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ColleenRae

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  1. Like
    ColleenRae reacted to Kwally3 in [59m] EGFR exon 18 turned to small cell. Diary of a [28m] caretaker.   
    Hi,
    I'll document updates here. I found reading a person's posts about her dad's experience with lung cancer very helpful and maybe this will do the same for future readers.
    Since last post, dad went through 3 rounds of chemo. for some reason, the side effects have been harder on him than normal. for the first week following infusion, he would be bedridden because of nausea. Nausea being worst when he gets up. he was prescribed two nausea medicines, compazine and zofran. but, they don't seem to work too well for him. Sometimes they work, other times not so much. Talking to another person, his dad also experienced varying effectiveness with the nausea medicines.
    in the first week after chemo, eating and drinking was difficult. he would feel the urge to vomit each time he tried drinking or eating. we actually had to go to the emergency room because dad was too dehydrated. He felt really bad in the middle of the night, so we took him to the ER. Turns out, he was dehydrated and they gave him sodium water IV for hydration. Doctor ended up scheduling him salt water IV infusions 3 days a week following chemo rounds. 
    in the 2nd round, we were prescribed antivan, which, when combined with zofran/compazine, is supposed to have synergistic effects against nausea. the downside is that antivan causes drowsiness and made him sleep all day. good news is that his nausea wasn't as bad and he was able to drink fluids.
    After the second round, dad also underwent radiation for some cancer on his vertebrae. Cancer didn't affect his central nervous system but did weaken the bone. the radiation was effective but the side effects (nausea) seemed particularly long lasting. we thought it would dissipate after a few days but his nausea persisted for the next 6 weeks and counting. that nausea wasn't so bad to require medicine. but, when getting up from a bedridden position or encountering certain foods, he would feel very momentarily very uncomfortable. 
     Then came the third round which doctor stopped after the second infusion because of severe side effects. I think the lingering nausea from radiation and dad's weightloss made the doctor put it on pause. Dad had lost 28 lbs from 158 to 130 and was hovering at around 140 at that time. Doctor wanted dad to be able to eat more and go up in weight. Plus, that chemo regimen was supposed to be just 3 rounds, so we were close enough.
     
    June 1.
    5 weeks after last chemo round, dad is up 6 pounds to 146 (yay!). we started walking around the neighborhood and he can now do 3 laps (~20 minutes). more than that and his toe hurts. we're trying to move around more because dad was bedridden and doctor says most important thing for him besides taking medicine is to fatten up and be mobile. being bedridden causes his body to become weak. 
    Unfortunately,  we got scans back indicating progression to the liver. The good news is that his other cancer sites did not change much. So, doctor finds it hard to explain why dad's cough is back. scans show essentially same size. this has been a pattern of cough coming back or a new pain occurring but the scans not showing any or significant increase in tumor size. Doctor didn't mention implications to dad to keep his spirits up but I know that liver progression is a bad prognosis. I was also hoping that the relapse would occur after 90 days. stats show that relapses that occur after 90 days respond better and longer to treatment. 
    However, there are few statistics on EGFR turned small cell, so nothing is certain because it is rare. it's harder to forecast how everything will play out.
    For second line, doctor prescribed Docetaxel. she stopped afatinib which he was still taking daily. Docetaxel is active against both the small cell and nsclc in his body. There is a new 2nd line drug, Lurbinectedin, pending FDA approval in August. Some data showed, I think, progression free responses of maybe 5 months? Doctor said Dad would switch to that if it is approved. I'm hoping that it will have good efficacy for his type of cancer.
    Meanwhile, I'm trying to finish immediate work stuff so I can take 6 months off. Doctor said we're at the stage where I should consider that.  
     
  2. Like
    ColleenRae got a reaction from Tom Galli in Precision radiation for lung nodules   
    Excellent information and advice Tom Galli... Thank you very much.  I have been reading a lot this evening and the link was very helpful (also had questions to ask, which I have printed). I have two questions for you, if you don't mind...
    You stated "Rather than search for clinic that has precision radiation equipment, I'd focus on finding a radiation oncologist you are comfortable with and letting the doctor pick the treatment location". I agree that the relationship with the radiation oncologist is of primary importance, but how do I let the doctor pick the treatment location? I may really like a radiation oncologist in Seattle, but he's not about to pick where I live (2+ hrs away). He/or she is going to choose the clinic / hospital they are associated with. I'm getting tired, sorry, but I'm not sure I understand this part. 
