2weimies Posted February 19, 2007 Share Posted February 19, 2007 I have been trying to get in to see this doctor at Hopkins,brought all my films and reports last thursday.I heard nothing and called today was told they are on his desk...I waited... Called back before 4 pm ( when they close ) and was told we don't have it back from him yet so I asked how long should it take.I was put on hold.. a few minutes later this woman says I have 4 people to schedule before you You'll be hearing from us tomorrow...Puzzled I said so I'll be seeing the doctor this week ??she said No in march.I said Oh so he thinks its ok and I can wait..She then says he will see you on Saturday March 2nd and your surgery will be march 12th it is a 3 hour surgery and you'll be in here for 3 days.I couldn't breathe and said what??? what surgery??I have not even seen or spoken to this doctor, what surgery is he planning ????She goes on I'll need to bring you in sooner for PFT and pre op work.I said What??? she said breathing tests and blood work.I said what surgery???she said he will meet with me on the 2nd to discuss it... I pressed on and she said its not really my area but probaly a lobectomy or vats resection/HUH? I left work crying...I need to find a doctor to meet with and talk to.Is this hot shot so sure this is cancer that he is willing to operate without ever meeting me?? Is this standard?? does not sound like any doctor I want taking care of me . Initially I was bothered that I could not get an appt without him first reviewing all my tests and now this scheduling surgery without my input or permission?? How do I find a good thoracic surgeon who specializes in lung cancer in maryland? Please help!! I have a 8mmx9mm nodule upper right lobe. It uptaked the tracer 4.6 SUV on Pet scan...Its a plueral based nodule a typical for malignancy according to radioogist report. Quote Link to comment Share on other sites More sharing options...
Eileen Posted February 19, 2007 Share Posted February 19, 2007 So sorry for your fear. I had a lobectomy close to 7 years ago and met with my doctor before. I would say that is not normal, but I have never dealt with a big hospital like JH, How insensitive of them. It you do not feel right with this, go to another Dr.I know they scheduled my surgery the day I went to see him. but msybe it is just the nurse who is insensitive? maybe just a mix up? They should discuss everything with you first Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 19, 2007 Author Share Posted February 19, 2007 What is alobectomy, wher was your cancer< how did they do the surgery, What was the recovery like. Did you need further treatment. Are you disabled now? How big of an incision do you have and where is it? Can you tell I am in total panic ? Quote Link to comment Share on other sites More sharing options...
Eileen Posted February 19, 2007 Share Posted February 19, 2007 I had the upper right lobe removed of my lung--actually I did not have lobes like most people, he had to cut and sew and make a lobe--it appears I had one big lung recovery was fine for me, I am not at all disabled and commute 3 hours per day. A little pain , but I had an easy recovery, and I hope the same for you. I went back to work after two and a half months I was in hospital 7 days but that was because they had a leak in my draining tube, once that was fixed, I went home and went food shopping the same day early stage is very good--please don't panic--I know I did in the beginning, but as you can see , I am still here! and no further treatment needed , was a stage 1A although I get check ups--one time I needed a biopsy of enlarged lymph nodes, but it was just an infection oh forgot--incision pretty big--goes from under my armpit around the back almost up to my neck-guess around 14 or 15 inches but I don't care, I am alive! Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 19, 2007 Author Share Posted February 19, 2007 THat sound so awful and painful. Did they not know you had one lung w/o lobes? How bnig was your nodule? did it light up on PET scan? Were you in great physical shape before your surgery? I am not in great shape I don't exercise and am overweight although on weight watchers I have lost about 18 pounds last 6 -7 weeks.... Can you walk up stairs afterwards? I could not after my hysterectomy and exploartory sugery but they were abdominal surgery so maybe thats different. The scar sounds huge! I am so happy you are well and a living testament it can be done and one can survive. I have had such bad luck with surgery and am a terrible patient. I have a sister and daughter who are both nurses and I still could not recover well.I have a one year grandaughter and I want to live to see her grow up and my son graduate College.I am just terrified at this point.Do you know what a VAT resection is? THe receptionist mentioned that or lobectomy as possible surgeries.I guess I can ask more questions tomorrow if I am able to breathe when she calls. Thanks so much for responding I feel really alone. Quote Link to comment Share on other sites More sharing options...
