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Back from the dr. NOT GOOD NEWS please help me here.....

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Jason & I just returned from his dr. appt. this morning & the news was devastating. He scheduled his colon surgery for Friday, said he would remove the right side of his colon & then when he has had time to heal a little he will start him on Chemo. THEN, the nurse came in & said the dr. wanted to speak to me, alone. (while the other nurse was setting up Jason's surgery appt. with him) The dr. showed me the CT Scan from Friday & said the tumor in/on his colon is the size of a football, the cancer has also gone into his stomach, a little in his liver, & lymph nodes. He said he isn't even sure he will be able to operate once he gets him opened up, but IF he can he said he may be able to cut out that part of his stomach, & if he is able to do that then Jason may have up to 2 years. If not, well, I don't even want to think about that. I'm losing it here, I really need some good outcome stories, please....anybody.

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

I'm so sorry your husband and you are going through this.  Can doctor do radiation first?  I started with radiation then surgery and then chemo.   Or did they say they will start with chemo first?   The was just begun his journey so there are options.   I do not agree that they held this news from your husband.   He deserves to know what is happening and the two of you can support each other.  

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I think the reason he is doing the surgery first is because the tumor is SO large it's close to blocking his colon completely. I thought the same thing about the radiation (not until after we left the office, of course) but Jason's dr. is a highly renowned colorectal cancer surgeon, so I do trust what he believes should be done first. I'm still in disbelief....it's like I'm in a bad dream. What stage were you in & had it spread?

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

At first I was Stage 3 but had recurrence with mets to multiple locations so now I am stage Iv 

 

 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Did you have surgery? and if you don't mind me asking, where are the mets? This is all so new to me, I feel like I'm drowning, I just don't know what to do. One thing I DO know to do though is PRAY!!!!

Lovekitties's picture
Lovekitties
Posts: 2937
Joined: Jan 2010

This is all a bit odd to me.  First of all, why would the doc only share this extensive info with you?  Is there some good reason to not let your husband in on how sick he is? 

I know you mentioned that you have no insurance, but that should not keep you from getting the best care possible for your husband.  I too was without insurance when diagnosed and had surgery.  You just have to be upfront about your financial situation with docs and hospial.  There are grants and financial aid available. 

Under other circumstances I would say you need a second opinion, but I am not sure you have time for that now.  Gettig Jason thru a sucessful surgery is the key now.  It may be that the tumor has moved into the abdomin and is over shadowing the stomach but not into it.  Don't let the 2 year prognosis weigh on your mind.  Many here have been given far less time at diagnosis, but with surgery and followup treatments have continued to live and thrive many many years.

Prayers for you and Jason that all will turn out better than expected with the surgery.

Marie who loves kitties

 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I honestly don't know why he only shared the information with me, but I did tell Jason what the dr. said about it being in his stomach & what he said about there being a possibility that he won't even be able to take the colon/tumor out. One thing that puzzled me is that when the dr. said it's in his stomach, I told him that just last week he had an endoscopy done & it was all clear. They even did biopsies of the stomach & surrounding areas, so I when I told him that he said "that doesn't matter" then proceeded to show me the spots of cancer in the CT Scan pictures. The dr. doing the surgery is a highly renowned colorectal cancer surgeon, he has been in practice for many, many years & I have never heard anything but good things about him. I have been thinking about contacting another Cancer Treatment Center (in Knoxville....we're in Maryville, Tn.) but I can't really do anything until he is approved for TennCare (medicaid, in the state of Tn.) I'm gonna be finding out about that today or tomorrow. This is all such a shock to me & to everyone....it's like my sister said "this kind of thing only happens to other people".....well, surprise! We are now "the other people".....=( Thank you so much for your encouraging words, I get the feeling I'm gonna be turning to you all a LOT in the near future! Take Care & God Bless, Kris

pluckey's picture
pluckey
Posts: 470
Joined: Jul 2009

Did the Dr say it was in the peritoneal area(stomach lining?)  Take a deep breath and like tohrs suggested, try and get a 2nd opinion if at ALL possible.

My tumor was very large and about to burst when I had sugery- a week after diagnosis.  I responded well to chemo and am NED after 4 years.

Please stay strong and there are lots of us here to help answer your questions.

