Not sure it is cancer?????

[pip1948]

I have a very small pulmonary nodule in the upper right lobe of my lung. Very small,  8mm x 9mm x 12mm. It was discovered when I was having an MRI on my spine. The have done a CT scan, sized it and it has rough edges indicating possible malignancy. Then a PET scan, with a SUV of 3.2, also indicative of malignancy,  no other suspicious areas lighting up in my entire body on the PET scan.  Pulmonary specialist is thrilled and optimistic.  He believes that it is cancer, mostly based on my smoking history and family history of cancer more so than the tests, and readily admits that. He believes that this is it, and if we get it out, I will be in the clear. Despite my years of smoking my lung function is normal. I am 70 years old. 

 I have now seen a thoracic surgeon and they want to do a lung resection check to see if it is cancer, if it is, they will remove the lobe that it is in and two lymph nodes close to it. She is not so optimistic and says that until the cancer, if it is cancer, is staged and the lymph nodes are checked we don't know if they are clear. She does not have a lot of confidence in the PET Scan.  She says because it didn't show doesn't mean it isn't there.  Yet everything I read says, PET is 95% effective at showing cancer, and tends to have more false positives, than false negatives.  

I have three more tiny, tiny spots in my other lung. The pulmonary specialist is convinced that they are benign run of the mill nodules. They are too small at this point to evaluate at all. All the surgeon says is we don't know,they are too small and we can't know. 

This surgery is a major ordeal!! It is just so hard for me to believe that there aren't better diagnostics than surgery !!?? Neither of the doctors are recommending a biopsy. They feel that it is an unnecessary procedure. I think that they both believe it is cancer and this way, they can both check and treat surgically. They are afraid that the biopsy would be inconclusive and  I would have no more information after it than I have now.  

I am not of the mind that I want to fight this at all costs!  I don't want to spend the rest of my life, sick, and miserable, trying to prolong my life.  I also am not interested in committing suicide either.  I have a friend that had a similar situation and they removed a lobe and it has not reoccurred  in 20 years. But, I don't know that these other nodules aren't cancer also, that just haven't grown large enough to really see or that it is isn't elsewhere,  despite what the PET scan says?  

I have scheduled the surgery, however they can't do it for 7 weeks.  One of my other options was to wait and see if it grows?  They would check it in 3 months, well, by the time I have surgery it will have been 3 months since this was discovered!  I am confused and frustrated that I don't have more and better diagnostic information, to determine if it is worth putting myself through this surgery? 

Any advice on all this would be appreciated. 

[LexieCat]

Chances are you would have a VATS lobectomy.  It is a very simple procedure.  I was back at work a couple of weeks later (desk job).  Very little  pain, no lingering effects, no shortness of breath.  I have other nodules, too, that the docs are not concerned about.  Most nodules are not cancer and will never turn into cancer.  After your surgery, you might or might not have a bit of chemo (depending on whether there is any spread to the lymph nodes), and then regular scans to make sure everything stays fine.

Surgery is THE best way to reduce the chance of spread or recurrence.  My doctors didn't do a biopsy.  They felt it was suspicious enough they would want to remove it even if they got a negative biopsy result.  

I was pretty much in your shoes.  I chose the surgery and I'm glad I did.  

[pip1948]

Wow your experience sounds much better than what my surgeon has describe or explained to me.  She said 6 to 8 weeks for recovery and to be out of work. I am 70 years old, and perhaps you were younger and recuperated faster than she expects me too? 

Not sure about the VATS, but they are using robotics, that is one reason that I have to wait seven weeks to have it done, only one robot. I am wondering if that long of a wait for the robotic procedure is worth the risk of spread in the mean time?  She also said that sometimes they start with the robotics and have to change and open you completely up, also?  So just not sure. I the VATS the robotic procedure and is that what you had? I just looked the VATS up and yes that is what she plans to use.

[LexieCat]

Robotic and VATS surgeries are very, very similar--they just use a different technique.  My doc had a colleague who liked using the robots, he preferred VATS.  No difference in effectiveness or recovery time.

Both involve 3-4 TINY incisions.  the 6-8 weeks would be more typical for the traditional "open" surgery.  I was 60 when I had my surgery.  If your health is generally good, I would expect you to be able to do just about anything that didn't involve exertion or heavy lifting within 3-4 weeks at the MOST.  I was driving, going out with friends to dinner and concerts, three weeks after my surgery.  And that was only because I had a MINOR complication that required me to go back into the hospital for 3-4 days (I had an air leak that caused bubbles under the skin--uncomfortable but not dangerous--and had to go back in with a chest tube to get properly "deflated").  If your work is very physical, then yeah, maybe you'd be out a bit longer.  But you would be feeling OK and able to do stuff for yourself--you wouldn't be bedridden and need care.

