Feeling discouraged

[Sharon L.]

Tomorrow will be 9 weeks since my Vats surgery and the right side is still sore, my skin hurts and it’s really uncomfortable to have clothes touch my right side just underneath my diaphragm.   I’m guessing this is normal I just want to get back to my old self. 

[BridgetO]

Hi Sharon,

I think people have a wide range of experiences of pain or altered sensation after VATS surgery. I didn't have any  problems after a few weeks had passed.But I've seen others post on these forums experiences similar to yours. Maybe some of them will respond with suggestions about what can help. Have you talked to your surgeeon about this?

Hang in there,

Bridget O

[Sharon L.]

No I haven’t spoken to my surgeon I wasn’t really sure who I should call the surgeon or my oncologist.  I will call the surgeon’s office tomorrow to see what they say since I don’t see the oncologist until 5/22. Thanks for your reply. 

[Susan Cornett]

Sharon,

Sorry to hear you haven't bounced back yet.  I had the traditional surgery, so my recovery was longer.  Hopefully your surgeon will have some good information for you.

[Laurel]

It's been 8 weeks since my VATS surgery. I have finally moved off my gabapentin pain pills during the day and only take them at bedtime. I didn't experience the skin sensitivity you are feeling. I would have pain along my back and right side. I used over the counter Salon Pas (lidocaine) patches on those areas...never on any of my stitches. Suggestions from this site and my primary physician were most helpful with pain control. Talk with surgeon, oncologist, primary physician...whoever will help.

[Tom Galli]

Sharon,

Welcome here!

I had a conventional lung resection (pneumonectomy) and two following surgeries each about one month apart.  These surgeries used the same pathway into my chest as created during my pneumonectomy.  As you can imagine, I have acquired a great deal of personal expertise on post-surgical pain.  Here is a summary of some of the things I do to address my now chronic pain condition in my chest incision areas.

While not certain, I do not think your VATS surgery will morph into the pain problems I have.  But, if pain persists, I suggest you consult with your surgeon.  He or she knows more about your surgical condition than any other doctor you might arrange to see.

I do hope you get back to normal and old self quickly.

Stay the course.

Tom

 

[Steff]

Sharon,

Feeling discouraged seems to be common theme, at times, when dealing with lung cancer.  It seems as though you take 1 step forward, just start to get things figured out, and then wham, something happens to knock you 2 steps back.  That seems to be my mom's case anyway.  She had the conventional lobectomy in 2016.  Her incision hurt her for about 3 months.  Her incision is under her arm pit and wearing a bra drove her nuts.  She didn't really attempt to try anything to lessen the pain, so I can't give you any advice there, but it looks as tho you have already gotten some good advice.

I mainly wanted to say that it's okay to feel discouraged, but remember, you had a portion of an organ removed - it's going to take some time to recover!!  My mom's cancer journey has been filled with discouraging times. Dealing with a chronic health problem is like that.  But with all of the treatment options and things to help with side effects, there is light at the end of the tunnel.  And even though it seems like my mom takes 1 step forward to only be knocked back 2 steps, the important thing is that she's still here and enjoying life no matter where her steps take her.

I hope encouragement comes your way soon.

Take Care, 

Steff

[Roz]

Sharon,

I think everyone's response to surgery, pain and recovery is variable. It definitely makes sense to ask your surgeon for some advice. I had VATS surgery (left lower) and also a thoracotomy (right upper). My discomfort from the VATS decreased each week and then 6 weeks later I had the thoracotomy. Dealing with pain and discomfort is still ongoing from the thoracotomy. But, It's great that you were feeling well enough to stop taking the Gabapentin...Try to give yourself plenty of rest time if you are still experiencing pain. It's so hard to be patient with the recovery process and it's okay to feel frustrated. Try to focus on how much better you feel this week compared to last week. Things will improve and you will get closer and closer to where you hope to be in this process!!

[Ann Cronin]

Hi, Sharon,

It's been almost 6 weeks since my traditional open lobectomy. I am also discouraged but I'm told time and again "It's a big surgery". I've also learned from folks, as others have stated here, everyone and every surgery is different so the recovery is different for each of us. I've learned that some will recover within a month or two and others could take a year or more.... so like you, I'm pretty discouraged. 

I was put on Gabapentin and it works "ok" though I found that it made me very emotional and my legs felt like jelly so I went off. Well, I'm back on because of the discomfort, using that and Advil regularly.