 

((hugs))

Peg

 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

We just got back from Jason getting his pre-op blood work & stuff done. The only thing listed in his file was the colon resection surgery & a central line. So, I guess we won't know anythng for sure in regards to the stomach until the dr. is actually in there looking at it. I'll keep everyone updated on how it goes....Thank you for caring! It means so much to us. Kris

jen2012
Posts: 1198
Joined: Aug 2012

I'm sorry Kris.  I know how much this sucks.  My husband was diagnosed stage 4 in August and we got the same 2 yr prognosis.  It seems drs say that for all stage 4 patients regardless of why they are stage 4.  As you can see here many stage 4 patients are around much longer than 2 yrs.  That doesn't mean that your husband or mine will be - we can only hope and pray.   This is so hard, but I can tell you that after 4 or 5 months, I found there were finally days that I didn't cry.  The first few months and especially the first month, I cried often and felt sick to my stomach all the time.   One of the things I hate about cancer is it feels like it steals your sense of the future. Everyone says one day at a time - that has been difficult for us as planners!  We always thought and talked about the future and now we don't.   Well we still do but it feels sad.  

Others will come along and give you advice about treatments, etc. I just wanted to let you know I understand what you are going through.  Hang in there and remember to breathe!  

P.S.  I agree with Vicki - the doctor should have asked you both together how much info you wanted and not laid it on you.  That's not fair.

janie1
Posts: 753
Joined: Apr 2011

I know how hard this is and overwhelming. In 2 years time, there will be clinical trials that he could try after some surgery and chemo.
It will take a while for this to sink in, but it will get a little easier when you have more information after surgery.
Lean on your God, it WILL help you get through day by day. Do you have supportive people, too, in your community, and church?
I think I remember you said you were in TN. There is a research center (Sarah Canon), that may be a good place down the road to check out clinical trials. I think it is in Nashville. Anyway, don't worry about that now. Just want you to know there are people working on new treatments. Go with the plan, settle in, and keep learning. There will be highs and lows.
Praying for you.....adding you both to my prayer list.
xoxoxo

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I will feel a lot better if the surgery is successful, but there is that word...."IF" the surgery is successful. The dr. told me that he may open Jason up & see that there is nothing he can do. I completely believe in the power of prayer, so that's what I've been doing (a lot) is praying that the lord will place his healing hands on Jason & shrink the tumors, & rid his body of this terrible disease. It's all in his hands now....Thank you for adding us to your prayer list, it means a lot. Take care & God Bless, Kris

Trubrit's picture
Trubrit
Posts: 1440
Joined: Jan 2013

Take the IF our of your vocabulary. 

Use When and after and in the future just like you have been doing these last five years of marriage. 

We, all of us, know what the ifs could be, its not like we're hiding our heads in the sand, but we need to face this with nothing but positives. 

Face one step at a time, don't rush ahead. 

When Jason has the surgery, then you think about what they found. When they stage the cancer, then you face what comes next. Its all so overwhelming, but if you worry about what 'might' happen, your journey will be all the more harder. 

I am weeping for you and Jason. I am weeping for myself and everyone else who is fighting this battle. 

And I'd be having a word with the Doctor, who has no right to talk to you abuot the seriousness of Jasons condition and not him.  

You are both in my thoughts and prayers. 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

We just celebrated our 5 yr. anniversary in October. I'm like you, I have found myself thinking about all the plans we have for the future, that I don't want to even THINK about now, let alone talk about with him. If you don't mind me asking, had your husbands cancer spread? I'm still trying to wrap my brain around the tumor being as big as a football (yes, a football), & HOW he could not have known....I mean Jason isn't a large man, he weighs 184 now (I think) he has lost about 10 lbs. over the past few months, but how can something that large be inside you & you have no idea?.....It's just mind boggling. I just wonder how long he has had this....it must be years for it to be at this stage.

Thank you so much for your support, I get the feeling you & everyone on here are gonna be hearing from me quite a bit from now on....I feel so blessed to have found this site!

jen2012
Posts: 1198
Joined: Aug 2012

Yes, his spread to distant lymph nodes (para-aortic)  which makes him stage 4.   It does seem odd and scary that so many get to stage 4 without even knowing anything was wrong. 

Lovekitties's picture
Lovekitties
Posts: 2937
Joined: Jan 2010

Dear Kris,

I just read your early AM post about Jason.  Did you or he let the surgeon know about the vomiting?  If so, did he tell you what to do in case it occurs again?

Based on the size of the tumor, I hope he told you that an immediate trip to the ER would be appropriate.  As others posted on that other thread, those symptoms can indicate a total blockage...either due to position or growth of the tumor. 

