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Surgery Questions

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've read on here a number of times where someone said their doctor didn't want to do surgery but they found someone who would and they're now doing well. What I'd like to know is why the first doctor didn't want to do it? What are the different reasons?

I got my ct scan results today and they're not good and now I'm wondering why the pulmonary surgeon didn't want to do surgery and said he'd give me only a 30% chance of survival. This was about a year and a half ago. It happened to be a very bad day for me and I didn't ask why because I just wanted to get out and go home and cry. Now Im wondering. I'm on blood thinnners because of the blood clot but around the same time I'd seen a surgeon about taking out my parathyroid tumour and she was willing to go ahead with it. Is removing a lung a huge surgery? I don't have detectible cancer anywhere else so it seems like if I have few chemo options then getting that sucker out of there would be my best bet.

Thanks for any help.

Jan

Trubrit's picture
Trubrit
Posts: 5336
Joined: Jan 2013

Is removing a lung a huge surgery?

And I would say Hell yes!  A lung resection, well, maybe not so, but a whole lung, I would say so. 

Just my two pennies worth. 

I'm sure you've seen my other post and know how my heart feels for your latest news. 

Tru

darcher's picture
darcher
Posts: 289
Joined: Jun 2017

I agree, that a whole lung removal is a big deal.  Is taking out the entire lung for a tumour necessary.  I don't know diddly about this but that seems a little extreme to me.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I think that was initial plan a year and half ago when I saw the pulmonary guy. The whole thing. The spots are spread thrpughout the lung. Two at the top where it joins the trachea, one down at the bottom below that and the last one pretty much in the middle. I feel like if they'd have taken it out at that time I'd be doing okay now. Now I'm scared that if they do decide to take it out it be too late and it's already spread cancer 'seeds' elsewhere. 

I need some options or I'm hooped. They're growing quickly and I have very little they can do about it. I refuse to just sit here waiting to die. Dammit, I wish we had more options here in Canada. Maybe the ablation would work. Or something else we don't have. I'm thinking I'd better just check out some of the additional things that people do like the circumen and things like that. Things that aren't crazy expensive but might possible help. We need to start saving to bury me, too.

Jan 

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Have no personal experience, but I have a friend who had a rare carcinoid (usually GI tumor) in her lung.  She had nearly all of one lung removed.  Had some coughing for 6-8 weeks, but has since been fine.  This was around 8 years ago.

bobby66
Posts: 69
Joined: May 2017

dont think like that, maybe like you said there are more options that you dont know. even if in another country, maybe you can travel or new trials. You never know. have faith.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

My oncologist told me I have few options. I can't go on any other chemos than the one I'm on. The surgeon doesn't want to do surgery but I'm thinking about seeing if someone else will. We don't have some of the other treatments available elsewhere and we do not have the money for me to do something in another country. My onc also checked into if there are any trials right now and there aren't. 

I'm always the one to tell everybody to always have hope. But I also have to be realistic and plan for the future. If I get more time, great, but if I don't I don't want the stress of worrying about what my family will do and knowing I should have dealt with things when I had the time and ability.

On the plus side, I was just called with an appointment with the radiologist so he must think he can do something. Radiation will not get rid of the tumours but it might slow them down or stop them for several months.  

bobby66
Posts: 69
Joined: May 2017

I will pray for you..

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you!

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

I'm so, so sorry to hear this Jan. I wish I had an answer for you so badly. All I have is moral support, and info about what I'm doing. I won't push it, but if you want any of it, I'm happy to share. I may not have all the answers, but maybe I can shortcut some of your homework. We're all looking for the same thing here.

Thomas

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

For anyone who is reading some of what's going on with me, do not lose hope. I have a unique situation that you can read about on my profile here. I had side effects and additional things that happened that are extremely rare with our cancer. And some of them are the reason I have few options now. Please do not think that your situation could end up like mine because its very unlikely. I just had some really crappy luck.

Its too important to me to inspire hope in others to allow anyone to be affected by my story and worry theirs might end up the same.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

I'm sorry to hear of the situation you are in and I'm not able to help you with your options, especially while your care is in Canada.  I'm always of the opinion that if there is someone out there that will agree to help you in some way, get that opinion, analyze it and then go with what you feel might be right for you.  My first surgeon didn't give me the answer that was sufficient for me, so searching is an option.  You are in my prayers for an option that will work for you.  Also, thank you for your response on my post, it meant a lot.  Hoping the radiologist can give you some insight and a direction to take in helping you.

Kim

darcher's picture
darcher
Posts: 289
Joined: Jun 2017

   Your tenacity is inspriing.  Last night I let this get the better of me for about 5 minutes and punched the inside of the garage door.  Now I've got about $500 or so in repairs needing done.  I was told this would be a rollercoaster and today was the bottom of a dip.  We went to a park called water world. I decided up front I wasn't going to go in the water or get on any rides only because I don't know when I would have to do number 2  and or if something bad would happen.  I ended up staying at our little camp while my wife and her sister took the little ones on the rides.  The  night before I was bleeding a little and I could see it was getting progressively worse.  Add to that I can't really tell when it's just gas versus the other.  Consequently I run to the bathroom a lot.

