Kelly Posted June 2, 2008 Share Posted June 2, 2008 Since I am frantically trying to organize my mother's and my life in the event I am soon scheduled for surgery, I do have two questions. The first is that my bedroom is upstairs, but there is a hospital bed downstairs that my mom rarely uses. Is it difficult walking up and down stairs? The other is that I write a couple of columns a week for the local newspaper. I write them from home. Any idea how long it will take before I will be able to sit at a computer and type? I usually spend four to eight hours a week on the columns. I'd like to be able to give my editor an idea of the length of time I'll need off. Any advice appreciated! Kelly Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 2, 2008 Share Posted June 2, 2008 Hey Kelly. I had a left lower lobectomy in June of 2006. I was up and walking about very, very soon after surgery; however, I had the surgery via VATS which is far less invasive than the thoracotomy. So, I can only give you what I experienced based on my type of surgery. I was home in less than 2 days and was on minimal pain medication for about a week - I wasn't able to drive and that increased my desire to get off of them. I also found that if I took painkillers every 6 hours then I would over do in the exercise department (as I couldn't feel I was over-doing it), so I decreased it to every 8 hours. I was out walking on Day 3, increasing my distance with each day. I was told that continuing to move and continuing to do the breathing exercises with the spirometer is crucial. They will go over all of this in the pre-op session as well. As to time off work; again, that depends on the surgery and how extensive it is. At this point, it would be hard to tell your employer how much time you need off until you get the particular's of what and how they are planning to do the surgery. I too, work from home part-time, and still managed to sit at the computer to get my work completed. Again though, hard to say at this point what to expect. I know I sound like I'm really non-commital ...until you sit down with the surgeon though and find out where he is headed it is really hard to figure out how to plan in advance. I was fortunate that I didn't have to experience a great deal of waiting time and therefore didn't get a lot of time in advance to plan anything! I did have my mom come and stay with me to help out with my kids, meals, housework (apparently you can't do this for years -that's my story and I'm sticking to it!) for a week. I also found it easier to sleep propped up by pillows. I am a side sleeper and that was really hard to sleep on my back. There was very little room in the bed for my poor husband with the mountain of pillows behind me and beside me! So, all in all, I guess I really wasn't much help in answering either of your questions. I suppose you could write these two questions down as starter questions for your surgeon and perhaps he will answer them before you even get around to asking them. My surgeon was great at drawing diagrams and even though he knew I had a medical background he spent time explaining everything to me (since I was the patient I was clueless). One other thing I did before I went to the hospital was made up a few call lists. My husband called 2 or 3 people with how the surgery went, etc and then they called from their lists. I found that it alleviated him spending hours on the phone and my friends and family all appreciated that they were involved somehow. I also made up some meals ahead of time; however, also had friends and family who surprised me by bringing meals which was greatly appreciated. If someone asks what they can do to help - don't be shy to ask; whether it is a ride somewhere, a meal that needs to be prepared - whatever...people truly want to help but they don't know how. I am not very good at asking for things for myself, but I certainly learned quickly. Trust me, it made everyone around me feel needed and wanted and that they were helping out. When is the appointment with your surgeon again? Keep me posted and if you have any other questions I can't answer feel free to let me know . Sorry I was so long winded-BruceU can attest to the fact that I do ramble on! Take care Kelly. Hugs, Linda Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 2, 2008 Share Posted June 2, 2008 Hi, Kelly: Here's the link to a post I wrote for OncTalk shortly after my thoracotomy (which might be your "worst case" surgery scenario): http://onctalk.com/bbPress/topic.php?id=460&replies=3 To answer your specific questions, I didn't have any particular difficulty walking up and down stairs, but I took it very slow and made sure I was holding the handrail on my non-sore side. It would be better if you didn't have to. As the link describes, I found it best to sleep in a recliner chair, mainly because getting out of the chair was so much easier than getting out of a bed, which required rolling to the side, my most painful maneuver. One of the first things I did after getting home from the hospital, after assuring our golden retriever that I was going to be okay, was checking my email. No problem at all sitting at the computer and typing. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
