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ColleenRae

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  1. Thanks
    ColleenRae reacted to Steph1235 in Nodule & VATS   
    Thank you, everyone, I appreciate all the feedback, encouragement and support.  So thankful to have found this group.  I’ll keep you all posted on the PET.  Colleen hope all goes well today with the scan.
  2. Like
    ColleenRae reacted to Lisa L in Nodule & VATS   
    I’m in the same boat, been dealing with this since Dec. 14, 9mm spiculated nodule.  I had a pet scan 3 weeks later, no uptake at all, had another scan in April and it was the same and so today I’m going for 3rd Scan and praying it’s the same because I’m just so freaked out about having the Vats surgery.  I’m hoping it’s just indolent and doesn’t do anything.  This forum and the people are amazing.
  3. Like
    ColleenRae got a reaction from Rower Michelle in Nodule & VATS   
    Hello Steph - I am also a member of this "club"...  I had a lung CT done in Nov 2016 and several nodules were located but all very small, so I was put on a "watch 'n wait" regime.  By July 2018, after another lung CT, Dr's were particularly concerned about one upper right lobe nodule. It was still fairly small (8mm) but it was becoming more dense.  A biopsy was discussed but ruled out - the nodule was too small and in a difficult place to biopsy. I had a PET Scan and that one nodule lit up - and I had been told it might not due to the small size, but it was like a flashlight! This was still not guarantee of cancer, but odds were high. I ended up having VATS, upper right lobe lobectomy October 2018. The pathology report showed the tumor was indeed malignant (adenocarcinoma), Stage Ia, no lymph node involvement or metastasis. I required no further treatment other than surgery.  My recovery  went well with a couple of hiccups (needed fluid drained from lung about 2 weeks following surgery; allergic reaction to pain med gabapentin - I just used Tylenol after that). I am able to do just about everything I did before but I have noticed a decrease in my lung capacity and find myself a little shorter on breath.
    I am actually heading to Seattle today in about 30 minutes for my 2nd post-op cat scan and wanted to read a bit on this site for inspiration - the people here help so much in this journey! My first CT following surgery showed a couple of nodules in the upper left lobe. The radiologist suspected it's a slow growing cancer again but my surgeon did not agree. So I am back in the watch 'n wait mode again.  I'll be honest, sick to my stomach with anxiety... but what can you do other than march forward and hope for the best?!  
    I know / we all know how frightening this is... But hopefully sharing our stories with you helps. Go for the PET scan.  I had my lobectomy not knowing for sure if I had cancer or not, but it was worth the gamble imo.  I am glad it was caught early, that the tumor was small and had not spread.  I hope the same outcome for you.  We are here for you! Good luck!
  4. Like
    ColleenRae got a reaction from Tom Galli in Nodule & VATS   
    Hello Steph - I am also a member of this "club"...  I had a lung CT done in Nov 2016 and several nodules were located but all very small, so I was put on a "watch 'n wait" regime.  By July 2018, after another lung CT, Dr's were particularly concerned about one upper right lobe nodule. It was still fairly small (8mm) but it was becoming more dense.  A biopsy was discussed but ruled out - the nodule was too small and in a difficult place to biopsy. I had a PET Scan and that one nodule lit up - and I had been told it might not due to the small size, but it was like a flashlight! This was still not guarantee of cancer, but odds were high. I ended up having VATS, upper right lobe lobectomy October 2018. The pathology report showed the tumor was indeed malignant (adenocarcinoma), Stage Ia, no lymph node involvement or metastasis. I required no further treatment other than surgery.  My recovery  went well with a couple of hiccups (needed fluid drained from lung about 2 weeks following surgery; allergic reaction to pain med gabapentin - I just used Tylenol after that). I am able to do just about everything I did before but I have noticed a decrease in my lung capacity and find myself a little shorter on breath.
    I am actually heading to Seattle today in about 30 minutes for my 2nd post-op cat scan and wanted to read a bit on this site for inspiration - the people here help so much in this journey! My first CT following surgery showed a couple of nodules in the upper left lobe. The radiologist suspected it's a slow growing cancer again but my surgeon did not agree. So I am back in the watch 'n wait mode again.  I'll be honest, sick to my stomach with anxiety... but what can you do other than march forward and hope for the best?!  
    I know / we all know how frightening this is... But hopefully sharing our stories with you helps. Go for the PET scan.  I had my lobectomy not knowing for sure if I had cancer or not, but it was worth the gamble imo.  I am glad it was caught early, that the tumor was small and had not spread.  I hope the same outcome for you.  We are here for you! Good luck!
  5. Like
    ColleenRae reacted to LouT in 1st Scan Post Surgery on Wednesday   
    DebW
     You’re a warrior too, a reluctant one but no less a fighter.  I look forward to you telling us how you killed it.  
    Lou
  6. Like
    ColleenRae got a reaction from Roz in 1st Scan Post Surgery on Wednesday   
    Hi Debbie,
    Completely share in your anxiety... My 2nd post-op CT is scheduled for 08/27 and I'm having a very difficult time containing my anxiety / fears.  Fortunately I will have the CT and meet with my surgeon an hour later for the results, so I am grateful I won't have to wait.  It will be a long day. Over a two hour drive there and then back again. I'm just hoping I don't cry while driving!
    I had my right upper lobe removed in October 2018; no chemo or radiation. First follow-up scan was in February. My surgeon and another cancer clinic both felt the scan looked fine but my local pulmonologist is certain there's been a change in a couple of nodules in the upper left lung and said he believes it's another slow growing malignancy... So, I am very anxious to find out what the consensus will be this time. I hate every minute of this, believe me - as I'm sure all of us do.  I have tried very hard to ignore my fear, but I've found this past month, as the CT date draws near, that I have been much crabbier, more negative in my thoughts (oh how I hate that!), restless, etc.
    I have not had a problem with my insurance and the CT's... My first one was only 4 months following surgery; this one we're waiting exactly 6 months.
    I don't blame you re: the MRI... I had one many years ago and did okay with it. Most recent one I had was very difficult... I had a serious panic attack and they had to stop. They wanted to reschedule with me being semi-medicated, but I insisted we try again, that I could handle it. I found that the trick for me was to keep my eyes closed the entire time and focus on the music... When I open my eyes I really freak out due to the tight, enclosed space.
    Good luck with this. Glad you can get your results soon and hoping you get good news. Will keep you in my thoughts / sending positive wishes your way...
     