You might find out whether there's any way you could have VATS surgery sooner.  That doesn't require a special operating room.

[BridgetO]

Hi Pip,

My  small nodule was disovered in a routine every-6-months scan to watch for metastases from an earlier non-lung cancer. It didn't look to the various doctors like a metastasis, but more like a primary lung cancer. They rescanned in 3 months and it had grown slightly. It could not be biopsied by needle or bronchoscope due to it's location. I didn't light up on the PET scan at all---this can happen when a cancer is slow growing and small.  I agreed to a lobectomy and the thing turned out to be lung cancer, adenocarcinoma stage 1a. I needed no further treatment. I do have CT scans every 6 months to watch for possible recurrence. So far, so good.

I had a lobectomy and 27 lymph nodes removed by VATS  (video assisted thorascopic surgery) with 3 small incisions. I was walking around the hospital unit the same day and discharged the following day with a chest drain tube in place because of an air leak. The tube was in place for 10 days and was uncomfortable and I used opiate pain meds. Once the tube was out, I had little pain and used some tylenol and ibuprofen. The surgery was not a major ordeal . I had another cancer surgery that was a major ordeal and the  lobectomy was nothing like that.

My surgery was not quite 2 years ago. My lung capacity is good, I have no pain. My quality of life is just fine. BTW, i was 71 at the tme of surgery. 

It's curious that the docs don't want to do a biopsy by needle or by bronchoscope. It's my understanding that at least trying to get a good sample in one of those ways is standard, unless, as in my case, there is a specific reason. My surgeon took my case to a chest conference ( I think that's the right term) that included other surgeons and interventional radiologists and i don't remember who else, and none of them thought they could do the biopsy without surgery. Is your surgery to be by VATS? If it can be done that way it's much easier than the open surgery method.

One reason lung cancer is so deadly is that it usually isn't discovered until it has symptoms and is advanced and more challenging to treat.I encourage you to continue with diagnosis and treatment. You're fortunate (as I was) to have the nodule discovered while it was small.

Feel free to ask any questions you have. That's what we're here for.

[LexieCat]

Oh, and incidentally, my small nodule turned out to be cancer--adenocarcinoma Stage Ib.  I had the choice of chemo or no chemo--I opted to forego the chemo and just monitor with twice a year CT scans.  With Stage Ia, chemo is almost never recommended.  I was a "b" just because it appeared there might have been some invasion of the lung's lining.  With Stage Ib, it's almost a coin toss whether chemo does any good, and my surgeon recommended against it.  

[pip1948]

So, VATS is different than that robotics?  I also work in an office, no physical labor type stuff and I am part time,  I only work about 16 hours a week. So, Maybe this won't be as bad as she made it sound.  She also told me that it would be very painful and that they probably couldn't take care of all of the pain.  Maybe she just always goes for worst case scenarios ? Then it isn't so bad in reallity? 

[pip1948]

Bridget O, thanks for the pretty much the same story about the surgery that I got from Lexiecat.  These accounts are all way better than what my surgeon told me.  I guess she is a worse case type of person. 

This is very comforting to hear, 

Thank you both.

[LexieCat]

VATS and robotic surgery both involve small incisions. With VATS, there is a small camera and light inserted that helps the surgeon work through a very small opening.  Robotic is similar, but uses mechanical arms, rather than the surgeon's hands, to perform the work inside.  If you google, you should be able to find more detailed descriptions.  One thing I read is that mastering the surgery is a bit easier using the robotic equipment--it takes more training, supposedly, to do VATS.  But many surgeons perform VATS routinely and are highly experienced, the way my surgeon was/is.  Ultimately, I think it's whichever technique the surgeon is most comfortable with.  Mine preferred VATS, so VATS it was.  If I'd used his colleague I probably would have had robotic.  

I think I used the opiate pain meds for one day after getting home.  After that, ibuprofen was all I needed.  Yeah, it hurt, but it was hardly overwhelming.  The abdominal surgeries I've had in my life hurt a lot more and for a lot longer than the VATS did.  I did have sore abdominal muscles from coughing.  They want you to cough (and you won't be able to help it) right after.  It clears your lungs.  They will also give you breathing exercises--doing those will hasten recovery.  Another tip is to get a foam wedge pillow--you will sleep more comfortably at first having your upper body slightly elevated.  

[LexieCat]

Oh, and this link might be of interest: https://www.swedish.org/services/robotic-surgery-program/procedures/lobectomy#procedure

 

[pip1948]

Thank you ladies for all the information.  I have had a little more time to learn and research things. I am having the robotic surgery.  My surgeon is saying that it will be a minimum of 3 days in hospital, and she will not let me go home until the tube can be removed. She cautioned that sometimes things happen and they have to abandon the robot and open you up, and that would be a lot more of everything. So I do think that she is a worst case scenario kind of person.  But I am optimistic about he whole thing. 

