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Curt

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  1. Like
    Curt reacted to TD1 in Hi I am new- Met exon 14 success story   
    Hi! I was told to repost as newcomer. I hope it is here. Last year in June 2017 they found a 16 cm mass (yes, cms!) in my right lung. Met exon 14 adenocarcinoma. I am a never smoker! It spread to lymph nodes and showed signs of pleural effusion so stage IV, now stage IIIa. With crizotinib my tumor shrunk to 6cms. They did a pneumonectomy and the reports show complete response. Of course, I realize that I am incredibly lucky and thank the great surgeons, oncologists and research team at UCSF. They are the best!! Are there any long term survivors with MET exon amplification out there? I hope everyone on this site to have good outcomes, hope and on a path that leads to healthy living with our cancers! 
  2. Like
    Curt reacted to Rower Michelle in So frightened   
    Got the prayer posse going here in KC! 
  3. Like
    Curt got a reaction from VG500 in 11 MM Nodule Plus Multiple Small Nodule   
    Congratulations on such an incredible outcome.  I’m in a similar situation as you were. I just opted for the same procedure.  I’m hoping for similar results.  🤞🏻
  4. Like
    Curt got a reaction from Tom Galli in So frightened   
    The days before scans have been the most anxious for me.  The days between them and the follow up are also very difficult.  I’m not sure I have any wisdom for how to deal with it other than just try to find distractions for a break from the worry.  Forgetting about it all together is a lot to expect, but looking for small breaks from it is a good goal to try and achieve.  Try staying with the things you do in your daily routine.
    When my primary suggested I follow up with pulmonologist I jumped that step and went directly to a local hospital that had a lung cancer screening center.  I didn’t quality for the preemptive screenings, but given what I already knew and my family history they agreed to see me.  I did feel like I was running the risk of going to see a doctor that always sees cancer and may assume it is as opposed to one who always sees lungs and may assume something else.  I decided to err on the side of caution.  I’d rather think it was cancer and be wrong then think it wasn’t and be wrong.  My insurance company does not require referrals.  You do need to be your own advocate.  No one will have a greater level of urgency for your care then you do.  Even with your persistence the process will be frustratingly slow.  My follow up after my PET was a week.  There is a good chance even after this you won’t know much more.  I didn’t.  I’m six months in, three CT scans and a PET with no conclusive diagnosis.  They gave me the option of waiting another six months for another CT to see if there is any change.  I’ve opted to do a biopsy.  If it’s cancer they will do the lobectomy at that time. If it’s not they will only be taking a small 1 cm piece if my lung and I will have the peace of mind knowing it’s not cancer, and sill be 1 cm lighter 😀.
    If you have a local hospital with a lung cancer screening program in place you may reach out to them for guidance.  I do also believe that you can make an appointment without the referral, you will just need to get it before your appointment so that your insurance company will pay for the visit (if they require referrals). 
    You should also find the best in your area.  Most doctors refer people within their own hospital/doctor network.  Do your research and find the one you are most comfortable with that takes your insurance, not just the ones your primary refers. My process started in one hospital network in their ER, went to my primary network, to the cancer screening hospital and I’m now following up with and having the biopsy done at Sloan.
    Another suggestion is ask for copies of all reports and for all your scans to be put on discs.  Read your reports with the doctor during your follow up.  The report is written by a radiologist.  The doctor will look at their interpretation, will look at the scans and make their own interpretation.  Make sure you go over the report with them and ask them to help you understand what it says if you don’t.  Ask them to have copies of your scans ready for you at your follow up.  You will want those if you decide to follow up elsewhere and gathering them later is very time consuming and can be frustrating.  
    My last suggestion is write down your questions before your follow up make sure to go through them before you leave the doctors office.  If you have someone you trust to go with you bring them and let them know they are there to listen and make sure all your questions are answered.  Make sure whoever it is can keep a level head in a stressful situation and is a good listener.  If the doctor will let you them record the conversation.  It’s amazing how little you are able to retain when under that much stress. 
    Good luck with your scan, think positive thoughts and let us know how it goes.   