    My second question is WHY is radiation being suggested? I read the following on the link to the Lungevity page discussing radiation treatment: "SBRT is often recommended for early-stage patients (stages I and IIA with no spread to lymph nodes who either cannot or choose not to have surgery."  I'm not sure what stage I'm considered now with this new nodule. Am I still stage 1a? How would they really know? I did not have lymph node involvement two years ago, but what about now? I have not been told I cannot have surgery nor have I chosen not to have it.  No one has even discussed a choice with me (maybe my surgeon will when we speak later this week although he did mention radiation as a future treatment the last time we spoke).  Is it because I had a prior lobectomy? My lung function is still considered good. I know I'm old (!) as I'm heading towards 62 years in a few days, but I wouldn't think that is considered advanced age, or maybe I'm in denial...ha! How will they know what type of cancer this nodule is if they blast it away / if it's never biopsied? Wouldn't it be useful to know for any other future recurrences? I've never had any biomarker (?) testing done / none was done when first cancer was surgically removed. It seems to me it would be a good idea to know if this tumor is the same as the last one for future treatment if needed.
    I realize these are all questions I will need to ask the doctors, so please don't think I am expecting you to answer them...! The wheels are just turning tonight and I'm thinking out loud here! I think I'm anxious about the appointment and should really get some sleep before I have to run out in the a.m. I have not been anywhere - no enclosed spaces, no grocery stores, etc. for almost six months now. Unbelievable. I'm anxious about having to go inside the doctor's office. Really wish they could have done a consult via telemed with COVID lurking about.
    Thanks again, Tom  I'm trying to stay the course and you help keep us all on track.
    Colleen
  3. Like
    ColleenRae reacted to Pattymac in Precision radiation for lung nodules   
    Tom, Thanks for all that information, this is quite a learning experience for me! good luck Colleen with your appt. today! Please let us know how it goes!!
  4. Like
    ColleenRae got a reaction from Tom Galli in Suggested Questions for Radiology Consult tomorrow?   
    Tom... My bad! I need to be very precise in what I am saying. I felt some panic when I read your post and had to go to the clinic web site to make sure I'm seeing a radiation oncologist... I am. Thank you for educating me! Thank you for the questions as well - great starting point. I've been reading Lungevity's info re: Radiation Therapy as well.
    Teri - I am registered for this weekend... Thank you for reminding me that there will be sessions for both radiaton and chemo.  I plan on attending.  I guess this will be the week for learning.
     
  5. Like
    ColleenRae got a reaction from Cin in New - Scared   
    Hi Barbara,
    I, too, want to congratulate you on getting the lung CT... No, the news is not good to hear, but much better than having a cancer there you are not aware of!
    I had a lobectomy in Oct 2018 of my right upper lobe. I ended up with Stage 1a, adenocarcinoma NSCLC and fortunately did not require any additional treatment at that time.  I, too, was really freaking out about the chest tube - I'm sure I read somewhere that it was extremely painful when it was removed. For some reason, that really stuck with me and frightened me as well - and I worked myself up into an anxious state over it prior to surgery. It really was a waste of energy to worry about! I had surgery on a Monday and went home on Thursday. I'm trying to remember (that should give a bit of a clue, not a very memorable experience!) but I think the chest tube came out the day after surgery. I was still fairly well drugged at that point, but I remember getting very anxious and even a little belligerent with the P.A. who came to remove it.  She was talking about sending me home, taking out the tube, etc. and I remember yelling that I did not want to be discharged early, etc.  In any case, I was not very cooperative, but she pulled the tube and it was over in a flash. I don't recall feeling any pain (that could have been the pain meds) but there was blood that splattered - but don't let that freak you out.
    It's a good thing you found this and you will know more once you have a pathology report.  I was scared as can be but overall things went fairly smoothly. I had to return to the hospital about 2 weeks following my surgery for a pleural effusion (they had to drain fluid from my lung - no anesthesia - right in the Dr's office - it really was a piece of cake and made me feel much better!). I think my recovery took a bit longer compared to what some people have experienced here, but I was walking 90 minutes a day shortly after the surgery.  Walk and keep walking! It helps so much both mentally and physically!
    I have been getting scans regularly (about every 6 months) since the 2018 surgery. My surgeon felt the surgery was very successful and deemed I was "cured". Well, I've learned that can mean many things. Five months after the surgery another small suspicious spot showed up in the upper left lung. We've been watching it. It's grown from 5mm to 8mm but is remaining stable. They suspect it is another slow growing cancer and it will likely need to be treated with radiation - so I am, once again, trying to educate myself and not be afraid of what I don't know. What I think we all need to keep in mind is that a cancerous nodule may be removed successfully and "cure" that particular area of one's lung, but that does not mean the cancer won't find another area to develop in.  That is why continued follow-up with your doctor(s), CT scans, etc. is vital.  I firmly believe if we can catch cancer in the early stages we can keep it under control and even possibly "cure" it - adding to the quality and length of our lives. I don't want this to sound judgemental, at all, but do try to quit smoking if you haven't. I smoked for close to 40 years and quit cold turkey six months before my lobectomy. It was very hard the first few days; I'd always used smoking as a crutch for stress. My lung capacity is still quite good but I can tell my breathing has changed. I can't stand the smell of smoke now. I'm angry with myself for smoking for as long as I did, but so grateful I stopped.
