Am I a survivor

[rondac71]

Hi, I was diagnosed with stage 1a of my left lung. I was also diagnosed with stage pT3 thyroid cancer at the same time. I was quite shocked. I have had surgery to remove both plus a radioactive iodine treatment for my thyroid. Supposedly I'm cancer free. I just want to know, if I'm considered a cancer survivor or not.

[LexieCat]

Unless you're posting from the great beyond, I'd say you were a survivor--you had it, and you survived, right?

Congrats, I'm cancer-free, too, to the best of my knowledge, after my surgery to remove my upper left lobe.  

Welcome!

[rondac71]

Thank you so much, Lexiecat. I had my left lower lobe removed in June 2017. Both of my parents does from lung cancer and I used to be a smoker. So, I wasn't overly surprised when I was told about the lung cancer. I was more surprised by my age, I'm 46. Then the whole thyroid thing was crazy. I'm a radiation therapist and loved my patients and enjoyed talking care of them. My family was very supportive when everything was going on but now not so much. They think that now everything is over and done with that everything goes back to normal. My aunt is the only one who is being supportive. Thank God for her. That's my rant and it felt good. Thanks

[LexieCat]

Oh, trust me, I get it.  I'm a bit older than you--I was 60 when I had my lobectomy last year in July (we are nearly twins in terms of timing)--and my cancer (caught through screening as a many-years smoker) was barely a stage 1b.  I've needed no further treatment, either.  Here's a thread where I posted some of my conflicting feelings about my (so far) good fortune: http://forums.lungevity.org/topic/44509-losing-our-lung-cancer-friends/

I actually prefer for people in my life not to make too big a deal about it, but I do appreciate the friends/family who occasionally ask how I'm doing these days.  

But dealing with two cancers at the same time must have been particularly disorienting for you.  I'm so glad for you that your treatment seems to have been so successful.  I hope you will stick around here.  Even though the majority of longtime posters are people whose cancer was/is more advanced and who must continue with treatments to survive, people like you and I are not unique, and we have our own scars (literal and figurative!) from our battle.  And we carry a bit of the post-battle trauma with us, even when it doesn't consume our every waking moments.  And, as I noted in my post, we really can't be completely secure that the cancer won't come back or set up shop in some new location.  I prefer to think optimistically (it's just how I am about life in general), but I try to be realistic at the same time.  

And I think newcomers dealing with nodules or other signs of possible early/easily-treatable cancer need to hear from people like us that maybe this diagnosis WON'T mean years of ongoing treatment, side effects, etc., just as they need to see, in the longtime survivors of more advanced disease, that there are ways to cope with that eventuality, should it happen.

Nice to meet you, fellow survivor!

Teri

 

[BridgetO]

Hi,

Great rant! You can rant, complain, celebrate, ask questions, whatever you need to here. I'm also a survivor of early stage lung cancer (plus two other cancers) . Most people who haven't had cancer don't understand that whereever we are in our cancer adventure, we're seeking a new normal and will never be back to our previous one. As a cancer counselor told me after my first cancer " You'll always be a person who has had cancer."  

Welcome to your new normal, whatever it may be and welcome here.

Bridget O

[rondac71]

Thanks. I definitely need some where to rant, witch, and say God blessed me everyday. My family aren't very supportive at the moment. I guess they think that it's done and there's no after effects. They have lost their minds. I basically ignore what they say, they'll figure it out eventually.

[rondac71]

14 hours ago, LexieCat said:

Oh, trust me, I get it.  I'm a bit older than you--I was 60 when I had my lobectomy last year in July (we are nearly twins in terms of timing)--and my cancer (caught through screening as a many-years smoker) was barely a stage 1b.  I've needed no further treatment, either.  Here's a thread where I posted some of my conflicting feelings about my (so far) good fortune: http://forums.lungevity.org/topic/44509-losing-our-lung-cancer-friends/

I actually prefer for people in my life not to make too big a deal about it, but I do appreciate the friends/family who occasionally ask how I'm doing these days.  