I just hate it that the doctor left it to you to tell Jason about the CT results and prognosis.  It left you with a terrible burden, which you seem to have handled well.

Praying that the surgeons hands be guided for best outcome with the surgery.

Marie who loves kitties

Trubrit's picture
Trubrit
Posts: 1440
Joined: Jan 2013

Did you see the cancer on the CT scan? Did it look the size of a football?

A football is rather large, and you'd think his stomach would be somewhat distended. Remember, the Dr's make mistakes. I'd be taking the 'football' diagnosis with a pich of salt.  Look forward to that surgery, then you will know 'for sure' what size, what damage, if any, has been done.  Then, as I said in a previous post, face the next step. 

One step at a time, and DO NOT give up hope. 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I did see the cancer on the CT Scan, or I should say I "saw" what the dr. was pointing to. Did I understand what I was seeing? Not at all. I am just leaving Jason in Gods hands, there's no better hands to be in! And I also truly believe that God will be in the operating room, guiding the surgeons hands....I will NEVER give up hope, never. I know that anything is possible through God....Thanks for being here for us....Take Care & God Bless, Kris

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

WOW!  This guy may be a great surgeon, but it sounds like his bedside manner STINKS!!!

I would question all of it...and, as others have said, there are options to help with the costs....

 

That all said, if you read my page....I was told that my cancer was 'everywhere' in my abdomen and that, at best, I had 6 months to live.  I should "get my affairs in order...yada yada yada...."....

Oh, that piece of news was delivered the day after Thanksgiving, 2004....(8 years)  

At 6 months, I was over all treatment for the rectal cancer, and on to the breast cancer that was found during a PET scan for the rectal cancer....Now, I just was 'graduated' to yearly visits to my oncologist...and only because she likes to see her successes....

 

Everyone is different....statistics are guidelines....I'm not saying it is not serious, but you have just started your journey...and there are many folks, both here and elsewhere, who are living with stage IV colon cancer...(I know some...I still mentor many)...

 

The most important thing is to be comfortable with your husband's treatment team.  I must admit, there were some things that at first the doctor was hesitant to tell me...but I squared that away...I worked in a hospital, my beau is a doctor...I had heard it all...so I wanted to hear it all...

BIG hugs, Kathi

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

My beau and I are visiting the Western (wailing) Wall of the old synagogue in Israel at the end of the month.  If it is ok....I will post Jason's (and yours)

name there...a friend of mine did that for me, the December after I was dx'ed....I always thought it was part of my help....*grin*....let me know if it's ok!

 

Hugs, Kathi

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

It is absolutely ok for you to do that! The only thing that would make it better is if you snap a picture of it for us! =) And thank you so much for sharing your story! It's that kind of stories that are keeping me going right now. I talked to my son Brandon on the phone a little while ago & he was telling me about a friend of his girlfriends family who had Stage 4 Prostate Cancer that had spread to his lymph nodes & even into his bone marrow....that was almost 5 years ago! The man is going to run a marathon this upcoming weekend....one of many I was told. I know it's all in Gods hands right now, so all we can do is continue to pray & wait....Thanks again for being here, it means so much to me. Take care & God Bless, Kris (by the way, my husbands name is Jason Roach....don't know if I put that in one of the other posts or not)

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

Kris, I am so sorry that you didn't get better news. I just want to say that you have to take things a "hurdle" at a time, this is a big fight. There were days that I couldn't even take things a day at a time and had to go hour by hour. Your despriptions of feeling like you are in a bad dream or drowning is exactly the way I felt.

There were a lot of things that had to happen for Dennis to get to NED... it was hurdle after hurdle and prayed for GOD to get us to where we needed to be. It seemed like so much and honestly impossible but it happened for us; I pray it happens for you and Jason.

We are here to listen, answer any questions we can and pray. It's hard for me to pray when I am really scared so don't be afraid to ask others to pray for you if you feel numb or frozen.

GOD bless you and Jason

Brenda

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Thank you for the kind words. Please do keep Jason in your prayers. Take Care & God Bless, Kris

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

I have been praying for you both tonight...may you feel lifted up in prayer.

Brenda Bricco's picture
Brenda Bricco
Posts: 551
Joined: Aug 2011

:)

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

I planned on a generic "CSN warriors"...but, anyone who wants, I will add their name...

