Very tough desicion.. I'm seeking 2nd opinion .. catch 22

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Jason43
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Location: Southeastern Mass

Very tough desicion.. I'm seeking 2nd opinion .. catch 22

Postby Jason43 » Wed Nov 20, 2013 3:08 pm

I always start by thanking everyone because I feel with out this board I would have no hope.. this gives me hope..I made the very tuff desision today of postponing my tumor removal until monday so that I may seek my appointment with dana farber in boston. The surgeon said it was a risk but if it made me feel better that's what he will do. I do have a blockage but gave me a good feeling I would last until monday. I took all of your advice and made my ultimate desicion. The question is now what am I hoping for at dana farber? If they sau the same thing at least I know I gave them a chance. I hope I made the correct desicion. I'm very nervous. The surgeon stated he would rather me seek a second opinion and be comfortable than add stress about not getting second opinion. What do you guys think?
Stage 4
Many spots on liver 11/19/13
Unable to resect liver
Tumor removed 11/26/13
Liver resection 11/7/14
Lung resection 1/10/15
New tumors on liver already after 1st scan after surgeries.
Back on chemo 2/4/15
CEA from 1.7 to 37.2 8/10/2015
CEA 22.5 but have quadrupled in my lungs
Went through every chemo
I fought the fight. Gods hands now. Or Trials?

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Kathryn in MN
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Kathryn in MN » Wed Nov 20, 2013 3:14 pm

Stay on clear liquids and do what you feel you need to do.

When my tumor was finally found during colonoscopy (after 2 years of misdiagnosis) I was told that I was within a few days of fully obstructing. My GI called a surgeon immediately. I was given instructions to stay on clear liquids only. So much for the meal I'd been craving since doing colonoscopy prep. ;) Before we even got out of the parking lot, the surgeon's office called me with a pre-op for the next day and surgery scheduled the following morning. When I asked about laproscopic surgery and found out the surgeon I was scheduled with did not perform it, but another in the office did, I pushed for more information. When they looked at schedules, they informed me that there was no one who had an opening soon enough for me, as they were certain I would be obstructed in under a week, and did not want to chance more than a couple days. I ended up with a surgeon coming in on his day off to take care of me.

I would not push it too long, and I would stay on CLEAR LIQUIDS only from now until surgery - do not take any risks with that.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

mymom
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby mymom » Wed Nov 20, 2013 3:27 pm

Did you look into the hai pump at memorial Sloane Kettering? That may get you resectable eventually to clear your liver. You Can have your obstruction removed separately on Monday and still per sue pump.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED
6/22- small spot liver again, ablation oct 2023

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Rob in PA
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Rob in PA » Wed Nov 20, 2013 4:12 pm

Jason, I think you are doing the right thing by going to Dana Farber. You don't want to live the rest of your life thinking "what if"? Now you will know.

Yes, there is a risk by choosing what you are doing, and you may have others say you should not risk it....BUTT, so many times on here I've heard others say that after a second opinion they chose a different plan of attack from what their initial docs told them.

Yes, I agree with Kathrynn, once I was diagnosed and fully obstructed they put me on clear liquids for three days until I had my colostomy surgery. I already did my colon prep for my colonoscopy (which was miserable because of my blockage) so they just kept me on clear liquids.

Doc said my intestines looked like stuffed sausages because of the severe blockage (won't go into the gross details of how he got rid of all that crap but he did). He didn't know how i was able to function daily.

For the record, I was misdiagnosed with hemorhoids (sp?), thus my putting off the colonoscopy until i couldn't take it any longer. No pain, just fullness and couldn't have a bowel movement.