But dealing with two cancers at the same time must have been particularly disorienting for you.  I'm so glad for you that your treatment seems to have been so successful.  I hope you will stick around here.  Even though the majority of longtime posters are people whose cancer was/is more advanced and who must continue with treatments to survive, people like you and I are not unique, and we have our own scars (literal and figurative!) from our battle.  And we carry a bit of the post-battle trauma with us, even when it doesn't consume our every waking moments.  And, as I noted in my post, we really can't be completely secure that the cancer won't come back or set up shop in some new location.  I prefer to think optimistically (it's just how I am about life in general), but I try to be realistic at the same time.  

And I think newcomers dealing with nodules or other signs of possible early/easily-treatable cancer need to hear from people like us that maybe this diagnosis WON'T mean years of ongoing treatment, side effects, etc., just as they need to see, in the longtime survivors of more advanced disease, that there are ways to cope with that eventuality, should it happen.

Nice to meet you, fellow survivor!

Teri

 

Hey, there. I'm having a real problem navigating replies and being able to reply back from my email. On to the things. I'll definitely check out your thread. Betting a radiation therapist makes it difficult to be optimistic at times. I've seen patients come back time after time to have this treated, that treated. And I have also seen patients walk away like nothing ever happened. I think I may be a little disillusioned. I'm not sure.

I had at chest CT Monday and go for my follow-up with the thoracic surgeon on Monday. I'm not sure I want to hear what he says. I'm sure it'll be good. I'm also going for my follow-up with the endocrinologist on Monday also. 

Off subject. Your lobectomy was the upper lobe, correct? Anyway, how did the area below that feel? The area above where my lobe was removed feels funny, like something is moving in there (I'm not sure that's the correct way to describe it) and is still extremely tender to touch. And one of my scars is red, irritated and hurts at times. Is that normal? I asked my surgeons nurse about the feeling of something moving and she said she'd never heard of that. Honestly, my doctor was awesome but when my surgery was over, I felt like I had been dumped. I called one time and had a question about when he found the whole thyroid thing and was told he doesn't handle thyroid issues. Same issue with the endocrinologist. I have no idea who to call for what and that pisses me off. 

Ronda

[LexieCat]

Actually, I had a funny feeling like something was moving in my chest a few months after my surgery.  My surgeon didn't know what it might be and sent me for a chest x-ray, which showed nothing abnormal.  The sensation went away a short time later.  I have some numbness around the incisions, and still a slight adhesion that makes the scars pucker a bit when I move.  There's no pain, though.  From what I understand, sometimes nerves are damaged slightly during surgery, so that might account for the tenderness.  

I had a question for my oncologist (who is handling my followup scans) about some other nodules (stable) that they are monitoring.  I contacted the nurse navigator, who is supposed to pass along any questions, and she answered without much helpful information.  I thanked her for the email and told her I wanted to ask the DOCTOR.  She never replied.  So I get your frustration.  I have my surgeon's personal cell phone (he was AWESOME), but he's not providing my care any longer, so I don't want to bother him with something that my oncologist should be answering.  I'll be seeing him in just a few months, so guess I will ask him then.

It's odd, though, that you can't get a answer about your thyroid.  I'm not quite sure I follow what the question was--if it related to something the surgeon did, I would think that's the doctor who should answer.  Do you think it's possible he didn't understand the question?  It kind of sounds like he thought you were asking something about thyroid function.

[LexieCat]

Oh, just remembered something.  I think, re the "funny feeling" in my chest, he speculated it was just things kind of moving and setting after the surgery.  The remaining lobe moves a bit and takes over the function of the one that was removed, and apparently that involves some shifting around/settling.  

[rondac71]

1 hour ago, LexieCat said:

Actually, I had a funny feeling like something was moving in my chest a few months after my surgery.  My surgeon didn't know what it might be and sent me for a chest x-ray, which showed nothing abnormal.  The sensation went away a short time later.  I have some numbness around the incisions, and still a slight adhesion that makes the scars pucker a bit when I move.  There's no pain, though.  From what I understand, sometimes nerves are damaged slightly during surgery, so that might account for the tenderness.  