  7. Like
    ColleenRae reacted to Deb W in 1st Scan Post Surgery on Wednesday   
    Hi everyone,
    Thanks so much for your thoughtful comments and advice.  It means a lot to me.  So, I spoke to a health advocate and they believe this MRI is the best way to go.  I'm going ahead with the MRI, but now I won't be having it until 8/28.  Colleen, thanks for sharing and I am hoping for a NED result for you, please keep us posted.  I have also been crabby and impatient lately which I think is due to upcoming scan.  Xanax and a mask it is for scan day!  It's just a very different way to live - thoughts drifting to the worry of recurrence.   Tom, 15 years of scans...you're a warrior!
     
  8. Thanks
    ColleenRae reacted to BridgetO in 1st Scan Post Surgery on Wednesday   
    Deb, hang in there. The anxiety of the wait for results is universal or nearly so.
    Colleen Rae, Good to hear from  you again. I wish you all the best with your CT scan .
     
  9. Thanks
    ColleenRae reacted to Tom Galli in 1st Scan Post Surgery on Wednesday   
    ColleenRae,
    If your doctor believes the nodes are malignant, don't forget precision radiation as a treatment method. Surgeons are sometimes reluctant to 
    "pluck" lymph nodes depending on their location but radiation oncologists have and easier route and recovery is much faster.
    I do hope your scan is NED.
    Stay the course.
    Tom
  10. Thanks
    ColleenRae got a reaction from Deb W in 1st Scan Post Surgery on Wednesday   
    Hi Debbie,
    Completely share in your anxiety... My 2nd post-op CT is scheduled for 08/27 and I'm having a very difficult time containing my anxiety / fears.  Fortunately I will have the CT and meet with my surgeon an hour later for the results, so I am grateful I won't have to wait.  It will be a long day. Over a two hour drive there and then back again. I'm just hoping I don't cry while driving!
    I had my right upper lobe removed in October 2018; no chemo or radiation. First follow-up scan was in February. My surgeon and another cancer clinic both felt the scan looked fine but my local pulmonologist is certain there's been a change in a couple of nodules in the upper left lung and said he believes it's another slow growing malignancy... So, I am very anxious to find out what the consensus will be this time. I hate every minute of this, believe me - as I'm sure all of us do.  I have tried very hard to ignore my fear, but I've found this past month, as the CT date draws near, that I have been much crabbier, more negative in my thoughts (oh how I hate that!), restless, etc.
    I have not had a problem with my insurance and the CT's... My first one was only 4 months following surgery; this one we're waiting exactly 6 months.
    I don't blame you re: the MRI... I had one many years ago and did okay with it. Most recent one I had was very difficult... I had a serious panic attack and they had to stop. They wanted to reschedule with me being semi-medicated, but I insisted we try again, that I could handle it. I found that the trick for me was to keep my eyes closed the entire time and focus on the music... When I open my eyes I really freak out due to the tight, enclosed space.
    Good luck with this. Glad you can get your results soon and hoping you get good news. Will keep you in my thoughts / sending positive wishes your way...
     
