Lobectomy?? to have not not

[cindykdee]

Has anyone had a lobectomy??? what can I expect in terms of quality of life?  Also, I have not been staged yet...is this necessary to have?

 

[Donna G]

I had my right upper lobe removed in1998.  I just retired from nursing in 2014.  

In other words I was able to run up and down halls for 16 plus years ;8 hours a

day and go home and take care of my dogs and husband .

It may be different for each of us but as for me I feel it was worth it. 

I hope your tests go well and pray surgery is an option for you also.

 

Keep us posted.  Donna G

[andylewis]

My father had an experience with this. This treatment will not effect your quality of life. Keeping doing the breathing exercises you learned in the hospital. Slowly increase your physical activity as tolerated. It may take several weeks to return to normal. You may need to avoid lifting heavy items for several months & you will be fine. God Bless!

[Tom Galli]

Cindy,

 

I had a whole lung removed. Then extensive chemo after the tumors appeared in my remaining lung. I was able to return to a mostly normal life style as concerns breathing and physical activities but the side effects of chemotherapy slowed me down somewhat.

 

You need to be staged because staging tells doctors if the cancer is only present in the lung.  If it has moved to other areas of your body, then they likely will not perform a lobectomy.

 

Stay the course.

 

Tom 

[JLA]

I had my right upper lobe removed in 2006, I still feel the effects at times climbing stairs at sporting events etc. but part of that is because I'm out of shape.

 

I remember asking my doctor about that before the surgery and he put this way, "with the tumor in your lung you've already lost some, once the lobe is removed there will not be a big noticeable change but you can certainly exercise and increase what you have left to be better than before".  

 

Good luck to you. 

[bjacksontex]

Cindy,

I just had my right lower lobe removed on Oct. 27th. I wanted that instead of a wedge resection to get it all. The Pathologist's report came back 2 weeks later. I was staged 1aN0M0. I'm just guessing but stage one a with zero additional nodules in the lobe and zero mets from the 33 lymph nodes my doctor removed. My procedure was done robotically. Three weeks later and I'm doing everything myself including grocery shopping. And quality of life? Thanks to early detection, I heard the words "you are cured!" No chemo or radiation. Just monitoring. You won't regret the lobectomy.

Barb

[chloesmom]

I had an upper left lobectomy in 2003.  I am still working, go to fitness classes at my gym, run (ok kind of slow run!), and walk 18 holes at the golf course.  I do yard work, clean house, etc.  in other words, I do everything I did before my surgery-you can have a good life after a lobectomy.  Do the breathing exercises afterwards and start with walking. 

[washashore]

I had an upper right lobectomy in October of 2014. They nicked my Thoracic duct which resulted in an incessant cough. In December they found that I had a pleural effusion. The doctor called my house on a Sunday and wanted me to check in that day. I couldn't because I was at the Patriots game. I checked in the next day and had surgery the day after. I had Thorocotomy and pleurdesis. i ended up in intensive care and was in the hospital for 7 days. I still have issues with pain. They think that it is nerve pain. They cut my rib, and I have pain there also. I have had 2 pet annd cat scans and so far everything has come back all clear. That is 13 months cancer free. Has anyone else have experience with these procedures and the pain? they have recently prescribed Neurontin and that has worked well.

[Denzie]

When I had back surgery to repair my vertebrae the cut a nerve. The neurontin (gabapentin) helped me tremendously. I started out in 300 mg 3x day, after a couple if years I tapered off them altogether and rarely have a problem now.

[MommaTothX7]

I had an upper right lobectomy in October of 2014. They nicked my Thoracic duct which resulted in an incessant cough. In December they found that I had a pleural effusion. The doctor called my house on a Sunday and wanted me to check in that day. I couldn't because I was at the Patriots game. I checked in the next day and had surgery the day after. I had Thorocotomy and pleurdesis. i ended up in intensive care and was in the hospital for 7 days. I still have issues with pain. They think that it is nerve pain. They cut my rib, and I have pain there also. I have had 2 pet annd cat scans and so far everything has come back all clear. That is 13 months cancer free. Has anyone else have experience with these procedures and the pain? they have recently prescribed Neurontin and that has worked well.

Washashore - I have tremendous pain on my left back from "bra strap" to shoulder.  They have finally said I have Post Thoracic Pain Syndrome.  There is so much scar tissue and nerve damage it will never go away.  I use pain patches and oxycodone.  Thrilled to hear you are cancer free!!

[washashore]

My surgeon said my pain was from "bad posture". He finally sent me to a pain management Dr. She laughed when I told her about the posture diagnosis. I have had 3 rounds of lidocane injections along with the Neurontin. I have had to take oxycodone  3 times in the last 3 months. They all think that it is either scar tissue or nerve damage. My pain numbers are about 4 now. I can live with those numbers.

 

Still here and still surviving.

[kathyrose]

I had a right lobectomy on 6/22/15, very manageable pain for a short time, went back to work on 7/10/15, had 3 rounds of chemo in July and August, then had a left wedge resection on 10/19/15. Again very manageable pain for a short time. Back to work on 11/17/15. So please, get the lobectomy and let the healing start. Good Luck!

kathyrose

[Merilee]

Cindy, first let me say usually you have PetScan,s and other scans before they can talk about what what treatments are the best for you. I had a wedge resection for adenocarcinoma stage 2A. I was not able to have more of the lung removed due to some COPD. I would have had that if the docs felt i could. If your staged and they feel this is best for you. I think the benefits far outweigh the effects. I know people that have had this surgery and may have done breathing issues, but they are happy they were one one of then people that still could have surgery.. I wish you the best..take care. M M

[Merilee]

re: washashlore. I too had wedge resection 6/15 along with having to have repair to three lung collapses...I continue to have back and rib pain....now follow up CT showed enlarged node in chest,.positive for local recurrence..more tests before more chemo and radiation to make sure there isn't more anywhere else. So here we go again.. good luck to you. M M

[CindyA]

Hi CindyKDee, 

Any updates since you last posted?