 

Kris, consider Jason's (and your) name on it!!! (And I WILL snap a pic, if I am allowed...*grin*...there is a side for men, and a side for women...)

 

(We don't go until the 22 February)

 

Hugs, Kathi

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Kathi, could you add me to the list...Judith Waugh? Thank you!!!

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

Hugs, Kathi

PatchAdams
Posts: 272
Joined: Nov 2011

A dear friend of mine went for an MRI prior to having her gall bladder removed and they found pancreatic cancer that had spread to her stomach and spleen plus many lymph nodes.  She had the Whipple procedure to remove the diseased parts and was given 5 months to live..... four years ago. She did have Stage I breast cancer found by a PET scan two years later, but her other cancer has not returned.   My friend is a believer in prayer (as am I), too! 

 

 

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

My husband was diagnosed 6/11, stage iv, with numerous mets to the liver, now also in the lungs.  Pat was in a great deal of pain from the tumor pushing on his colon.  His surgeon wanted Pat to do radiation and chemo before surgery to shrink the tumor.  So, he put a stent in to help keep the tumor from pushing on his colon.  The relief was immediate.  Radiation everyday (except weekends) for 6 weeks.  Also chemo till 12/11.  On 1/30/12, he had his LAR surgery/colostomy and the stent was removed at that time.  Pat is still going for chemo treatments every other week.  He has also returned to work and takes each day as it comes.  One thing about his oncologist...he never gave Pat a time frame, which we are thankful for.  I know each person is different but there are some people on here that went years over that given time frame.

Take care,

Ellen

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

I am so sorry you and your husband are facing this, but at least you're facing it together. 

In regard to this post and your surgeon, the best thing I can say is SECOND OPINION, SECOND OPINION, for a couple of reasons. 

In my opinion, your surgeon's choice to speak to you while keeping your husband in the dark is unethical, at the very least.  In addition, by sharing your husband's private medical information with you while keeping your husband ignorant of the discussion may may have been a violation of the law. 

Regardless of medical ethics or legal standards, your surgeon violated your husband's trust which to me would call into question his qualifcations to operate, on me at least. 

Something you should be aware of in regard to the "averages."  At least one website that posted averages added a "disclaimer of sorts," stating that the survival statistics for many types of cancers were compiled some time ago, making them a bit dated.  In addition, the website editors wrote that patients should keep in mind that five-year survival statistics take at least five years to compile, meaning by the time the statistics are published at least five years have passed. 

To put the "datedness" of cancer survival statistics in perspective, as I understand it for colon cancer, in 2000, there were at most one or two drugs used to treat the disease.  Today 12 years later there are at least a dozen with two just approved in 2012.  Therefore, given the efficacy of these drugs, which admittedly isn't perfect, and other treatments used today, if a five-year survival study ended in 2012, I'm sure you can see how those statistics would result in worse survival rates than are actually occurring.  Please understand these are conclusions I have reached after reading about survival statistics and studying how statistis in general are compiled.  In addition, your husband is an individual and statistics are compiled using thousands and indicate general trends and are therefore largely not applicable to any one individual. 

Lastly, please check your previous post as I replied with some information regarding SSDI that you might find helpful.  Furthermore, I strongly urge you to look into the insurance exchanges that are a part of the Affordable Care Act (Obamacare) wihile pursuing your Medicaid coverage as well. 

Again, I am sorry you're facing this horrible disease, but remember you're facing it together. 

Fair winds and following seas to you and your husband and remember the people on this board are here to support you.

 Rick

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i had similar extensive mets, removab preop has benefits i think, but i would let a doctor comment, its a good question.

removab is experimental and expensive but it worked on me.

your hubby has not had chemo, a huge plus in immunotherapy based strategies from what i have learned.

who am i, just a stage 4 cancer free almost with no systemic chemo.

12 weeks, 120K and you will know, conventional is always a valid option. the timing is your choice.

if experimental fails, then chemo, radio surgery are valid therapies.

 an opinion from hallwang would be interesting !!

maybe before surgery, see my blog for contact details of clinic.

so sorry for your news, meditation now more than ever.

hugs,

pete

ps petertrayhurn.blogspot.com.au

pps i will remember you in my prayers, godbless! smile it will help your hubby. stay focused and dont panic. breathe, deep and slow.

youl find the best path i pray.

John23
Posts: 1832
Joined: Jan 2007

Re:

“Jason's dr. is a highly renowned colorectal cancer surgeon, so I do trust what he believes should be done first.”

