MaryTD777

Thank you Bruce. I hope you continue to have good health.
I'm petrified. I know I shouldn't go down the google rabbit hole but I do and when I do, I read nothing positive about having one nodule in each lung. It seems bilateral almost always means malignant or mastastic.
I'm trying to stay positive but am bracing myself for bad news. I only hope that if it is malignant it is caught at an early enough stage to give me a chance to beat it.
I really love you guys. I need honesty and hope. I feel I get that here.

Hi Buzzy,
Tom gave you great advice. Just 1 note to ease your mind and bit. A 1mm change can be nothing more than a difference in the type of ct ordered (36, 58 or some other numbers I can't remember exact details) the pix aren't taken every __ mm and if it was 1 number you get closer details. The other difference could be exactly where in you the CT started. If they happen to start at the exact edge of the lesion it could look bigger than if it started part way through that first mm the end of the lesion appeared to be gone, aka smaller.

I suck at explaining but a mm is small and where it is between slices or on them will allow for a .5mm difference between 2 or 3 CTs.

This was explained to me when I had my first 1mm difference between 2 scans 3 months apart. I wish I could make it sound better. Ask your doctor about it next time & I'm sure they will make it sound crystal clear.

Fingers crossed all is benign!!
Mary

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Deirdre, I have had two needle biopsies, one in each lung. For the first one they gave me some Versid(?), or whatever they call that "twilight" drug. It wasn't nearly enough. MIne were both CT scan guided. They are aiming for something really small and because your lungs move when you breathe, you have to be completely still. I didn't like the interventional radiologist's "bedside manner" and it did hurt a little, but not too too much and the procedure doesn't take an unbearable length of time. When I went in for the second one, I really liked the guy a lot and I was more relaxed, but I told him flat out that I'd done this once before and I want more drugs. They put it in your IV, but if I made the slightest sound while he was working, it felt like he also was able to release some kind of numbing medication so not only was I completely relaxed, I couldn't feel the needle at all. PLUS, I motioned for more in my IV so he told the nurse to go ahead, which she did. It didn't hurt at all. So, I'd tell them you know it can be done painlessly. My two were like night and day, and the second one was trickier because it was small and behind breaat tissue and a rib. Cindy
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Have felt good enough that I was not posting here. Now the medication I was taking stopped working (crizotinib) as I was told it would. I've signed on for a clinical trial. Going today for a brain MRI. Makes me want to sing and dance to Scarecrow's song in Wizard of Oz, If I Only had a Brain! La,la, la...anyway working on positivity. one daughter turned me onto Louise Hay. I like her attitude. Might as well smile! 
Good day to all!

Superb news!  Very glad to hear the VA treated you well.
 
You'll likely have between 4 and 6 infusions of chemo after surgery.  We call it, informally, dustup chemo and its purpose is to kill cells in the bloodstream.
 
I wouldn't know about the benefits of Hemp Seed Oil but I hope it his helping you.
 
Stay the course.
 
Tom

Hello Antony!  I'm so sorry that you and your wife are dealing with this.  Being a caretaker and trying to stay positive is very difficult and I understand.  I will be praying for both you and your wife.  Please let us know how she is doing and if you have any questions or just want to vent, we are here for you ((hugs))

Thanks, Tom. I have talked to the office of the thoracic surgeon. They don't want to schedule an appointment until I get the results from the Pulmonary tests and the PET scan is complete. If it does go to surgery, I will be sure to ask about the genetic testing of the tumor...and treatments based on the genetic typing. I'm remaining hopeful it hasn't spread, because all through the hospital stay with the pneumonia, all the doctors, including the oncologist, comment how odd, strange, weird, different, 'never seen anything like it', etc, my mass is when viewed on X-ray and CT imaging. The oncologist even comments that the tumor may not even be as big as it appears, that it is just odd. The bronchoscopy they did in the hospital was very clean, nothing grew, no malignancy cells seen (although they did say that really didn't mean much).
Thanks for being there. It helps me alot....especially knowing you are at 12 years survival this year!
Jan

My husband was diagnosed with stage 4 Adenocarcinoma with malignant pleural effusion.  He was only offered chemotherapy since it was inoperable.  His doctors gave us little information or told us about any additional choices so it was a very hard time.  I am praying for you and if you need someone to talk to, we are always here.  (hugs)

Some of you here may already know me. Name's John. I go by @JohnLPender on Twitter, which is where you'll usually find me. I am on the #LCSM chat every other Thursday, which is how I found out about this place.
I was diagnosed December 9th, 2014 with Stage 3 non-small cell adenocarcinoma, post biopsy, with small metastases to nearby lymph nodes. I had (and still do have) a massive tumor that took up pretty much the entire upper lobe in my right lung, so much so that the empty space above it had ceased the function and collapsed. A week later, after my initial PET scan, I was told (at least this is what it felt like at the time) "LOL J/K. You have Stage 4!"
Long story short, they found the ALK genetic mutation in my biopsy and I've been fortunate enough to forgo chemotherapy. I've already been through a year of Xalkori and am about two months into Zykadia now. It's been 15 months now and I'm still kickin'.