     
  5. Like
    Curt got a reaction from LexieCat in So frightened   
    The days before scans have been the most anxious for me.  The days between them and the follow up are also very difficult.  I’m not sure I have any wisdom for how to deal with it other than just try to find distractions for a break from the worry.  Forgetting about it all together is a lot to expect, but looking for small breaks from it is a good goal to try and achieve.  Try staying with the things you do in your daily routine.
    When my primary suggested I follow up with pulmonologist I jumped that step and went directly to a local hospital that had a lung cancer screening center.  I didn’t quality for the preemptive screenings, but given what I already knew and my family history they agreed to see me.  I did feel like I was running the risk of going to see a doctor that always sees cancer and may assume it is as opposed to one who always sees lungs and may assume something else.  I decided to err on the side of caution.  I’d rather think it was cancer and be wrong then think it wasn’t and be wrong.  My insurance company does not require referrals.  You do need to be your own advocate.  No one will have a greater level of urgency for your care then you do.  Even with your persistence the process will be frustratingly slow.  My follow up after my PET was a week.  There is a good chance even after this you won’t know much more.  I didn’t.  I’m six months in, three CT scans and a PET with no conclusive diagnosis.  They gave me the option of waiting another six months for another CT to see if there is any change.  I’ve opted to do a biopsy.  If it’s cancer they will do the lobectomy at that time. If it’s not they will only be taking a small 1 cm piece if my lung and I will have the peace of mind knowing it’s not cancer, and sill be 1 cm lighter 😀.
    If you have a local hospital with a lung cancer screening program in place you may reach out to them for guidance.  I do also believe that you can make an appointment without the referral, you will just need to get it before your appointment so that your insurance company will pay for the visit (if they require referrals). 
    You should also find the best in your area.  Most doctors refer people within their own hospital/doctor network.  Do your research and find the one you are most comfortable with that takes your insurance, not just the ones your primary refers. My process started in one hospital network in their ER, went to my primary network, to the cancer screening hospital and I’m now following up with and having the biopsy done at Sloan.
    Another suggestion is ask for copies of all reports and for all your scans to be put on discs.  Read your reports with the doctor during your follow up.  The report is written by a radiologist.  The doctor will look at their interpretation, will look at the scans and make their own interpretation.  Make sure you go over the report with them and ask them to help you understand what it says if you don’t.  Ask them to have copies of your scans ready for you at your follow up.  You will want those if you decide to follow up elsewhere and gathering them later is very time consuming and can be frustrating.  
    My last suggestion is write down your questions before your follow up make sure to go through them before you leave the doctors office.  If you have someone you trust to go with you bring them and let them know they are there to listen and make sure all your questions are answered.  Make sure whoever it is can keep a level head in a stressful situation and is a good listener.  If the doctor will let you them record the conversation.  It’s amazing how little you are able to retain when under that much stress. 
    Good luck with your scan, think positive thoughts and let us know how it goes.   
     
  6. Like
    Curt reacted to Rower Michelle in The First Official CT Results   
    Hi Everybody, 
    Just back from the onc appointment.  Looks like the Alectinib plus all the hippy stuff is working.  Onc says "dramatic improvement".  My right lung has cleared significantly after 8 weeks of treatment.  Returning to rowing has been very beneficial, I'm up to 4k a day.  I've been graduated to monthly visits and next CT scan in two months. Thanks for the support and continued prayers.  It all helps!   Progress, forward march.  Jersey Strong. 
    Michelle
  7. Like
    Curt got a reaction from Tom Galli in So frightened   
    My second opinion went well. Thank you for asking.  They gave me the option to just watch it for another six months or to biopsy it.  If it turns out to be cancer during the biopsy they will do the lobectomy at that time.  I’m still not sure why the other doctor wanted to do the lobectomy without a biopsy.  I’m going to call them tomorrow.  I went to Sloan Kettering for the second option and felt much more comfortable with them.  I’m opting for the biopsy.  I want to find out what this is and figure out what’s next.  It still scares the crap out of me that I’m going to be going to sleep and could be waking up with part of my lung missing and a cancer diagnosis.  It scares me even more to have it inside me and not know what it is.     