 

My first surgeon (2006) was said to be the best of the best. My second surgeon (2011) was chief of staff, taught laparoscopic surgery, was well respected for his knowledge, etc etc. My last surgery (2012)was due to all the mistakes made in both my 2006 and 2011 surgeries.

 

Get other opinions from colorectal surgeons that are not of the same group or organization. It is very important that you do so!!

 

Losing parts of the digestive tract complicates all of life; you do not want to put life in one person’s hands with the assumption that only that one individual knows best.

 

Get other opinions ASAP!

 

Hoping better health comes soon!

 

John

 

 

 

Dyanclark's picture
Dyanclark
Posts: 254
Joined: Apr 2012

For now just think positive.  People can do without colon and I know two cases where Dr. gave someone a new stomach.   

My husband & I have only been married 5 1/2 years and second year of our marriage we found out he had colon cancer.  

annalexandria's picture
annalexandria
Posts: 2230
Joined: Oct 2011

to all of the the other good advice you've been given...once the doctor gets in there and can take a look, it may not be as bad he thinks.  I've had five surgeries, and on the 3rd go-round, I was told that it was going to be strictly palliative in nature.   My surgeon said there was too much cancer, and all he could do was deal with the one tumor that was bleeding, close me back up, and hope chemo would work.  But once surgery was actually underway, he found that the scan had been misleading, and there was less cancer than he thought.  He was able to get it all.  That was almost 2 1/2 years ago and I'm still around (in fact, NED at the moment).   So don't lose hope yet...scans can be difficult to interpret (even for seasoned docs), and things may turn out better than you think.  And there are quite a few of us on this forum who are proving the whole 2 year thing wrong as well.  Stay strong and tell your husband we're rooting for him~Ann Alexandria

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Like Trubrit has said, take it one day at a time. I had Stage IV colon cancer with mets to my liver. I got the 2 year speech, that was in Dec.2004, today I'm in remission.  If I were Jason, I'd get a second opinion, I understand Vanderbilt has a great hospital, I'm certain they have a CRC surgeon that can do the job. Given your husband's circumstances I'm sure Vandy would make an acception and get you in quickly to see a qualified surgeon. Scans and files are easy to transfer, doctors and hospitals do it all the time.   The Mayo Clinic reviewed my case 5 days after my local doctor gave me the news. When I was first diagnosed, I thought I had to have everything done right away. After talking to a doctor friend he told me to take my time (a week or two) and find the right surgeon and hospital, and that's exactly what I did, again that was 8 years ago. Best advice I have ever got.  I know it's hard, but take a deep breath, you have some time, do your homework and make a good decision. 

Prayers to you and Jason...

Buster...

renw's picture
renw
Posts: 282
Joined: Jan 2013

If the tumour is obstructing the colon, and it is chronic, there is little option other than surgery. If there is no immediate danger, other therapies may be more appropriate first. I am in a similar boat with a large primary tumour. I have been given 2 months, but 4 months later still here and fitter than I have ever been and the primary has shrunk a little. A lot depends on the size of mets as well, often they are more dangerous than the primary tumour itself. Second opinion is a must. in fact I had 8 second opinions now. :) You may be surprised about the various opinions you end up with. I was, and this enabled me to make a more informed decision about my treatment.

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

Cimetidine, PSK, Celebrex before and after surgery and chemo are things you should check out the stories on.  Each one might be worth a year,  two or three if surgery can get enough.

annalexandria's picture
annalexandria
Posts: 2230
Joined: Oct 2011

forgot to mention that I took that for a week before and a week after my last surgery, which may (or may not-but it can't hurt) have contributed to my being NED this last year.  AA

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Hi! As I said before, I'm new to all of this. I do know what Tagamet is, but am confused as to how that could have contributed to you being NED the past year? I'm definitely curious!....Thanks for your help! Kris

annalexandria's picture
annalexandria
Posts: 2230
Joined: Oct 2011

some studies have shown that cimetidine (brand name Tagamet) helps reduce the chance of spread during colorectal surgery.  A common problem with surgery is that it can "seed" cancer cells in other parts of the body.  Something about the cimetidine (which is an OTC drug for excess acid) seems to stop this from happening.  I didn't use if for my first four surgeries, then did use it for my fifth (one week before and one week after).  My surgeon had never heard of it, but felt it couldn't hurt.  There's no way to be sure if it helped, but I haven't had any further tumor growth since that last surgery (Dec. 2011), and I have a very aggresive, fast-growing tumor type, so to go for a year without anything showing up is kind of a big deal.  I'm way too superstitious to use the word "cure" for myself, but both the surgeons I had this last time were willing to say that I may have gotten that lucky.  We'll see how thngs are going in another year or so.  Anyway, I think it's worth adding to any surgery, just in case.