​Ralph,
​There is another thread in this list from a woman who had her surgery last Tuesday and posted in here on Thursday that she was home already. I hope all goes well for you when you have your appointment.
​Good luck,
Mary

Hi Mary,
Whoa!! I can't even imagine ribs being broken and removed and the post pain from something like that. I'm sorry to hear this still affects you 4.5 yrs later.
My pain seems to be related to the lower lobe wedge resection, severe pain starting late in evening and lasts all night long waking me every two hrs because of pain. Nerves maybe??? I have minimal pain from the upper lobectomy.
Since my pain level is not severe during the day I started on Aleeve today and will use prescription meds at night, this is what my PA suggested the cut down on the amount of Tylenol I have been taking daily.
I got the final report yesterday and it did not change, all lymphs were negative for cancer and the nodule removed from lower lobe was benign (infectious infiltrate). The doctor feels all cancer was removed with upper lobectomy and I need no follow up treatment, just follow up scans. So for right now, I am NED, YAY!!!!!
Hope you are doing well Mary!!!!!
Blessings,
Rhonda

I have called Genetch.  Although they can not give me Tarceva right away as my mom is in Taiwan, they give me the phone number of Roche(Genetech's parent company) in Taiwan. 

​YAY!! Welcome home!! Sorry you are having a rough time. I am actually still dealing with pain management 4.5 years later. I left that part out of my previous posts mostly because I had hoped VATS would be far less painful and because it sounded like my surgery would be terribly painful from day one because of all the bones being busted up and removed. I do hope sleeping in the chair works for now and you can soon return to "normal" in sleep and everything else.
 
​Too bad about the summit!! I have been to the one in DC a couple of times and hope to go again this Spring. It is a Wonderful time!! To be surrounded by people who GET IT! You are now part of a club. Only certain people get into the club, none by choice, but there is a camaraderie that can't be taught. It happens when you see someone facing what you faced and you know how it feels and you want to make it easier because you know it will never be easy.   
 
​Mark your calendar now for next year!!
 
 wo​Take care and let us kn

Welcome here Michelle!
 
After reading your post, I had to Google LEMS.  I thought I had a tough row to hoe.  I'm a non small cell squamous cell guy so I don't know how much of this tracks to small cell but I do know a thing or two about taxol.  
 
What do I know about cancer treatment?  Cancer is persistent and I had to find a way to be more persistent.  I didn't learn the more persistent required attitude until I was about 2 1/2 years into treatment.  But I read about a guy who was fighting stage IV lung cancer in second line chemo who was swimming laps, walking the beach, playing with his kids, and enjoying life.  I was depressed, bitching, moaning and complaining by comparison.  He was experiencing what I now realize is the most important side effect of cancer treatment - extended life.  He figured, if he chose treatment, he chose life and he was actively engaged in living it.  I figured if he could do it, so could I.  If I can do it, so can your husband.
 
I've come to believe that my attitude towards treatment and outcomes is my most effective weapon in my fight with cancer.  I started to believe I was going to survive and then believed I could do better, I could thrive.  My mistake was letting cancer take over my life.  Caregiver tidbit - coach him up in this regard.  There is meaningful and productive life during and after cancer but one needs to decide to make it so.
 
Stay the course.
 
