Having lobectomy tuesday aug 6---so confused. nobody answering my ???

Posted by julie67 @julie67, Aug 4 11:48am

So I was on here with my PET scan a few months ago. The doctor has said my cancer is 'small' and have a good chance of 'cure' if it's not in my lymph nodes. They biopsied my lymph nodes and they came back negative. So why would they take 'good' lymph nodes and he also said he is doing a lobectomy instead of a resection because it has 'less chance of lung collapse'. IS this normal? I had a collapsed lung on the lung biopsy July 2 and spent 2 days in the hospital then so why is it a big deal? Or was I lucky? I also thought they collapsed your lung to begin with for this? YEs, i am all over the place. I am alone with not even a ride home when time comes. Nurse gave me social worker, Cancer PAthways (anyone heard of them?) and other resources. NOBODY can help. So I told Cancer Pathways here in Evansville, IN I have no help, animals to attend to, nobody to go to store and no money when I get home. She called back and left a message that she called my nurse navigator and was told I would only be in hospital 2 days and would be able to do 'my normal things' when I got home! HA! So I then fired off an email to the nurse telling her this when it clearly states in my letter I am not to drive until seen post-op//whenever that is??? Not to lift etc but to walk every day when i get home. Of course nurse didn't answer me now since if she DID say this, she knows its WRONG and she just robbed me of any help. Mad, scared, freaked out so bad a week ago i am covered in cuts and chunks out of skin from being so clumsy. Anyway, just still lost. My chart says resection AND lobectomy, it also says in ONE letter THORECTOMY? Guess it depends on what he finds?? But doesn't he know what to do from all my scans already? And if they aren't sure if it's in my lymph nodes after a PET AND biopsy, then how do we know if it ever comes back (supposing I AM cured after removal of lobe and whatever nodes he takes come beck negative)? rambling, confused, alone and freaking out again. 8am tuesday. having nightmares now. please tell me yall think please? I have to do this surgery I think. I've had my primary, future oncologist (oh, he said I need chemo no matter what!--another opionion oncologist said only if lymph nodes taken are cancerous!) and someone else say to get the cancer out now!

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@lls8000

@julie67 , Having surgery under any circumstances is extremely stressful. What you are feeling isn't unusual, but it is heightened due to your life situation. Pam's advice is good. A case manager may be able to help. Depending on the hospital policy, you may not be assigned a case manage until you are admitted. That team may not be under the same umbrella as the surgeon's office.
Wishing you the best tomorrow, I'll be thinking of you.

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Hello Lisa. A month or so ago, I was in the dark about my diagnosis and you pointed me to the right direction to find doctors as my own advocate. Next week, I will have a lobectomy via RATS to remove an adenocarcinoma tumor that may be a stage 1 and they will test lymph nodes. Once needle biopsy diagnosis occurred, surgery was scheduled for 9 days later.

I found a "family" of specialists under the same roof from pulmonology to oncology to thoracic surgeon who all talk to each other and they are very compassionate and I trust them.

I have questions, please:
*Would you happen to know if my health will be affected when they take out lymph nodes? to test?

*Will I be able to walk my dogs ever again for 1 to 2 miles like I do now every day? Will it be weeks or months before I will be able to take them on a walk?

*My oncologist did a biomarker she said during my first visit before surgery was scheduled. I didn't even think to ask her what that is! What will it tell me? (I see her a month after surgery.)

The surgeon answered most of my questions but I just thought of these later. I am not going to search the Internet too much prior to surgery as I have a lot of loose ends to get done before surgery and I don't want to go down rabbit holes on the Internet. Trying walk, breathe, and not get triggered by the petty stuff.

Thank you and anyone else with advice or information, all welcomed.
Burdyblue

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@burdyblue

Hello Lisa. A month or so ago, I was in the dark about my diagnosis and you pointed me to the right direction to find doctors as my own advocate. Next week, I will have a lobectomy via RATS to remove an adenocarcinoma tumor that may be a stage 1 and they will test lymph nodes. Once needle biopsy diagnosis occurred, surgery was scheduled for 9 days later.