Here's a link to an abstract of one of the studies...http://www.ncbi.nlm.nih.gov/pubmed/10919677

"Cimetidine inhibits cancer cell adhesion to endothelial cells and prevents metastasis by blocking E-selectin expression."

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Jason's surgery is Friday....wonder if 2 days before would do any good?! If so, I'm out the door to get some Tagamet!!!! Actually, I'm out the door anyway, I won't even wait to get a reply. lol Thanks SO much!!!! Kris

annalexandria's picture
annalexandria
Posts: 2230
Joined: Oct 2011

the dosage in the studies (which I took) was 400 mg 2x per day.  I think doing it starting now and then for a week after surgery may be just as effective.  I've seen different things in different studies.

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I got the Tagamet....I sent you a pm....=)

Helen321's picture
Helen321
Posts: 767
Joined: May 2012

Wish I had read this comment about tagamet last week!  I'm already a week out of surgery.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I am 46 and had a similar diagnosis in June of this year.  My colon tumor was not as big as your husband's tumor, but it had almost completely blocked my colon.  They attempted to remove it by surgery, but the colorectal surgeon said he could not remove it due to the fact that it had spread outside the colon and was too close to other vital things like my spine, blood vessels, bladder, etc...  My surgery was done in Kalamazoo, MI at the local hospital, so I have wondered if a larger cancer center that specialized in cases like mine could have done more with that initial surgery.  As it is, they looked around, biopsied some tumors from my peritoneal cavity (that were colon cancer as well), performed a colostomy, and sewed me back together.  I have been told my that surgeon and at least 2 oncologists that I am not a candidate for surgery due to my widespread metastases (liver, lungs, lymph nodes, peritonal cavity), so I have been doing systemic chemo since July (first was FOLFOX + Avastin, now I am on just 5FU + Avastin).  My disease has been stable/slightly improving since starting chemo, but I also have a pretty short window w/out some other kind of therapy, which is why I am considering following Pete's journey and possibly going to Hallwang in Germany later this year. 

Now, the good news.  On a day to day basis, I feel perfectly normal 99% of the time.  I have handled the chemo well, and it barely interferes with my life, except for 1/2 day every 2 weeks.  The colostomy is not that bad to deal with either.  I am lucky that I have a loving wife, 6 kids and 2 dogs that take very good care of me.  I have come to accept that I will likely not be here as long as I had planned, so I am trying to enjoy my time as much as possible.  I am in no way giving up, but I have changed my outlook on day to day life, and have also started planning for what happens when I am gone.  Once you get over the initial shock, you will have to accept what has happened and then make a decision how to move forward.  You can't go back and change the past, so you have to learn to deal with your new reality.  It sounds like you have a strong faith, so that may help you going forward.  Very sorry to hear about your husband's diagnosis, and wish both of you all the best.  I second the recommendations to get a second or third opinion PRIOR to the surgery, as this surgery could really impact your husband's treatment success.

Tedd

hippiechicks's picture
hippiechicks
Posts: 318
Joined: Sep 2012

Hi Kris,

I know how scary this is right now...I too was diagnosed with surgery as my first and only option.  I was completely blocked so did not even know what was happening as I was still dopy from the colonoscopy when the emergent surgery took place.  If Jason was not taken to immediate surgery to save his life, then there is absolutely time for a second opinion.  I agree with all the others here that a second or third even is really priority right now for you.  You will be surprised how quickly they can get Jason in be seen as they are all aware of the ergency in these situations.

I will tell you this, I have had 5 opinions thus far.  My first and my last were the same and the most hopeful and made the most logical sense.  Guess which path I am going with. 

Have you ever had a conversation play over and over in your head? After one of my opinions this happend to me. It was an opinion I could not wait to hear as it was from one of the top 5 cancer centers in the country. I was putting my life in their hands and certainly they would know how important that was. We sat intently listening to the doctor's every words, listening to statistics and outcomes and what to expect. Wanting to hear every bit of information and use it all wisely.  My news from this doctor was grim, very grim.  My husband and I in shock, me in tears, and trying to figure how we would tell our children. How were we going to explain that I was not going to be around for graduations, weddings, grandchildren and possibly next Christmas?