luvmydad Posted June 2, 2008 Share Posted June 2, 2008 Kelly: My dad had is right middle and lower lobes and surrounding lymph nodes removed on May 2, 2008. He was in the hospital for 10 days, and they had him up and walking the day after surgery. Not far but his distance improved each day. Before he left for surgery we set up the hospital bed downstairs because we didn't know whether he would be able to do steps when he came home. (he has 7 steps to get to the upstairs). So he had the options of the hospital bed and the recliner on the main floor to rest and sleep in. He tackled those steps the day after he came home because he wanted to take a shower. He took it slow and steady but he did it. He now does the stairs 2 or 3 times a day. The doctors told him they wanted him to attempt the steps as soon as he got home. As for sitting at your computer...The only thing that dad can still do is to sit in an upright position. When he lays to flat he coughs to bad. He does "sleep" propped up in the hospital bed at night but during the day he is setting out on the deck or at the kitchen table. He just uses pillows under his hiney and behind his back. This isn't the recovery that the doctors told us it would be, but I put some of the blame on dad. He walks, but not as much as I think he should. He did say last night that he was going to contact the local rehab/therapy here to see if they can help him get going in the right direction. So my biggest advice is to walk, walk, walk. For the first while take your pain medication on time, not when you start to feel pain, and to use your spirometer every hour. Prayers for a successful surgery and quick recovery. Keep us posted. Teresa Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 7, 2008 Author Share Posted June 7, 2008 Hi Linda, Ned and Teresa! Thank you all so much for replying to my questions. I just discovered where this tread was! Still trying to figure out the message board, but think I've got it now. Linda, Sounds like you were lucky to have VATS, and congrats on your speedy recovery! I guess the doc will tell me about the spirometer and breathing exercises. And, that's funny about the housework! I wish! Actually, since I take care of my mother with dementia, we've had to make arrangements to have help come in for when I am in hospital. My sister will stay here also, and probably for a couple of days after I get home. The personal assistants for Mom will probably stay for a month or until I am able to care for her myself. Also, the call lists is a very good idea. I've already assigned one sister to be the major contact, she likes doing that sort of stuff. Ned, good idea about the recliner. I do have one for my mother downstairs, so will see what works best. We also have a hospital bed downstairs, so hopefully I'll find one of them comfortable. Thanks also for the OncTalk link, very interesting, and your advice re: constipation. I've had a burst appendix and my gallbladder removed, so that's a good reminder! Also, a good idea about putting frequently used items within easy reach. Teresa, we do have a hospital bed downstairs, so I'll play it all by ear on how I feel. I'm just glad knowing that I do have a recliner and the hospital bed in case I do need them. I'm hoping I can make it up the stairs, but there are a lot of them. So, we'll see. Now, all of this might be moot,as I see the surgeon on Monday. I have no idea what he'll tell me. He cancelled the needle biopsy, though, so I'm guessing he'll tell me the results of all the tests (brain and bone scan) chest CAT scan, etc. and whether he will proceed with surgery. Apparently I have a golf ball-sized mass in my upper right lobe. Maybe the other tests will reveal other things. So, I'll let the group know as soon as I can what he says. Hope you are all having a lovely weekend! Kelly Quote Link to comment Share on other sites More sharing options...
nonni Posted June 8, 2008 Share Posted June 8, 2008 Hi there....in answer to your questions...I had a RLL in sept 04 and NOT Vats...I live on the second floor and I had no problem going up and down the steps on my 2nd day home....The doctor urged me to take steps and walk walk walk and NOT to lay in bed....I took it easy but was no probem at all.... In answer to your second question....I don't think you will have a problem sitting at your pc after a couple day's as long as you are not too uncomfortable...I chucked the pain pills after a couple day's ..they were making me nauseous....yuk...tylenol worked just as well... Good luck on your surgery and God be with you and HE will... hugs...nonni Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 8, 2008 Author Share Posted June 8, 2008 Hi Nonni, Thanks for telling me about your experience. I read your profile, and that's great news! Today I'm nervous about my meeting with the thoracic surgeon tomorrow. I imagine I'll find out whether it has spread or is operable. Anyway, I have trouble with codeine and morphine. I can take codeine but I can't get into a deep sleep with it, just a light doze, and morphine makes me shake terribly, and I hate it. My family doctor said they have new drugs now so pain control shouldn't be a problem. I'm stocking up on plain Tylenol though! Quote Link to comment Share on other sites More sharing options...