Also, my G.I. doc that found the tumor immediately sent me to a major cancer hospital with a Board Certified Colorectal Surgeon.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

janklo
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby janklo » Wed Nov 20, 2013 5:14 pm

Just so you know. . .if you get any crampy, wavy, severe pain before your appointment. . .don't hesitate to contact your doctor. My daughter's cancer was discovered but surgery not scheduled for a couple of weeks. The day before she was scheduled to go in for surgery, she got terrible crampy wavy pain and she had to go to the ER and get on a diladid iv and spend the night at the hospital. They still didn't do the surgery until the scheduled day, but she needed the pain meds to make it through, it was so painful. And do what Kathryn says, be sure to stay on a clear liquid diet, do not have anything with dairy.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

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j'swife
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby j'swife » Wed Nov 20, 2013 6:23 pm

I've been thinking about you all day and right now I feel very relieved because of your choice, which is wisest in my view and that of a lot of others clearly. I'm not sure the comments responding to you have made clear one big difference between a cancer center and you having your surgeon do an operation - EVEN if your surgeon has experience with a hundred or more colon tumors that have metastasized. [ and please do find out BEFORE you see D-F what his experience is. You can ask ..it's a normal question for a surgeon to answer.]

The cancer center offers a TEAM of different specialists to you. They will meet about your case together and advise each other; all the nurses and residents in the entire inpatient unit are oncology specialists. For example, liver surgeon, colorectal surgeon, radiation specialists, medical oncologists and ostomy care teams. They recognize symptoms of anf know how to heal the conditions related to cancer. This is differnt from the conventional care model wherein the surgeon decides when to call in others and who to recommend, taking the responsibilities of a kind of case manager. That is a tough role- and the organization in a cancer center is designed to make it automatic. Is it always perfectly executed? Of course not- but it's the norm.. even if every doctor you chose to deal with in the conventional setting had the same specialized training and same experience with multiple cases of your disease, the teamed approach has value from the combination of talents- and from the desire to succeed when peers are watching that is to the patient's advantage.

Please let all your new friends in this forum know how you are doing and that you have stayed safe over the next few days...
Stay strong !
DH 63 12/12 unresectable liver mets. 2/13 Ffx-Avstn fail. 4/13 HAI pump@MSK. 8/13 mets 50%;Resectn & LAR 10/13.NED! Folfiri & FUDR. reversal 4/14. 3 lvr spots 10/14. 5FU+FUDR. 5/15 resectn/IRE . 7/15 lung 'thingy' 9/15. FUDR, Xeloda. HFS. 2/16 RFA of lung met. FUDR/IRI. 4/16 2 lung 1pelv spots. XEL, stop FUDR. 6/16 RFA 2of 3 mets. XEL. D.10/3/2016 of infection post surgery to remove aortic clots (rare Budd-Chiari syndrome) in local hospital. HAI success! then blindsided...

pog451
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby pog451 » Wed Nov 20, 2013 6:25 pm

Jason, few of the decisions we need to make are easy, but its your Life, your disease and your treatment and you need to be comfortable with it. No-one elses "right" is necessarily your "right".

Congratulations on the decision, good luck with the consult and once you are clear on your path, get your cancer-killing ass in gear.
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

Cj51
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Cj51 » Wed Nov 20, 2013 11:42 pm

I've been thinking about you for a few hours, and thought I should probably keep my mouth shut, but I just really need to say this. I apologize if I offend you. Earlier today, you got pretty much a unanimous opinion that the obstruction is an emergency and you should get that resolved first, then take the time to get opinions about what to do next. I think second opinions are wonderful. BUT, if my oncologist was looking at my test results and was on the phone pleading with me to have my tumor removed before my colon burst from obstruction, I'd pay attention. An internet forum, even one as wonderful as this one, is filled with non-medical personnel who don't know your particular situation, haven't seen your scans, and can only give you a perspective from their own unique experience. I have a high degree of respect for everyone on this forum, but It concerns me that anyone would even consider encouraging you to put off surgery when your doctor is telling you that it's urgent that you have it. It concerns me even more that you're doing just that. I disagree that it's a tough decision. To my way of thinking, it's clear: Take care of the emergency situation first, then go on to the next most threatening thing.

