30, 2003 Share Posted September 30, 2003 As you can see from below, my mom was recently diagnosed and began treatment this month. Because it took SO long, in my opinion (almost 3 months), to get a diagnosis, we decided to forgo the second opinion and start treatment immediately. I did not push my mother to get a second opinion b/c I knew she was comfortable with her onc and I also knew it would get a lot more complicated, or so it seemed, if we went to see another doctor. You see, my mom does not know her staging or what the statistics say and we are all ok with that. I sometimes worry that she needs to know how bad it is, b/c I am afraid IF the day comes and the chemo is not working, she will be so surprised by the grimness of the situation. I no longer truly believe this, b/c my Mom is not in denial, she knows this is serious and just wants to do what is takes to get better. I was afraid to be put into a situation that some of you have, where the doctor is not supportive and gives no hope. At least her doctor now understands her approach to this and is somewhat hopeful. These are my questions to you all. I feel that I have done my mother a great disservice by not pushing for a second opinion. What if this standard form of treatment does not work? What if a clinical trial is better for her? As we all know, time is of the essence and I am afraid that by not getting a second opinion, we might have made things worse. My thought right now, as it has been since we decided to begin treatment, was to wait until after her second treatment (on September 30) and get the results of the scans to see if the chemo is working. If not, then we would investigate other doctors. My last question to you, and if it is an inappropriate one for the boards, please PM me. We live on Long Island and are being treated at a facility close to my parent's house. We thought of heading into the city to go to Sloane, but heard many mixed opinions. Does anyone have any recommendations on doctors at Sloane or at hospitals on Long Island? Any advice on this and all my other ramblings will be GREATLY APPRECIATED!!! GOD BLESS!! Quote Link to comment Share on other sites More sharing options...
Mary Posted September 30, 2003 Share Posted September 30, 2003 Neicecola, I am not an M.D., this is just my personal opinion about what I would do. If I was not a candidate for surgery, I would try to get R.F.A. If I was not a candidate for that procedure, I would go to Staton Island University Hospital and get body radiosurgery. I attempted (almost got my sister there) ,however; another sister was pushing for Sloan and questioned the validity of body radiosurgery so she didn't go anywhere. Best of Luck, Mary Quote Link to comment Share on other sites More sharing options...
Ry Posted September 30, 2003 Share Posted September 30, 2003 First, Mary's advice is excellent and I am sure others will share with you their experiences regarding cancer centers near you, so I'll skip that part. Regarding a second opinion and have you jeopardized that by waiting, absolutely not. Most people I believe get started and then as they research other options, or get turned down for surgery, they go for another opinion. Also, carbo/taxol is pretty much the standard protocal to start and would most likely be her treatment anywhere you had taken her. So yes, go for another opinion. Is she getting radiation? Seems like she should be. All the best to you and your mom. Quote Link to comment Share on other sites More sharing options...
Debaroo Posted October 1, 2003 Share Posted October 1, 2003 I pm'd you, but I might as well post here, too. I agree that waiting on a second opinion in no way does a disservice to your mom. It is good to start treatment right away. But make sure that you have the communication that you need with the doctors, so that you can ask questions and request treatment options. I was told by my dads onc. that rfa (radiofrequency abation)would be an option to dads liver, but seeing as how the cancer is on his spine-he needed radiation to help with the pain first. He said that RFA may be possible in the future-but we had to handle the pain first. In my opinion, a second opinion can never hurt. I also feel that you must feel good about your moms treatment and doctors, follow your gut. There are many mixed reviews about every doctor out there...everyone speaks from their own experiences-and everyone looks for different things in a doctor. Some don't care about a doctors bedside manner, as long as he "knows his stuff", others find it as important, if not more... do what feels right for your mom. Unfortunatly, we must keep on top of the doctors, it isn't right that we have to, but it is the right thing to do. You must speak up if you are unhappy with her care, or with the treatment plan. I began by actually apologizing to the doctor for my questions and for my need to be very involved in my dads care and treatment, "You have treated many patients, but he is my ONLY DAD...I want to do right by him, as he has always done right by me...I hope you understand." and do you know what, he did. Take care, denise. Keep us posted. Ps..Ry, I love the picture! Its nice to finally see the face behind the wit! Quote Link to comment Share on other sites More sharing options...
BarbaraL Posted October 1, 2003 Share Posted October 1, 2003 niececola, I agree with what everyone else has said. You *should* get a second opinion, but as long as your mother is being treated with standard front-line treatment, the timing is less important. I finally got a second opinion about a month ago, as much for peace of mind as anything else. The Comprehensive Cancer Center where I got that second opinion pretty much concurred with everything my main onc has done and plans to do, except that main onc's plan is actually a bit *more* aggressive than they would be. I discussed the second opinion at length with him, and he explained in detail where he deviated from their opinion, and I agree with him! Also, getting evaluated at the CCC ties me into potential clinical trials, which my onc was *very* interested in when I discussed it with him. (Turns out he knows the doctor I saw at the CCC, and said he'd talk to him about it.) After my chemo is over, which might be now, or might be 2 more treatments, depending on CT results scheduled for 10/14, Iressa was the next plan. There's a clinical trial going on comparing Iressa to a new pill that looks much more promising. If it looks like a good fit for me, I'm in! Best wishes to you and your mom. Keep researching, and keep asking questions here. It seems like someone always has good advice and experience on every conceivable aspect of this damned disease! Barbara Quote Link to comment Share on other sites More sharing options...
berisa Posted October 1, 2003 Share Posted October 1, 2003 hi Denise, you should get a second opinion but keep on doing the treatment. Second opinion is necessary always. I always welcome all options that open bcoz you will have more choices to choose, my attitude is to collect as many info as possible, while you have a better picture with more information and knowledge, you can make a better, more suitable choice for your mom. You know, for a patient, it is difficult to do some researches on their own bcoz they may not familiar with using computer, they need more time to rest and enjoy their life etc..., we as a family caregiver, should help them doing that part, at least, one day, you could tell yourself you have tried your best. This is my advice. Take care by the way ! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 1, 2003 Share Posted October 1, 2003 Denise, Don't second guess your primary instinct to get treatment immediately and THEN think about a second opinion. I went in for the lobectomy with a diagnosis of cancer and nothing from an oncologist! The surgeon that I had the consult with was adamant about getting that critter OUTTA THERE and I went with it. My primary care physician had sent me to him when there were questions on an X-ray and then a CT because she said he was the best...and she's always been like having a doctor in the family. After surgery (read "primary treatment") I had a consulation with an oncologist who SUGGESTED a second opinion and sent me to MD Anderson for it. My local oncologist's suggestion was field trials due to my age and basic good health (with that extra "pudge" to feed off during treatments). Anderson's opinion is highly regarded and they pretty much concurred with my doctor except they didn't even recommend radiation (neither my oncologist nor Anderson held sway with traditional chemo in my case). Everything that Anderson suggested, my local oncologist was aware of and involved in to some extent. My second opinion just cemented my faith in the first opinion... Not to say that I'd never go for a third opinion if in the future I feel that my local oncologist isn't doing enough... On the most part, decisions don't have to be "final", medicine is a practice and cancer is a "personal" disease - must be extremely hard to find "one fix" when the darn disease is something an individual's body does! Not like hunting down and killing a standard germ or virus... Hang in there & keep the faith, Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
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