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Another newbie - Hoping for some help with questions

Carlee
Posts: 100
Joined: Jul 2013

Hi!  I had breast cancer in 2009 and was NED until they found lung cancer last month in the top of my left lung.  I am having more tests run this week and may get the VATS surgery scheduled for next week.  Can anyone tell me anything about it?  Is it painful?  Was the recovery a long time, months?  My surgeon said it could be 3 to 6 months for recovery and that I could not lift anything over 10 pounds.  Were you in the hospital long?  He said perhaps 4 days.  Did you have a drain and did you come home with it?  Could you sleep in your own bed when you got home?   Could you shower very soon? 

Sorry for all of the questions..I am just scared and don't know anyone with any personal experience with this.

Thanks in advance!

Carlee

z's picture
z
Posts: 1251
Joined: May 2009

Sorry you had to find us.  I had vats on my lower right lobe on 9-23-10, and was in the hospital 3 days.  I had my sister with me for 3 days at home, to help change the bandage on my back, as I was still leaking.  I didn't take a tube home with me for drainage, but I have read where others had.  I went back to work after 1 month.  I felt I recovered daily for about 6 months.  Feel great now.  I was able to take a shower.  Try to walk a little everyday and do breathing exercises.  I slept in my own bed with pillows to elevate my back as that was the most comfortable.  I know its scary but you will be fine.  I hope others will chime in.  I also visit the Inspire Web site for lung cancer theres lots of activity on that site.  I wish you well and keep us posted. Lori

 

PS I had anal cancer and completed tx on 6-30-09, and I am fine from that.  The lung cancer wasn't a met, it was a new primary.  Your drs should be able to tell after they take it out.

Carlee
Posts: 100
Joined: Jul 2013

Thanks Z!  I am scared to death.  My husband, family and friends are being very supportive, but, it doesn't take away the fear of the unknown.  They "think" it is a new primary and not mets from breast cancer, but, they won't know until the surgery and the path report. 

Tomorrow I am having the heart stress test to see if my heart will be ok for the surgery.  The surgeon said it was a 4 to 6 hour surgery.  Also, another CT scan. 

The first surgery they will do is the mediastinoscopy, to see if the cancer is in my nodes.  If it is, he won't do the VATS, as, I guess I would be doing chemo and or rads then, prior to any more surgery. 

I've done so much research on breast cancer, that I feel I know so much about it, but, I know nothing about lung cancer.  This really came out of the blue. 

Thanks Z for your post!  I appreciate it a lot!

Carlee

p.s.  Just thought of some more questions.  Did you have staples or stitches?  Did you have to have them taken out?  If so, how soon?  Were you on a lot of pain meds in the hospital?  I've just heard that this so painful..  How do they follow you after this?  Checkups every so often?  Tests? 

z's picture
z
Posts: 1251
Joined: May 2009

I had the disolvable stiches, and I had a follow up after a month with the surgeon, then he turned me back over to my oncologist.  Since it was a stage 1 squamous cell lung cancer I didn't require chemo/radiation afterwards.  Initially, I was ct scanned every 6 months (about 3 times), now I am scanned once a year.  The next scan for me is November.  The pain meds were dispersed to me as I needed them, the staff would ask my pain level.  I had percocet for at home, and used them until the perscription was used up, then didn't need anymore.  Yes it is painful but the meds helped me through it.

 

When I had the vats they did the biopsy right there in the OR, then after they determined there was no node involvement and that it was cancer they removed the lobe.  My surgeon does about 40 vats a year, so I felt confidence with him.  Also, I was informed that if vats wouldn't work they would have to do the standard operation with opening your chest with long incisions.  I have 4 inch incisions a couple, and you can't see but 1 of them on my back.

I know its scary and I'm glad you have your familys support, that is so important.

 

P.S. I was a 35 year smoker until the anal cancer.  The anal cancer had hpv and the lung cancer didn't so thats how they determined it wasn't a met.  

 