One thing that is a comfort.... at first I thought that there was something wrong, perhaps I wasn't healing properly. Now I am pretty comfortable in knowing that what is needed is time... to heal.

Tom - Hopefully you see this! I get a general sense that being that I had the traditional, open lobectomy, I could be dealing with the burning/pulling/pain for a solid12-18 months.... would you say that is accurate? (If I'm lucky, I should say, as your experience has been quite the rough road in regards to pain, it seems). It's pretty constant, tolerable sometimes but at other times it's truly painful! A friend of mine who had the surgery told me to expect the 12-18 months.... Also, I understand that having shortness of breath is normal, could you comment on how long that could go on? I'm having shortness of breath even just having a lengthy conversation - can you say if that is normal?? 

Thanks,

Ann

[Roz]

Ann,

What was your physical status prior to your lobectomy? Which lobe was removed? Did  you have a pulmonary eval prior to the surgery?

 

[Ann Cronin]

Quote

 

Hi, Roz,

I had upper right lobe removed and my pre-surgery pulmonary eval was excellent. Really had no symptoms of cancer, a bout with pneumonia showed disease.

[Sharon L.]

Thanks everyone for your replies. I decided to wait to contact my surgeon since they told me it could take 8-12 wks for recovery and I really should consider myself lucky as there are many people that have it a lot worse than me. I have an appointment with my oncologist on 5/22 so I’m going to hang on until then.  I have been making myself walk a minimum of 5 miles a day again so if I can do that I think I will be ok just gonna have to not wear any clothes that bother my skin until it’s all healed. 

[Tom Galli]

Ann,

Surgery, lung cancer and normal are words I wouldn't normally associate.  After my first surgery, I was discharged in 5 days and I didn't need any pain meds.  I suffered a pulmonary embolism after my second surgery and spent about 3 months in the hospital.  When discharged, I had a throbbing-like pain in the incision scars.  I was discharged about 10 days after my third surgery in about 10 days.  I was on intense pain medication for about a month after discharge and have a throbbing-like pain that is constant at 4 unless I have a cramp or experience high stress.  Then it soars.  But, I have a chronic pain condition and it is expected given all the surgeries I had.  

You should not have a chronic pain condition.  Since I didn't have a normal recovery, I don't really have personal experience to predict how long your pain may last and how it may present.  I do know from experience not to fly in airliners for several months.  I learned that the hard way when I flew about 5 months after my last surgery and the cabin pressure altitude of 6,000 feet made my incision pain roar.  I'm still bothered by flights and try and avoid long duration flights or if I can't avoid them, use my pain medication ahead of the experience.

I also find immersing myself in the pool up to my neck significantly reduces the amount of discomfort in my incision scars.  Buoyancy is offsetting the gravitational tug on my incision scars and that knocks the pain down a couple of notches.  Relief is limited to the amount of time I spend in the pool.

My shortness of breath is interesting.  My pulmonologist says I have about 38% of normal lung capacity, yet my oxygen saturation rate is above 97, most of the time.  I do experience shortness of breath after surgery and my surgeon explained why.  He said the body produces fluid to fill up the empty cavities and that fluid squeezes and compresses my lung, especially when I squat or bend over.  It took a while to adjust my activity level to reduce this symptom.  Generally, I kneel down rather than squat or go down on one knee rather than bending over. 

I had to establish a new normal for my life.  There are things I can't do but a multitude of things I can do and I live in the can do zone.

Stay the course.

Tom

[Roz]

Ann,

Upper right lobe is a big one and will definitely take time to heal. But knowing that your physical status was okay prior to the surgery, you may want to call your doc to check in if the shortness of breath occurs from having a conversation. I found that if I "forget to breath," like if I run up the stairs too quickly, I may feel that way. If I'm excited while having a conversation, I may take more frequent breaths..but it's been 6 months since my surgery...since yours was so recent, sounds like time to heal is most important. But anything you question, call the doc. The PA should be able to answer any questions too...By the way, my surgeon told me it could take up to year for the discomfort to be better. But in the same breath she also said, or it may not be better in a year...meaning, I may have the discomfort forever. No way to know...and it doesn't seem to be related to how physically fit you were prior to surgery. Happy to talk any time!!!

 

Rosemary (people call me Ro, but the site wouldn't accept a two-letter nickname, so I picked Roz)...

[Ann Cronin]

Thanks so much Ro, Tom, all!  