  11. Like
    ColleenRae got a reaction from LouT in 1st Scan Post Surgery on Wednesday   
    Hi Debbie,
    Completely share in your anxiety... My 2nd post-op CT is scheduled for 08/27 and I'm having a very difficult time containing my anxiety / fears.  Fortunately I will have the CT and meet with my surgeon an hour later for the results, so I am grateful I won't have to wait.  It will be a long day. Over a two hour drive there and then back again. I'm just hoping I don't cry while driving!
    I had my right upper lobe removed in October 2018; no chemo or radiation. First follow-up scan was in February. My surgeon and another cancer clinic both felt the scan looked fine but my local pulmonologist is certain there's been a change in a couple of nodules in the upper left lung and said he believes it's another slow growing malignancy... So, I am very anxious to find out what the consensus will be this time. I hate every minute of this, believe me - as I'm sure all of us do.  I have tried very hard to ignore my fear, but I've found this past month, as the CT date draws near, that I have been much crabbier, more negative in my thoughts (oh how I hate that!), restless, etc.
    I have not had a problem with my insurance and the CT's... My first one was only 4 months following surgery; this one we're waiting exactly 6 months.
    I don't blame you re: the MRI... I had one many years ago and did okay with it. Most recent one I had was very difficult... I had a serious panic attack and they had to stop. They wanted to reschedule with me being semi-medicated, but I insisted we try again, that I could handle it. I found that the trick for me was to keep my eyes closed the entire time and focus on the music... When I open my eyes I really freak out due to the tight, enclosed space.
    Good luck with this. Glad you can get your results soon and hoping you get good news. Will keep you in my thoughts / sending positive wishes your way...
     
  12. Like
    ColleenRae got a reaction from BridgetO in Change or Role   
    Bridget,
    I have not been online here for a while and just read the posts... Geez! I'm so sorry to hear about your wife's dx and what you both are facing in this. You've been so encouraging and helpful when I asked questions / needed support... Please know that I'll be thinking of you both and sending hope and positivity your way.  I want to reciprocate and all I feel I can do is to let you know you are being thought of and I'm making my appeals to the Universe on your behalf!  From what you've written, the news does sound hopeful. We'll hang onto that. You DO have a lot of people here who will support you in this... Colleen
  13. Like
    ColleenRae got a reaction from Rower Michelle in 1st Scan Post Surgery on Wednesday   
    Hi Debbie,
    Completely share in your anxiety... My 2nd post-op CT is scheduled for 08/27 and I'm having a very difficult time containing my anxiety / fears.  Fortunately I will have the CT and meet with my surgeon an hour later for the results, so I am grateful I won't have to wait.  It will be a long day. Over a two hour drive there and then back again. I'm just hoping I don't cry while driving!
    I had my right upper lobe removed in October 2018; no chemo or radiation. First follow-up scan was in February. My surgeon and another cancer clinic both felt the scan looked fine but my local pulmonologist is certain there's been a change in a couple of nodules in the upper left lung and said he believes it's another slow growing malignancy... So, I am very anxious to find out what the consensus will be this time. I hate every minute of this, believe me - as I'm sure all of us do.  I have tried very hard to ignore my fear, but I've found this past month, as the CT date draws near, that I have been much crabbier, more negative in my thoughts (oh how I hate that!), restless, etc.
    I have not had a problem with my insurance and the CT's... My first one was only 4 months following surgery; this one we're waiting exactly 6 months.
    I don't blame you re: the MRI... I had one many years ago and did okay with it. Most recent one I had was very difficult... I had a serious panic attack and they had to stop. They wanted to reschedule with me being semi-medicated, but I insisted we try again, that I could handle it. I found that the trick for me was to keep my eyes closed the entire time and focus on the music... When I open my eyes I really freak out due to the tight, enclosed space.
    Good luck with this. Glad you can get your results soon and hoping you get good news. Will keep you in my thoughts / sending positive wishes your way...
     