I had a question for my oncologist (who is handling my followup scans) about some other nodules (stable) that they are monitoring.  I contacted the nurse navigator, who is supposed to pass along any questions, and she answered without much helpful information.  I thanked her for the email and told her I wanted to ask the DOCTOR.  She never replied.  So I get your frustration.  I have my surgeon's personal cell phone (he was AWESOME), but he's not providing my care any longer, so I don't want to bother him with something that my oncologist should be answering.  I'll be seeing him in just a few months, so guess I will ask him then.

It's odd, though, that you can't get a answer about your thyroid.  I'm not quite sure I follow what the question was--if it related to something the surgeon did, I would think that's the doctor who should answer.  Do you think it's possible he didn't understand the question?  It kind of sounds like he thought you were asking something about thyroid function.

I actually spoke with the nurse, I just wanted to know when exactly he found it. He said he talked to me about but I don't remember that at all. The only thing I can figure is he must have told me when he did my mediastinalscopy. My aunt took me to get that done. My post on follow-up was the first time me or my brother heard anything about it. When I mentioned it to my aunt, she said oh you don't remember him talking to you. She knew but didn't know that we didn't.

Regarding an oncologist. I was never referred to oncologist, so I've never seen one. I thought it was kinda strange, but the I guess the surgeon and endocrinologist know better than me. How crazy is that! I didn't really want to think about things to much or I would've freaked out, so I just did what the doctors told me to. I will say I have some awesome doctors. My ENT is the one who actually ordered the chest CT that showed the lung cancer. I weren't too him because I kept losing my voice. He scored me and I had right vocal cord paralysis. I'm pretty sure he had an idea more was going on.

Now, the thyroid cancer didn't show up on the CT, PET, or ultrasound, just when the lymph nodes were biopsied. The doctors say my case is very interesting. They sent my slides to an pathologist at Emory, the guy is an expert on thyroid pathology. Like I said, I just did what they told me.

Now, I'd like to go back to the lung. Was your lobectomy done by the VATS surgery? How was and how long was your recovery time?

[LexieCat]

So it's your surgeon that's handling your followup scans?  My own surgeon gave me that option--to see him for all followup--but he explained that if there were any further cancer, it would be a matter of chemo, not surgery, and that the oncologist would be the expert on that.  I actually like my surgeon much more, but his reasoning makes sense to me. If I were you, I'd ask about getting input from an oncologist, as well as getting answers on your thyroid question.  

Yes, the lobectomy was done by VATS.  I have three tiny incisions on my left side--the largest is maybe 2-3 cm, the others much smaller.  My recovery was complicated a bit by subcutaneous emphysema--there was a small air leak that got under my skin, making my upper chest, neck, and face swell up with crepitus (air bubbles).  It was just beginning to happen when I was discharged, and my surgeon told me to call if it didn't resolve quickly.  Two days later it was worse, so I was re-admitted to have a chest tube put into place so I could properly deflate.  I was back at work (desk job) two weeks after my final discharge from the hospital.  I had some sore muscles from coughing for a couple of weeks, but within a couple of months I was feeling almost completely normal.  As I said, I still have some numbness around the incisions.  Apart from that, about the only time I notice anything "different" is when I have a sharp intake of breath (e.g., right before sneezing), when I feel sort of a sharp twinge.  It's not really painful, just noticeable, though momentary.

[rondac71]

Hi, Lexi. Sorry for the disappearing act. I had 3 year old with a broke leg over the weekend. Then my follow-ups on Monday and a visit to the emergency room yesterday with a bad case of vertigo. Fun fun.