Eileen Posted February 20, 2007 Share Posted February 20, 2007 was about 1.5 please don't feel alone, we are here for you I remember panicing too-- they did not know I had no lobes in my lung till they went in I do not know anything about VAT sorry do not feel alone--you can always email me if you want not sure about great shape, but I am thin Quote Link to comment Share on other sites More sharing options...
jang Posted February 20, 2007 Share Posted February 20, 2007 I just PM'd you. Please call or email me if you would like to talk. Quote Link to comment Share on other sites More sharing options...
gail Posted February 20, 2007 Share Posted February 20, 2007 Breathe, breathe, breathe I had a lobectomy almost 6 years ago and am doing quite fine. Surgery is surgery. My surgeon was very abrupt and to the point--scared the h@#@ out of me. At that time I was worried about a mets to the lung from the breast cancer. He was the one who mentioned lung cancer. And his words were "You better hope it's lung cancer" and immediately left the room. At that time I was clueless--now I know that if I had a choice between lung cancer or breast cancer that had spread to the lung, that lung cancer was the best option. I was exptremely panicked for the month prior to surgery. I could barely breathe. I was on an anti-anxiety drug, an anti-depressent drug, AND ativan for those times the first two didn't work. All this was before this lovely website came about. And before I knew about non-smokers getting lung cancer (of course thought my smoking 17 years prior caused it all) Stay with us and we will walk you through gail PS My theory on surgeons--no bedside manner, which is why they become surgeons--they come, they cut, they leave--and save the warm and fuzzies for the oncologist. But you WANT a goo, skilled surgeon--you aren't really talking to him anyway! Quote Link to comment Share on other sites More sharing options...
gail Posted February 20, 2007 Share Posted February 20, 2007 Something else my surgeon had said--it had to come out and be biopsied. The needle biopsy was inconclusive. gail Quote Link to comment Share on other sites More sharing options...
john Posted February 20, 2007 Share Posted February 20, 2007 VAT is Video assisted thorascopy. It is minially invasive surgery. A small incision is made and the surgery is done via a camera. There is a tiny incision (no huge scar). I think it is much easier to recover from. You could try Georgetown (Lombardi Cancer Research Center) for a 2nd opinion Below is a list of top thoracic surgeons from the Washingtonian magazine. Can't vouch for any personally http://www.washingtonian.com/articles/health/2052.html http://www.washingtonian.com/packages/topdoctors/ Quote Link to comment Share on other sites More sharing options...