    Wishing you the best and so glad you are finding support and information here.
  6. Like
    ColleenRae got a reaction from Pattymac in Precision radiation for lung nodules   
    Thank you, Tom.  I had just read about the Abscopal effect!
    One of the main things that has kept me positive about radiation and dealing with recurrences is your story... Thank you for continuing to give back to all of us and encourage us. I really doubt many of us would continue to participate here in this forum as you do after all this time. 
    I forgot to bookmark something I found on line a few days ago and can no longer find it. I was trying to see who provided Cyberknife SBRT in my state and found a site (I think it was the NIH). It said the cancer clinic in my area has "tomography" ("Tomography is imaging by sections or sectioning through the use of any kind of penetrating wave"). I saw some other locations where it specifically stated SBRT or Cyber. Do you know what the difference is, if any? The cancer clinic's web site that I'll be going to doesn't specifically say they offer cyberknife.  Is cyberknife interchangeable with SBRT? If I'm going to get this done I'd like to make sure I go to the right place! (Actually, I really want to go to YOUR radiation oncologist!)
    Also, did you have fiducial markers placed? I'm also trying to learn what the difference is between targeted therapy, proton therapy, etc. A lot to learn. Thank you!
  7. Like
    ColleenRae reacted to Tom Galli in Precision radiation for lung nodules   
    Ladies,
    There is uncertainty without a biopsy, but that is minimized somewhat by your surgeon's characterization of the nodule "filling in." Non cancerous nodules don't fill in and don't  normally change is size or volume.
    Perhaps your doctors suggested a PET/CT that can determine metastatic disease, but slow growing cancer tumors often do not express SUV (Standard Uptake Values) consistent with metastatic disease.
    I understand your reluctance for a biopsy given the nodule location. So that leaves you three choices: do nothing, surgery or precision radiation. Each choice has risk.
    I have a bias for precision radiation. I had 5 recurrences and CyberKnife SBRT finally killed the stubborn tumor in my lung. Moreover, I've had no recurrences for almost 13 years. There is a secondary effect of precision radiation, not yet conclusively proven, but acknowledged by the medical community: the Abscopal effect. It is explained in this link. I believe this is what caused my very stubborn cancer to stop recurring.  
    In another thread I suggested questions for CollenRae to ask of her radiation oncologist.
    Stay the course.
    Tom
  8. Like
    ColleenRae reacted to Tom Galli in Suggested Questions for Radiology Consult tomorrow?   
    ColleenRae,
    Questions for the radiation oncologist, at least I hope you are seeing a radiation oncologist and not a radiologist.  The former treats cancer with radiation while the latter interprets scans and x-rays.
    Assuming you are seeing a radiation oncologist, here are some questions that come to mind.
    How confident are you that this 8mm nodule can be "fried" by radiation? What method or methods of radiation would you use to treat the nodule? Are these methods covered by my insurance plan? Would you recommend chemo concurrent with radiation or after radiation or no chemo? Tell me why radiation is the best method to address this nodule. Stay the course.
    Tom
  9. Like
    ColleenRae got a reaction from Pattymac in Precision radiation for lung nodules   
    Yes, there must be information / reasons for this that we aren't aware of (but we'll hopefully soon learn!).  It DOES NOT make sense to go through months, years of CT scans and anxiety if we could just zap these away as they pop up. I know there are side effects to radiation to be considered. I really do need to learn more.
    I'm hoping for the best for you / all of us, as well!
  10. Like
    ColleenRae got a reaction from BridgetO in New - Scared   
    Hi Barbara,
    I, too, want to congratulate you on getting the lung CT... No, the news is not good to hear, but much better than having a cancer there you are not aware of!
    I had a lobectomy in Oct 2018 of my right upper lobe. I ended up with Stage 1a, adenocarcinoma NSCLC and fortunately did not require any additional treatment at that time.  I, too, was really freaking out about the chest tube - I'm sure I read somewhere that it was extremely painful when it was removed. For some reason, that really stuck with me and frightened me as well - and I worked myself up into an anxious state over it prior to surgery. It really was a waste of energy to worry about! I had surgery on a Monday and went home on Thursday. I'm trying to remember (that should give a bit of a clue, not a very memorable experience!) but I think the chest tube came out the day after surgery. I was still fairly well drugged at that point, but I remember getting very anxious and even a little belligerent with the P.A. who came to remove it.  She was talking about sending me home, taking out the tube, etc. and I remember yelling that I did not want to be discharged early, etc.  In any case, I was not very cooperative, but she pulled the tube and it was over in a flash. I don't recall feeling any pain (that could have been the pain meds) but there was blood that splattered - but don't let that freak you out.