Sharon, completely forgot to mention... the clothing on skin thing.... YES!!! I can validate how you're feeling! It's not 24/7 for me but often times I am pulling my shirt away from my torso for relief! Yours is the first post I've read in relation to this and I'm grateful I'm not the only one in the world that feels this way. If you're walking 5 miles........ I feel like you're way ahead of the game! Best of the best wishes to you for full recovery!

Ann

[Roz]

To Ann and Sharon,

I'm still having clothing issues 6 months post. I found that a camisole works or a very loose fitting sports bra. 

 

Ro

[Donna G]

20 years later , under shirts and tee shirts work for me.  I have never tolerated anything sqeezing me since my Lobectomy.

I have a couple of ribs that never healed they would look " broken " on x ray.

Donna G

[Sharon L.]

3 hours ago, Ann Cronin said:

Thanks so much Ro, Tom, all!  

Sharon, completely forgot to mention... the clothing on skin thing.... YES!!! I can validate how you're feeling! It's not 24/7 for me but often times I am pulling my shirt away from my torso for relief! Yours is the first post I've read in relation to this and I'm grateful I'm not the only one in the world that feels this way. If you're walking 5 miles........ I feel like you're way ahead of the game! Best of the best wishes to you for full recovery!

Ann

Thanks Ann I thought I was the only one I can definitely relate to pulling my clothes away from my skin. Good luck in your recovery too!

[Sharon L.]

1 hour ago, Roz said:

To Ann and Sharon,

I'm still having clothing issues 6 months post. I found that a camisole works or a very loose fitting sports bra. 

 

Ro

Thanks for the reply Ro & Donna. I found the only thing I can tolerate are rayon/polyester loose fitting tops which I wear under my outer shirt. Maybe some day I will be able to wear my camisoles or a bra again. I guess I will be looking for more tops sounds like I maybe dressing like this for a long time. 

[Sharon L.]

On 4/17/2018 at 12:02 PM, Steff said:

Sharon,

Feeling discouraged seems to be common theme, at times, when dealing with lung cancer.  It seems as though you take 1 step forward, just start to get things figured out, and then wham, something happens to knock you 2 steps back.  That seems to be my mom's case anyway.  She had the conventional lobectomy in 2016.  Her incision hurt her for about 3 months.  Her incision is under her arm pit and wearing a bra drove her nuts.  She didn't really attempt to try anything to lessen the pain, so I can't give you any advice there, but it looks as tho you have already gotten some good advice.

I mainly wanted to say that it's okay to feel discouraged, but remember, you had a portion of an organ removed - it's going to take some time to recover!!  My mom's cancer journey has been filled with discouraging times. Dealing with a chronic health problem is like that.  But with all of the treatment options and things to help with side effects, there is light at the end of the tunnel.  And even though it seems like my mom takes 1 step forward to only be knocked back 2 steps, the important thing is that she's still here and enjoying life no matter where her steps take her.

I hope encouragement comes your way soon.

Take Care, 

Steff

Steff thank you I hope you Mom is doing good.   

[Sharon L.]

On 4/17/2018 at 11:27 AM, Tom Galli said:

Sharon,

Welcome here!

I had a conventional lung resection (pneumonectomy) and two following surgeries each about one month apart.  These surgeries used the same pathway into my chest as created during my pneumonectomy.  As you can imagine, I have acquired a great deal of personal expertise on post-surgical pain.  Here is a summary of some of the things I do to address my now chronic pain condition in my chest incision areas.

While not certain, I do not think your VATS surgery will morph into the pain problems I have.  But, if pain persists, I suggest you consult with your surgeon.  He or she knows more about your surgical condition than any other doctor you might arrange to see.

I do hope you get back to normal and old self quickly.

Stay the course.

Tom

 

Tom I have not had to deal with anything like you have I guess I was just having a “moment” when I was feeling discouraged but I know I should consider myself lucky for my cancer surgery outcome I keep telling myself it hasn’t really been that long since my surgery and can’t wait to be back to “normal”. Best wishes to you. 

[Sharon L.]

45 minutes ago, Sharon L. said:

Thanks for the reply Ro & Donna. I found the only thing I can tolerate are rayon/polyester loose fitting tops which I wear under my outer shirt. Maybe some day I will be able to wear my camisoles or a bra again. I guess I will be looking for more tops sounds like I maybe dressing like this for a long time. 

Ro what brand of sports bra did you find that is loose fitting?