I'm in angry mode, is there help for me?

Please feel free to read, share your thoughts, your stories and connect with others!
Peranadar
Posts: 5
Joined: Mon Jan 30, 2017 6:46 pm

I'm in angry mode, is there help for me?

Postby Peranadar » Tue Jan 31, 2017 7:25 am

Hi,
I had a normal colonoscopy in 2011 and returned for another one in 2012. Doctor said everything was fine.
Sometime in 2014 I started complaining about stomach pains, I had blood work after blood work done and spent hundreds of dollars on some stomach virus medication which I completed. I returned for a follow up blood test and my doctor wrote some virus name on a paper and told me to go home and Google it....?
I completely lost it on him and had my records immediately sent to a new doctor.
I don't think "Google it" is any kind of proper doctors advice.
I was still complaining about stomach so the new doctor sent me for the other scope down my throat in May 2016 and said I didn't need a colonoscopy as I had done 2 already....stomach scope came back fine.
I began passing out from internal bleeding in October of 2016. Doctor reviews my 2012 colonoscopy report:
"Bowel prep on right side was poor making evaluation difficult, lesions could have been missed....scope withdrawn....procedure terminated."
Just diagnosed at stage III with a tumor in the right side.
I'm so angry that neither the surgeon or doctor felt it was important to tell me this 5 years ago. I'm being rushed into surgery in a few weeks and I'm still confused as hell.
I would appreciate any words or advice to help me not go postal on these poor excuses for doctors.....:(
Thanks for reading.

User avatar
CRguy
Posts: 9084
Joined: Sun Feb 10, 2008 6:00 pm

Re: I'm in angry mode, is there help for me?

Postby CRguy » Tue Jan 31, 2017 1:05 pm

Welcome to the forum and glad you have a more competent doctor now and are getting the proper care.

Peranadar wrote:I would appreciate any words or advice to help me not go postal on these poor excuses for doctors.....:(
Thanks for reading.

Not sure I could help you to not go postal.
Given what you have told us I would likely find a lawyer and get medieval on them :twisted:
Sorry you are going through this now.
Take care of immediate things, BUTT you may wish to follow up on issues from your prior doctors.

JMO

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Leeloo
Posts: 48
Joined: Sat Oct 04, 2014 5:02 pm
Location: Glasgow, Scotland, UK

Re: I'm in angry mode, is there help for me?

Postby Leeloo » Tue Jan 31, 2017 8:21 pm

Hi Peranadar,
Us folk with the right sided tumours have a hard time being diagnosed, typically right sided tumours get found later than left sided.

I had ultrasound, with the same type of report, not able to evaluate fully, so was sent for another, then had an op where they found cancer. I was never offered colonoscopy. The 'what if' game is not fun. My oncologist explained how these tumours change and grow over time, it may have been missed, it may have been too small to see, it may have been a good idea to get a colonoscopy etc, etc, what if... It is not an easy thing to prove it could have been found earlier.

So I'm with CRguy on this, right now focus on the 'what's best now question'. How to eat well and exercise before your op, finding out if they do an enhanced recovery programme where you are, finding out which chemo is recommended, and get referred to the best hospital, and doctors you can. You need to be able to trust the ones looking after you in this next phase, so I hope you have found a doctor you trust now. It sounds as though you have.

Best Wishes,
Leeloo
(R) hemicolectomy 13/08/13
Stage IIB T4N0(0/6)M0
Xelox x 4 (Scot trial)
NED

User avatar
Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: I'm in angry mode, is there help for me?

Postby Marylandmaniac » Wed Feb 01, 2017 9:07 am

Wow that is inexcusable from these doctors. SO glad you found a good one. Make sure you have a good colorectal surgeon. I originally went to a general surgeon and had a terrible experience. I think because I asked him how many colorectal surgeries he did in a month I somehow offended him. His whole demeanor changed and told me that I should go to Hopkins because my tumor was so advanced. Huh?? He knew this from looking at me sitting on a table with clothes on? He hadn't even examined me or really looked through my chart. He said he wanted a better quality of life and didn't want to deal with these types of cancers anymore. HUH!!!??? That might have been good info to tell me when I first called. Needless to say my husband and I high tailed it out of there. I got one of the best colorectal surgeons in the DC area and have been very happy. The first time I met her she hugged me and said we would get through this. LOVE HER!

Try to get as healthy as possible before your surgery and after make sure you walk. You won't want to but it really will help you heal.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

kandj
Posts: 186
Joined: Sun Sep 27, 2015 11:29 am

Re: I'm in angry mode, is there help for me?