    It's a good thing you found this and you will know more once you have a pathology report.  I was scared as can be but overall things went fairly smoothly. I had to return to the hospital about 2 weeks following my surgery for a pleural effusion (they had to drain fluid from my lung - no anesthesia - right in the Dr's office - it really was a piece of cake and made me feel much better!). I think my recovery took a bit longer compared to what some people have experienced here, but I was walking 90 minutes a day shortly after the surgery.  Walk and keep walking! It helps so much both mentally and physically!
    I have been getting scans regularly (about every 6 months) since the 2018 surgery. My surgeon felt the surgery was very successful and deemed I was "cured". Well, I've learned that can mean many things. Five months after the surgery another small suspicious spot showed up in the upper left lung. We've been watching it. It's grown from 5mm to 8mm but is remaining stable. They suspect it is another slow growing cancer and it will likely need to be treated with radiation - so I am, once again, trying to educate myself and not be afraid of what I don't know. What I think we all need to keep in mind is that a cancerous nodule may be removed successfully and "cure" that particular area of one's lung, but that does not mean the cancer won't find another area to develop in.  That is why continued follow-up with your doctor(s), CT scans, etc. is vital.  I firmly believe if we can catch cancer in the early stages we can keep it under control and even possibly "cure" it - adding to the quality and length of our lives. I don't want this to sound judgemental, at all, but do try to quit smoking if you haven't. I smoked for close to 40 years and quit cold turkey six months before my lobectomy. It was very hard the first few days; I'd always used smoking as a crutch for stress. My lung capacity is still quite good but I can tell my breathing has changed. I can't stand the smell of smoke now. I'm angry with myself for smoking for as long as I did, but so grateful I stopped.
    Wishing you the best and so glad you are finding support and information here.
  11. Like
    ColleenRae got a reaction from LexieCat in Precision radiation for lung nodules   
    Hi Pattymac,
    I'm glad you turned to this site - there are some very well-informed people here to help.
    I had a similar situation. I had my first lung CT in 2016 and there were some small nodules that weren't too concerning at that time, but I had a history of smoking, so that put me at greater risk. I had another CT about six months later and we started watching one small nodule in the upper right lobe, in the middle, deep and in a very difficult place to biopsy.  We continued to watch. It grew slowly and became more dense, but still remained small (around 8 mm). In 2018 I had another scan and I was told it was likely cancer and we discussed radiation or lobectomy. The radiologist felt he could zap the nodule, but he was not willing to provide treatment without a biopsy. After some research, I learned the biopsy posed it's own risks due to the location of the nodule and even if it came back showing the nodule was not cancer, the doctors would not be satisfied (i.e. biopsy sample could have a high false negative). A biopsy, in my opinion, seemed like one unnecessary step at this point and I wasn't too thrilled about the risks; I felt I'd just as soon have surgery. My other option was to have a lobectomy - a risk though, not knowing if this was indeed a cancer. I ended up having a PET scan and the uptake was something like 3.7; enough to convince the surgeon and me that this was a likely cancer and he was willing to proceed with the surgery.  I'm glad I did, as the pathology report confirmed it was cancer and I am confident my surgeon was able to remove the entire cancer in that area.
    I think I might have opted for radiation versus lobectomy (just to avoid surgery) had the radiologist been willing to do so. But without a confirmed pathology report that the nodule was cancer, he was not willing to provide radiation treatment. From what I have read, however, surgery is still considered the gold standard in treating these small nodules with very good outcomes.
    Almost two years since the lobectomy (surgery is all I had; staged 1a with no lymph node involvement), I am now being followed for another slow growing small nodule in the upper left lobe. I am meeting with a radiologist tomorrow a.m. as my pulmonologist has requested. The surgeon I had, however, felt comfortable in recommending another scan in 12 months, and did not mention radiation treatment. I am very torn between the two doctors' recommendations at this point... pursue radiation now or keep watching and waiting on this one.
    I will look forward to hearing what your radiologist says after you meet on Wednesday, and I will share what I learn tomorrow from the radiologist I am seeing if it's helpful.  Hopefully you will get some good, sound, experienced advice from others here regarding this.
  12. Like
    ColleenRae got a reaction from LexieCat in Precision radiation for lung nodules   
    Wish I knew why in your case as well... it must be frustrating.  When was your last PET scan? It sounds like you've been watching this quite carefully, so I would be wondering the same thing - why radiation had not been mentioned before.
    Will look forward to what you learn.  You sound very positive and pro-active; that will serve you well!
  13. Like
    ColleenRae reacted to LexieCat in Suggested Questions for Radiology Consult tomorrow?   