 

 

[BridgetO]

I think you have lots to be optimisiic about!  When I had VATS, I was also cautioned that they might have to go to open surgery.This is worst case scenario and I don't think I've heard of anybody who started out as VATS or robotic and ended up with open surgery. Here's a suggestion. After surgery you'll be more comfortable and breathe easier sleeping with your upper body (not just head) elevated at a 45 degree angle. A foam wedge pillow (12 inch height) worked well for me for this. At first I tried to use a reading pillow and other pillows and ended up with a stiff neck. The wedge worked great! Oh, BTW, I think I forgot to say I was 71 at the time of my surgery.

When is your surgey scheduled?

[pip1948]

I am scheduled for Oct.26. I bought a great pillow elevation system for my bed.  The back piece slides up and down for more or less elevation. I have been using it just to try it out, and it works great. I wasn't cheap, but it is high quality and is just what the doctor ordered.  

How long were you in the hospital?  And how much help did you need when you came home?

[Steff]

That may be the fanciest pillow system I have seen!  

Luckily, my parents had already had an adjustable bed at the time of my mom's lobectomy.  It's been nearly 3 years since surgery and my mom still sleeps at a slight angle.

A bit of info about my mom - she did not have VATS, it wasn't available, so she had the full incision (much more invasive than what you are scheduled for).  She was in the hospital for 6-7 days.  She had to stay so long because the surgeon took the drain tube out too early and had to reinsert it.  It wasn't an option for her to go home with the drain tube like others have done, I'm not sure why.  After the first 48 hours, she was up and walking and doing pretty well.  Her and I did laps around the hospital halls hourly.  She went downhill when the first tube was taken out, but recovered pretty quickly.  Once she got home, she resumed most of her normal activities except for vacuuming, mowing the lawn, lifting stuff.  Obviously there was pain, but it was easily managed with OTC pain relievers.  We were really worried about the surgery beforehand, but it wasn't as big of a deal as we anticipated.

I am happy you have your surgery scheduled, things tend to calm down a bit after that!

Take Care,

Steff

[LexieCat]

I would have needed no help at all, but I had a small complication that put me BACK in the hospital for 3-4 days.  By the time I got out the second time, I COULD have managed, but when my cousin offered to come out and give me a hand for a few days, that sounded pretty good.  The second hospital stay was more wearing than the surgery.

I was driving, though, a few days after getting out of the hospital and I really didn't need the help all that much.  As I said, I could have managed.  If you need help at all, it won't be for more than a couple of days, most likely.

[BridgetO]

Wow, that is a fancy pillow system! Looks like it should work great. I was only in the hospital one night and was released with a drain tube in place. I'm glad I didn't have to stay in the hopsital until the tube came out, because I needed it for about 10 days. I needed some help when I came home. I needed help to change the dressings, mainly the one for the drain tube exit, which was toward my back. Other help, like with fixing meals was nice, but probably not essential. I had to watch how I moved because certain kinds of reaching and bending caused stabbing pain . I couldn't drive while the drain was in and during that same time I was taking some opiod pain meds, which also precluded driving, so I needed to be driven to appointments and such. Once the tube was out, I had little pain, stopped the pain meds and just took tylenol and ibuprofen and could drive. I was restricted in how much I could lift- can' t remember if it was 5 pounds or 10, so grocery shopping, laundry and some other household chores I needed help with.  

[Tom Galli]

Pip,

Amazing pillow. Please send the web link so we can share it with others. 

You are deep in the uncertain zone. Unfortunately, it is a common zone for us and if the nodules or nodes are determined to be cancer by pathology examination (the only way of diagnosing our disease), you will have many more encounters in the zone. 

There are no simple solutions to lung cancer. There is upside and downside to each decision, procedure or test. This I know: surgery is the best curative treatment we have. Robotic, VAT, or conventional, the end game is the tumor is out and the possibility of casting out malignant cells is vastly reduced. No other treatment method has the curative potential that surgery offers. 

I am a real thoracic surgery expert. In total I had eight thoracic surgery procedures requiring general anesthesia. I had significant pain and impairment. I still have residual pain but I am alive to feel it. 

My surgery history is far from typical. Lexie and Bridget’s experience is far more common. 

If you are choosing treatment, you are choosing life. Give yourself the best shot at living. 

Stay the course. 

Tom

[pip1948]

https://www.avanacomfort.com/kind-support-system.html  This is the website for the manufacturers, I think?  But Amazon and even Walmart has them.  I really do like it. As I said, it is kind of expensive, but I think really worth it. 

Oh my goodness!! You are determined!  I am afraid that I have a limit as to how far I will go.  My doctors truly believe that this will be non small cell and I will be A1, of course they don't know that, but that is what they are saying. So, I am having the surgery.  What they find will determine how much more that I will do. The truth is they don't even know for sure that it is cancer!! I mean it probably is, but fungal infections can present like this has too. So, since this is the only way to biopsy without just waiting and letting it spread, I feel like I have no choice but to have the surgery. 