I am one who never wants to say "what if", and make many decisions accordingly. However, there's also "I wish I had...", and this well meaning stranger on the internet thinks you should be listening to the doctor that's right there, seeing your records and knowing your situation. Obstruction is nothing to mess around with, and Monday is a long way off. If your colon bursts, as your doctor fears, and they have to do emergency surgery, then you don't get to choose the time or the surgeon. Acting now gives you that ability, and from what I hear, your surgeon isn't a colorectal surgeon but he or she is familiar with your unique inner physique, and so seems a good choice. I realize that you are under a great deal of stress and aren't sleeping, which makes it hard to think clearly.

So, I've said my piece. I do not agree that waiting is a wise course of action. I just thought that someone ought to say so. You may feel free to chide me later if everything goes just fine, for as someone said earlier, it's your body, your disease and your risk to take. I, for my part, really hope you reconsider. At the very least, please at follow the suggestions to stay on clear liquids, and at the first sign of discomfort from the obstruction, please contact the doctor immediately. Again, I hope that I've not offended you, but you did ask for opinions. Know that we will be here for you no matter what you do next. This is an awesome community.

Good luck to you,
Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

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O Stoma Mia
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby O Stoma Mia » Thu Nov 21, 2013 2:59 am

To ColonClubbers - As it stands right now, it looks like Jason43 will be spending today (Thursday) getting ready for his 2nd opinion meeting at Dana-Farber tomorrow (Friday). Many of you have already weighed in with your opinions, but if there are those of you who have new things to say -- or things to add to previous posts -- now is the time to let Jason43 know. He has said that he will be checking the Forum every day with his IPad, so I expect that we may hear from him sometime today..

The information below is a summary of what has transpired so far.

========================================================================
Jason43's signature as of today (based on information provided in previous posts)
========================================================================

Code: Select all

Boston male 43 yr,
Colonoscopy+CT Scan - 11/2013:
dx Stage IV-A Colon Cancer w/ 12 mets to liver;
Was told that liver resection is not an option:
Was told that removal of colon tumor is urgent (risk of imminent obstruction);
Looking for alternatives...
Deferring today's planned colon tumor surgery until Monday (4 days of clear fluid diet until then)
Planning to spend Friday at Dana-Farber Cancer Institute to get 2nd opinion
Spending today getting ready for Friday's Dana-Faber consultation
Seeking advice on questions to ask at Dana-Farber Cancer Institute.
Seeking advice on possible treatment scenarios after Monday's colon surgery...

================================
Chronology of Jason43's five threads
================================
Thread #1 SAT - Just joined stage 4 colon with spots on my liver

Thread #2 MON - In 4 days my world is upside down.... Please Help!!!

Thread #3 TUE AM - Please read now, I have 4 hours to decide... THANKS

Thread #4 TUE PM - What if surgeon is not board certified? 24 hours left.

Thread #5 WED - Very tough desicion.. I'm seeking 2nd opinion .. catch 22

===============================
Chronology of Jason43's nine posts:
===============================

Post #1 SAT AM
Jason43 wrote:I have not slept in 3 days. I basically went for a routine colonoscopy by choice of myself. I had 2 episodes of blood in my stool so I mentioned it to my primary. He really didn't see the need of sending me and told me he was 99% sure it was a hemroid. He said my blood work is always perfect and he left it at that. I pushed for the colonoscopy and he said if it will make you feel better go ahead as he then set up the exam. Here I lay in my bed with my iPad writing on this forum with stage 4 colon cancer that has spotted to my liver. I don't know what to do, I don't know what to think and I'm numb. I see the oncologist on Monday but other than that I'm lost. Can someone explain what happens next? Why am I not in the hospital? I feel great. I have no issues besides arthritis in my back. I'm a 43 year old male and I'm craving for answers. I have a 7 year old boy. I read I have a 8% chance to make it 5 years? Is this all accurate? Can anyone, someone please help. Thank you so much.

