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I found this site by doing a general search so thought I’d try it out.

I am a 55yr old woman with recurrence of lung cancer after 3.5 yrs remission; had chemo/radiotherapy last time. It’s assessed as T2N1M0, 7cm.

Dr’s recommended (open) surgery. I already have a lot of nerve pain - due to crushed vertebrae in neck - which means my right arm/ hand is painful and numb (parathesia?) and doesn’t work properly and I have been reading about the similar chronic, persistent nerve damage pain the surgery can leave you with. I’ve decided against surgery but my surgeon didn’t mention post operative, persistent pain at all and it was only by reading about the surgery that I discovered about 50% of patients end up with it. It’s probably a higher % than is reported, too. 

I’d like to hear from people who’ve had open surgery and their experience with pain plus people who’ve had alternative to surgery treatment.

😁😃🤞🎉

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Jen,

Welcome here.

I've had 3 open surgeries: a pneumonectomy, a second surgery to repair ruptured sutures, and a third suture repair.  All three incisions were in the same area and consequently, I have a lot of nerve damage.  But, I didn't have nerve damage after my first surgery and the surgical pain resolved relatively quickly.  I also had an alternative to surgery -- cyber surgery after tumors metastasized to my remaining lung.

This form of surgery was painless and I've had no residual side effects with it.  My procedure was called a CyberKnife but there are many forms available now.  Here is some information on radiation treatments that may substitute for conventional therapy.  You should focus on IMRT, IGRT, SBRT, and Proton Therapy.  They all do the same thing by slightly different methods.

Further questions?  This is the place.

Stay the course.

Tom

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Hello and welcome! I second Tom's recommendation that you check out the focused radiation treatments that can sometimes substitute for surgery. I haven't had those, but have heard good reports from those who have. Best wished.

Bridget O

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Jen

I've actually had SBRT radiation on 3 tumors, one in my left lung and two in my right. I had no problem with it at all other than having to lay perfectly still for about 1 1/2 hrs as they treated each tumor consecutively. Was told it usually takes about 20 min. per treatment. I had 5 treatments total, but how many you have can vary from 1-5. No pain at all. Slight case of pneumonitis afterward easily dealt with by 7 day course of Prednisone. I was not a candidate for surgery. That was over a year ago and have had no further problems with those tumors. I'd definitely recommend it to anyone who is a candidate for it. Have since also had SBRT on a small tumor on my adrenal gland also. 

Judy M. 

 

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On 5/12/2018 at 2:25 PM, Tom Galli said:

hi, thanks for replying 🤗

ive been considering proton beam treatment so hopefully they’ll go with that. Am just not brave enough to be cut up.

Tom - you sound a lot braver than I am for sure!

Keep fighting the good fight.

I have to say that it's ‘good’ (not the right word) to know others are out there to share this with because it’s not easy to keep positive is it?

xx

 

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On 5/12/2018 at 9:16 PM, Judy M. said:

Jen

I've actually had SBRT radiation on 3 tumors, one in my left lung and two in my right. I had no problem with it at all other than having to lay perfectly still for about 1 1/2 hrs as they treated each tumor consecutively. Was told it usually takes about 20 min. per treatment. I had 5 treatments total, but how many you have can vary from 1-5. No pain at all. Slight case of pneumonitis afterward easily dealt with by 7 day course of Prednisone. I was not a candidate for surgery. That was over a year ago and have had no further problems with those tumors. I'd definitely recommend it to anyone who is a candidate for it. Have since also had SBRT on a small tumor on my adrenal gland also. 

Judy M. 

 

Hi Judy, 

well done with beating the tumours! How long have you been in remission?

they said I can’t have RT in the same place because it’s ‘all burnt’ on that area so I presume the tumour is very much in the same area as before but I will ask the oncologist. 

The first time they advised I go away and enjoy what time I had and now they are saying the tumour responded unexpectedly last time so the surgery was supposed to be a good option. Anyway maybe some proton/whatever treatment will give a few more years!

after RT my thyroid had trouble so now take tablets for that. It’s not a biggie but I always wonder what the side effects will be now.

JenULF

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Jen

No more trouble out of my lung tumors for a bit more than a year, but not in remission. Three month scans showed mets in hip and adrenal. The way the Oncologists put it was that they got them,  they just didn't get them quite quick enough. Had SBRT on adrenal and standard radiation on hip and was started on Opdivo which is an immunotherapy drug. Next scans showed disease stable. But I've had a lot of pain and disability in hip in spite of the radiation. I believe if I'd ask for SBRT on that met also I'd have been spared these months of pain and disability. But the Radiologist assured me he could eliminate that tumor with standard and I believed him. Have recently had an ablation/cementopathy on that hip. Jury is still out on that. Will write about it when I know definite results. Hope you can get the proton treatment and that it works for you. Glad you included the part about them telling you to go away and enjoy what time you had. My Medical Oncologist has that sort of pessimistic attitude though he's an excellent doctor. I always say he's a doctor, not a prophet. I'll be here until the good Lord decides to take me home. 

Judy M

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Hi Judy, 

i have appointment soon with oncologist. 

Sounds like you’re having a lot of pain- hope the ablation works. 

Felt I should at least try the first time but this time am thinking it’s only going to come back again, most likely, so I don’t really see it going away. It’s just a case of have treatment-live a bit longer-have more treatment until there isn’t anymore; that sounds depressing but I mean it in the same way as you do about it being the Lords decision. Am not a believer but sort of hoping I’ll be proved wrong 😃

Jenuleaf

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