Mary Corser Posted March 2, 2009 Share Posted March 2, 2009 My name is Mary Corser and my husband has NSCLC. He had a left pneumonectomy in January 2008 followed by 2 courses of chemotherapy. Unfortunately during the 2nd course he developed pneumonia and was in hospital for 2 weeks. Since then he could not have any more chemo so has been on Tarceva since November 2008, as a CT scan showed that there were cancerous cells in the chest wall. A recent CT scan showed no deterioration or spread of the disease but his oncologist has even so given me a gloomy prognosis which has really upset me. I know they cannot be sure so am hoping he is wrong. Geoffrey had radiotherapy last week for a lump on his chest which had recurred in the same place where he had a lump surgically removed last year. For the past 2 weeks or so he has had a bad cough, hoarseness of a lot of wind. The oncologist says the hoarseness is due to the big op last year but it has only developed recently so we are confused. I am so anxious about his condition and would like to hear from anyone else in a similar situation. I am encouraged by the success stories I have read about Tarceva and have to try to hang on to this. Mary Corser Quote Link to comment Share on other sites More sharing options...
Ry Posted March 2, 2009 Share Posted March 2, 2009 HI Mary- You are very fortunate your husband was a surgical candidate. I think at this point it is a good idea to get a second opinion. Going to another doctor to have your husband evaluated will give you peace of mind that you are on the right track and the hoarseness is nothing to worry about. Tarceva has been a miracle drug for many people- I hope your husband is one of them. Keep us posted on how he does. When my husband was first diagnosed we also had a doom and gloom oncologist- we switched doctor twice until we found an oncologist that would fight with us. You might want to think about changing doctors if this one isn't a fighter. Rochelle Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 2, 2009 Share Posted March 2, 2009 First off Kiss that prognosis goodbye and Kick it to the curb. If everyone here only made the prognosis there wouldn't be anyone here! Everyone here practically has beat that number LOTS OF TIMES!!! I am sorry you have to be here but glad you are. Anxious is natural so its ok. Until these great folks start rolling around and waking up around the world Might I suggest That Ya look at the good news Forums?? Lots of inspiring stories in there. welcome to the place no one wants to be but sure is glad they are!! Quote Link to comment Share on other sites More sharing options...
Mary Corser Posted March 2, 2009 Author Share Posted March 2, 2009 Thank you so much for your replies which are reassuring. Yes, I agree we should get a second opinion and Geoffrey's surgeon did recommend this as he does not appear to have a lot of faith in the present oncologist either. However, when the surgeon phoned Geoffrey last week and suggested this he, Geoffrey, said no he would rather stick with the present one. So I have to go with what he says. By the way, I am in the U.K. but have not been able to find a simple website over here. Was so pleased to find this one and read the success stories, particularly in relation to Tarceva, which has been available in the States for much longer than U.K. My husband is having is treatment privately so was lucky to get Tarceva as it is not available to everyone here yet. Mary Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 2, 2009 Share Posted March 2, 2009 Hi Mary- Welcome to this great site!!! Lots of really supportive and great people here. I am so sorry that you find the need to be here but hope you will find that this is a place for hope and strength for you and your husband. I agree with Ry - if you don't feel 100% comfortable with your husbands onc, go get a second opinion. My first onc who moved away actually encouraged patients to seek a second opinion so that they could feel like they were being treated correctly. And.......as fas as prognosis and statistics go, Randy is right - kick 'em to the curb and as far down the street as you can. Yesterday was my 29 month mark .........was told I would only be here 12 tops!!! And there are many, many more here with the same story!!! Please keep posting and let us know how both you and your husband are doing. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted March 2, 2009 Share Posted March 2, 2009 Hi Mary. So sorry about your husband. This is a great support group but you might also want to check out cancergrace.org. It's run by a lung oncologist in Seattle and he's fantastic at answering questions quickly and clearly. One caveat: Just in case you're not accustomed to dealing with private health care, know that, in the US at least, physicians don't bring in the big money if they don't treat their patients with the expensive stuff and, alas, many opt to treat when it may not be in the patient's best interest. This is the danger here with second opinions -- you can always find someone who's an 'optimist' and eager to bring in the big (lucrative) guns. I hope it''s different in the UK but I really don't know. Best of luck. Ellen Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 2, 2009 Share Posted March 2, 2009 Hi Mary. I am so sorry to hear about your husband but glad that you found this site. You guys have been through a lot already. Ignore the gloomy predictions....doctors that give them without being asked are shameful. And you know by reading the survival stories here that there is always HOPE and that none of us are a statistic. I can't comment on what your husband is currently experiencing but hopefully others will come along. Take care and keep us posted on how you and your husband are doing. Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 2, 2009 Share Posted March 2, 2009 Hi, Mary, and welcome! Geoffrey had radiotherapy last week for a lump on his chest which had recurred in the same place where he had a lump surgically removed last year. For the past 2 weeks or so he has had a bad cough, hoarseness of a lot of wind. I haen't had radiotherapy myself, but from what I've read I'd say it's VERY common to have throat problems for a time after radiation to the chest. Aside from cough and hoarseness, some people have difficulty swallowing/eating for a few weeks because of esophagus pain and constriction. Yes, I agree we should get a second opinion and Geoffrey's surgeon did recommend this as he does not appear to have a lot of faith in the present oncologist either. However, when the surgeon phoned Geoffrey last week and suggested this he, Geoffrey, said no he would rather stick with the present one. I've never heard of a case where a surgeon made such a point of suggesting a patient switch oncologists. It's really quite remarkable, and there must be something behind it beyond the problems you and your husband have had with this oncologist. Some patients do have valid reasons for not wanting to pursue a second opinion, but I don't know that it applies in your husband's case. I second Ellen's suggestion to check out cancergrace.org (GRACE, Global Resource for Advancing Cancer Education). Browse the site, and if you're as impressed as I think you'll be, register and ask questions. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 2, 2009 Share Posted March 2, 2009 I am glad you told us you are in UK. One of our members has a site over there and is a Champion of advocating for Tarceva for People because she started with her husband and has worked tirelessly to get it approved or Whichever term would apply. This Link is for her site in U.K. Her Name is Deanne Jenkins. We also love members here and want to help as much as we can. Deanne has experience in advocating the UK System so she may be able to help with the financial aspects and Political aspects!!! http://www.lc-action4life.co.uk/ Click on link to be redirected to her site! Hugs Prayers and Looking forward to getting to know Ya !! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 2, 2009 Share Posted March 2, 2009 Mary, glad you found us. I concur with Ellen and Ned about checking in with Dr West and his colleagues at cancergrace.org. Ned has offered some reassuring info about the hoarseness that I also experienced off and on for a significant time on Avastin. And I really think your husband should hear what Ned said about the surgeon recommending you see another oncologist. I wholeheartedly agree that it's no a commonplace even here in the States. Randy offered you a site in the U.K. but hope you continue to visit us here and keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Barb73 Posted March 2, 2009 Share Posted March 2, 2009 Mary, You have come to a site, as is often said, that no one wants to be a member, but are ever so happy they joined. Mary, if a surgeon advised me to seek out a second opinion (regarding your husband's oncologist) I would go for it. Doctors do not like to "talk negative" about another physician. So, perhaps, the "invitation" to find another oncologist might be well advised. Bill and I never returned to a doctor who failed to diagnose (but had very expensive tests he wanted to explore) and we have found our new doctors to be "in our corner," and fighting alongside our efforts. Four years later, we are here to enjoy each and every day - both the good, and the-not-so-good. Also, Mary, naysayers in the medical field are really "for the birds." Our oncologist told us that he would treat Bill's cancer as a chronic. God bless him. Barbara Quote Link to comment Share on other sites More sharing options...
Mary Corser Posted March 5, 2009 Author Share Posted March 5, 2009 Thank you all for your support. Geoffrey has been to his gp today and was told that the cough and hoarseness are due to an infection so to continue on the antibiotics. Just hope he is right. I think his surgeon initially would have preferred Geoffrey to see an oncologist on the NHS at a cancer centre, but it was not convenient for Geoffrey and, as he has private medical insurance through his job, he opted to see an oncologist privately instead. In the U.K. the private doctors are not necessarily better than the NHS ones but most of them do private work as well as NHS, as is the case with Geoffrey's oncologist. He has only had one session of radiotherapy for the lump on his chest and the oncologist hopes he will not need any more. This was last week and he had the cough and hoarseness before that so the radio treatment was not the cause. In this country you do not always get a lot of sympathy for lung cancer if it was caused by smoking! Thank you all. Mary Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 5, 2009 Share Posted March 5, 2009 Mary- We may be an ocean apart but some things are universal - believe me, here in the US people also consider us to have the "dirty" cancer since they wrongly assume that everyone with LC smoked. There are many. many members here who have never smoked a cigarette in their lives. And bottom line, no one deserves cancer. So just let that one roll off your back, there are ignorant people everywhere. You just continue to be your husbands advocate. He's a lucky man. Continued good luck with his treatment and please keep us posted. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
LovesLife Posted March 5, 2009 Share Posted March 5, 2009 Mary - sorry I missed your post earlier; however, I just wanted to welcome you and say I am sorry that you find need to be here. I think the distaste for lung cancer is everywhere - certainly no sympathy to be had. Like Patti said you just learn to let it roll off you. I always wonder after someone has made an ignorant comment how they would feel if it was present in their lives, either in themselves or a loved one - I am pretty sure their attitude would change in a heartbeat. Wishing him good luck on his treatment and better luck on working with his "gloom and doom" oncologist. Linda Quote Link to comment Share on other sites More sharing options...
Barb73 Posted March 5, 2009 Share Posted March 5, 2009 Mary, As has been noted, the aversion to lung cancer as the "brought-on-oneself" disease is universal. It's almost a mantra over here. Strangely, no one has that attitude about bladder, breast, colon, or other cancers. Yet - there has been a smoking link to some of those "other" cancers, as well. The whole thing is ridiculous. The idea is to cure, not to blame. It's much more productive to get the treatment, advocate for our loved ones and ourselves, keeping the goal in sight - that of success. Many good wishes to you and your husband. Please, if you are able, keep us updated on things. Barbara Quote Link to comment Share on other sites More sharing options...
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