gravelroad
Posts: 44
Joined: Oct 2013

Hi, I HAD A PET/CT SCAN ON A SMALL NODULE IN MY LOWER LEFT LUNG , IT FIRST SHOWED UP ON A CT SCAN FOR MY HEART WELL HEART WAS FINE BUT THIS SMALL 8.7 MM LUNG NODULE SHOWED UP SO DR SENT ME TO HAVE A FULL CT CHEST SCAN AND IT TURNED OUT TO BE A S.L.N. SO i WAS GLAD ONLY ONE NODULE AND SMALL, WELL NEEDLESS TO SAY MY DR SENT ME TO SEE A SPEC AND HE SAID IT WAS IN A VERY BAD AREA TO BIOPISY BEING NEXT TO A LARGE VIEN SO HE SENT ME TO HAVE  A PET/CT SCAN THAT TURNED OUT TO BE NEG, IT WAS NOTED THAT i SHOULD HAVE A FOLLOW UP CT IN 6 MTS JUST TO BE ON THE SAFE SIDE TO MAKE SURE IT HAS NOT GROWN. THE SPEC SAID HE CAN GO IN AND REMOVE IT AND STAPLE OFF THE VIEN, YOU MENTIONED IN YOUR LETTER THAT YOU DID NOT HAVE TO HAVE CHEMO OR RADIATION BECAUSE IT WAS STAGE ONE SO I AM INTERESTED IN HOW YOU ARE DOING AND IF YOUR DR THINKS YOU ARE CURED FROM THE LUNG CANCER? EVEN THOUGH MY NODULE DID NOT LITE UP ON THE SCAN I WANT TO GET THIS OUT BEFORE IT DOES IN THE FUTURE, I KNOW IT SOUNDS LIKE AN OVER KILL BUT I DO NOT WANT TO MESS WITH ANYTHING AS WICKED AS CANCER NO MATTER HOW SMALL. SO I AM WONDERING HOW YOU ARE DOING AND WHAT THE DRAW BACKS OF THIS OPERATION HAD ON YOU. AND ANY SUBJESTION ON YOUR PART AS TO HOW TO PROCEED WOULD BE MOST APPREICATED!!!! THANKS GRAVELROAD

dennycee
Posts: 647
Joined: Mar 2011

I had vats to do a talc pleurodesis.  It is much easier than the standard operation. In addition to that long incision that Z mentions, they have to break several ribs.  I had the drain in for a month and was able to shower just fine.  It's much easier than constantly going back to the hospital to have it punctured and drained every few weeks.  Recovery is much faster with the vats and many get back to work in a couple of weeks.  The most frustrating thing for me was not being able to extend the arm on that side all the way up  Over my head. 

If this does turn out to be cancerous and if it is non small cell, they will do a ct every three months for two years, then every six months for three years then once a year.  As a survivor already, you probably remember that its not cancer until the biopsy says its cancer.  

Carlee
Posts: 100
Joined: Jul 2013

You've all been so helpful and I thank you so much.  Ugh to the drain.  I am hoping that they will be able to remove it before I come home, if I have one, and, I probably will.  Yesterday I felt awful, but, got thru the tests but went to convenient care and I am on an antibiotic now for a bacterial infection.  It really is just a bad cold, but, it seems mainly in my throat.  My throat hasn't felt well since the bronchoscopy that I had done weeks ago.  Wondering if I got a baterial infection somehow from that.  My surgeons office hasn't called me, so, I don't know when the surgery is yet.  I don't think they can do it until I am done with this antibiotic, can they?  So, that would be the week after. 

Were you all in a lot of pain after the surgery and when you came home?  What did you take?  Were you careful with the pain pills, if you had some, because of constipation?  I know my questions might seem dumb, but, this is all new to me.

Thanks!

z's picture
z
Posts: 1251
Joined: May 2009

I had percocet for pain pills.  While in the hospital they didn't give me anything for constipation and it was painful at that end when I  returned home.  You have good questions and make sure when your in the hospital they give you something for constipation, as it looks like your aware of what the pain meds will cause it.  I was in pain but the pain meds helped me through it.

 

conniemcqb
Posts: 2
Joined: Aug 2013

Carlee-

 

Good luck with your tests and the surgery.  Did they tell you what type of lung cancer or are they waiting to see if it is mets brom the breast site?  I had my upper right lobe removed.  Sore as heck for quite some time but as others said the pain meds helped although I was allergic to codiene and percocet so I got darvacet (sp) for a bit then tylenol. 

Expect to be sore in the rib area a good 3-6 months but not unbearable.  Also you may want to adjust your bed so the head is raised as it makes it easier to breathe and sleep.

Drink as much as you can and eat when you can. My husband keeps a bottle of water next to the bed for me as I still wake him up coughing once I slip off the pillow.  Initially and for about a year we raised the bed on my side using telephone books.  My onc also told me no feather pillows and to buy new ones before surgery so no germs or dust in them.

 

I can say this I am 5 yrs out still fighting hard, just had 14th surgery last week and am up typing tonite.  Sleep sucks for me.

 

My prayers for you.  Someone else mentioned Team Inspire chat forum.  I love it there and have learned so much!.  Check it out when you can.

 

Good Luck

Connie

Carlee
Posts: 100
Joined: Jul 2013

They "think" it is a new primary and not mets, but, won't know until I have surgery and the final path report.  They said it is non small cell, which is suppose to be good, meaning slow growing? 

What is the site?  Team inspire? 

I think this bacteria infection/cold is turning into bronchitis now.  :(  Trying to get my strength up so I can have the surgery.

Thanks so much everyone.