    Ooh, I just made an appointment for a radiation oncology consult next week! I will probably be getting radiation for the spot to my sacrum, as well as for the tumor and lymph nodes in my chest.
    So I'll be watching for suggestions, too--thanks for asking the question.
    I'm sorry about the house, but I can understand your reasons for canceling right now. I hope before too long you'll be able to go forward with this.
    Sending a hug of encouragement!
  14. Like
    ColleenRae got a reaction from Tom Galli in New - Scared   
    Hi Barbara,
    I, too, want to congratulate you on getting the lung CT... No, the news is not good to hear, but much better than having a cancer there you are not aware of!
    I had a lobectomy in Oct 2018 of my right upper lobe. I ended up with Stage 1a, adenocarcinoma NSCLC and fortunately did not require any additional treatment at that time.  I, too, was really freaking out about the chest tube - I'm sure I read somewhere that it was extremely painful when it was removed. For some reason, that really stuck with me and frightened me as well - and I worked myself up into an anxious state over it prior to surgery. It really was a waste of energy to worry about! I had surgery on a Monday and went home on Thursday. I'm trying to remember (that should give a bit of a clue, not a very memorable experience!) but I think the chest tube came out the day after surgery. I was still fairly well drugged at that point, but I remember getting very anxious and even a little belligerent with the P.A. who came to remove it.  She was talking about sending me home, taking out the tube, etc. and I remember yelling that I did not want to be discharged early, etc.  In any case, I was not very cooperative, but she pulled the tube and it was over in a flash. I don't recall feeling any pain (that could have been the pain meds) but there was blood that splattered - but don't let that freak you out.
    It's a good thing you found this and you will know more once you have a pathology report.  I was scared as can be but overall things went fairly smoothly. I had to return to the hospital about 2 weeks following my surgery for a pleural effusion (they had to drain fluid from my lung - no anesthesia - right in the Dr's office - it really was a piece of cake and made me feel much better!). I think my recovery took a bit longer compared to what some people have experienced here, but I was walking 90 minutes a day shortly after the surgery.  Walk and keep walking! It helps so much both mentally and physically!
    I have been getting scans regularly (about every 6 months) since the 2018 surgery. My surgeon felt the surgery was very successful and deemed I was "cured". Well, I've learned that can mean many things. Five months after the surgery another small suspicious spot showed up in the upper left lung. We've been watching it. It's grown from 5mm to 8mm but is remaining stable. They suspect it is another slow growing cancer and it will likely need to be treated with radiation - so I am, once again, trying to educate myself and not be afraid of what I don't know. What I think we all need to keep in mind is that a cancerous nodule may be removed successfully and "cure" that particular area of one's lung, but that does not mean the cancer won't find another area to develop in.  That is why continued follow-up with your doctor(s), CT scans, etc. is vital.  I firmly believe if we can catch cancer in the early stages we can keep it under control and even possibly "cure" it - adding to the quality and length of our lives. I don't want this to sound judgemental, at all, but do try to quit smoking if you haven't. I smoked for close to 40 years and quit cold turkey six months before my lobectomy. It was very hard the first few days; I'd always used smoking as a crutch for stress. My lung capacity is still quite good but I can tell my breathing has changed. I can't stand the smell of smoke now. I'm angry with myself for smoking for as long as I did, but so grateful I stopped.
    Wishing you the best and so glad you are finding support and information here.
  15. Like
    ColleenRae reacted to Mark C in 2 years NED, now a nodule :(   
    Hi Lexi,
    We will be watching for sure. I have been following along about your situation as well. You are the last person I thought this would happen to, 
    given your history and early stage dx. The random way these things happen is crazy.  Sending positive vibes your way. Thank you for all you do
    for me and all the others here. 
  16. Like
    ColleenRae reacted to Mark C in 2 years NED, now a nodule :(   
    Hi all,
    Just got my nodule re scanned & it is still "non specific", the same size & "more faint than on last scan and likely benign".
    I am quite happy today. Just thought I would update.
     
    Mark
     
  17. Like
    ColleenRae reacted to MBinOregon in 2 years NED, now a nodule :(   
    Hi Mark,
    After the right pneumonectomy back in May 2018, all the scans were "fine" (will explain the quotation in a sec) until the latest CT last month.  They saw nodules in the right pleural area, right armpit lymph node(s) and behind right collar bone.  Followed up with PET scan.  A long story short, the tumor board decided they have been there "a while" (although I had been told "fine".  Yes, it's confusing to me too, anyway) and rather than putting me through an invasive biopsy, they decided to watch more closely, so I'm on 3 month CT scan schedule (I did enjoy 6 month schedule for a years. Sigh).  Stupid nodules... 