My endocrinologist said everything looked the way it should so I'm good on that front. Now, onto the thoracic surgeon. My CT shows a nodule in my right lung that wasn't there before. I'm a little, no allot bummed about that. So, I'm going to get another CT in 4 months to see if it's grown any. Then we'll take it from there. I'm not gonna let it best me down but it's hard not to. With things going the way they did this past year nothing would surprise me. Since both my lung and thyroid cancers were early stages and removed, I told my brother, I must be the luckiest unlucky girl in the world. I hope so anyway. I hope all is well with you today. Look forward to hearing from you.

[Judy M.]

Just wanted to chime in and say radiation therapists rock. And I've had a lot of radiation. Since my chemo failed radiation is what has kept me alive and able to live my normal life. I told my Radiation Oncologist I was probably one of the few people who can say they have good memories from having had radiation. They are all so caring and upbeat and funny. They kept my spirits up. Hope your next CT is a twin of the last one and you remain the luckiest unlucky girl. 

Judy M. 

[rondac71]

Thanks. I've been fortunate enough not to have any patients hate me. I take great pride in the care I shared with all my patients. Happy, sad, mean and mad. I still have contact with several patients I treated from 2004 to 2010. Which is when I stopped working to take care of my mom who died of lung cancer. It's so awesome to hear that we rock. I think most people view is as being the ones who will hurt them. Nope, a few minutes with me and my former coworkers could change anyone's mind and outlook. Thank you, thank you, thank you.

[Robert Macaulay]

Rondac71 I met the doctor yesterday for the time who will be in charge of my radiation treatment and I knew right away I was in good hands the way he took the time to explain everything as I had radiation treatment for my earlier cancer in 2002 and he told me we will have some challenges because of my surgery in 2003 Larengectomy but he was going forward with a aggressive approach and explained some of the difficulties that dangers he had to be very careful with. He brought my appointment forward yesterday and saved me staying another night in the Hotel and he would phone me next Tuesday at 1pm with the results of my petscan this coming Friday also the times and dates when my treatment starts and take any further questions on the scan. Now that is what  call one very good presentation and made me feel very good going forward.

[LexieCat]

Hi, there, I'm gonna be sorta scarce, myself, through this weekend.  I'm in Oregon visiting my dad, who's nearly 89.  He's hanging in, but declining due to age.  I just escorted him for a walk down the hall with his walker, and he got dizzy (low blood pressure).  He's in Assisted Living and the nurses just had him go lie down for a bit.

I admire anyone who does the hard work in the medical profession--I know *I* could never do that kind of job.  

[rondac71]

20 hours ago, Robert Macaulay said:

Rondac71 I met the doctor yesterday for the time who will be in charge of my radiation treatment and I knew right away I was in good hands the way he took the time to explain everything as I had radiation treatment for my earlier cancer in 2002 and he told me we will have some challenges because of my surgery in 2003 Larengectomy but he was going forward with a aggressive approach and explained some of the difficulties that dangers he had to be very careful with. He brought my appointment forward yesterday and saved me staying another night in the Hotel and he would phone me next Tuesday at 1pm with the results of my petscan this coming Friday also the times and dates when my treatment starts and take any further questions on the scan. Now that is what  call one very good presentation and made me feel very good going forward.

I think you have yourself a good doctor. A doctor you trust is always the best. I have some excellent doctors and thank God for them everyday.

[rondac71]

3 hours ago, LexieCat said:

Hi, there, I'm gonna be sorta scarce, myself, through this weekend.  I'm in Oregon visiting my dad, who's nearly 89.  He's hanging in, but declining due to age.  I just escorted him for a walk down the hall with his walker, and he got dizzy (low blood pressure).  He's in Assisted Living and the nurses just had him go lie down for a bit.

I admire anyone who does the hard work in the medical profession--I know *I* could never do that kind of job.  

We'll have to play catch up later. Enjoy your visit with Dad. I know being a radiation therapist I've been hit, screamed at and cussed at by patients. But you just have to stop and put yourself in their shoes. God knows, there are therapists out there that just don't care anymore and that's sad.