I found a "family" of specialists under the same roof from pulmonology to oncology to thoracic surgeon who all talk to each other and they are very compassionate and I trust them.

I have questions, please:
*Would you happen to know if my health will be affected when they take out lymph nodes? to test?

*Will I be able to walk my dogs ever again for 1 to 2 miles like I do now every day? Will it be weeks or months before I will be able to take them on a walk?

*My oncologist did a biomarker she said during my first visit before surgery was scheduled. I didn't even think to ask her what that is! What will it tell me? (I see her a month after surgery.)

The surgeon answered most of my questions but I just thought of these later. I am not going to search the Internet too much prior to surgery as I have a lot of loose ends to get done before surgery and I don't want to go down rabbit holes on the Internet. Trying walk, breathe, and not get triggered by the petty stuff.

Thank you and anyone else with advice or information, all welcomed.
Burdyblue

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Hi! I am able to walk my dog for miles! I had an upper left lobectomy in October 2022. My surgeon allowed me to start walking her about 10 days post-op but really short walks. She’s only 15 pounds and very calm (most of the time!) on leash.

I would ask your surgeon about your timeframe to walk your dogs. Everyone’s recovery is different and I wouldn’t want you hurting yourself.

Biomarker results take time. I didn’t learn the results until my post-op visit and then met with an oncologist who further explained how best to move forward.

Hope this helps!
Warmly, Cheryl

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@denzie

How are you feeling today?

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well, i just got home 2 days ago. Was in hospital for a week on a chest tube screaming in agony. Surgeon pulled out tube Tuesday morning, said the cancer was in my lymph nodes so i did this for nothing!! The thought was it was just in the lung and i would be cured but it's in the nodes also so i have disabled myself for no reason and just am gonna die now. crushed, alone and they won't even send a home health aide. oh it doesn't matter anymore cry

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@flusshund

@julie67, even with the continuing wonderful advances in lung cancer detection and treatment, it's not an exact science. Those CAT scan images are pretty fuzzy, and PET scans are designed to show sugar absorption. None of those images are crystal clear, so your doctors won't really know what you've got until they see it.

My tumor was a little bigger than they thought and closer to the bottom of my right upper lung lobe. I had robotic surgery and went home two days later. No problems there. Unfortunately, the cut line showed cancer cells, plus a nearby lymph node had also been infected, so I had chemo and radiation simultaneously. Still didn't miss a single day of my desk day job until I got laid off the same day as my third round of chemo. But that's another story.

I was a little stiff after the surgery, but I didn't much notice even that after a month. I know it's a whirlwind, but quickly removing the cancer is your best chance for survival. Best of luck!

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wow, I must have the worst luck. Spent 8 days in the hospital on a chest tube screaming in pain but t elling myself it would all be worth it since i would be cured. Nope. He came in Tuesday morning, took tube out, told me the cancer was in the lymph nodes, they called me a a cab home and now 2 days later i am sitting here in extreme pain, can't do anything. So i've done all this for nothing. Now i am being sent to oncology since i will need chemo. He says whtever happened to me only happens to 1 or 2 ppl a year...figures. My lung had a micro leak i think. Nothing helped the pain. Changed the shape of my face and my teeth turned sideways from grinding them for a week. this sucks. i started smoking as soon as i walked in the door from the hospital. don't see the point anymore. sitting here and my incision for the chest tube was bleeding, spewing liquids for hours after I came home. Was too sick to know what i was doing to call anyone. Finally called them yesterday, sent them pics and was told, let's wait and see what happens..ok.. let's do that!!

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It;s true.. things do return to nature left unattended. Since I was told I'm be home in 2 days and able to do stuff and that was a lie, i am living in a house covered in animal feces i cannot clean and swear to god, my inflatable hottub deflated and is full of tadpoles. Am now waiting for all the frogs to 'hatch' on my deck. sheesh

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@pb50

Wow! I am pea green with envy. I didn't have robotic surgery and also had clean margins and nodes. But I had copius drainage after they removed the chest tube and even after they sent me home. So i really needed some help for a few days to change my dressing because i couldn't quite reach it.