    Sending you warm thoughts,
    MB
  18. Like
    ColleenRae reacted to Mark C in 2 years NED, now a nodule :(   
    Hi all,
    I have not been around in a while, as all was good and I was just living life. I had a left pneumonectomy 4/18, then 4 rounds chemo for 2b squamous cell.  All my scans to this point have been good until now. I have a new 3mm "non specific" nodule on lower right lobe. I see onc tomorrow but I am kind of worried. CEA numbers are still good and there was no mention of enlarged nodes or anything else. I suspect there will be a watch & wait approach? I was just looking for others thoughts or experiences with nodules showing up. 
    Thank you!! 
  19. Like
    ColleenRae reacted to LexieCat in New - Scared   
    The wedge pillow goes under your upper body/shoulders. If you're like me, you also like to have your knees bent, and you can always stick a pillow under your knees to make your back more comfortable (though my back doesn't seem to bother me if I'm on a wedge pillow).
    I think you will be very pleasantly surprised how simple this will all be. I actually have a video of a VATS surgery you can watch if you're curious and it won't freak you out (if watching surgery would upset you, don't watch). It's truly amazing they can remove half a lung through the tiny incisions they work through. I had three tiny incisions--I think the biggest was maybe 2-3 inches, the others only a cm or two. 
    I know what you mean about wanting to clone the good phlebotomists--I have veins that are tricky to get. I had a recurrence and will be starting chemo soon (most likely) and I DEFINITELY plan to have a port so I don't have to struggle with the IVs.
    You are gonna be just fine, believe me.
    Oh, and the reason you didn't find much about whether it hurts to remove a chest tube is probably that it doesn't.  
  20. Like
    ColleenRae reacted to Tom Galli in New - Scared   
    Barbara,
    Welcome here.
    First things first, most of us receive a surprise lung cancer diagnosis. Second and thankfully, lung cancer treatment has improved dramatically in the last 3 years with the introduction of many new and effective treatments. Last, I had a surprise diagnosis in 2004 and had my right lung removed and a year's worth of surgical complications, then 2 years of additional treatment. Bottom line is if I can live, so can you.
    You've already met some of our members and will likely meet many more. I've lost count of the number of chest tubes I had installed and removed, but I didn't feel a thing. Lexi suggests Lou's Thoracic Surgery Tips and Tricks to get you ready for your procedure. This a complete and informative resource. Here are some others. For IVs and blood draws, read this. For general tips on how to survive lung cancer, you might review this.
    Here is a passage from a book I wrote about my lung cancer treatment that describes my first chest tube removal: "I do clearly recall what transpired on the cardiopulmonary ward.  Encumbered with tubes, my first recollections were of their removal.  The nurse short counted me on the catheter, telling me she’d remove it on the count of three but pulling it quickly after announcing, “Two!”  Then Dr. Cheung and his physician assistant came in to remove a chest tube.  I asked if it would hurt, and he assured me it wouldn’t; but the physician assistant held the circular suture while Dr. Cheung grasped the tube, and they short counted me again!  Fortunately, other than a slight tightness from the suture closing the drain hole, I felt nothing."
    We are all petrified by the thought of lung cancer treatment. Everything is new, hard to pronounce and even harder to understand. That is why this forum is so important. We are a community of actual lung cancer survivors who have first-hand experience with every treatment you might receive. Ask your questions. Someone here will have a definitive answer.
    Stay the course.
    Tom
  21. Like
    ColleenRae got a reaction from DebM in CT Scan Results   
    Thank you, DebM.  I appreciated your response.  I had to re-read what I wrote (I certainly can ramble...ha!) I had meant to comment on having multiple small nodules that come and go, but got off on a different course.
    You were very diligent in following that nodule for years!  Lexie was correct - these new nodules are probably too small to biopsy and it is good that they've found them early and can track their progress. Some of my initial, small nodules have gone away in the past four years and some have now been labeled as scarring. Getting scans is a mixed bag where we are anxious for the next one but at the same time eager to know what's up. I liked your outlook - that you were going to try to enjoy the rest of your summer and not worry too much about the next scan. 
    I understand what you are saying regarding being inclined to be a little aggressive. I tend to feel the same way.  I'm right in the middle of buying a home with my adult son (he's on the Autism spectrum; continues to live at home with me so we're buying together). We're supposed to close Sept. 11th. The home is about an hour from where we currently live, but involves our crossing the Canadian border, so traveling back and forth for medical care is a concern right now with the border closure. We still have a very brief window to back out, so I'm stressing a bit more than normal... Wondering how I can do this and radiation before we move (if that's even possible)! I'm not as young as I used to be...!
    Thank you, again, for your response. I wish you - and your husband - the best as well. You two certainly have had quite a year.  We will look forward to your updates.
