karenb

Hi Cheryl I'm a long time lurker and an occassional poster. I'm familiar w/your situation in particular because you started out w/my dad's staging so I've been following your plight and others since last September when he was diagnosed. So w/regards to pleural effusions. My dad had a decent sized pleural effusion before his surgery which was in April. He, at that point, had been through two full rounds/phases of chemo tx (taxol/carbo) and 35 radiation tx all concurrently then right before they were deciding whether or not they could do surgery (scans etc) they discovered this pleural effusion 600cc's worth. We were so disheartened at that point thinking he had come this far and now he won't be able to have this surgery they were telling him he would have. Well as it turned out...even to the doctor's complete and utter amazement this effusion was NOT malignant. His doctors told him that it was a 98% chance that it was and he should not be optimistic at that point but they wereWRONG!!! so you see, things aren't always as they seem to be. He, at that point, also still had active cancer in his lung that they were going to operate on but they had erradicated the mediastinal lymph nodes so that is what made him a surgical candidate. So since he had a negligible amount of cancer still left in his lung they were sure that this effussion was cancer but as I said it wasn't. So don't assume anything....as a matter of fact, they were almost ready to but the kabash on the surgery altogether when that pleural effusion showed up and they were considering not even draining it because of the assumption that it probably was cancerous but it wasn't. It was interesting to note that the reason the pleural effusion was there was because the lower half of this lung was absolutely destroyed but noone seemed to answer why was it like that....chemo???radiation???fibrosis???/pneumonitis???? His scans were of concern to them because it was very shadowy down in that region (which once again they assumed to be cancer and when they biopsied it pre-surgery they found none!!) So regarding your other "nodules" you just don't know whats going on in there until you get in there. This may come as a shock to you but these physicians are not always right!! I too sought the councel of TANN when my dad developed this effusion because it was very intimidating and she was a great source of info. Quick note on the kidney metastases. Oddly enough, three days before my dad's lung surgery, my husband's dad was having surgery on his kidney to have it taken out because it had cancer in it but that was his primary and only tumor. Apparently it had been there a while and they were in not hurry whatsoever getting it out so he obviously only has one kidney now and apparently radiation is the preferred tx for kidney cancer because chemo doesn't seem so have a great impact on it but again that is if that were the primary and it obviously is not your primary...so... I'm so sorry that you are finding yourself in this situation right now, I didn't like reading about it for you. The only thing about this effusion that you mentioned before is that if it is malignant than perhaps it can get you into the GVAX trial. I am really praying that God can take this bad situation and make it good as we know he is more than capable of doing that. Please take care. I'm praying for victory for you in this!!!!!!!!! Karen

How could anyone on this board not be inspired by your story and by your strength and positivity....it's infectious. Thanks for spurning some of us a little behind you in this race, on to victory.

I can't speak from personal experience but my dad experienced a cough w/a little bit of blood in the phlegm (yuk; I know!) and a little shortness of breath. After about 1/2 of his first round of chemo and radiation, he said it began to alleviate his symptoms; well at least the cough and blood part. He still continued to be a little short of breath through radiation and afterwards as well. I know he was so anxious about what to expect from chemo/radation and he had them concurrently so he took on all of it at the same time. He actually did fantastic w/the chemo. Very few problematic symtoms for him. No nausea at all just a little fatigue and on occassion some joint pain but nothing that a few tylenol couldn't take care of. He had no problems w/radiation until the end his esophagus was very raw and painful (they were radiating close to the esophagus in the mediastinal lymph nodes) and it was then that he lost alot of weight because he could not eat a thing and could barely drink unless he positively had too. It doesn't sound like you have any mediastinal involvement so you may not have these same side effects which is good. I'm sorry you have to be here; really really sorry but at least you know that everyone here understands how you feel and what you are going through. If you want more people viewing your posts you can try posting under the General forum and you might catch a few more there as well. Good luck and God Bless you!!!

Fantastic!!! I know how excited you must be!!!! Surgery is no picnic but well worth the opportunity that it affords!! Praise God!!

Is there any doubt that you were blessed!!! God has work for you yet; this was just an obstacle in the road!!! Take advantage and go and enjoy that family of yours. Praise the Lord!!!