  14. Like
    ColleenRae reacted to Isabelle49 in CT results   
    CT done Friday, results online today. Shows a reduction in width of mass from 8.3 cm to 5. Keeping my excitement contained until I see the doc tomorrow, since I’m not sure what the expectation were. Happy it is smaller though. Blessings to all.
  15. Like
    ColleenRae reacted to BridgetO in Change or Role   
    Update: My wife is set for lumpectpmy on August 28. It will be a day surgery. The tumor appears to be small and "garden variety", so we're optimistic about a good outcome. Afterwards, she'll  have radiation.
  16. Like
    ColleenRae reacted to BridgetO in Change or Role   
    .Thank you to all of my sisters and brothers on the forums. Your support, hugs, positive thoughts and ju-ju are coming through loud and clear. They mean a lot. I'll keep you posted.
  17. Like
    ColleenRae reacted to Rower Michelle in Change or Role   
    Spooling up the prayers for your wife Bridget.  I'm so sorry you're having to deal with this now.  One of the hardest things for me to deal with when hubby had an unplanned surgery late last year is how helpless I felt.  I can control my feelings and how I respond to my lung cancer.  I can choose my attitude.  I'm assertive enough to bully my way through just about anything.  But when it comes to a spouse, gosh, it's just soooo hard.   You've been through this to pave the way for your wife.  You're very creative, witty and know how to deal with the train wreck of this healthcare delivery system, plus you've got a tried and true hippie protocol.   Keep us posted so we can go through this with you, the scans, tests and waiting.  Your wife has just inherited the family here.   Be strong, lean on us.  We'll be here for you just like you're here for us.  
    A big hug to you and your wife.   
    Michelle 
  18. Like
    ColleenRae reacted to BridgetO in Change or Role   
    My wife has just been diagnosed with breast cancer, so now I'm a caregiver. She had a biopsy about 10 days ago. She has a history of back issues. During the biopsy she had to be in an odd, twisted position and shortly afterwards she began having back pain, which got worse over a couple of days until she was incapacitaed by pain. I managed to get her in to urgent care where she was diagnosed with muscle spasms. With conventional medicine and accupunture she's now functional again, though still has some pain. Hopefully this "pre-treatment" pain will be the worst she'll experience. 
    She has seen me through  treatment for 3 cancers, including breast, and the most  recent being the lung cancer. So now it's my turn. I think my  cancer experience has made it a little easier for both of us. We know something  about cancer and cancer treatment. Also I'm NED on all 3 cancers. I'm 11 years out on the breast cancer, so this helps her be optimistic. 
     I'll be going with her for a consultation with a surgeon later this week.  All  prayers and positive thoughts welcome here!
    Bridget O
  19. Like
    ColleenRae reacted to PaulaC in Radiation Side Effects - husband suffering   
    Georgia, I went through the exact thing your husband is experiencing. The radiologist referred me to a doctor that did the procedure you talked about with the balloon. I ended up having it done twice to stretch my esophagus. I lost almost 40 pounds before I got it figured out. 
    Hopefully he can talk to the radiologist or oncologist about seeing a specialist. 
  20. Like
    ColleenRae reacted to Tom Galli in 1st Scan Post Surgery on Wednesday   
    Debbie,
    Sometimes, I think about a medical insurance CEO diagnosed with lung cancer and being denied a scan. Now that might change things!
    Yes it is scanziety season for me. My scan is September 9th and I'll wait a week for results. I've had so many scans in 15+ years that I believe I'm radioactive! Since there is no cure for scanziety...
    Stay the course.
    Tom
  21. Like
    ColleenRae reacted to Blossomsmom in My how things have changed   
    I am so thankful to have found this site and so appreciate everyone on it. Here’s why. On 1/14/91, my 63 year old father was diagnosed with Small cell lung cancer with brain mets after being hospitalized with what they thought was a heart problem. I was devastated. He lived only 5 months. Heartbroken and shell shocked don’t even begin to describe how I felt. And at that time, there was no online support, there were barely any in person support groups for adult children dealing with the horrors of what I had experienced. I truly thought I was going to lose my mind. It took me years to work through my grief. 
    Fast forward to 11/4/18. I took my 89 year old Mom to the ER for what I thought was severe dehydration from “the flu”. Things began to happen very rapidly once we arrived. Within about 30 minutes the  ER doctor told me that my Mom was either having or had just had a heart attack and as an added complication, her kidneys were shutting down. Ok, that explains all the activity in & out of her room I thought. While I was trying to process that, they did a chest X-ray which I thought was odd and then took her for a chest CT which again I thought was odd but at that point didn’t question. Shortly after that, the ER doctor gave me the news. My mom had a mass in her right lung & enlarged lymph nodes all of which they thought meant lung cancer. Wait, what? I thought I was going to throw up or pass out or both. I was thrown immediately back to 1991 and thought this can’t be happening again! But no time to process that, immediate concern was back to her heart & kidneys. Over the next week in the hospital slowly she began to recover.  Oncologist came in the last day she was in the hospital & explained the CT scan results again and the tests that would follow. But none of the tests could be done until she was recovered from the heart attack. Finally in January they biopsied her lymph nodes, came back inconclusive. We then waited & waited for the lung biopsy to be scheduled. It wasn’t until I called the surgeons office and told them if they didn’t get it scheduled in the next week that my Mom had decided she wasn’t going to have the biopsy at all and just get on with her life. She had the biopsy the following week.  From November through mid March I couldn’t help going back to 1991 and feeling terrified for what I thought was the death sentence my Mom was about to get. And of course Dr. Google didn’t help my preconceived notion of what was going to happen. We finally received the biopsy results on 3/28 and stage 4 small cell/non small cell lung cancer combo was diagnosed. I went into panic mode and thought back to when my mom took care of my dad over his last 5 months. How will I do all that, can I do what it takes, am I strong enough to do it, what will she go through, what about her quality of life and on and on for weeks. Then I just happened across a website called Lungevity.org and began to read the forums. I couldn’t believe what I was reading, people posting that they are LIVING with lung cancer, people posting HOPE, people posting ENCOURAGEMENT! I felt like I’d hit the lottery! Having gone down this road once before with nothing available, I feel incredibly lucky to have a place where people are sharing their first hand, boots on the ground real life experiences with everything related to lung cancer.  This site is helping me dig my way out of the very deep black hole and is giving me the strength to get through whatever we face for which I will always be grateful for. 
  22. Like
    ColleenRae reacted to KatieB in Lung Cancer & Antioxidants: New Research   
    Interestingly enough after this study came out I contacted my liver specialist about it.  I take very high doses of Vitamin E because 5 years ago there was a small study that showed taking 800 dose pill or more a day kept people with liver disease stable.
    Anyway- after this study came out I contact my hepatologist about it since I am someone at risk for lung cancer too.  He told me I should stop taking it because it has little benefit anyway and most supplements provide very little benefit and some all natural and synthetic supplements can actually cause more harm than good.  He recommends getting nutrients from foods when possible.
    Doesn't really answer the question about whether it promotes metastasis but I definitely suggest chatting with your oncologists about the pros and cons of it.
    Oh, and after 5 yrs I've made the decision to stop my vitamin E.  
     
