CANCER How did it happen so fast?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/7/2009 1:13 PM (GMT -6)   
This is the name of my original post last week. As things happen during this long journey, I need your support.
 
However, just adding to the original post does not seem to be the way to go but when I post I want everybody to know it is me again. I plan to post all through this journey because you are the only support I have next to my son.
 
So I just used my original title. If this is not the way to do it, please let me know.
 
What I wanted to tell everybody is this.
 
1. The cancer will be staged Thursday in the endoscopy room using an endoscopic rectal ultrasound. I talked them into full anesthesia for it! Yay.
 
2. I had to wait about two months to get into Vanderbilt. during that time I requested all my medical records. I found out hardly any of them arrived. So yesterday, I had to go all over Huntsville Hospital and round them up in person. Remember, I am so weak and short of breath I can hardly take a shower. I had to keep stopping to rest and gasp for air.
 
3. At the Medical records they gave me about 400 sheets of paper from all the times I had gone in trying to make them pay attention to me.
 
4. Anyone who read my original post last week knows that a GI came in my room, was backing out the door the whole time and finally said in a louder tone that he had to GO and left. As I read his dictation in medical records, it kept using the word "questionably" The word was used in whether I even had UC or not! I've had it 33 years. It was questionable if I had it as bad as I said. I did not appear very sick (I HAD CANCER) It actually said (hold onto your seat! ) was questionable if I had been on prednisone! Who can miss that?!!!!! It went on. I got upset. The Medical records lady read it and was so appalled by the attitude she called a patient laison. This was a wonderful lady. I only wish I had had her when I was in the hospital there. She asked if she could copy it. I said yes. She said Huntsville Hospital messed up and she was taking this to the Chief of Staff.
 
5. Vanderbilt is a long way away. If I get something bad, like unbearable pain, I will have to use the local hospital at times. This group of doctors are the only ones I can see here. I hope they aren't made mad. 
 
6. There were about 400 pages and they cost a dollar  each. The laison gave them to me for free.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
No meds. 
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/7/2009 1:31 PM (GMT -6)   
Wow UC since '76, I'm so glad that you had someone finally listen to you! I think now that you've found someone to help bring the matter to light, things might change around that hospital. I wouldn't be worried about the docs being mad at you, I think they should be ashamed and step up to do their job. Hopefully this will create changes in the healthcare practices at this hospital. Good for you!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/7/2009 4:45 PM (GMT -6)   
That doc is a butthole, but then I've had docs and nurses like that too (one triage nurse in an ER tried to tell me I had Munchausen's). I'm glad the liason was so nice, though.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/7/2009 5:08 PM (GMT -6)   
You've had UC for 33 years, doesn't sound like cancer happened too fast to me. After 10 years the cancer odds are dramatically increased and you probably should of been getting colonoscopies every 6 months or something like that. Hope all goes well and it gets resolved.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/7/2009 5:15 PM (GMT -6)   
Qazwsx12, I believe her initial post did say she'd been getting her colonoscopies regularly.

UC since '76, I wish you well. My mother had colon cancer, and I know how frightening it is. I'll be praying for a positive result from the staging, and for quick, effective treatment for you.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 7/7/2009 5:22 PM (GMT -6)   
I hope all goes well for you, that doctor sounds like such a jerk.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 7/7/2009 9:26 PM (GMT -6)   
I hope it goes well for you as well. The "C" word is very terrifying for all of us, I pray that you get treated and for a speedy recovery.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Lialda 3.6/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....    40mg/day and tapering again!!
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/7/2009 10:26 PM (GMT -6)   
Finding the right docs is at least 50% of the battle...wishing you much improved health very soon
Dx'd with moderate Pancolits 05/07 better with Pentasa and Cortifoam.
I also take Probiotics, Curcumin, Benefiber and cannot tolerate
artificial sweetners (never could even before UC).
 
 
UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 7/8/2009 12:01 AM (GMT -6)   
Oh my gosh!!! I am so sorry to hear that! I always wonder what my med recs say.

I always feel like because it is so "invisible" others don't really get the extent of what we deal with. And a lot of us live with this disease so we often down play the stuff that is not so bad although others would be out of work for a week... And I'm sure we've all had the person who says, "I think I have that too!" when they really just have a bad case of gas... I hate that!

I'm glad you used the same title because I wanted to know the update and I can never remember the person's name who posts.

Good luck and stay as strong as you can. Don't forget to give in once in a while... you need the break! All my good thoughts are going to you!!!!
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/8/2009 6:59 AM (GMT -6)   
qazw5x12
 
I agree with you.
 
But the doctors said every two years was enough and I was getting scoped every two two years. My last scope was 15 months ago in March '08. It showed complete remission. It is not even time for my regularly scheduled scope. It is due March 2010. I would not have even been scoped last week had I not been having symptoms since March.
 
So this cancer came up during the last 15 months. I have read that cancers take a long time to grow, but mine didn't.
 
Probably for most people, two years would be enough. Mine must have started the very next month after my 2008 scope. I always heard colorectal cancer was slow growing but faster in UC. I did not think it was this fast, though.
 
I wonder if my cancer  has some unusually fast growth characteristic. That would be just my luck. I have been very unlucky my whole
life.  But if cancer does grow this fast in long standing UC, then the GI's need to have us have scopes more often. Like 6 mos. That is why I agree with qaz5x12.
 
BTW. Only on this forum could you say this, but this AM I had a perfectly formed stool with no blood!
 
Tomorrow I get the horrible probe put inside me and moved all around to stage the cancer. So it is a prep day. No food all day and I am ravenous. One bottle of citro and two enemas. I am scared to do enemas. I am afraid I will poke the tumor and start bleeding.
 
Thank all of you for talking to me this AM. I woke up very scared.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
June 29, 2009 after being given the brushoff for months locally, I went to Vanderbilt, two hours away...
 
Rectal Cancer!
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/8/2009 8:06 AM (GMT -6)   
UC, we also live about two hours from Vandy. My husband went there for his angioplasty last spring. The staff is very nice and will take great care of you. I'll be thinking of you.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 7/8/2009 10:16 PM (GMT -6)   
So sorry to read that this vile experience happened to you! May your treatment at Vanderbilt be a complete success that restores your health ASAP. As for the time span in which cancer develops-- no one can say for sure. Try not to agonize over that because it will just sap whatever strength you have left now. My gastro, who subspecializes in IBD treatment, told me about a 31 yr-old male who seemed to be in remission & was otherwise very healthy but had a visible flat-lesion malignancy at his annual colonoscopy. This was extremely upsetting to the doctor because he had been a patient since age 8! It just goes to show that even with the best available medical care over time, cancer can still rear its ugly head-- that's what it can & does do. / Old Hat (30 yrs with left-sided UC ... [etc.])
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, June 22, 2018 3:41 AM (GMT -6)
There are a total of 2,974,375 posts in 326,171 threads.
View Active Threads


Who's Online
This forum has 161248 registered members. Please welcome our newest member, Raji Morgan.
259 Guest(s), 0 Registered Member(s) are currently online.  Details