I just wondered if anybody has any knowledge about downstaging in general but more more specifically after surgery. My dad started out at a IIIa but after two rounds of chemo and radiation he had surgery and had his rt lung completely taken out and in the path report they found a remaining 1 cm tumor and 1 active hilar node. His PET scan prior to surgery showed no other evidence of disease so technically he is NED right?? So why, at his pulmonoligist appointment to follow up after his surgery did the doctor tell him he is now downstaging him to a IIA?? Why not Stage 0000000!!!! How does that work or is it just a title or how does that go. Anybody w/info or input on this. My dad was taken back by this because he thought he was clear (at least for now). I say forever though because I'm an undying optimist !!. Thanks for your input!!!

As you can see from the above posts there are some amazing individuals here who never get taken advantage of by life but instead they take advantage of life....it's awesome to be a part of this group. At any rate, my dad just had his entire rt lung taken out 1 month ago. Besides some issues with fluid rentention (around the heart and lung), which by the way seemed to have resolved themselves, he is doing quite well. He has not been on any narcotic type pain meds since two weeks post surgery and he is not on oxygen either. He does keep it handy just in case but he is determined not to have to use it unless absolutely necessary. He relies on me to get information from people on this board as to "what is next" in his new journey as a one lunger. So I wish I could hook him up with you so he could talk with you about your experience vs. his. He is (was ) a IIIb squamous cell and was only supposed to have his rt lower lobe taken out and for some reason which I don't completely understand yet, 3/4 of his lung was just decimated ( i say because of radiation but I have no confirmation on that at all so...) they took his whole lung out and he was just a little surprised to find that out!! The bottom line however is he is grateful to be alive and given a second chance and intends to do everything he can so says he... and I hope he does and I hope you do too!!! Welcome to this board and I hope you find all the support and information that you need here!!

Hey Jamie I posted a reply to your post on dad being able to have surgery and I just saw this post so here I am again....As I had posted before, my dad was in your dad's identical situation so it has now been 2 1/2 weeks post surgery for him and I'll tell you in a nutshell how it happened for him... First of all, do not give up hope whatsoever on this because he may still have good things ahead for him. We didn't know if they were going to be able to do surgery on my dad either until he was prepped for the mediastinoscopy (biopsy on lymph nodes). We had to wait in the waiting room to find out whether or not they would proceed with surgery of the lung tumor removal or not. This is apparently not an uncommon procedure at all. Like you, our surgeon and pulmonologist was not too encouraging but the oncologist was a little more encouraging though. He had a good PET scan , just like your dad but they were still not going to be convinced until they got in there and saw for themselves what was going on in those lymph nodes that were once glowing and active but didn't appear to be anymore. So we didn't know if they were going to do "surgery" until the day of "surgery". So much to the surgeon's surprise he was able to proceed w/surgery but we/he didn't know until literally the last minute. So don't be discouraged at all they just need to be prudent and make sure everything is where it needs to be before they unneccesarily put your dad through this very painful surgery for nothing (meaning if he had active cancer outside the lung, the surgery does not really help him because it has already spread.) On another note however, my dad had a good PET scan before surgery except for a pinpoint dot on his lung in which they intended on removing in surgery (if his lymph nodes in the mediastinum checked out which they did) but we just got the pathology report back from the surgery in which they took his entire lung out (unexpectedly)as well as grabbing some surrpounding lymph nodes and much to our dismay one of the nodes came back POSITIVE!! This node did not show up on his PET scan so there ya have it sometimes things don't show up that should show up!!! That is why it is a good thing that they do the biopsy first because they can never be too sure you know what I mean. I think they are doing the right and prudent thing for your dad on this and I also think that you and your dad have good reason to be optimistic too.. really. It's just so hard because it's a waiting game...that being said though take heart because things are looking pretty good for your dad.!!!

Berisa, It really made me tear up to see your post. You did indeed turn him over to Jesus' hands from where he first came. His journey is complete and I know the Angels are rejoicing that one of their saints is back home!! Praise God for his new found faith and for yours also. May the Peace that surpasses all understanding just surround you and your family now and in the days to come.