Nick C Posted February 21, 2007 Share Posted February 21, 2007 I've observed a vats lobectomy and spoken to the Dr who performed it. He had many of his patients need nothing more than Extra strength tylenol... I wanted to address that first. As it seemed like a big concern. That said, let them schedule whatever they want to "reserve you a spot". Meet with the doctor when you apppointment is for. If following that appt you want a second opinion and want to postpone your procedure, go ahead. You don't HAVE to do anything. But carefully consider everything. And bring a family member or friend with you to ALL appointments if possible. You are understandibly scared, and it helps to have the consistent extra set of ears to go through the info...because it is tough and emotional. And please don't feel alone. We'll be here. Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 21, 2007 Author Share Posted February 21, 2007 I spoke with the scheduler from hopkins and she explained what she knew and arranged my appt to meet with the surgeon saturday march 3rd and I will have my pulmonary function tests and pre op work done the day before on march 2nd. She also suggested that the doctors nurse call me up and talk to me to help answer any questions and exolain the proposed surgery. so I agreed.She was really nice and so was the nurse who spent alot of time with me answering questions and explaining what happens.Basically They do a bronchoscopy(sp?) after I am asleep with general anesthesia and then they'll do a VATS resection and biopsy the nodule.If its malignant they will open me up and do the lobectomy right then.So I wont know till(if)I wake up.That is very scary to me. I told my other 2 children tonight and I worry about my son age 18 who is at college and is a silent ,quiet kid. I tried to play up the positive side that its really small and contained IF its anything bad..so hopefully they are OK with it. Its going to happen quite fast I suppose litle time to plan. I had a phone message from my pulmonologist who wanted to know where I was with getting a surgeon and moving on this!!I was surprised she was so concerned and followed up! I suppose I'll be seeing her in the future anyway for followup at some point either way right??? I guess I have come to see based on what the nurse and you guys have said that surgery is my only hope for a cure should it be malignant and the nurse felt that the docvtor strongly suspected that was the case. Its always something........ Thanks for your support I will need to try to get my head together before March 13th (surgery day) I appreciate your support and prayers. Quote Link to comment Share on other sites More sharing options...
john Posted February 21, 2007 Share Posted February 21, 2007 I believe the Dr can do a lobectomy via VATS no need "to open you up" in some cases. They can do the lobectomy via VATS. You can ask the Dr. I have read it is better to do a full mediastinal lymph node dissection. They are basically removing the lymph nodes to check for cancer. As people have said hopefully it is early stage, then the survival rate is quite high. Many surgeons have expressed concerns about the adequacy of VATS lobectomy as a cancer operation. Technically, a VATS lobectomy should be and, in the hands of skilled VATS surgeons, is the same operation with the same nodal sampling or dissection as is performed through a thoracotomy. Surgeons around the world are currently doing this. The true measure of any cancer treatment is survival. In a nonrandomized prospective comparison of VATS versus open lobectomy for stage 1A (T1N0) lung cancer, Sugi et al.[30] found that the 5-year survival was 90% and 85% for the VATS and thoracotomy groups respectively (P = 0.74). Although some surgeons have reported exceptional survival for stage 1 lung cancer after VATS lobectomy (94.4% at 4 years,[31] 86% at a mean 18.6 months)[3], others have reported the survival that is the same as reported with surgically treated lung cancer (72% at 5 years[32] and 77.9% at 5 years)[10]. It certainly appears that a VATS approach does not compromise the survival for lung cancer patients. Take care. Quote Link to comment Share on other sites More sharing options...
DrWest Posted February 21, 2007 Share Posted February 21, 2007 I just wanted to suggest an alternate possibility. I'm not a surgeon, but the thoracic surgeons I work with can have a tough time getting time scheduled in the OR, competing with all of the other surgeons at the hospital. It's POSSIBLE that you were put on the schedule as a placeholder to save time IF you decide to proceed with surgery after your initial visit. It's easier to cancel the time and end up not needing it than to try to get shoe-horned in, and the surgeon may just be trying to minimize your wait to actually get this taken care of. I am a medical oncologist, so I handle the chemo side of things, but if I'm reviewing the records and films of a patient before their first visit with me and it looks like they'd benefit from seeing a surgeon or radiation oncologist I work with, I'll often try to schedule a visit for them with our best specialists within 24 hours, often later that same day. It's not meant to overwhelm or pressure them, but rather to try to make things as quick and convenient for them as possible, since many are very anxious to develop and start a treatment plan, and many of my patients are coming a distance to see me. Sometimes, after meeting the patient they'll either say that they don't want or need to see that specialist, and they don't need to avail themselves of the appointment. More often they're very happy to have the process expedited rather than require another week and another trip. I certainly don't know the specifics here, but it's possible that the surgeon just wants to minimize your wait IF you decide to pursue treatment there. -Dr. West Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 21, 2007 Author Share Posted February 21, 2007 Yes I beleive you may be absolutely correct about the OR time and it seems the doctors nurse felt that after reviewing all my films &cat & PET scan and reading the reports he felt surgery was the correct next step. I however was ill prepared to hear that...strange though cause when the pulmonologist said I must see a thoracic surgeon I thought really ? why? I guess I was /am in denial. I simply cannot belive that I a non smoker can have lung cancer its just too impossible to think about. I am also worried about the surgery and results. Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 21, 2007 Share Posted February 21, 2007 Lung cancer is not just a smokers disease. We have others here that have never smoked or never were around second hand smoke and yet they too have lung cancer. The truth is, no one deserves lung cancer. I'm so sorry you are having to go through all this. Smokers and nonsmokers alike totally understand your fear. I hope you'll stay with us, and let us walk the walk with you. These people are a wonderful support system. Keep us posted. Quote Link to comment Share on other sites More sharing options...