My concern is, that in my other lung there are also nodules, but they were so small that no determination about what they were,  could be made. So they could just be benign nodules or cancer that just hasn't grown much yet. But, I can't wait to find out. So, I don't no? So, I will have this surgery and see where I am. 

[Shelkay1]

Best wishes on your surgery! It's been 4 weeks today since my lobectomy (lower left). I still have a lot more pain than I expected at this time, surgeon says it's the nerves that were severed causing it & it just takes time. 

That is indeed one sweet wedge/pillow! Thankfully I did buy just a normal wedge (Tom's suggestion) & it has been great. I tried sleeping 1 night without it...  terrible idea. I slept very little & the pain was much worse than normal the next day.

[pip1948]

Which type of surgery did you have? VATS, Robotic, or Thoracotomy? 

[pip1948]

On 10/10/2018 at 4:31 PM, BridgetO said:

Wow, that is a fancy pillow system! Looks like it should work great. I was only in the hospital one night and was released with a drain tube in place. I'm glad I didn't have to stay in the hopsital until the tube came out, because I needed it for about 10 days. I needed some help when I came home. I needed help to change the dressings, mainly the one for the drain tube exit, which was toward my back. Other help, like with fixing meals was nice, but probably not essential. I had to watch how I moved because certain kinds of reaching and bending caused stabbing pain . I couldn't drive while the drain was in and during that same time I was taking some opiod pain meds, which also precluded driving, so I needed to be driven to appointments and such. Once the tube was out, I had little pain, stopped the pain meds and just took tylenol and ibuprofen and could drive. I was restricted in how much I could lift- can' t remember if it was 5 pounds or 10, so grocery shopping, laundry and some other household chores I needed help with.  

My doctor indicated that I wouldn't leave the hospital until the tube was removed. Driving so early is surprising me?  In some of the things that I have read, they do not recommend driving for quite some time? 

[LexieCat]

Your doc will tell you when you can drive, but generally as soon as the tube is removed, you can.  If it causes too much pain or you are still taking opioid pain meds then you shouldn't drive, but otherwise it shouldn't be a problem.

[PaulaC]

I just got home Wednesday and feel like I’m doing pretty good. I feel really lucky to not be in a lot of pain. 

I had Thoractomy, my surgery lasted about 2 hours and a lot easier than everyone expected. The drain tube came out the day before I released to go home. I also had a  epidural that they removed at the same time. 

I think yesterday was the hardest because of constipation. 

Good luck with your surgery! I’m praying for you. 

Paula

6 hours ago, pip1948 said:

Which type of surgery did you have? VATS, Robotic, or Thoracotomy? 

 

[BridgetO]

Hi Paula, I thought you were   scheduled for VATS. Was I wrong or were you switched from VATs to thoracotomy?  

[AnneS]

Hi Pip 1948, I had robotic surgery last Monday, was home on Thursday and feel so good I have to be told to slow down.  While in the hospital,  I had Codeine/Tylenol for a couple of days and  Toradol (a  non-opioid NSAID liquid injected through the IV) for another day and a half.    I have some very interesting bruises on my right side, one small suture and minimal pain which  Tylenol takes care of  - I'm a pain wimp, so am not trying to tough this out, it's genuinely all I need. 

A large (5.5cm) mass was found on my lower right lobe, it lit up on the PET scan but nothing else did, had biopsies on some of the lymph nodes that were reachable (all clear).  My surgeon explained that he couldn't reach the mass to biopsy it without basically doing the lobectomy, and even if it wasn't cancerous, it shouldn't be there, so we agreed it had to come out.  The  biopsy done in the OR showed it was cancerous but the nearest lymph node was clear.   I am still awaiting results from some additional lymph nodes near the mass that he biopsied but my surgeon is optimistic that they too will be clear.  It does seem your surgeon is a worst case type.  Mine explained that there was a small chance that he would have to convert to doing a regular thorectomy,  about 1 in 100 lobectomies he does (and he does a lot).  And has constantly reassured me that while this is major surgery, the outcome is almost always very, very positive.

Medicare is providing in home physical therapy for a couple of weeks and my husband will have to be the cook for a couple more. I too am 70 years old, averagely fit (hate most exercise, grudgingly use a treadmill for short, gentle walks and do some tai chi).  Like PaulaC, I think the constipation on the third day was about the worst pain I experienced.  The only aggravating thing about the entire experience is that I've lost my voice temporarily - it was explained to me that because the surgery is on the lungs, the tracheal tube they use is larger than for other anesthesia, and can bruise the vocal cords. It will eventually clear up.

wishing you all the very best