bohojack Posted January 7, 2009 Share Posted January 7, 2009 Mom's just finished her second round of chemo, and we've received some unsettling news from her radiation dr, that she was told by the thorasic surgeon he's not planning to do the surgery to remove her right lung. Initially he'd said 'before Christmas,' then it was 'after chemo and radiation,' and now he's not planning to do it??? I can't help but feel angry, betrayed, terrified ... I want to go punch this doctor in the nose. Mom had a recent CT scan, right before Christmas and the results that came back were pretty vague. The radiation doctor said that because it was so early and inflammation or scar tissue could account for some of the mass, that they couldn't really tell what progress was made just yet. So why is the thorasic surgeon, after seeing this one CT scan a month into treatment, now canceling the surgery? We were under the impression that was the only curative option... now what the hell are we supposed to do? Mom is trying to get an appointment with him to see what his criteria are for surgery and why she doesn't meet them - to try and gain some understanding of this situation. I'm still a little shocked. Not only did he suggest that curing this was around the corner initially, but when he changed his mind about the surgery he didn't even have the decency to set up an appointment with mom to talk about it and go over her options, nothing. We've called another doctor of ours and will be seeking out some other opinions aside from this doctor's, to see where we REALLY stand on this surgery issue. It's so frustrating and so disheartening. After only a month of treatment, with the possibility of just inflammation making progress hard to guage, how can they just drop the surgery option completely like that? Another thing, my mom has been told now that she's done her two rounds of chemo she can never have chemo again - that it's a once in a lifetime thing. Is this true? It doesn't seem right - I read the stories on here and it seems like people often have more than just a few rounds. Any words of advice would be really wonderful. This has been very unhappy news and all I keep doing is thinking 'why the hell' and getting angry at her doctor.. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 7, 2009 Share Posted January 7, 2009 I really no nothing about the health care situation in Canada BUT........ I would certainly get a 2nd or 3rd opinion. It amazes me how uncaring some doctors are. Hope your Mother gets some better news. Quote Link to comment Share on other sites More sharing options...
SandraL Posted January 7, 2009 Share Posted January 7, 2009 Well I would be very angry at the surgeon as well. And would make no bones about expressing how disappointed I was with how your mom is being treated. The surgery option is a tough one, and I think one less ventured here in Canada than in the States. I explored it myself. But for sure, get a second opinion and make sure you understand the why's. Re the chemo. Usually, one does not go back on to the same kind of chemo drug twice although I have seen exceptions to that here. But we definitely do move on to other drugs. See my profile! The theory being I guess that if if didn't work once, it is not going to work again. Please do not give up hope. Not operable does not necessarily mean incurable. Radiation and chemotherapy can have very positive effects as well. Keep us posted please and I hope you get the answers you need about the surgery option. I can completely understand your anger and frustration. Glad you came here to vent. Take care Sandra Quote Link to comment Share on other sites More sharing options...
CAL Posted January 8, 2009 Share Posted January 8, 2009 Bohojack, I feel for you -- and certainly think your mum should seek and receive answers as to why the change of plan. I too am in Canada (Ontario) and know that what is funded by our system varies from province - province. As far as I know, in Ontario (provided health is generally up to it) the system funds at least two lines of chemo (i.e. different types of treatment) as well as tarceva (a form of lung cancer treatment that targets the epidermal growth factor receptor and can have great results for some). Apart from this there are also clinical trials available. You may want to find out what is funded by your province/territory and then take it from there. Also, as Sandra and many others on this site will tell you there are treatments available and lots of hope. Many people here, including myself, have done very well with the standard treatments. I couldn't have surgery (position of tumour) but am still alive and very much kicking 18 months from diagnosis! Quote Link to comment Share on other sites More sharing options...
carolhg Posted January 8, 2009 Share Posted January 8, 2009 Please see another doctor as soon as you possibly can. Carol Quote Link to comment Share on other sites More sharing options...
bohojack Posted January 8, 2009 Author Share Posted January 8, 2009 Thank you all for your kindness. Mom and I talked today when she got home from radiation; she has an appointment set up with the surgeon and is still optimistic and going to look into other surgeons. She has the impression that the surgeon may not want to get involved unless there is a 100% chance of success, something to do with his track record. Imagine that... The surgeons with the highest success rates having them because of turning people down for potentially curative procedures. I'm trying not to dwell on it too much. I'm still angry that he didn't have the common courtesy to even let her know personally - that she had to hear it down the grapevine from the radiation people. She's as displeased with his conduct in this as I am and plans to address everything with him at the appointment. I know we should be grateful to the doctors and caregivers.. maybe I sound a little bit like a jerk for ranting like this, but I really don't see him as having done anything for us aside from dangle hope in front of our noses and then take it away. That's not to say anything is hopeless. We've certainly not lost hope and the will to keep battling through this. But I really think this doctor is an *ss for not even scheduling some time to talk to her personally about the situation now. Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted January 8, 2009 Share Posted January 8, 2009 Vent and rant away all you want we are hear to listen. I really hope you can get some answers with the surgeon and that you're mom lets him have it with both barrels. It is unacceptable not to tell her face to face. Like you said some do not want to ruin their track records. Get 2nd, 3rd or even 4th opinions. There is always hope. Keep us posted. Denise Quote Link to comment Share on other sites More sharing options...
Bruce u Posted January 8, 2009 Share Posted January 8, 2009 I certainly agree with other comments to get a second opinion. It sounds like this Doctor maybe more concerned with career development than helping his patients. Maybe surgery is not an option and if that is the case then you move on to another line of treatment. But you certainly deserve a meeting and be told why it is not an option. You didn't mention where in Canada you are located. I had my surgery in Edmonton and my Oncologist is at the Cross Cancer Institute. Please keep us updated and take care. Quote Link to comment Share on other sites More sharing options...
fillise Posted January 8, 2009 Share Posted January 8, 2009 Seek second and third opinions--until you are confortable that your questions and being answered and your doctors are listening to you and your mother. There are many people here that have been and third and fourth lines of chemo. I have never hear of getting chemo twice and never again. www.cancergrace.org is an oncologist mediated website where you can ask questions that will be answered by specialists. It is free and it is an invaluable resource. In the meantime, hang in there. We've all been on the roller coaster. So we can help you through it. Susan Quote Link to comment Share on other sites More sharing options...
dihen Posted January 12, 2009 Share Posted January 12, 2009 Agree with the others, get a second opinion. In my mom''s case, her first team of doctors would not even consider the possibility of surgery because they said her lung function was too low. Knowing that surgery was the only possible curative action, my brother personally wrote to a thorasic surgeon at the University of Penn (Dr. Larry Kaiser), and he agreed to take a look at her case. He did and within 6 weeks, he operated on her and removed her lower right lobe and some surrounding lymph nodes. We believe that without the surgery, she would not be here with us today. You will have fight and advocate for your mom to get the answers and the course of action that gives her the best chance for a cure! I wish you all the best...don''t give up.') Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 13, 2009 Share Posted January 13, 2009 Rant all you want. We are here to listen. And your outrage is justified. Your mom should have never heard the news of the surgery being cancelled from anyone but the surgeon. Although there are exceptions, surgeons generally have a reputation for lacking in bedside manner. I think that translates into lousy communication skills. The one of whom you speak certainly falls into that category. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
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