======
Post #2 SAT PM
Jason43 wrote:I can't thank everyone enough. I will be on here daily. I just want a chance to beat this. I want a chance to live. I will give it my all. I am from Boston mass and was thinking about going to dana farber cancer clinic wich I here is quite good. I once again can't thank everyone enough. This is so gut wrenching. I feel like such a burden to my girlfriend and my mom. I thank everyone so much. I truly do

======
Post #3 SUN AM
Jason43 wrote:...What is the HAI pump? I'm sorry to bother you but I am clueless to all this. I don't want to be on Google as it seems to be a bad thing however I am trying to gain knowledge on this situation. I have chose to get a second opinion at Dana Farber Institute in Boston Mass regardless thanks again so much.

====
Post #4 MON AM
Jason43 wrote:I can't thank everyone enough, really. Today I see the oncologist for the first time. I am a nervous wreck. I just want to get some info on diet, on exercise. Am I able to do normal things like this? So many questions to be answered. So many variables. I have become so humbled at 43 years of age. I don't want to die. Thanks everybody.

====
Post #5 MON PM
Jason43 wrote:I saw a oncologist today for the first time since being diagnosed. She said my liver has many spots on it and can not be resessed. I don't even know if I'm saying it properly. She said I have a tumor in my colon that is blocking my stool. She wants to remove tumor immediately however I have a appointment with dana farber in Boston on Friday. She is saying my liver can't be resessed. Can someone please help me. She said I am in the stage of non curable cancer and I have 3 years at best. If I do nothing she said I will have 2 months to live...... Do I remove tumor immediately or do I wait for second opinion? I'm 43 years old.... Thanks so much

====
Post #6 TUE AM
Jason43 wrote:All this is so overwhelming. They are telling me my tumor is obstructing my colon and I need to have it removed ASAP... I explained that I have a appointment at dana farber on Friday this week however they say it needs to be out NOW... They just scheduled surgery for Thursday to remove tumor... What should I do?

====
Post #7 TUE AM
Jason43 wrote:I can't explain in words what you guys have done for me so far, greatly appreciated however I don't know what to do. As I was driving this morning to my second cat scan in 2 days to check my lungs now as my liver has 12 spots on it my phone rang. It was the oncologist who I just spoke to yesterday for the first time. She told me that after speaking with the dr. Who performed the colonoscopy that I'm obstructed. She wants me to have the tumor removed immediately. She thinks it is a bad idea not to take the tumor out immediately. She has no problem with me seeking a second opinion at Dana Farber wich is suppose to be Friday but she explained that there is no time to wait to remove this tumor. She is very worried that it could burst then I'm in serious trouble. I just don't know what to do.. I guess my question is this. I was diagnosed 6 days ago and I haven't slept I don't know what's rite or wrong. I'm scared. I've never been sick. If they remove the tumor Thursday wich they want to do does this mean I can not be cured? I just don't get it. They say my liver can not be resected. But I guess that's what I'm going for a second opinion on Friday is for rite? I'm just so confused. All I know she is pleading with me to remove the tumor Thursday. This is so crazy, what is the rite move?

====
Post #8 TUE PM
Jason43 wrote:As I stated earlier today I was advised to immediately take out the tumor because of obstruction. The thing that gets me is that the surgeon performing the procedure is the same surgeon that performed my gastric bypass 7 years ago. They want me to go with him because he knows my new anatomy so to speak if that makes any sense. He is not colon board certified however I don't have time to wait I guess. And like I said my appt. With dana farber is friday however that still means they have to make a operation date if they suggest the same thing. I'm leaning to taking the tumor out thursday even though he is not board certified. I don't have many options do I??? I feel like I losing my sanity. Thanks again guys and girls. I'm so appreciattive. I just don't have the time to find another surgeon by tomorrow. I tried calling dana farber today and the soonest I could get in is friday. And even then like I mentioned , that's not even giving me a date to remove the tumor.. this is so much. I'm stressing like crazy. Thanks everybody... so grateful to have your support.