gail Posted February 21, 2007 Share Posted February 21, 2007 Catching your update-- Two times I had lumps removed from my breast, and two times I had to wait for results. They were not fun days. With the lung surgery, I went to sleep, the nodule was removed and biopsied, and when I woke up they told me it was lung cancer. It was much easier to hear that time because I was feeling no pain on my painkillers. Oh, I did crash later, One step at a time gail Quote Link to comment Share on other sites More sharing options...
Kaffie Posted February 22, 2007 Share Posted February 22, 2007 I had the vats, it is so much less invasive. I Googled it and watched a video of the procedure, it didn't look too scary Quote Link to comment Share on other sites More sharing options...
nonni Posted February 22, 2007 Share Posted February 22, 2007 Hi There... I am from MD...and I also pm'd you if you want furthur information....Just want to tell you...you are going to one of the best hospital's in the world...People from all over the country come to John Hopkins...They are #1 in Lung surgery in MD..and Franklin Square Hospital is where I had my surgery is #2...and I only went there because my family doc and pulm doc recemended my surgeon...Or else I would have definately went to JH.... I had a lobectomy in Sept 2004...1A and was very very doable...and let me tell you...My surgeon was/is one stone face 'dude'...abrupt and right to the point kind of guy...but I love him to pieces...I don't care about his bedside manner ...I cared how skilled he was...He is the chief at FS...He made my surgery..almost a 'piece of cake' .(with out the icing thou) ..recovered quickly and my scar is only about 5 inches long...had no rib pain at all...just some at the surgery site..but was off of pain pills in 2 day's after I got home...So good luck...you will be in great hands and be thankful that you could have surgery...take care...PamS. Quote Link to comment Share on other sites More sharing options...
jang Posted February 22, 2007 Share Posted February 22, 2007 Mickey, As one who had the VATS almost two years ago, I just wanted to add that although it is less invasive, they are still removing a lung, or part of a lung. I had 3 incisions, one about 3" under my breast, one about 2 inches on my back and a small incision on my side for the chest tube. I was prescribed percoset and really needed it the first week. OTC meds would never have worked for me. The recovery is definitely much easier than the "normal" lobectomy, but I didn't want you to think that you would be back to work the next day. I took 10 days off work, then worked at home for a month. I didn't know until I woke up after surgery that I had the VATS. The dr. said he would try, but didn't know until he got "in there" if the VATS would be doable. I was so happy when I woke up to know that he was able to do it using VATS. Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 24, 2007 Author Share Posted February 24, 2007 Next staurday is the dauy I met with the surgeon and I'll already have done my PFT's and pre op. I am bring my DH and my sister who is a RN. I will try and formulate a list of questions to ask and collect as much info as I can. The VATS procedure sounds like it would maybe best recouperatively if possible.But with my history of PE I have no idea what the surgeon has in mind just yet. I appreciate all your concern and support and must say I feel at home here and am grateful to have met all of you caring people. I'll keep you all posted.Surgery is scheduled for march 13th. Quote Link to comment Share on other sites More sharing options...
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