    The PET scan will likely give you some more information but be prepared that it may not be difinitive.  Mine wasn’t.  They had me do a six month follow up CT after my PET.  I know it’s hard but make a conscious effort to try and keep to your life routines.  Worrying doesn’t make this go quicker.  I have a few work and personal trips coming up.  If I did the biopsy and it turns out to be cancer ad they did the lobectomy I would not be able to go on them.  You aren’t supposed to fly for 6-8 weeks after a lobectomy.  Given it hasn’t grown in six months the doctors weren’t overly concerned so I am scheduling it for after the trips.  They felt confident that even if it is cancer waiting six weeks won’t make a difference in prognosis or treatment.  I just need to figure out how not to worry about it during that time.  
    Good luck on your test tomorrow.  Think positive thoughts...and bring something to read.  They inject you with radioactive material.  When they did mine they made me sit in a lead lined room for an hour to let the material be absorbed.   The room I was in had no cell signal (lead lined), and really old magazines.  It was a long hour.  It will probably be about a week before you get the results.  
    Coincidentally I’ve been having the same log in issues as you.  What were they able to do to fix it?   
  8. Like
    Curt got a reaction from Roz in So frightened   
    Hi Lisa.  I’m really sorry to hear about your mom and your dad.  Losing my dad to lung cancer six years ago left me feeling very alone.  It’s a strange feeling to not have that person around anymore.  I had to keep telling myself that if all things are as they should be in the world we will all have to go through the loss of our parents.  It doesn’t make it any easier but it’s one of those things we all will inevedely have to confront.  Your family history will weigh on how the doctors guide you.  Your having previously smoked will as well.  Don’t beat yourself up about that one. I’ve never smoked and am going through the same thing.  The search for answers is difficult with lung nodules.  The only definitive way for them to know what they are is to biopsy them.  The doctors will determine if that is necessary based on your specific demographics, family history, the characteristics of the nodule and the results of the PET scan.  Mine was spiculated when it was originally found.  Spiculated does increase the concern, but it does not definitively mean cancer.  It took me a while to make my way through the intitial obdominal CT scan that saw it, following up with my primary, getting a CAT scan specially looking at my lungs, then following up with a surgeon who specializes in cancer.  That surgeon ordered the PET scan.  My insurance company didn’t want to approve the PET scan at first because it wasn’t 10mm. The doctors were able to convince them it was necessary.  That scan did not show anything difinitive.  Nothing was “glowing”.  It was probably two months from the time of the original scan until I had that PET scan.  The doctor who ordered the original CT of my abdomin never mentioned the nodule in my lung to me.  My mother, who is a nurse (and thankfully nosy), read my entire radiology report.  She found mention of the nodule on the third page.  Frankly if she hadn’t read it I would have never seen it.  Even if I did read the entire report I wouldn’t have known to be concerned and to follow up   I just had my six month follow up CT. Nothing has changed but the fact that it is spiculated and pulling on the fissure that separates two lobes concerns the doctor.  That coupled with the location (upper right lobe), my family history and spiculation has been enough for them to recommend I have a lobectomy without knowing for sure it is cancer.  I understand from others on this forum that is not an out of the ordinary approach.  I also understand that it is a very affective treatment and, after lots of research and consultation, not the life altering thing I initially thought it would be.  I am getting a second opinion tomorrow.
    Who knows why life seems to throw challenges at us all at once.  That is to a large extent out of your control.  Try to stay focused on what you know.  You have a small spot, the odds are it’s not cancer but you should be diligent in following up on it.  Try to find compfort in the fact that it is small and able to be dealt with regardless of what it is.  Don’t let the other things happening in your life (divorce) turn your attention away from this   Keeping after this is more important.
    Use this forum for support.  You will find people here with many of the same life experiences you have had or are having.  I’m sure your current circumstances feel overwhelming but take comfort in knowing others here have confronted the same things you are, they have been able to overcome them and are more than willing to support you as you go through them.   