===
Post #9 WED PM
Jason43 wrote:I always start by thanking everyone because I feel with out this board I would have no hope.. this gives me hope..I made the very tuff desision today of postponing my tumor removal until monday so that I may seek my appointment with dana farber in boston. The surgeon said it was a risk but if it made me feel better that's what he will do. I do have a blockage but gave me a good feeling I would last until monday. I took all of your advice and made my ultimate desicion. The question is now what am I hoping for at dana farber? If they sau the same thing at least I know I gave them a chance. I hope I made the correct desicion. I'm very nervous. The surgeon stated he would rather me seek a second opinion and be comfortable than add stress about not getting second opinion. What do you guys think?


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WorriedWife
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby WorriedWife » Thu Nov 21, 2013 3:02 am

Dear Jason,

It's so very difficult in making these important decisions. We had to make one last year and I was on here day and night asking, wondering, researching, etc. I couldn't sleep either and I was a complete nervous wreck. Our decision wasn't about surgery, but it was about chemo. Anyway, try and get some rest now that you made your decision and while awake, keep busy watching movies, reading good books (not medical ones) and just take it easy.

I don't have as much experience as most here, but I for sure agree with them in saying to drink fluids only. If it were me, I wouldn't drink anything red either. (people here, please correct me if I'm wrong) I've always heard that staying away from red drinks is best if surgery could be coming up. Every time my hubby gets worse, I make him drink orange, lemon lime, clear and not red :) incase he'd would end up in ER for an emergency surgery.

Also, I find it rather interesting that the Dr. did NOT tell you to drink liquids only. <shaking my head> As usual, we must be our own advocates. (unless he did tell you that and you just didn't mention it)

Prayers for you and let us know what they say at your appt. GOOD LUCK!!!! Stay calm :) I totally agree with others too....bad pain ....go to ER. Don't wait.
Hubby
CC Stg. 2b
Dx 6/12
surgery & reconnect
opted out Folfox
Pet Scan Aug NED
abscess/fistula for over a year
ongoing Dec 2013
Praying for each and every one of you

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Patience
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Patience » Thu Nov 21, 2013 4:24 am

I suppose "urgent" carries less a degree less danger than "emergency". :?:

Anyway, I don't know how far you are traveling or by what means, but if driving, I'd carry a list of every hospital with their phone number that will be in your travel path along the way. If by air, I'd get the phone numbers at each airport for emergency medical services within the airport. If an emergency does occur, your having the right information at hand could prove to be very important to you.

Besides that preparation, you could call the office at Dana Farber and ask their advice on your current diet, and for any other tips for how to make the delay in treatment the safest possible.

Good luck. Trying to juggle all the decisions can seem almost overwhelming, but such is the creature of major medical illness.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

Jason43
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Jason43 » Thu Nov 21, 2013 7:30 am

Cj51 wrote:I've been thinking about you for a few hours, and thought I should probably keep my mouth shut, but I just really need to say this. I apologize if I offend you. Earlier today, you got pretty much a unanimous opinion that the obstruction is an emergency and you should get that resolved first, then take the time to get opinions about what to do next. I think second opinions are wonderful. BUT, if my oncologist was looking at my test results and was on the phone pleading with me to have my tumor removed before my colon burst from obstruction, I'd pay attention. An internet forum, even one as wonderful as this one, is filled with non-medical personnel who don't know your particular situation, haven't seen your scans, and can only give you a perspective from their own unique experience. I have a high degree of respect for everyone on this forum, but It concerns me that anyone would even consider encouraging you to put off surgery when your doctor is telling you that it's urgent that you have it. It concerns me even more that you're doing just that. I disagree that it's a tough decision. To my way of thinking, it's clear: Take care of the emergency situation first, then go on to the next most threatening thing.

