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!

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@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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@burdyblue, I'm so glad that you found the care that is a good fit for you. Having a compassionate team that you trust can certainly ease a stressful situation. 9 days is quick, resulting in less time to worry! That's great.
I'm glad that some others have piped in to answer some of your surgical questions. Many people recover quite well from a lobectomy. All situations are different but having a trusted care team that can respond to concerns post-surgery is important too.
The biomarker testing may provide additional information on what's driving the cancer at a cellular level. Sometimes a targeted therapy (pills) may be prescribed to help combat the cancer post-surgery. That all depends on the driver of the cancer.
Best of luck to you next week! Hugs.

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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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@julie67, this is a tough time, and you've been through so much in the past few months, it's normal to feel defeated and exhausted. Keep in mind that you've gotten through the first week post-surgery and that's an accomplishment. Please keep trying to reach the social worker. They may be busy, or a message may have been misplaced. Keep at it and try to get some rest so your body can heal.

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How are you doing post Lobectomy?

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@lls8000

@burdyblue, I'm so glad that you found the care that is a good fit for you. Having a compassionate team that you trust can certainly ease a stressful situation. 9 days is quick, resulting in less time to worry! That's great.
I'm glad that some others have piped in to answer some of your surgical questions. Many people recover quite well from a lobectomy. All situations are different but having a trusted care team that can respond to concerns post-surgery is important too.
The biomarker testing may provide additional information on what's driving the cancer at a cellular level. Sometimes a targeted therapy (pills) may be prescribed to help combat the cancer post-surgery. That all depends on the driver of the cancer.
Best of luck to you next week! Hugs.

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Oh, thank you. That's why the oncologist ordered it. I get it.

All post op stuff was done by yesterday and after the nurse told me what I had to do before surgery it got real for me. I had a meltdown en route home, so my husband took me to Starbucks to collect myself. Up and down. I'm a strong person generally, but it's hard turning myself over to the whole process and trusting that it will work out. Thanks for the encouragement. I'll let you all know how I fare when my fingers work on my keyboard again.

Best and hugs to all those who are healing and pushing through.

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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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How are you feeling today? Keep sharing in the community for support and ideas about what you might be able to do to lessen the pain and get around safely at home.

I'm new and have yet to have a lobectomy, so I have no expertise to share. But thinking of you...and hoping you reach out.

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Thank you. I feel like the incisions on my back and side are going to split open. They were glued, not stitched. Is that normal? The only stich i have is the one for the chest tube under my right breast. My stomach skin is numb and the inside is sore and feels like insides are JIGGLING when I walk so I walk around holding my breast and ride stomach in with both hands. lol Just hurts like hell I can't do alot. Still sitting here without anything. Can't believe I was left with no help/food/ . Even got on Facebook to ask for help from our local help pages. No answers. Just wow. Totally alone and helpless. How could this have happened from ground glass they were watching for YEARS?? This should not have happened to let it get this far, then tell me a lobectomy might cure me only to find out i did this for nothing! Totally disabled myself. No income now. Nobody to help with house, yard, etc. Rambling. You all know this. Just stunned there is no help anywhere. Guess I am just concerned right now with the pain and if it will be chronic yet or resolve. Less than 2 weeks so i understand takes a while. When I called the onocolgy surgery nurse Wednesday and told her about the stomach pain inside and numbness outside she said in a tone that told me it was bad---'well, that happens sometimes'....sounds dire. Thinking i am ready for palliative care. just stunned

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Hi Honey , have you thought about getting a second option ?? I did and took the second opinion ! They offered better results !! Sandy

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Thanks Sandy, what second opinion are you referring to? I had the lobectomy w/ them thinking it was just in the lung but after surgery they found it had spread to the lymph nodes they took out also.

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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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Oh Julie, this community is here for you.

I was in a similar situation but as we all know we are all different.

I was told the cancer was only in my lung but they ended up taking out 10 lymph nodes and one had traces of cancer so I had to go through radiation. I had already been through chemo before the lobectomy (lower left). Keep calling the social worker. Leave messages, call again...you need support.
april

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@julie67

Thank you. I feel like the incisions on my back and side are going to split open. They were glued, not stitched. Is that normal? The only stich i have is the one for the chest tube under my right breast. My stomach skin is numb and the inside is sore and feels like insides are JIGGLING when I walk so I walk around holding my breast and ride stomach in with both hands. lol Just hurts like hell I can't do alot. Still sitting here without anything. Can't believe I was left with no help/food/ . Even got on Facebook to ask for help from our local help pages. No answers. Just wow. Totally alone and helpless. How could this have happened from ground glass they were watching for YEARS?? This should not have happened to let it get this far, then tell me a lobectomy might cure me only to find out i did this for nothing! Totally disabled myself. No income now. Nobody to help with house, yard, etc. Rambling. You all know this. Just stunned there is no help anywhere. Guess I am just concerned right now with the pain and if it will be chronic yet or resolve. Less than 2 weeks so i understand takes a while. When I called the onocolgy surgery nurse Wednesday and told her about the stomach pain inside and numbness outside she said in a tone that told me it was bad---'well, that happens sometimes'....sounds dire. Thinking i am ready for palliative care. just stunned

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Hi Again Julie,

Just saw this post, yes, glue is normal. I was in massive pain for a good 4 weeks. I was numb for 10 months and I still can't wear a bra. I have nerve pain that runs under my left breast and around the back. But it is so much better. I am almost a year out and I can finally do stomach exercises and pick up things without pain. I only just started getting the feeling back around the incision area and under my armpit area.
I had my husband and daughter to help me I am so sorry you don't have support. Are you able to get around okay now?
What are you taking for the pain?
april

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