Well, I have realized when something keeps popping in your head and making you feel uneasy ... it is because it is not correct information and you are having trouble processing it because something is off.  Well, my something came to me after a few days of replaying what this doctor said...of the hour and a half consultation he had said 6 very important, words that we had both overlooked at first ... "I DID NOT READ YOUR FILE"  Although it had been in his hands for a week ... he had not read it.  So, sometimes even the "best of the best" are not the correct option for you and your situation. This doctor was not necessarily incorrect in his view, he was however lumping my stage IV statistics as just that...a statistic.  But, we are all individuals and may have other options, one that may make more logical sense for us.    

My angels were telling me this information was incorrect for me ... I am sure.

I also had 2 CT scans read incorrectly.  My second opinion at that time was not  soon enough to save my colon, but DID save my life.  I do not wait any longer or put all my trust in one facility. I too stress what John posts, it is important for you to go outside the group you received the first opinion from. Very important.

I totally agree with the previous posts regarding this surgeon not talking to Jason directly.  I have never heard of such a thing, ever, even my children are spoken to by the doctors as individuals. In fact they will not even speak to me now about my adult children nor the nurses. This is very very questionable behavior for a "best of the best" surgeon. And he showed you his CT scan alone? IDK...something does not seem right there. It almost sounds a bit like a scene from a drama.

I am keeping you both in my prayers and hoping you find your correct path.

 

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

When I went to hospital because I was having trouble breathing (blood clots in lungs)  they started to look for  why??   Scans showed the mass in my abdomen,  they thought it was ovaries ....my colon was completely blocked....they did a colonoscopy and took a sample,  that came back precancerous.    So, they went back to their Ovarian mass theory.   I had to stay in hospital for a month before a surgeon would operate on me, waiting for the blood clots to settle.  for the entire month I was completely blocked  had a N.G. tube sucking stuff out of my stomach,  and on T.P.N. for nutrition.  When they finally went and did the surgery they were surprised to find it was colon cancer,  tumor the size of a fist with spread to ovaries etc.   My onc. gave me the same 2 years maybe prognosis.   I had two surgeons, one for colon and other gyno..   I've been doing chemo. on and off to keep things at bay.  I was diagnosed in 2010.     The surgeon isn't really going to know what is going on in there till he physically does the surgery.    They were able to put my colon back together during the surgery, so I didn't need the bag I was anticipating I would need.   

bailee2012
Posts: 61
Joined: Jul 2012

I just wanted to say God Bless you and your husband during this tough journey.  You should find the strength you need wherever you wish.  If someone doesn't like what you have to say then I say that they don't have to read any of your posts.  Especially if it is a feed that you started, not going onto their feeds and saying things that they don't wanna hear.  We are all in the same boat here and we should do nothing but support each other, not nitpick like children. 

annalexandria's picture
annalexandria
Posts: 2230
Joined: Oct 2011

but rather to the poster (with only 2 posts) who jumped in with stories of miraculaous healing and a quick plug for a book that costs "only $5".  Smart not to put in a link, make yourself look like an obvious scammer.  Plus when you sign up for this board you do agree to the TOS, which includes no proselytizing for any religion.  Gizzyluv was not doing this, the other post was, imo.  AA

PS I would like to add that there is a lovely forum right here at CSN for spirituality and prayer.  You can post whatever you like that is religious in nature there.  To come here and speak in a disparaging fashion of many things that have allowed the rest of us to live (like DOCTORS, for goodness sake) is pretty obnoxious, no matter how well-intentioned the poster may be.  And to be told to just not read the thread?  No...the answer is for that poster to take the conversation to the other forum or send Gizzyluv a PM.  Of course, PMs don't allow you to try to sell copies of a book.

Chelsea71
Posts: 1170
Joined: Sep 2012

I should have been more clear.  My heart goes out to gizzyluv.  Feel terrible about what she and Jason are dealing with.  My last post was directed at Jan1122.  I found her post to be quite offensive.  My understanding regarding the CSN rules and regulations is that they would prefer we avoid the topic of religion as to not offend others.  I realize now that my response to Jan1122 may have offended some (possibly many).  If that is the case, I apologize.  I think we should all feel comfortable enough to read all posts.  We shouldn't be bomborded by people using this forum to preach their religious beliefs.  I don't think it is the intention of this web site.

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