 

I look forward to getting to know you,

Cindy

[M.J.]

On 11/18/2015 at 12:20 AM, cindykdee said:

Has anyone had a lobectomy??? what can I expect in terms of quality of life?  Also, I have not been staged yet...is this necessary to have?

 

 

[M.J.]

I know this post is old. How did you recover from the surgery? What stage did you have?

[M.J.]

I admire all of you! I had a Lobectomy on Nov.17th 2017. Alot of walking for recovery. I was Stage 1. No chemo or radiation. So fortunate. I should not complain but.....The nerves were cut in certain areas. The nerve pain is bad and numbness too. I guess it is a new Norm of my life. I used to wear jog bar's but now I can't.  I fing hate bras. I was a runner. I will suck it up and work hard  so I can do these things again in my life. I take Capetentin pills for the nerve pain and Lidocaine patches too.  Please let me know any information re: your symptoms and recovery. Going forward,I will have ct scans every 6 months for 3 years then once a year for 2 years. My surgery was done roboticly.

[BridgetO]

Hi M,J,

I had a lower right lobectomy about a year ago by VATS . Stage 1A .  My recovery was fairly fast and uneventful, little pain once the chest tube was out- it was in about 10 days. No nerve pain. I walk a lot and do water exercise. My lung capacity seems fine.  I'm sorry to hear you're having so much pain. Have you been to a palliative  care doc or to a pain clinic? My   had a lot of of pain  for years after a back surgry. She went to a psin clinic and they were able to help her--It took a while, but she's been virtually pain free for probably 10 years, nothing a couple of ibruprofen once in a while can't take care of.

Hang in there- I know how important exercize is in recovery and it must be terrible to have it hurt so much,

Bridget O

[Denzie]

My nerves along the ribs were cut during a vats surgery for my back. It felt like I was wearing a bra several sizes too small, it squeezes and hurt.  I also used gabapentin and lidocaine patches.

 It took a while to find a comfortable bra.   I found one by fruit of the loom that made a huge difference- it comes in sizes up to 44D.   It closes in front with 9 hook and eyes.  Here’s a link, you can probably walk into a Walmart or Meijers or similar store and get it for a little less.  

https://www.herroom.com/fruit-of-the-loom-96014-comfort-cotton-blend-front-close-sports-bra.shtml?utm_source=adv&utm_medium=search&utm_campaign=pla&utm_content=Fotl01-96014&gclid=EAIaIQobChMIgsSgiI6_2AIV24-zCh3guwBxEAQYBSABEgJ_GvD_BwE

please know that one goal of all advocates is for early detection of lung cancer.  Most are not found until stage 3B or 4 at which point there can be no surgical removal.   Finding yours early enough to have it surgically removed is a victory for all of us.  

Eventually you will be able to return to running.  You may not be as fast or go as far but don’t count it out.  We’ve known others here who run and do distance biking, snorkeling and scuba diving.  

It took about a year for me to not need the gabapentin.   I know they say a couple months but we are all different. 

[M.J.]

Hi Bridget, thank you so much. I'm glad your recovery went well. That's terrific that you did not have nerve pain. I never heard of Pallative care. I had a Laminactomy 3 years ago and I didn't have any nerve pain afterwards. I think because the nerves were severed. I have to remind myself that I DON'T HAVE CANCER. I feel guilty for my pain.

[M.J.]

Hi Denzie, wow! Thank you too! I'm loving the responses. Thanks for the link. Also thankyou for reminding me that I am fortunate to hear this cancer so early. I have tiny nodules In my right lobe but I feel confident the won't grow.

[Steff]

Hi M.J.

I'm glad your surgery was a success.  My mom had a right, upper lobectomy in 2015.  She still has nerve pain in her right shoulder and the scar where her incision is bothered her for about a year and bothers her only periodically now.  She searched high and low for bras she could wear and even tried bras for women who are recovering from mastectomies.  She didn't find much of anything that worked.  She resorted to wearing tight cami's under her shirts for about 4 months.  She preferred thick cotton ones.  Although it didn't provide much support, it made her comfortable enough to go in public.  Although I don't think a cami would help you in the running department    

[M.J.]

Hi Steph, Lol re: the cami. I feel very connected with the feed back re: the nerve pain  and suggestions for bras. It's a really weird feeling. It does feel like so much pressure with wearing one. I can only imagine women wearing corsets in the day.  I guess, its like wearing a corset on my boobs.  

What's hard for me also....my husband passed away in Aug.and I had to sell my home. I'm staying with a friend during the week and on weekends I stay with my sister. So many changes with alot of depression at times. It good to have this support site for me.

I'm glad your Mom is feeling better. She must be a wonderful Mom and woman

Thank you,

M.J.

[Denzie]

M.J.,

Another Lungevity alumni shared this on her Facebook page.  I thought if you immediately.  I hope you find it inspirational. 

https://mobile.nytimes.com/2018/01/04/well/live/when-the-lung-cancer-patient-climbs-mountains.html?smid=fb-share&referer=http://m.facebook.com