Everyone has a different experience -

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well, yup, I spent a week in the hospital on the tube, it was taken out Tuesday morning--2 days ago- with no drainage. I wasn't even to the hospital's front doors, i coughed and stuff sstarted pouring down my shirt and pants. Was still sent home. Sat here dazed for hours with the couch and pants soaked. 2 days home, still in extrmem pain. nerves are cut in my stomach so it hurts inside but can't feel the skin outside! begged for home aide..got none. Sent them pics yesterday and was told..let's wait and see what happens.......sure, got it!

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@abob

I know it’s difficult not to worry. It’s good that nodules not cancerous. Full lobe removal is prudent. Usually 2-3 days in hospital post surgery. Pls talk to hospital social worker who can arrange all types of assistance, including transportation and home help. (I do not think that hospital will release you without appropriate post op care.)

My husband’s thoracic surgeon did full left lower Lobectomy for his tumor. He stayed in hospital only 2 nights. He saw oncologist after surgery, he did 4 rounds of chemo, and now doing immunotherapy.

I know it’s happening so fast, but be glad that your surgery is scheduled right away. In hospital walk asap, and do spirometer for breathing. It’s also great that oncology is advanced now to help prevent and monitor for any future pesky cancer.

BEST WISHES. LET US INOW HOW YOU’RE DOING. IT HELPS.

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you can see from my comments it did not go well. yes, hospital sent me home in a cab not knowing what i was doing with no help. Called the oncologly social worker yesterday....not returning my calls. i truly gave up. chain smoking ..this broke me

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@cherylannw

Hi! I am able to walk my dog for miles! I had an upper left lobectomy in October 2022. My surgeon allowed me to start walking her about 10 days post-op but really short walks. She’s only 15 pounds and very calm (most of the time!) on leash.

I would ask your surgeon about your timeframe to walk your dogs. Everyone’s recovery is different and I wouldn’t want you hurting yourself.

Biomarker results take time. I didn’t learn the results until my post-op visit and then met with an oncologist who further explained how best to move forward.

Hope this helps!
Warmly, Cheryl

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I hope to be doing the same with my dogs, too. They are Scotties and very good and gentle walkers. Yes, I will ask the surgeon about my timeline.

Didn't realize biomarkers take a while and will go over that with my oncologist a month after surgery

Many thanks for the encouragement.

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@julie67

you can see from my comments it did not go well. yes, hospital sent me home in a cab not knowing what i was doing with no help. Called the oncologly social worker yesterday....not returning my calls. i truly gave up. chain smoking ..this broke me

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Julie! I am so sorry you have been treated this way! And, it is notmal to be depressed and scared and mad and wanting to give up. BUT!… You need to snap out of it! I can’t imagine what you are going through, being alone thru this, but you need to ger your determination back. You NEED to fight for YOU! Sure, it’s easier to just give up, but YOU are worth fighting for. Where are you located? What medical do you have? Usually there are churches that have volunteers that will come and assist. I’m praying for God to help you find your strength and get you back on your feet! Best wishes to you!❤️. Cindy

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@julie67

well, i just got home 2 days ago. Was in hospital for a week on a chest tube screaming in agony. Surgeon pulled out tube Tuesday morning, said the cancer was in my lymph nodes so i did this for nothing!! The thought was it was just in the lung and i would be cured but it's in the nodes also so i have disabled myself for no reason and just am gonna die now. crushed, alone and they won't even send a home health aide. oh it doesn't matter anymore cry

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Very sorry for your pain. My mom had hers in for 3 weeks, pure hell. I'm 13 years 10 months with stage 4 lung cancer. This is not the automatic death sentence it once was. New treatments are helping people live longer. Please let us know what systemic treatment they are planning so we can share what helped with side effects.

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