Jamie, I realized that I did not directly answer your questions as to restaging and survival etc. I guess, I don't know right now for sure they are just saying he is "cancer-free". They did not touch upon reoccurrance or anything. He will be having his post-surgery appointments over the next few weeks so if they have anything of note to share then I will pass it along to you. I'm going to just enjoy this time while I have it and I hope you do too!!!

Well it seems that your dad and my dad are in the same boat!!! My dad was diagnosed in Sept. 03 w/NSCLC IIIB also and he had the same tx of carb/taxol w/concurrent radiation. Well since then he had to go back to chemo because they saw that the lymph nodes were still glowing and couldn't tell if maybe that was just scar tissue or what so just to be sure they sent him back for 3 more chemos of the same stuff. Well he just got out of the hospital from his surgery on Monday!!! His PET scan also showed no visible cancer outside a pinpoint dot in his lung still. So they went in for a medianstinoscopy to make sure the lymph nodes were just scar tissue (they were) and when they got to the lung it was utterly destroyed they think from radiation damage so he was just supposed to have his lower rt lobe removed and instead they had to take the whole lung. This was last wednesday, the most stressful day of my life because they didn't even know if they would be proceeding w/the surgery they had to wait until they did a few biopsies while they were in there just to be sure and if nothing turned up then they would proceed w/surgery and proceed they did!!! Truth be told they really felt he still had some active cancer in a node or two and also he had a little pleural effusion that they were sure they would find cancer in and much to their surprise.....they DIDN"T!!!! So it was about a 6 hour ordeal by the time they did all the tests etc etc then they finally came out and said we were able to go ahead with the operation and it was like the weight of the world was lifted off all of our shoulders!!! Our family practically took up the entire waiting room (I have 6 siblings and not to mention my mom and his brothers and sisters were all there too) We must have looked like we were in a crazy cult because we were all on our knees holding hands praying over him and the doctors and the hospital and everything We got our prayers answered and he had his surgery; he just found out yesterday that he only has one lung....we felt it best not to tell him until he was in a place mentally to be able to handle it. Praise God, he is doing pretty well considering what he went through (he is a stubborn ole' Italian mule; he is!!!) Since he still had a little cancer in his lung however they may send him back to chemo just for a little insurance that they got everything. So I don't know what will happen from here but I'm just enjoying the victory for now and giving praise to God for his goodness!! Good luck to your dad, I will pray for him; I will!!! I know your stress level; believe me.. Take care and keep us posted.

I totally agree w/Katie on this. Bring a tape recorder and write some notes down before you go in. I had to go to my dad's last three appointments here lately by urging from my sisters and mom because I had all this information too. I was literally frantic on the days leading up to these appointments. I couldn't eat etc.....because I was afraid of bad news or negativity from the doctors. Well we did indeed get alot of negativity and I thought I would just crumble but I didn't. It was completely business-like while in the office w/him. As stated by Katie when I got in my car to go home (I live 2hrs away from my parents) I sobbed. Somehow your desire to help them and keep things in check just takes over when you are in that room w/them. Good luck and get prepared!!!!!

Thank you all so much for your replies, it has definitely been an encouragement; for sure!!! If any of you are still following this thread of posts. Can I ask if anybody experienced a little bit of swelling/fluid retention in the legs and/or arms or both as well as a little swelling in the neck?? Also there now seems to be something irregular on his EKG since the surgery I'm not sure if it involves fluid or what. They don't seem to be really that freaked out about it but I'm of course a little uncomfortable w/this. Any insight would be greatly appreciated. Also, w/regards to the operating room incident, we are looking into that presently. His neck hurts now too probably because they dropped him!!!