     
     
     
  9. Like
    Curt got a reaction from Tom Galli in So frightened   
    Hi Lisa.  I’m really sorry to hear about your mom and your dad.  Losing my dad to lung cancer six years ago left me feeling very alone.  It’s a strange feeling to not have that person around anymore.  I had to keep telling myself that if all things are as they should be in the world we will all have to go through the loss of our parents.  It doesn’t make it any easier but it’s one of those things we all will inevedely have to confront.  Your family history will weigh on how the doctors guide you.  Your having previously smoked will as well.  Don’t beat yourself up about that one. I’ve never smoked and am going through the same thing.  The search for answers is difficult with lung nodules.  The only definitive way for them to know what they are is to biopsy them.  The doctors will determine if that is necessary based on your specific demographics, family history, the characteristics of the nodule and the results of the PET scan.  Mine was spiculated when it was originally found.  Spiculated does increase the concern, but it does not definitively mean cancer.  It took me a while to make my way through the intitial obdominal CT scan that saw it, following up with my primary, getting a CAT scan specially looking at my lungs, then following up with a surgeon who specializes in cancer.  That surgeon ordered the PET scan.  My insurance company didn’t want to approve the PET scan at first because it wasn’t 10mm. The doctors were able to convince them it was necessary.  That scan did not show anything difinitive.  Nothing was “glowing”.  It was probably two months from the time of the original scan until I had that PET scan.  The doctor who ordered the original CT of my abdomin never mentioned the nodule in my lung to me.  My mother, who is a nurse (and thankfully nosy), read my entire radiology report.  She found mention of the nodule on the third page.  Frankly if she hadn’t read it I would have never seen it.  Even if I did read the entire report I wouldn’t have known to be concerned and to follow up   I just had my six month follow up CT. Nothing has changed but the fact that it is spiculated and pulling on the fissure that separates two lobes concerns the doctor.  That coupled with the location (upper right lobe), my family history and spiculation has been enough for them to recommend I have a lobectomy without knowing for sure it is cancer.  I understand from others on this forum that is not an out of the ordinary approach.  I also understand that it is a very affective treatment and, after lots of research and consultation, not the life altering thing I initially thought it would be.  I am getting a second opinion tomorrow.
    Who knows why life seems to throw challenges at us all at once.  That is to a large extent out of your control.  Try to stay focused on what you know.  You have a small spot, the odds are it’s not cancer but you should be diligent in following up on it.  Try to find compfort in the fact that it is small and able to be dealt with regardless of what it is.  Don’t let the other things happening in your life (divorce) turn your attention away from this   Keeping after this is more important.
    Use this forum for support.  You will find people here with many of the same life experiences you have had or are having.  I’m sure your current circumstances feel overwhelming but take comfort in knowing others here have confronted the same things you are, they have been able to overcome them and are more than willing to support you as you go through them.   
     
     
     
  10. Like
    Curt got a reaction from PaulaC in So frightened   
    Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.
  11. Like
    Curt got a reaction from Barb1260 in 2nd opinion?   
    I have yet to be diagnosed.  Just a suspicious nodule that the first doctor is recommending a lobectomy for.  I have an appointment for a second opinion tomorrow.  
  12. Like
    Curt got a reaction from BridgetO in So frightened   
    Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.
  13. Like
    Curt got a reaction from ColleenRae in So frightened   
    Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.
  14. Like
    Curt got a reaction from Tom Galli in 8mm nodul with spiculated   
    Hi Sandra.  I’m going through the same thing right now.  I have an 8mm spiculated nodule on my lung.  I do have a family history of lung cancer, I’ve never smoked.   It was found on a scan for something else six months ago.  At the time they did a PET scan which is probably the next step for you.  Active cancer cells glow on a PET scan.  If the nodule doesn’t “light up” on the scan they will likely just want you to come in for CT scans every three or six months.  If it does light up they will want to  biopsy it.  Hearing you have a nodule is really stressful.  The waiting to find out what it is can be maddening.  I still can’t believe how hard it is for them to diagnose small nodules.  They still aren’t able to tell me what mine is.  I have a follow up on Monday.  My doctors have told me that 60% of lung nodules are not cancer.  Spiculated makes them more suspicious, but not definitive.  I find this forum helpful.  Stay diligent and keep after the doctors until you know for sure what you are dealing with.  Hopefully it’s notjing, if it does turn out to be something 8mm is really small and very treatable/curable.  