  While holding down the fort it got really bad.  I went a couple times and I thought I was dying from the amount of blood that was coming out.  I cut short our trip because of it. I ended up yelling that we have to leave NOW! and go straight to the hospital.  I could only imagine the looks on some of the other people's faces when I said something about bleeding internally.

 I called KP in a panic as we were driving back and at first I got someone on the phone who obviously had no clue.  I told him I was just diagnosed with colon cancer blah blah and was bleeding rather heavily.  Guess what his first question was?  From where?  At that I lost my temper and told him to get someone on the phone that knows what colon cancer is.  A nurse got on the line and I explained the issue to her.  Thinking she was going to tell me to get to the ER right away she instead asked me if I was constipated.  "Well,... yes".  Then a couple more questions.  Turns out,  that little alien inside me bleeds very easily and it doesn't take much to provoke it.  I never knew that.   They told me to get some laxative and a jug of fiber.          

  The thing of it is, do we really have the know how to make the right decisions. Case in point. What I thought was a life threatening situation turned out to be a minor inconvenience.  With it being cancer, and without a medical degree, it's tough to go with anything other than what the doctors say beyond looking for treatments demonstrating better outcomes.  I know enough to know I don't know.  I couldn't trust my own opinion because I'd be flailing around in the dark knowledge wise and probably end up dead a lot sooner than I should. 

  I'd ask the doctors to be completely blunt and not sugar coat anything.  When the time comes for them to ask me anything as far as which way to go.  My answer is going to be very simple. Which ever way has the best chance of being cured.   From what I know they may present several options depending on our lifestyle and so forth.   I'm not one to sacrifice potential death for sake of convenience.  As long as we're up and about there is always hope.  I'm praying for you. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you for the support darcher. Yeah, it's so scary and nobody really can ever seem to give us definitive answers. I'm going to put up a new post in a couple of minutes in the hope it will help someone to knaw what's happened to me over the last week. I'm still sitting here shaking my head. I hva e rcatl bleeding, sometimes a good amount, even over three years since my ostomy. My syrgeon says it's because the colon/bowels are not happy with not being used and they always produce mucude to move thigs along whether there's anything to move or not. So I get everything from fresh bright red blood to old brown stinky blood. From nothing for days to dripping out when I'm on the toilet. I wear a p[ad at all times because I never know when it will happen. I'm told that ceratin drugs like antibiotics can mke it worse as well, plus I'm on blood thinners. Sorry to be graphic but I don;t se any point in trying to pretty things up for people who could use real information, not careful words.

Take care, this is s**t. It really is. There's no other way to put it. I've had a bad week and I'm mad right now and probably will be for a while.

Jan 

PamRav's picture
PamRav
Posts: 288
Joined: Jan 2017

so sorry to hear that your news was not what we had all hoped for.   Maybe you could gather your thoughts write down all your questoons and talk to your oncologist on the phone?   I think you have said previously that your doctor is a long distance from you.  I know nothing about your health system but a second opinion seems warranted.   Try to stay positive you need to be the best advocate you can for yourself   Ask lots of questions and demand lots of answers   If you don't understand, or it doesn't make sense ask again and again.  

Wishing you all the best

P

.  

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Apparently they're going to do some radiation in the meantime to slow things down or sytop it for a bit. Thank you Pam!

Jan

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Yes it is a big deal having a lung out but surgery still remains the best curative outcome for cancer. We sometimes forget how big a deal having cancer is. In my opinion It probably should have been done sooner than later.  I am in a situation now where any major operation will probably kill me. My nephrologist has already told me I will not be having any hip or knee replacements. With the immuno suppressants I have to take to keeep my kidneys functioning he said I would have little or no chance of fighting off infection or renal failure. Good luck whatever you decide Jan ,Hugs Ron.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

THanks Ron! yeah, s**t's getting real at this point. I have to make some tough decisions and no more pussyfooting around hoping for the best. I had a really bad week and a good scare the other day. I'll elaborate in a new topic. 

Hugs back at you Ron!

Jan

Bellen
Posts: 281
Joined: Aug 2016

Jan - Thinking of you as you go through this.  Hoping that you hear that there may be another option for you.  I live in Canada - Ontario.  I often hear of immunotherapy that is being done for a specific kind of lung cancer in Michigan (not sure if Canada is) and I don't know if your lung tumours fit that category.  But I am praying that your Onco will tell you that there is some other chemo or radiation option, and that the Radiologist appt brings some better news.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you!

