Stage IV need advise tonight

I'm so sorry you find yourself in this position--I'm sure this is a difficult decision to have to make.  I will tell you that this happens so often--each doctor recommending what they are most familiar with.  However, I will also tell you that if it were me, I would be having the surgery, then consider getting chemo as some extra insurance that the tumors are gone and won't return.  In my mind, getting the tumors removed is the only sure way to know that they are gone.

On another site that I'm on, there is a woman who has had tumors show up in her lungs a couple of times and both times, she has had them "plucked" out, to use her word.  I believe that afterwards, she has had both radiation and chemo.  To date, she is doing well--a stage 4 survivor who is living a full life.  Her treatment has all taken place at MD Anderson in Houston.

Please keep us posted on what you decide.  You will be in my thoughts and prayers.

Martha

mp327 said:

nicotianna

I don't know if you will see this message before you go in for your surgery, but I want to wish you all the very best and let you know that I will be thinking of you.  You will be in my prayers tonight.  Please let us know how things went when you are up to it.  Hugs!

I hope all goes well for you today. Sending you hugs 

Liz

nicotianna said:

surgery is the plan

Sandy - Your oncologist is right!  You need a biopsy or at least a pc. of tissue to make a plan.  Theoretically, I am not stage IV until we know it's a met.  Getting chemo not knowing what is going on is not a good idea.  No one thought I should get chemo except my oncologist & her peer (I think).  So, I am having surgery tomorrow.

Your report does not seem bad to me.

Thanks for your interest.

Probably will not feel too good 'til Sat w/f/u:)

Nic

How did the surgery go? 

I hope you are feeling better. 

I feel so close to you right now.

Thanks for saying my CT scan didn't sound so bad. I smiled at that. I guess we just won't know unless we biopsy it and that is what my oncologist thinks we should do.

So no wonder I am feeling close to you.

I read that your throat is really sore afterwards since they go down with the bronchoscopy. Did they have to cut you open at all or were they able to work from the bronchoscopy? 

My report may not look so bad, but the bad part, I found out is that because it is located so close to my heart, it's going to be a tricky procedure. I feel if I go through all that they should remove the whole thing while I am under sedation so I won't ever have to see it on the report again. It's been there for three years!

Well, have a speedy recovery. We all need to hear from you soon.

fondly,

Sandy

nicotianna said:

S/P RUL VATS apical & posterior segmentectomy & lymphadenectomy

Hi Sandy - My surgery was minimally invasive.  About 5 nodes were removed in addition to the lung segment.  I did not have a bronchoscopy but had general anesthesia.  So I had a tube in my throat during surgery to protect my airway & provide ventilation.  I had very mild throat discomfort post-op due to this.  I have ~ a 2" incision & maybe 2 other tiny ones for the chest tube & maybe the vdeo equipment (not sure).  Anyway, the chest tube came out on the 2nd post-op day just before I was dc'd (8/22).  This did not hurt, & actually, I was more comfortable w/it out.

The nodes were close to important vessels such as the pulmonary artery.  I need Gray's Anatomy to actually know the situation.  Probably can find it on line.  Because of the proximity to the important vessels the surgeon has to be good.  They wanted to prevent my going into atrial fibrillation which could happen because of the close proximity to the heart & blood vessels.  Post-op I received metropolol (a beta blocker) to prevent a fib.  I will be taking this for a couple weeks.  No big deal.

They gave me something IV (apparently) in the surgical waiting area & I woke up in the recovery room.  I never felt or saw a thing in the OR.

I am waiting for the path report.  I think it will be a met (metastasis):(

Thanks for your good wishes!  I am hoping your surgeon is confident that he can do it for you if this is indicated.

Nic 

Thanks for explaining your procedure to me, Nic. 

Are you a medical professional yourself? You seem very confident using a lot of terms and abbreviations that I am not sure I follow. I've always been impressed by your level of communication. This was pretty clear to me though and I am so grateful you shared it. The proximity of your "thingamagiggy" sounds similar to mine. Gray's Anatomy would be handy about now:-)

But that you are doing fine and taking care of yourself means the world to me. I have not known what to expect after the 8th or after the surgery (biopsy or whatever) but if yours went this well, I feel much more confident mine will too.

Thanks again for sharing and God bless you for your courage. I am praying it's not a met, but if it is, it is. This life thing is all about one day at a time and sometimes we enjoy our days more knowing they are numbered as everyone's certainly are. I am finding that anyway. And it helps not to be in pain any more like I was for YEARS before my initial diagnosis. I am truly grateful for that and very happy you are not in pain either.

Enjoy your summer.

Sincerely,

Sandy

nicotianna said:

abbreviations

Hi Sandy - I am an RN w/a masters in nursing.  My focus was neuro.  Forgive the abbreviations.  Ask me the confusing ones.  I have learned so much on this web site & found excellent resources from it.

s/p = status post

RUL = rt upper lobe

LUL = lt upper lobe;  lol = lots of luck (not medical jagon:))

met = metastasis

I did find a diagrahm on line from Gray's anatomy of the nodes & vessels near the lungs & heart.  I googled it.

Thanks for your encouragement & kind words.  I am wishing that your biopsy is negative for ca.

Nic

Being as smart as you are and well informed probably doesn't make things any easier right now.

I can't believe I didn't even get LOL right if it WASN'T a medical abbreviation. All these years I thought it was about laughing!

I will look at the anatomy of the lungs and heart too so I can be prepared to ask the doctor exactly where this thing is. I wish the other Pulmonologist had never told me that it was so close to the heart she didn't know anyone who would biopsy it (but I think she was referring to a "needle" biopsy). Surely if they can do heart surgery it could be done by somebody. My husband has offered to do it in his garage:-) He really wanted to put the titanium screw that was placed in my head for my hearing implant, but I said no to that also. (I guess I shouldn't say lol here) but hope this brings a chuckle.

Hopefully you get more than a few chuckles out of my ignorance. Sometimes it is bliss but other times, definitely not. Where are you getting your cancer treatments? It sounds like were in good hands for the procedure.

All the best,

Sandy

nicotianna said:

abbreviations

Hi Sandy - I am an RN w/a masters in nursing.  My focus was neuro.  Forgive the abbreviations.  Ask me the confusing ones.  I have learned so much on this web site & found excellent resources from it.

s/p = status post

RUL = rt upper lobe

LUL = lt upper lobe;  lol = lots of luck (not medical jagon:))

met = metastasis

I did find a diagrahm on line from Gray's anatomy of the nodes & vessels near the lungs & heart.  I googled it.

Thanks for your encouragement & kind words.  I am wishing that your biopsy is negative for ca.

Nic

Thinking of u today ... I hope u get a good report !  Xo