  22. Like
    ColleenRae got a reaction from Rower Michelle in CT Scan Results   
    Thank you, DebM.  I appreciated your response.  I had to re-read what I wrote (I certainly can ramble...ha!) I had meant to comment on having multiple small nodules that come and go, but got off on a different course.
    You were very diligent in following that nodule for years!  Lexie was correct - these new nodules are probably too small to biopsy and it is good that they've found them early and can track their progress. Some of my initial, small nodules have gone away in the past four years and some have now been labeled as scarring. Getting scans is a mixed bag where we are anxious for the next one but at the same time eager to know what's up. I liked your outlook - that you were going to try to enjoy the rest of your summer and not worry too much about the next scan. 
    I understand what you are saying regarding being inclined to be a little aggressive. I tend to feel the same way.  I'm right in the middle of buying a home with my adult son (he's on the Autism spectrum; continues to live at home with me so we're buying together). We're supposed to close Sept. 11th. The home is about an hour from where we currently live, but involves our crossing the Canadian border, so traveling back and forth for medical care is a concern right now with the border closure. We still have a very brief window to back out, so I'm stressing a bit more than normal... Wondering how I can do this and radiation before we move (if that's even possible)! I'm not as young as I used to be...!
    Thank you, again, for your response. I wish you - and your husband - the best as well. You two certainly have had quite a year.  We will look forward to your updates.
  23. Like
    ColleenRae got a reaction from DebM in CT Scan Results   
    Deb - Reading your story - and those of others, really makes me wonder what course is the right path to take... How much do our providers really know about these questionable nodules, specks, scar tissue, "stable" nodules, etc. 
    I had my first lung CT in 2016 and multiple small nodules / GGO's were found. Four, in particular, were pointed out as something to be concerned about. At the time,  I was told this is common and that they were likely benign. I continued to have regular scans until summer 2018. By that time, there was only one nodule anyone was concerned with, but it was small (I believe it was 8mm) and in a difficult location in the RUL, so a biopsy would have been difficult. I was advised this nodule (the others either weren't showing or had not shown any changes) had grown slightly and it was more dense - and that the time had come to have it surgically removed. No one could say with 100% certainty that it was cancer, but the odds were great that it was.  I had a PET scan - which they did not think would show anything due to the small size of the tumor, but it did light up. I ended up having a RUL lobectomy in Oct 2018.  Pathology confirmed this was adenocarcinoma. I was staged 1a with no lymph node involvement. No further treatment was required. I was in a bit of shock that it really was cancer - and that it had already been removed - but I was so grateful that I had decided to have the surgery.
    I worried a lot during this time - between 2016 - 2018. I was extremely anxious with each scan. (I still am). But I have come to recognize that I need to be grateful that I had almost two years of following this nodule until any action needed to be taken. While I don't want to, I know I need to accept that this is likely "the way" my life will go from here on out. When I read your story - and Lexie's - it's really a stark reminder that things can change very rapidly where lung cancer is concerned, without any forewarning.
    Two years after my surgery, I have another small nodule in the upper left lung that we are following. Most likely another adenocarcinoma in situ.  I think it first appeared in February 2019, less than five months after my lobectomy. It remained stable and then grew from 5mm to 8mm between Aug 2019 - March 2020 and they think it became a little more dense. I just had a scan this month, Aug 2020. The nodule has remained stable and there is no evidence of disease or metastasis in the right lung.  My pulmonologist is certain this 8mm nodule is likely another cancer like before and he is referring me to a radiation oncologist.  What's frustrating is that I had the images sent to my surgeon as well (different hospital / clinic and city). My surgeon sent me a note saying he agreed with the radiologist that this is likely another adenocarcinoma in situ but that this is good news that it has remained stable... He said he is even fine with me waiting one year to have my next CT.  I just sent him a note letting him know the local pulmonologist is referring me to radiology.  I got a message from the surgeon and he had his office call me immediately to schedule a time for us to talk next week... So, I am anxious to hear what his opinion is.  I find it frustrating when the providers I have to keep an eye on this don't agree on the future steps I should take
    My surgeon is a world class surgeon - very well known - a very optimistic (overly?!) type, but even so I have "trust issues"! He has stressed to me in the past that many times we can sit, watch and wait on these nodules... and he doesn't necessarily think my CT's need to be every six months (which I'm not always entirely comfortable with). My pulmonologist said the same thing - he believe I need CT's every 6 mos to follow post-lobectomy, but he would also be comfortable waiting one year for a CT on this new tumor. He said he's had patients where they watched nodules for eight years or more. But, even so, he wants me to discuss this with the radiologist to see what his threshold would be - to move forward with SBRT - without a biopsy. Pulmonologist does not think a biopsy will be necessary, that due to the fact I had a previous cancer, this is likely the same.  I just want to hear what my surgeon says as well about this.