Tom

Hi Everybody,
I made it and am back home today. So here is how it went.
When I first got there the doctor told me me they were going to anesthetize me the first do a CME, where they make a incision in your neck and scope to biopsy my mediastinal lymph nodes. If they had been positive for cancer that was as far as they would go, no lobectomy.
When I woke up my family relayed to me what the doctor said.
All lymph nodes were negative.
He did a complete upper lobectomy.
He also did a lower wedge resection because the PET showed a suspicious nodule, it was benign, so no cancer there either.
The 3.6cm cancer was removed in the upper lobe.
He told my family that I will not need follow up chemo because they got all the margins.
Just going to be honest, I had a really bad day yesterday. They did not give me a morphine drip so I was taking Norco by mouth and Toradol by IV, in a lot of pain (to be expected) I had a reverse reaction to the narcotics, I was very wired and had been awake for 40 hrs, it was only late last night that I could get 4 hrs sleep sitting up (after asking for Xanax) this morning I refused more narcotics and went to Tylenol.
Yesterday I was throwing everything up, even water, they thought I had a Ileus, did a stomach xray, didn't get the report but it resolved overnight and today ok.
Still having a lot of reflux figure it is from the scope, got lots of Halls lemon cough drops for throat.
They sent me home with Tramadol which I will tolerate better. Doesn't get rid of the pain but after major surgery nothing but time will help.
They removed my chest tube yesterday and no it sure wasn't pleasant but afterward felt much better.
I feel pretty good considering, the worst pain is my neck, chest, where they scoped me.
They also told me they had to use a larger intubation tube for my procedure so I'm sure that is also why it's pretty painful.
Before I had my surgery my oxygen levels were 97/98 during the day without oxygen, today they are 95/96 without oxygen so all my worries about being on oxygen 24/7 because of getting the lobectomy with COPD were unfounded.
I want to thank you all for your prayers, support and encouragement.
I will do everything they told me to post op so hopefully will heal quickly.
Blessings to you all!!!
Rhonda

Rhonda, I had a bunch of people praying for me. In fact, it was kinda a miracle it was found so early stage. I'll be praying for you tomorrow. Careful. Don't text on heavy duty pain pills. I did and I'm still blushing from embarrassment.
Hugs, Barb Jackson

Hi Tom,
Oh wow, thank you!! I will certainly be aware of that short count Funny how our minds let us forget things after awhile. When I had the core biopsy, the nurse kept saying, "she's not even flinching", what they didn't know is that my toes were curled under so tight I am surprised I didn't break a couple. Guess I knew the ramifications of moving during a biopsy.
I appreciate your support Tom very much, you have helped me in so many ways, more than you realize!!
Blessings to you,
Rhonda

Rhonda,
 
How did I miss your good news announcement!
 
OK - here is some advice on the chest tube.  I've had many installed and removed.  Every time, my thoracic surgeon short counted me.  You know - "I'll pull it on three - ready, one, two" - pulls tube!  And I believed him!  It is a two person procedure.  They use a circular stitch that is installed around the tube and the nurse grabs the sutures.  When the doc pulled the tube, the nurse pulls on the sutures.  And, it really doesn't hurt.  Just a bit of drama that is now a humorous memory.  But, no one ever told me, so beware of the short count!
 
Stay the course.  
 
Tom

​Well said!!
 
I tend to make sure that when I see the doctor before the surgery or procedure I ask them how THEY are feeling/doing!! Did they sleep well? All the kids are doing well? Wife/Hubby is happy? LOL!! It sounds a bit like what you said. At the very least I get a giggle out of them and that is MY way of reminding them that I am a person, parent, spouse, pet owner or whatever else I want them to think of me as when they open me up and I suddenly look like any photo from a text book or slide show.
 
​Always looking for a smile or a giggle!

AWESOME!! So happy that you can have VATS!! It is a lot for each of us to deal with, no doubt! You have gotten some of the best news so far with this as well as the IA or IB staging! Mine was IIB and was Dx March 23, 2011 chemo & rad May & June with lobectomy the "hard way" Aug 2011. NED (No Evidence of Disease) ever since Thank God!!
 
I jokingly say the "hard way" because I had 2 surgeries in one. The first was a Neuro/Ortho Surgeon who had to break apart 3 vertebrae in my neck to get the tumor free, then the Onc Surgeon did the lobectomy and chest wall resection. NO one ever wants that "2fer" if they have any way to avoid it! LOL
 
The one thing I do hope we share is hearing those beautiful words that we shorten into NED and we ALL want to hear after every procedure, surgery and scan from here on in. Please keep us updated and stick around after you are all Happily NED ever after! You have to share your story to the next new person that pops in on us  
 
XoxoX
 
​

​Rhonda,
​I will keep you in my prayers extra often on Tuesday!! Just remember you want that ugly stuff gone ASAP!!
 
Vicki,
Hi! I am sure it was a HUGE shocker! Most people think of lung cancer as being for old guys with smelly stogies between their lips. Not that anyone deserves any kind of cancer, but 33, 40 or even 47 year old ladies are not the typical image that comes to mind. I have been STUNNED by how many young women are diagnosed out of the clear blue!! Girls/ladies in their 20s and 30s who jog, mountain climb, run marathons and all kinds of 100% healthy lifestyles. Not only do people like you and me not expect them to be diagnosed with lung cancer, their doctors don't expect it either. I have spoken to people who have been where you are. Many go through so many other diagnosis' like allergies and asthma and pulled muscles. It has happened to older people who quit smoking decades before too. My hubby saw it happen to his mom.
 