    Keep us posted!
     
  23. Like
    ColleenRae reacted to Diana in Non-small Cell - 4.5 years later small cell - anybody?   
    I haven't had genetic testing done.  I wasn't sure if this would be considered transformed to SCLC after NSCLC since there was such a period of time with NED.  The term transformed has not been used for my case as I was told this is a new cancer 4.5 years after my previous cancer was removed, but maybe I need to ask more questions and I will. 
    Yes, initial pathology reports indicated no cancer, but my slides were sent for further testing at Mayo which is where the SCLC was diagnosed. 
    Thank you all of you for your responses.  Right now I am just swimming in a lack of information for situations such as mine.  While I can find adequate information on both SCLC and NSCLC, I am finding basically nothing on cases similar to mine. 
  24. Like
    ColleenRae reacted to Diana in Non-small Cell - 4.5 years later small cell - anybody?   
    Thus far, I have had no luck connecting with anybody that has had NSCLC and following a period of NED, diagnosed with SCLC.  I have joined several different forums hoping to connect with somebody.  The best I have come up with is that this is not unheard of, but I am getting the feeling it is relatively rare.   Since I have reached out to multiple organizations with no fellow NSCLC survivors later diagnosed with SCLC, I am starting to wonder if I am an oddity! 
    That said, I welcome the support of this SCLC community and am hoping to hear from you all with tips and tricks!  I officially lost my hair and had a shaving party last night.  No tears as I have been through it before and knew what to expect!  Onward!!!
     
  25. Like
    ColleenRae got a reaction from Diana in Non-small Cell - 4.5 years later small cell - anybody?   
    Diana,
    I'm sorry for your news... I can only imagine how upsetting the diagnosis was. That's understandable. I don't have experience in this to share with you (recent lobectomy only)  but hope that someone can share info with you. I'd be curious - as I have been curious if this type of situation arises very often.  It sounds as if your follow-up care  has been thorough which is a good thing, as well as getting immediate treatment to address this.  Thinking of you and hope you'll get some answers here...
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