I am one who never wants to say "what if", and make many decisions accordingly. However, there's also "I wish I had...", and this well meaning stranger on the internet thinks you should be listening to the doctor that's right there, seeing your records and knowing your situation. Obstruction is nothing to mess around with, and Monday is a long way off. If your colon bursts, as your doctor fears, and they have to do emergency surgery, then you don't get to choose the time or the surgeon. Acting now gives you that ability, and from what I hear, your surgeon isn't a colorectal surgeon but he or she is familiar with your unique inner physique, and so seems a good choice. I realize that you are under a great deal of stress and aren't sleeping, which makes it hard to think clearly. No harm taken at all. I truly mean that. I already made my desicion and I have to live with it. I hope! My thought process was as follows, my surgery was suppose to be today 11/21/13 my appointment tomorrow is with dana farber. If I get to dana farber and they second that it has to come out at once, I'm hoping they will possibly do emergency surgery at once. If not I wait till Monday as planned. I truly respect your opinion and have not one negative thought toward you, not one. Quite honestly my family and girlfriend all wanted me in there today. Thanks for taking the time to respond. Also I made 2 bowel movements in past 2 days wich made me lean to waiting.

So, I've said my piece. I do not agree that waiting is a wise course of action. I just thought that someone ought to say so. You may feel free to chide me later if everything goes just fine, for as someone said earlier, it's your body, your disease and your risk to take. I, for my part, really hope you reconsider. At the very least, please at follow the suggestions to stay on clear liquids, and at the first sign of discomfort from the obstruction, please contact the doctor immediately. Again, I hope that I've not offended you, but you did ask for opinions. Know that we will be here for you no matter what you do next. This is an awesome community.

Good luck to you,
Cj
Stage 4
Many spots on liver 11/19/13
Unable to resect liver
Tumor removed 11/26/13
Liver resection 11/7/14
Lung resection 1/10/15
New tumors on liver already after 1st scan after surgeries.
Back on chemo 2/4/15
CEA from 1.7 to 37.2 8/10/2015
CEA 22.5 but have quadrupled in my lungs
Went through every chemo
I fought the fight. Gods hands now. Or Trials?

Cj51
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Cj51 » Thu Nov 21, 2013 9:58 am

Hi Jason, I got your message and found your reply. Thanks for responding, I'm glad you're doing OK and, as odd as it may sound to say it, I'm glad to hear that you were able to 'go'. ;-) I can see where that would heavily sway your opinion, and you're obviously not totally obstructed if that's the case. I wish you safe travels and a treatment plan that you are comfortable with and that obliterates the beast. It sounds like you have no trouble standing up for yourself, asking questions and insisting on answers---this will serve you well on your cancer journey!

Everyone here will be watching for your updates. We wish you all the best, Jason,

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

Mommato4boys
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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Mommato4boys » Thu Nov 21, 2013 10:43 am

Good luck Jason,
I'm a Dana Farber patient and love it there. Brigham and Women's hospital associated with The Farber also is excellent. I will pray for you to be safe and feel confident with whichever decisions you make today :)
47 yo BRAF mutant
Dx: Age 44: Nov. 2011. stage IV. >20 liver mets, +15/21 nodes pos.
Mets in peritoneum, liver, lymph, ovary
Stage 3 thyroid cancer 1999
Caringbridge-debbiewhitmore
Interview:weei Debbie Whitmore

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Re: Very tough desicion.. I'm seeking 2nd opinion .. catch 2

Postby Rheaeliza » Thu Nov 21, 2013 12:14 pm

I was mostly obstructed when the colonoscopy found my tumor. In fact, the scope/camera couldn't get through past the tumor to do a full colonoscopy because of obstruction. It was discovered, all within a week, that I had severe spread to peritoneal cavity, ovary, lymph nodes, and liver. So the concern was...surgery will delay chemo and we need to start chemo especially to adress the liver ASAP...delaying surgery will be bad because I was mostly blocked.

So they decided to place a colonic stent. The proceedure is done under general anesthesia, but is not surgical, it is done like a colonoscopy, it a long, flexible, metal mesh tube that is inserted up the bum, as a super thin tube past the tumor, and then is opened up to relieve blockage and allow waste to pass. I had mine in and started chemo the following week...stent stayed in until chemo shrunk enough of my tumors to be a surgical candidate for all of it. So from december 2012 to until August 2013.

It's not super common, but at your second opinion consider mentioning it. See what they say...it isn't for everyone either so I'm not sure if you are a candidate, but it's worth asking!!!

Best of luck,
Rhea
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13


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