Carlee

z's picture
z
Posts: 1251
Joined: May 2009

Good news that they don't think its a met, as you say they will know when they biopsy it.  Google Inspire and it will come up.  I wish you well, keep us posted and take care of that cold. Lori

Carlee
Posts: 100
Joined: Jul 2013

I am praying it isn't mets.  When they did the bronchoscopy, that's when they got the biopsy, but, all that did was tell them mainly that it was cancer.  I really ought to read the report more thoroughly.  It all still seems like a bad nightmare :(

Thanks Lori..I will google Inspire.  You've all been so helpful!

 

Carlee
Posts: 100
Joined: Jul 2013

Went to my GP yesterday and I do have bronchitis, so, he gave me 2 kinds of cough medicine and told me to stay on the antibiotics that I was already on.  He is hoping that I will kick this soon with bed rest, liquids and the meds.  I hope so too..I feel awful.  My husband has been great to take care of me.

They have scheduled my surgery for the 21st, so, I have to get over this.  They will check my nodes first to see if they are positive or negative and go from there.  I am afraid that they will be positive and then I will have to do chemo and or rads. 

I am so scared and so mad that this came back..

 

Hugs to all of you!

z's picture
z
Posts: 1251
Joined: May 2009

I pray that theres no node involvement as well. 

Just know that there is a lot that may be done with lung cancer now.  If you couldn't have surgery now due to nodes, then after chemo wipes the cancer out of the nodes you could have surgery.  Also, many lung cancer survivors are inoperable yet have chemo and radiation and then show now sign of cancer.  I was just reading about Stage III inoperable and there are a lot of long term survivors there.  I hope you found Inspire, as thats where I read about them.

No node involvement so you can get this taken care of is what I'm praying for.

Lori

 

Carlee
Posts: 100
Joined: Jul 2013

Thanks Lori!  You have been so helpful and I appreciate it!  My surgery is the 21st, just 2 days away, but, I won't know if he can do the VATS or if my nodes are positive, I will have to wait.  This uncertainty is hard.

Wish me luck and send a prayer too.

Thanks!

Carlee

 

 

Carlee
Posts: 100
Joined: Jul 2013

I am home recuperating from my surgery.  My surgeon did not do the VATS surgery as there were other cancerous nodules, besides the tumor, and, cancer in the lining of my lung. He said doing the VATS would have solved nothing and he felt it better to leave me with my lung to help with my breathing. He did do the Mediastinoscopy to check my lymph nodes and they were clean, even though they lit up on the PET scan.  That was good I guess.  I am still in pain as he did put the camera in me to do the VATS and spread my ribs.  And wow, did that chest tube hurt.  I was so glad when they took it out the next day.  The path report is still undecisive as to if this is breast cancer that went to my lungs or lung cancer.  I will be seeing a new oncologist, but, just waiting to feel better and stronger now.  My surgeon said I am stage IV, terminal and he said maybe 8 to 14 months left.  However, when we went back to have him remove the stitches for the follow up, he said maybe 2 years with treatment.  So, I guess I will just wait and see what the oncologist says.  I don't think I will do chemo as even the surgeon said it might only give me 3 months or so more and I don't want to go thru that just for a few more months.  I'd rather still feel good and have quality over quantity.  I don't know if rads are possible or not, but, I doubt they can do anything if it is in the lining of my lungs inre to using rads. 

Anyone else been given a date or time limit? 

Thanks, Carlee

z's picture
z
Posts: 1251
Joined: May 2009

I am so sorry that it was in the lining.  Is that the pluera?  I know when I visit the Inspire web site there are many stage IV survivors and they have lots of knowledge.  I know if you copy and paste the above post to Inspire you will get many responses.  I think the 1st one would be no one knows how long any of us have, so for the dr to give a time line is not definite.  Please post over there, they will ask if you will have the tumor tested for mutations.  There are many targeted chemo therapys available now.  I wish you well and I hope you will post over there. Lori

Carlee
Posts: 100
Joined: Jul 2013

Yes, Lori, I think that is what it is called.  Was the site Inspire.com?  I do need to get on that site.  You have been so helpful to me and I thank you so much!

 

Carlee

Carlee
Posts: 100
Joined: Jul 2013

I see the new oncologist this week to see what she says.  Like I wrote earlier, I doubt I would do chemo unless she could tell me that it would add a year or more to my life expectancy.  It just isn't worth it.  I wonder if they do rads to get rid of a tumor in the lung?  Anyone know? 

Carlee

dennycee
Posts: 647
Joined: Mar 2011

When I was diagnosed with stage four adenocarcinoma I was told I had them months with treatment.  That was October 2010.   the figure your dr gave was based on hundreds of thousands of patients and an individual is hard to predict.  Exercise is a big factor in my success.  Gentle exercise can make a huge difference.  

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Dear Carlee,  Only God knows when one will go to joing Him.

I do not like when doctors say that, I will pray for you and remember, He is with you all the time.

Rosi

Carlee
Posts: 100
Joined: Jul 2013

I wish they wouldn't tell us that either, but, they do/did.  My doctors keep telling me that I am so healthy, except, for the cancers I had. 

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