Jan

beaumontdave's picture
beaumontdave
Posts: 1101
Joined: Aug 2013

I get your frustration Jan and I wish I had direct answers to your questions[it's that guy"want to fix it" thing in me]. The one thing that popped in my head, was that way back in 2013, I remember writing about the fact that at diagnosis, I had no insurance. MediCal[ the Cali. ins. for low income folk] was my only option, and it came with a $5000 a month co-pay. Well after four months or so I was out of cash and casting about for anything to keep the chemo going. I found the Desert Cancer foundation in Palm Springs. I qualified for help, as long as I was treated down in the Coachella Valley, they would make the co-pay, which they did. I wondered at the time if they had such groups elsewhere, or whether I was just lucky to live near a wealthy group of desert citys/people. Does Canada have such a thing or does universal care there preclude that kind of charitable group? Have you looked for that sort of thing, grants, aid, to help you pursue another surgical opinion. I hate to see money limit your choices. Just a thought..................................................Dave

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for the suggestions Dave. From what I see the only means of getting additonal funding for anything elswhere is to do one of those things where you get a bunch of strangers to help you. Go fund me? That type of thing. And that's pretty much been used up and abused by so many people that it's not likely an option. I'm going to check into some things. And when I finally get unemployment I'm going to start a few things like curcamin or things like that to see if I can't at least help things along. Have to be so careful financially. I can't waste money on silly things but this is getting serious.

Take care Dave, I always appreciate your words!

Jan 

NewHere's picture
NewHere
Posts: 1258
Joined: Feb 2015

Many years ago for lung cancer from smoking and had a good portion of his lung taken out (2 lobes).  He had a big scar and I remember that being the worst part for him in that it itched.  This is decades ago.  I had a lung resection 8 months ago.  Had a 12 cm x 4 cm x 2cm section taken out.  Was out of the hospital in 36 hours and walking 3 miles a day a couple of days later.  That being said, I agree lung removal sounds like, and is, major surgery, but even 30 years ago it was somewhat an easy go for my dad.

All that being said, PLEASE look for more opinions and doctors.   There are places that may do a remote second or third opinion  based on scans and reports.  There may be other options, such as ablations.  Maybe try calling some of the places like MD Anderson, Cleveland Clinic and Memorial Sloane Kettering in the U.S.  Cleveland Clinic I think will review things.  Doctors may refuse things, including performong surgery, for a variety of reasons, including being scared of having poor results/survival rates.  Get your answers JJ.  Thoughts and hugs for you.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you. We're in Canada so nothing done anywhere else would be covered and we wouldn't even have the funds to be able to send me anywhere on a plane to even be seen. I am going to hit this hard although I'm crappy at finding information. My daughter is trying to help me with this, she's much better at it. I've been off the computer for a week and in the hospital the past few days so I'm running behind at this point.

Jan

NewHere's picture
NewHere
Posts: 1258
Joined: Feb 2015

I have a lot of family in Canada and know the drill with health care pretty well unfortunately :( 

I have some links below for you.  Has some contact informaiton, though may not be quite on point. With all the things you have going on and the questions/concerns, perhaps there are answers to be passed onto back to your doctors.  Not sure the costs, but guessing the costs I found for Cleveland Clinic may be in line.  Worth at least a call or two as a start?

 

################################

 

Here is a link of Cleveland Clinic second opinion services.  $565/$745 

https://my.clevelandclinic.org/patients/international/second-opinions

 

A form for Mayo Clinic

http://www.mayoclinic.org/documents/mc2434-pdf/DOC-20078991

John Hopkins (Breast Cancer, but sure they can refer)

http://pathology.jhu.edu/breast/second-opinion.php

MD Anderson

https://www.mdanderson.org/for-physicians/refer-a-patient/second-opinion-pathology.html

Here is a list of US centers

https://www.cancer.gov/research/nci-role/cancer-centers/find

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you!!!!

gsmith53
Posts: 27
Joined: May 2017

I know that we've talked about this before, and there is no REAL studies. But, canabadiol, the non-high producing part of canabis, just might help. It's on the can't hurt list.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks. It's one of the things I'm probably going to implement just in case it does help. We're in the process of getting me a green card which enables me to get access to those things. I'm getting desperate here.

Jan

mokomapa's picture
mokomapa
Posts: 24
Joined: Jan 2010

jan,

i may not be on this site very often but i continue to pray for you every day.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Tom, your prayers are appreciated, as always. I got your emails and will read them after. I've been off line for a week. I'm sure they'll make me smile! My daughter just switched out the carb in her '77 Z28 that she finally finsihed building and what a difference it made! She went from an Edelbrock to a Holley and it's shocking! She'd been planning to replace the engine to get more horsepower and now she's just going to leave it. I got to go to a car show with her a few weeks ago and it was so cool to see these guys talking about the fabulous paint job and her standing there being able to say she did it.   

Take care Tom!

Jan

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