Fay, you do indeed have an awesome and quirky way of looking at life!!!! Thanks for the amusing costume stories. Although I find them to be completely on beat w/my sense of humor, I'm afraid to say that right now my dad will not find it or anything else amusing to him because he can't get his pain under control post surgery. They want him to have a productive cough to get all that crud out but it nearly kills him to talk let alone cough. He used to comment that being on O2 would really just not be where he ever wants to find himself but in light of the fact that it may be a possibility for him verses having Stage 4 w/plueral effusion; I think he will now be changing his tune. For now we just need to take this post -surgery pain day by day because this is a real doozy!!! Holy cow; he looks like he has just been through the war. They obviously must of have dropped him or something during surgery because they busted his lower lip (three stitches) chipped his tooth and he has a cut on his head!!!!! Not only this but they struggled with the tube down his throat for 1 1/2 hrs so I'm sure his esophagus is feeling some pain too!!! What a nightmare, he looks so pathetic but nonetheless, he was blessed to even get the opportunity for surgery I'm so gratefulgratefulgratefulgratefulgrateful!!!!!!!!!!!!!! So thanks for the replies they really do help and humor me, in Fay's case!! Take care and I'll update on his progress as we go!!

I want to know if any of you have had to have oxygen 24/7 or only on occassion or how does that work. My father just had surgery yesterday to do a medianstinoscopy and thorascopy in the plueral area because he had a pleural effusion last month and the doctor's attributed it to cancer but just couldn't actually prove that he indeed did have any cancer left in that area. If there was no evidence of cancer they were going to go in for a RL lobectomy. I might add that the doctor's were not prepared in the slightest for the actual lobectomy because they were completely convinced that they would find cancer once they were in there. Well, much to their suprise there was absolutely no evidence of cancer cells or tumors after they drained the fluid, plucked out some lymph nodes and did a wedge resection but what they did find was a severly beat up right lung that was damaged to the consistency of "applesauce and dust" in the surgeons words. It appears that the lung nearly crumbled to the touch and the the damage was well past the area that the tumor was. It appears that the radiation/chemo regiment must have beaten the snot out of the good and the bad part of the lung. After a lengthy conversation, while my dad was still under anethesia , to the pulmonologist, they agreed that it was best to take the entire lung. Well, none of my family and I were ready for that one I can tell you. I think our jaws were all on the floor when we were informed of that. We did know, however, that this surgery could of had a very different outcome had they found any residual cancer in there so although we were all completely stunned w/the news, we were grateful ultimately. The problem is that my dad has absolutely no clue what his situation is. He was so terrified when they took him for surgery because he thought they would deem him inoperable and that would be it for him. Well he is still on a respirator and heavily sedated so he does not know that he only has one lung left. I know the first thing he will ask is "will I have to be on O2 the rest of my life or what am I looking at??" So could any of you answer that question for me because I really don't know. Is it just a given?? Why was his lung so beat up after rad/chemo?? Did that happen to any of you. His tumor was only 5cm big so why is the whole lung defunct?? Radiation Pneumonitis?? Pulmonary Fibrosis perhaps??? Also, what will his healing process be like?? How long?? Please help if you can!!! Thanks so much!!

I wanted to check in too so that you would know I'm keeping tabs on you!! I'm so sorry you are in need of that tube. I know my dad said that having his pleural fluid was no picnic to say the least. I will just continue to pray so hard for you that maybe somehow when you start back up with chemo it will make all the difference for you. I don't know exactly what the talc procedure is but is it something that could work for you?? Please take care!!

I don't post too often on this board but I had to reply to your post, because I too was following your situation and hoping to see you show up in the Good News category. I don't presume to know how it feels to be the cancer patient but I can tell you how it feels to be the child of a cancer patient. There is nothing more debilitating than to watch your dad have to battle this relentless beast. You hurt so bad for them inside that at times that is all you can think about really!!!! I'm 34 and have 3 children of my own and can barely stand the pain of seeing my dad have to be on this physical much less emotional rollercoaster; it is simply heartbreaking!! I take my cues from whatever it is he's doing. If he's positive and up, so am I; if he's low and feeling blue; so am I!! I still need him even if I have a family and life of my own now. Your kids are younger and still dependent on you they are watching you like a hawk I guarantee it!!! If you are physically and mentally able, I bid you to fight on; please. Your kids need you here to see them through the high and low times in their life. They only have one dad and you cannot be replaced. As Fay indicated in an earlier reply, Live as much life as God has ordained for you. Take advantage of every opportunity with them and your wife as you can. We are not judged by the amount of blessings we have in our life but with the MANAGEMENT of the blessings we have in our life. I hope God just showers you with many unexpected blessings right now in your time of need!!!