That is why people like me shout lung cancer facts every chance we get!! We need people to know MORE about lung cancer than they do about breast cancer, since they don't know much about that beyond pink ribbons and mammograms.
 
​I am sorry, I tend to babble.
 
Welcome to the group!! Please pop in often and let us know how you are doing! Share stories, ask questions or say most anything you have to say.
 
Both of you, be well!

Hi everybody,
Got my call, surgery is scheduled for next Tue, the 16th. VATS left upper lobectomy with several lymphs. Scared but sure is better than the alternative!!!
Will post again after surgery.

​Well said!!
 
I tend to make sure that when I see the doctor before the surgery or procedure I ask them how THEY are feeling/doing!! Did they sleep well? All the kids are doing well? Wife/Hubby is happy? LOL!! It sounds a bit like what you said. At the very least I get a giggle out of them and that is MY way of reminding them that I am a person, parent, spouse, pet owner or whatever else I want them to think of me as when they open me up and I suddenly look like any photo from a text book or slide show.
 
​Always looking for a smile or a giggle!

Cancer patients get a unique appreciation and understanding of the medical profession by the very nature of our disease. At the minimum, we interact with our GP, Oncologist or Radiologist, and a brace of medical testing and treatment nurses and technicians. This experience base gives us a lot of insight into the profession. Here is a synthesis of the insight I've accumulated over the years.
Never go to a diagnostic "results revealed" medical consultation alone.
If you don't understand the words the doctor uses, ask them to re-explain without the "medical/techno-speak."
Tell the doctor your special circumstances or medical needs before hospitalization or infusion treatment. Ask these be captured in the admitting orders. Ask to see the admitting orders at admission or before first procedures. Don't get admitted if the order does not cover your special circumstance.
Most procedures can be painless or discomfort can be minimized but you need to ask for relief before the procedure. For example, ask for a lidocaine injection before IV insertion or for Xanax to reduce anxiety during scans. These are examples of special circumstances that should be discussed with the ordering doctor at the time he orders the procedure. Don't be afraid to complain. Be kind at first but if the situation is not resolved to your satisfaction, add anger. Remember, you are paying for all this and you are a customer as well as a patient.
People in the medical profession are like people in any profession. Some are good and some are not so good. The difference is medical professionals have unique authority and special powers that say a consulting engineer or a lawyer will not have. To get prospective on a new medical professional, pay attention to how he or she interacts with the office or clinical staff. They won't treat you any better than the people they work with every day.
The best doctors treat people, not patients. Try and find ways to remind them you are a person. Tell them you are afraid or uncertain, for example, to help them recall they are dealing with a human being. I always find a way to ask if they pray before a procedure.
Most medical professionals, unless also cancer survivors, won't have any idea how or what you are feeling. Tell them before, during and after a procedure.
 
 
 
 
 
 
 
 
 
 
 

Aaron,
 
You sir are in a quagmire.  There may be many benefits of a national health service but choice is not among them.  I'm not from the UK and I don't have a clue how you can influence your General Practitioner to be sensitive to your concerns.  Our US medical system has many faults but we can choose doctors we are comfortable with and obtain second and even third opinions without permission of the Queen.
 
So, here are my suggestions.  I'm a retired US soldier and I've used my Army connections to gain access to doctor's opinions outside the civilian community.  The UK armed services has a medical establishment.  Might you engage that establishment for assistance?  If not performing an actual procedure, to apply influence to have your desired procedure performed.  
 
I did a quick Google search on UK commonwealth nation health systems,  Might there be an opportunity to travel to one of these countries and have a medical consultation.  Outside of the commonwealth nations, the Azores, popular island destinations, appears to have a "for pay" medical system that you might be able to use to get the type of test you desire.  The problem, however, might be getting the UK system to accept the test results.  But, at least you'd know the results.  Know, however, I'm not an expert on international medical policy and there may in fact be quite a lot of red tape using the Azores medical system that I'm not aware of, including the availability of testing technology to address your concern.
 
No need to apologize about your essay.  Lung cancer is a nightmare and at this site, we completely understand your concern and are most willing to read about it.  I just wish I had a useful answer to your very important problem.
 
Stay the course.
 
Tom