cathyb Posted June 9, 2008 Share Posted June 9, 2008 Hi Kelly. I'm new here, too, and just wanted to wish you well today w/your appointment. I had a RL and L a few days later, a RML with VATS. Stairs weren't much of a problem but then, again, I'd had a 7-week hospital stay due to complications, so I was pretty well healed by the time they booted me out. Only thing I can share is to listen to your body and re. future columns and writing deadlines, be good to yourself and commit to one thing: getting yourself well again. Everything else can take a back seat. Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 9, 2008 Author Share Posted June 9, 2008 Thanks, Cathyb, I'm nervous about the meeting, feels likes the most pressure-intense interview I've ever gone to, but will let the forum know what he says. Cheers! Kelly Quote Link to comment Share on other sites More sharing options...
Bruce u Posted June 9, 2008 Share Posted June 9, 2008 Hi Kelly Good luck on your meeting with the surgeon. I see that you have met Linda ( LovesLife ) . LOL I had my upper left lobe removed by VATS. Was walking around on the 3rd day and was working on the computer by the 5th day. In moderation of course. Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 9, 2008 Author Share Posted June 9, 2008 Met with the thoracic surgeon today and, well, at least I don't have to have an operation! He says, on the basis of all the tests so far that I have advanced local lung cancer (8.5 cm tumor) and that it looks like I have enlarged lymph nodes around the trachea, main windpipe to my right lung. He said that is a common site of early spread of lung cancer. My brain and bone scan were clear. He said next that he would schedule a PET scan for me. I'll hear in two weeks when that takes place. Then he will also perform a mediastinospy and bronchoscopy on Aug. 5. Once the type of cancer is determined, then it's on to chemo and radiation. He said it is controversial to do surgery if the cancer is in the lymph nodes. So, by the sounds of it, I must be pretty far along. Has anyone else had a similar experience? I don't really know what to think right now. Any advice or insights? Thanks! Kelly Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 9, 2008 Share Posted June 9, 2008 Kelly, Glad you got some answers today. All that planning for a surgery that isn't going to happen, huh. That's the way it goes with this disease. You can never anticipate every possible event. I don't know where you are from or if you are going to a hospital or cancer center but waiting until Aug 5 for a definitive diagnosis and staging sounds like a terribly long time to wait. I waited just a little over a month and that seemed like forever. I'm IIIb lung cancer but don't have a tumor so hopefully someone will come on to post you soon with info about what to expect. Hang in there, Judy in Key West Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 9, 2008 Share Posted June 9, 2008 (((Kelly))) - well, that certainly wasn't the news you were expecting to hear. I beleive that Dr. West at the GRACE website has had postings regarding surgery and lymph node involvement. Perhaps you can check over on that site for more information (cancergrace.org). It was great news that the bone/brain scan were clear. I'm sure there will be other folks along soon to help you out with your questions that have similar situations to yours. I will keep you in my prayers Kelly and will be here when you need me. Hugs, Linda Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 9, 2008 Author Share Posted June 9, 2008 Ain't that the truth about all that planning for surgery being for nothing! Sorry I wasted so many peoples time. Maybe someone else will benefit from this thread someday. So, you're right, by the sounds of it I won't know until after Aug. 5 what type of LC I have or what treatment to expect. That will be four months of waiting for treatment, since I had my chest x-ray mid-May. But, I am in Canada where health care is covered by government, so maybe that is acceptable. It seems like an awfully long wait. Kelly Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 9, 2008 Author Share Posted June 9, 2008 Thanks, Linda. I'll check it out now. Kelly Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 9, 2008 Share Posted June 9, 2008 Kelly - Just wanted to add - I know we are in different provinces but waiting until August 5th is absolutely ridiculous! I know that during the summer things get backed up somewhat; however, that to me is much too long to wait. You sound like a go-getter to me and I would suggest that you start phoning and writing anyone who will listen...media, newspapers, whatever! I suggested that a lady here in Alberta contact the College of Physician's and Surgeons as she wasn't getting in very quickly either and that seemed to help in her situation. Your GP must be aggressive in getting you in quicker and I really would voice my opinion very loudly to my GP if he/she isn't moving things along quicker. So Kelly, Canada or not, that wait is not in your best interest - that is at least 8 weeks before treatment would start - I don't think that is acceptable. Let me know