I'm sorry for what is going on with your dad. I know it must all be like a really really bad dream; I can only imagine your sadness. Your dad must have such a strong spirit to be able to endure all he has endured. I will continue to pray that God's hand will be with you through this all.

He has risen indeed!!!! He has conquered death; all Glory and Praise be to our Saviour, Jesus Christ!!! Have a very Blessed Easter!!

Oh my gosh Berisa!! That is the most awesome news. Well now we know his eternal life is sealed, let's work on this earthly life situation now!! T Thanks for sharing this and have a very very Blessed Easter!

I am so sick for you and your dad that things have taken yet another unexpected turn. Please know that we are still all praying for him. You and he have been so brave through your ordeal and I pray God's peace and healing hand to touch and comfort both of you.

Truer words were never spoken!!! I also have your same belief system. Prayer does change things. I , too, however,don't understand why God chooses to heal some and not others which is troublesome especially in accordance w/those on this board. There has been alot of heartache here recently and I often pray for God to turn things around here. You are a wonderful testimony to your beliefs in light of the fact that God chose to take your mother home to be w/him. I am still embroiled in an all out battle for my Dad's life. I do know that I get together regularly w/my five sisters to pray and speak scriptures of healing over my dad and hope for God's mercy upon him and so far I'm believing that a miracle will come to pass. His PET scan, a week or so ago showed no evidence of disease after six months of chemo and rad but he developed a pleural effusion towards the later part of his chemo and the doctors are determined that it is cancerous, even though after draining it, it came up negative. They will be doing sugery on him April 21 to do a medianoscopy, thoroscopy of the pleural area to look for evidence of cancer and then if nothing shows up, they will do a lobectomy on the RLL(just to be sure). We have been praying, fasting, etc relentlessly for everything to check out once they are in there for surgery and that he will be officially healed even in the doctors eyes (even though as far as we are concerned he is already healed ; they'll see!!) At times I get scared and feel so vunerable because God could decide to do the opposite of what we are praying for but the best gift I can give him is extreme faith in him even in these extreme circumstances; medically the docs think that things don't look so good for us. ("with man this is IMPOSSIBLE but not w/God; ALL THINGS ARE POSSIBLE WITH GOD!!!!). I'm just going to continue to stand on his promises and "hide in the shadow of the Almighty God." Not only this but try and continue to conduct my life in a way that would make my Savior proud!! (Especially after viewing "The Passion" but that is another post in itself. I was so humbled and heavy hearted after seeing that!! ) Thanks for your post divine healing has been on the forefront of my mind for the last six months along with my busy life w/my 3 children ages 4 & under and my husband etc.!!!I've got to rely on the goodness of God just to get me through my day w/out having a nervous breakdown at times!!

You will be in my prayers for sure. "I will give my Angels charge concerning you to guard you in all your ways" PS 91

I just knew my login didn't take; sorry about that. That message was from me.

There seems to be a resounding theme of Daddy's Girl all over this board. I too, would qualify for that category and I too just simply ache over my dad's current struggle It is so hard to see them hurt in a physical way let alone what is going on with them mentally!!! That may even be harder to take at times. I always detect a certain sense of fear when we discuss his condition and symptoms or whatever, and it can be so heartbreaking. (I don't blame him for feeling that way; obviously) Overall though, I would call him cautiously hopeful!!!! My dad too has voiced many of times that he doesn't want to go on O2 and I think it's just because what it represents to them. That, however ,is not always the case. If you look around this board there are several people who have battled viruses,pneumonia and many other demons and have gotten through just fine. I will pray for your dad to get this bronchitis thing cleared up ASAP and get him off O2 as well. I completely understand your feelings about this. You almost feel like you are mothering a 4th child probably. That's how I feel a little bit because I am your age too and have three children also (a brand new baby girl) I am always going back and forth between happiness, fatigue and nervousness!!!!! It's a crazy life. I have hope for you and all the others struggling with this beast!! I'm so glad I found this board you all are so kind and courageous (and funny aka snowflake!!)