  15. Like
    Curt got a reaction from Tom Galli in So frightened   
    Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.
  16. Like
    Curt got a reaction from Roz in So frightened   
    Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.
  17. Like
    Curt got a reaction from LexieCat in So frightened   
    Lisa I’m having a similar experience to you.  A nodule was picked up on a scan for something else.  It is 8mm.   I had a PET scan six months ago which did not “light up”.  Cancer is supposed to light up on a scan because cancer cells are metabolically more active then regular cells.  Apparently they can still be cancer even if they don’t light up.   The doctor recommended we wait and monitor it.  I had a six month follow up CT recently. There was no change in the size but the doctor didn’t like the fact that it was spiculated and pulling on a fissure (the line that separates the different lobes of your lungs). They are unable to biopsy it.  They are recommending I have a lobectomy to remove it. I do have a family history of lung cancer.  I am gong for a second opinion on Monday.  I completely understand how frightened you are.  If you had an 85% chance of anything good happening in life you’d probably be be thrilled, somehow when it comes to cancer an 85% chance you don’t have it is nowhere near enough to allow you not to worry.  Do the best you can to focus on the fact that there is an 85% chance you are fine.  A spiculated nodule does increase the chances it is cancer but they took that into consideration when they sent you that report saying there was only a 15% chance it is cancer.  The good news is whatever’s it is it is really small.  The frustrating part is accurately diagnosing something that small is often times very challenging and can take a while.  That process is stressful.  I have found that communicating on this forum helps.  There are a lot of wonderful people who are having or have had the same experiences you are.  You aren’t alone.
  18. Like
    Curt got a reaction from Rower Michelle in Just Diagnosed-Scared to Death   
    Hi Barb.  I am sorry to hear about your diagnosis and the loss of your sister.  I've lost family to this disease.  The others who have mentioned it are correct in that there have been a lot of advances in genetic mapping of cancer.  If they didn't do that when they did your biopsy you should look into if it's possible with the sample they took.  If you have access to your sister's medical records that can also be very helpful.  They sometimes keep biopsy samples for many years.  Reading through my dad's recently wasn't easy, but it can go a long way towards finding the best treatment for you.  The waiting is really difficult.  The doctors never seem to have the level of urgency that you feel they should.  You do have to trust that they are going through the necessary steps in the best way they can and if urgency is required they will let you know.  I'm also Jersey born (Morristown), I've moved away but still have lots of family there.  Jersey Strong!    
  19. Like
    Curt got a reaction from LaurenH in Lobectomy Without Biopsy?   
    Thank you Lauren.  I really appreciate this forum.  It helps to be in touch with others having similar struggles.  
  20. Like
    Curt got a reaction from LisaA in Newly diagnosed, awaiting PET scan   
    Lisa I’m going through a similar joirney as you’ve described.  Mass picked up on an XRay.  Follow CT and PET scan with similar findings as yours.  My doctor is recommending a lobectomy without having biopsied it.  Apparently they can’t.  I’m getting a second opinion on Monday. I hope all goes well with your biopsy.  Hopefully having some answers will help clarify the path forward and relieve some of the anxiety for you.  
  21. Like
    Curt reacted to LexieCat in Lobectomy Without Biopsy?   
    I was out with friends to a dinner and a concert two weeks after surgery, and I was back to work right after that (desk job).  You'll be sore for a while, but the more you move, the quicker you'll get back to normal.  I had to avoid heavy lifting for a few weeks, but no other restrictions on my activity.  
    I had VATS (which is laparoscopic--robotic surgery is similar).  If "open" surgery is required, recovery may be longer (and more painful).
    I was honestly shocked by how little pain I experienced.  I've had a few abdominal surgeries in my life, all of which were more painful than this was.
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