if I can try and help you out somehow - perhaps we can brainstorm together. Grrr-this makes me angry that a person has to deal with these issues on top of dealing with a cancer diagnosis - seems to be the way these days, but I sure don't have to like it! Take care and stay strong, Linda Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 10, 2008 Share Posted June 10, 2008 Kelly: I most definitely agree with Linda on this one. August is too long to wait for the biopsy and, if cancer is confirmed, for treatment to begin. If the surgeon is correct and you do have locally advanced cancer, that would probably be stage 3, and you wouldn't want it to cross the line and become metastatic if at all possible. Please do post a question at cancergrace.org. In addition to Dr. West, who is in Seattle, there's a Vancouver oncologist/lung cancer specialist (Dr. Janessa Laskin) who is active on the GRACE faculty and frequently answers questions online. She would be in a good position to comment on the sequence of events as presently scheduled. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Kelly Posted June 10, 2008 Author Share Posted June 10, 2008 Hi Linda, I miscalculated - it'll be three months from the time of the chest x-ray until mid -Aug. That still seems like a long time to me to wait for treatment. One problem is that my city has just opened a big new regional hospital and has closed the local one, so there may be delays because of that. Also, my sister is checking out with a top onc who is a friend of ours if he thinks this timeline is acceptable. Part of the problem is that I have to get the PET scan (government funded) done at Sunnybrook Hospital in Toronto. We don't have a PET scan here in my city. So, I think my surgeon has booked my biopsy based on waiting for results from that. Would it make any difference if I had a private one done? Would he be able to get me into the hospital sooner for the biopsy? Dunno, and tonight am too tired to think about it. Kelly Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 10, 2008 Share Posted June 10, 2008 Hi Kelly. Time for me to jump in on this. Your current circumstances now look very similar to where I was at last fall. Please read my signature. Push push push for quicker exploratory surgery and an appointment at your cancer clinic. Get your GP to help you, mine did. Because the waiting is just awful. I have been through all the procedures you have described and a probable similar treatment path. So let me know if you have any further questions. Sandra, another fellow Canadian Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 10, 2008 Share Posted June 10, 2008 Hey Kelly - get some sleep - this will all be there in the morning to be dealt with. As to the PET scan though - yes, a private one would likely get you in quicker; however, I don't believe you should have to spend your hard earned $$$ to pay for one (they are expensive). The reason I paid for a private one is because in all likelihood they would have never offered me one given that they thought I had a lower stage. You should get a PET scan offered to you on a much quicker basis than months - if not, find out if you can pay privately and get it done quicker and see if the province will reimburse you if it was deemed necessary testing. Just a thought. Anyhow, watch something funny on tv and get some sleep. We are all here for you to help however we can. I am sorry you are having to go through this, I truly am. Hugs, Linda P.S. Having an onc as a family friend is wonderful - use any and all avenues to get treatment - I sure did and didn't feel at all guilty about it! Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 10, 2008 Share Posted June 10, 2008 Kelly, here's something else to throw into the mix (recent cancergrace.org discussions bring out some of these points, and I had a rather similar conversation in late 2006 with my own oncologist). Let's create three scenarios: Scenario A. The surgeon's initial impression was correct, you do have locally advanced cancer, and the cell type has been determined by a procedure such as mediastinoscopy and/or bronchoscopy. Because of the location and extent of the malignancy, surgery is not recommended. In that case, what would be the next logical step? Probably chemo. Scenario B. You get a PET scan sometime this month, and it indicates no suspicious areas outside of the chest. You then get the mediastinoscopy and/or bronchoscopy, it confirms a particular type of lung cancer, and surgery is not recommended. What would be the next step here? Probably chemo. Scenario C. You get a PET scan sometime this month, and it DOES show a suspicious area, perhaps in a bone or the liver or some other common site for lung cancer mets (realize that things other than cancer can cause a PET scan to light up). You then get the mediastinoscopy and/or bronchoscopy, and it confirms a particular type of lung cancer. What would be the next step in this case? Probably chemo. You can see where I'm heading with this. Although a PET scan will show metabolic activity which can't be seen on a CT scan, and is a valuable tool, it's not diagnostic in and of itself -- you still need that tissue sample to determine cell type and the proper treatment. So the question comes down to this: in any of these scenarios, or any others that can be imagined, will the information from a PET scan have any bearing on the initial treatment you are given? If "yes," I stand ready to be educated. If "no," and getting the PET scan is what's pushing the mediastinoscopy/bronchoscopy so far into the future, then why do it now? I realize I'm way over my pay grade here, but that's happened before, and I think these are questions that you should pursue. Hope you got a good night's rest. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 10, 2008 Share Posted June 10, 2008 Hi Kelly. Ned has given you lots of good information. I had all the other procedures, bronch, thora and media for staging purposes. After I discussed my treatment plan with the docs at the cancer clinic, it was recommended that I got for a PET scan for radiation planning purposes. I don't think a PET scan is normal for planning purposes, but I had a tricky spot on my lung because of plelural effusion (liquid on lung) and they really needed to nail down that spot to plan the radiation accurately. And if it is referred my med oncs, then my guess is if you live in Canada, the cost will be covered. I asked Dr. West the question re surgery, Ned I believe you told me where the exact link was. And I explored with my own surgeon and think I understood why it is not recommended. First line treatments other than surgery can be just as effective. Please let me know if you have any other questions. Sandra Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 10, 2008 Share Posted June 10, 2008 Good morning - Ned actually needs a raise (he is not above his pay grade) and he makes some excellent points. I was applying my PET to my situation; in which the surgeon told me I got in quicker and received a quick surgery date as he knew there wouldn't be any surprises going into surgery. It didn't change the fact that I was getting surgery - it was a tool to tell him they were on the right track in their staging, etc as I had absolutely no pathology testing done prior to surgery due to location. My SIL just recently had a CT scan and then a bronchoscopy done to diagnose and treat her lung cancer - no PET scan at all. They may do one in the near future; however, it didn't change the plans for the chemo she will be starting...that decision was based on the pathology results. So, I shouldn't have been in the role of only how it helped me, but where it wasn't a necessity for her. Sandra is another absolute sweetheart who will be more than helpful in all these areas where I have no expertise. As I am out of my scope of expertise Kelly, I will be now be your number 1 cheerleader and friend throughout. Sorry if I confused the issue on this PET scan - there are some very knowledgeable and wonderful people on this board (Ned and Sandra) to name just a few who can help navigate these areas. I hope you managed to get a little rest. Linda Quote Link to comment Share on other sites More sharing options...
shellit74 Posted June 10, 2008 Share Posted June 10, 2008 Kelly, As a caregiver, I can not express an opinion as well as the others, but I do definitly agree that Aug is just to darn long to wait for a decission about actual treatment(chemo/radiation) I would do like the others have said and be agressive about getting in sooner to have this all taken care of. Hope you had a good nights rest and are able to get some answers soon! Shelli Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 10, 2008 Share Posted June 10, 2008 Now that I've read my last message in the clear light of day, I see it needs some tweaking so it doesn't appear that I have a general bias against PET scans, which I don't. I've had two of them, both justified as being necessary to make treatment decisions, though the first didn't occur until I'd finished a full year of first-line treatment. Linda and Sandra explained the justification for their PET scans. One possibility I hadn't considered before is that your surgeon feels he needs a PET scan before doing the mediastinoscopy and/or bronchoscopy, perhaps to ensure he gets samples from the areas of greatest "uptake." My surgeon never expressed a need for PET data before doing my exploratory surgery, but now I'm starting to wonder if having that information would have enabled him to go immediately to the most active spots instead of wasting more than an hour on two sets of inconclusive samples via scope and then needing to move to a full thoracotomy. Would have saved money in the long run, though it wasn't coming out of my pocket (my pain was elsewhere). I've never read or heard anything that brought me to this line of reasoning, and I may be way off base, but there it is. I guess a question for the surgeon would be something like, "Do you need to see PET scan data before doing the mediastinoscopy and/or bronchoscopy?" If the answer is "yes," then the remaining issue is the timing. Your GP should be willing and able to bird-dog this for you. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
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