    When I hear how many of you are getting caught off guard following months/years of clear CT's, well, it's disconcerting.  I can only imagine how you all feel, based upon how I think I would feel.  I know we all hope for the best - it hurts to hear when this happens to any of you.  You are all very inspiring to me.
     
     
  24. Like
    ColleenRae got a reaction from jack14 in CT Scan Results   
    Deb - Reading your story - and those of others, really makes me wonder what course is the right path to take... How much do our providers really know about these questionable nodules, specks, scar tissue, "stable" nodules, etc. 
    I had my first lung CT in 2016 and multiple small nodules / GGO's were found. Four, in particular, were pointed out as something to be concerned about. At the time,  I was told this is common and that they were likely benign. I continued to have regular scans until summer 2018. By that time, there was only one nodule anyone was concerned with, but it was small (I believe it was 8mm) and in a difficult location in the RUL, so a biopsy would have been difficult. I was advised this nodule (the others either weren't showing or had not shown any changes) had grown slightly and it was more dense - and that the time had come to have it surgically removed. No one could say with 100% certainty that it was cancer, but the odds were great that it was.  I had a PET scan - which they did not think would show anything due to the small size of the tumor, but it did light up. I ended up having a RUL lobectomy in Oct 2018.  Pathology confirmed this was adenocarcinoma. I was staged 1a with no lymph node involvement. No further treatment was required. I was in a bit of shock that it really was cancer - and that it had already been removed - but I was so grateful that I had decided to have the surgery.
    I worried a lot during this time - between 2016 - 2018. I was extremely anxious with each scan. (I still am). But I have come to recognize that I need to be grateful that I had almost two years of following this nodule until any action needed to be taken. While I don't want to, I know I need to accept that this is likely "the way" my life will go from here on out. When I read your story - and Lexie's - it's really a stark reminder that things can change very rapidly where lung cancer is concerned, without any forewarning.
    Two years after my surgery, I have another small nodule in the upper left lung that we are following. Most likely another adenocarcinoma in situ.  I think it first appeared in February 2019, less than five months after my lobectomy. It remained stable and then grew from 5mm to 8mm between Aug 2019 - March 2020 and they think it became a little more dense. I just had a scan this month, Aug 2020. The nodule has remained stable and there is no evidence of disease or metastasis in the right lung.  My pulmonologist is certain this 8mm nodule is likely another cancer like before and he is referring me to a radiation oncologist.  What's frustrating is that I had the images sent to my surgeon as well (different hospital / clinic and city). My surgeon sent me a note saying he agreed with the radiologist that this is likely another adenocarcinoma in situ but that this is good news that it has remained stable... He said he is even fine with me waiting one year to have my next CT.  I just sent him a note letting him know the local pulmonologist is referring me to radiology.  I got a message from the surgeon and he had his office call me immediately to schedule a time for us to talk next week... So, I am anxious to hear what his opinion is.  I find it frustrating when the providers I have to keep an eye on this don't agree on the future steps I should take
    My surgeon is a world class surgeon - very well known - a very optimistic (overly?!) type, but even so I have "trust issues"! He has stressed to me in the past that many times we can sit, watch and wait on these nodules... and he doesn't necessarily think my CT's need to be every six months (which I'm not always entirely comfortable with). My pulmonologist said the same thing - he believe I need CT's every 6 mos to follow post-lobectomy, but he would also be comfortable waiting one year for a CT on this new tumor. He said he's had patients where they watched nodules for eight years or more. But, even so, he wants me to discuss this with the radiologist to see what his threshold would be - to move forward with SBRT - without a biopsy. Pulmonologist does not think a biopsy will be necessary, that due to the fact I had a previous cancer, this is likely the same.  I just want to hear what my surgeon says as well about this.
    When I hear how many of you are getting caught off guard following months/years of clear CT's, well, it's disconcerting.  I can only imagine how you all feel, based upon how I think I would feel.  I know we all hope for the best - it hurts to hear when this happens to any of you.  You are all very inspiring to me.
     
     
  25. Like
    ColleenRae reacted to LexieCat in Appointment tomorrow (presumably to get biopsy results/discuss treatment)   
    No, and even if I did, they aren't allowing visitors to accompany patients right now. So either way, I'd be flying solo.
    Right now, I'm waiting for a call from my stepsister-in-law. I've been handling my stepmom's (91) Power of Attorney since my dad died a couple of years ago, and with everything going on right now with me, I want someone in her family to take it over. This is becoming a whole to-do among the siblings, and really I shouldn't have to be involved in these discussions, but I'll have to get whoever the new person is, up to speed. So hopefully they can come to an agreement and we can get this legal stuff taken care of. I've got my own financial/legal decisions to make. 
    I really can't stand family drama. We've had very little of it in my own family and I don't like having to deal with other people's.
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