Postby kandj » Wed Feb 01, 2017 4:54 pm

Well, on the positive side, at least the new doc caught it at stage 3. Thank your lucky stars for that.

When you are done with treamtment several months down the road, I would consult with a medical malpractice attorney. Focus on getting better and to NEDville first, but your anger is not misplaced. I was so angry when my DH was diagnosed. Angry enough for both of us to be honest. And I didn't really have anyone to be angry with. No one missed anything with him, there were no signs or symptoms he ignored. It literally showed up as pain on a Tuesday (his liver, thought he had pulled a muscle in his side) and was diagnosed on a Thursday. So I directed my anger at God. And he let me. I remember going into confession a few months later and telling the priest how angry I was with God. How could he let this happen. But, God was just a place for me to put my feelings. In the end he saved me too. Gave me a place to vent, to beg, to plead, and finally just to listen. I know that isn't for everyone, but it worked for me.

I am glad you have found a doctor that is helping you now. And definitely make sure your surgeon is a colorectal surgeon (not a general surgeon, had to deal with one of those too!) For DH, having an incredible colorectal surgeon is the only reason he is colostomy free.
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
50% reduction in most lesions after 2 FUDR treatment. An Additional 30% reduction after one more FUDR
Liver resection/ablation done 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)

razorbackgirl
Posts: 2
Joined: Thu Feb 02, 2017 3:08 pm

Re: I'm in angry mode, is there help for me?

Postby razorbackgirl » Thu Feb 02, 2017 3:58 pm

You need to get 2 things in my opinion: A good malpractice lawyer and a colorectal surgeon (not a general surgeon).
DX 08/01/09
CC IIIA, 5/20 lymph
sigmoid tumor resection
18" of colon removed
colostomy (rev. after 6 months)
total hysterectomy 04/10 (benign tumor)
Xeloda & Oxaliplatin (6 months)

User avatar
peanut_8
Posts: 2077
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: I'm in angry mode, is there help for me?

Postby peanut_8 » Thu Feb 02, 2017 5:54 pm

Hi Peranadar,

Sorry to hear about your diagnosis.

One thing you should keep in mind in case you want to pursue the medical malpractice angle, is that there's a statue of limitations, which varies from state to state.

Here's an excerpt on the state where I reside...

Like all personal injury cases, medical malpractice lawsuits are governed by a statute of limitations. The statute of limitations puts a time limit on how long a patient can wait and still be able to file a lawsuit.

Under Texas medical malpractice law, a patient who has been injured during the course of treatment must file suit within two years after the malpractice incident occurred. However, if the patient cannot determine when the incident that caused injury occurred, the limit is set to two years after the completion of treatment or hospitalization.

Because of the strict time limits on Texas malpractice cases, it is important that you start your medical malpractice lawsuit as soon as possible. That is why it is critical to consult with a Texas medical malpractice attorney as soon as possible after an injury occurs, so you will not be barred from bringing suit against your medical provider.

http://www.attorneys.com/medical-malpra ... ice-basics


A quick question for you. After your initial colonoscopy, did they find something suspicious that required you to return the following year? That could be valuable to you case also.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Chrisf
Posts: 2
Joined: Sat Feb 04, 2017 2:29 pm

Re: I'm in angry mode, is there help for me?

Postby Chrisf » Sat Feb 04, 2017 4:11 pm

Hello,

I had exactly the same situation as you. I was on regular colonoscopies for colitis but my doc cancelled them as he thought I was low risk. 2 years later after bad bleeding I had another colonoscopy which discovered my colon had collapsed. I knew this was bad news for me. I was diagnosed with late stage 2 cancer ( which ironically has a worse prognosis than early stage 3 crc)

However, doctors sign up to save lives rather than destroy them, so don't waste energy sueing. There are reasons why some diagnoses are missed, right sided crc is harder to detect and some early stage tumors are flat. That is why not all colonoscopies see them, that is why I was missed 2 years earlier from my final 5cm tumour. What I can say is that putting effort into finding a top surgeon going forward will restore your faith. Here are my highlights of advice given to me.

1) go for laparoscopic surgery. I have no scars and was home in 5 days after having my colon removed
2) go for wide margins and as many lymph nodes out as possible. I had 81 nodes removed and all my imentum. This reduces the chance of false staging and recurrence.
3) do not use a general surgeon but a colorectal surgeon - top in his field.
4) take low dose aspirin - reduces crc recurrence by 50% (and costs nothing)
5) up your exercise big time - reduces crc recurrence by 50% (and costs nothing)
6) stop eating red and processed meat - may reduce recurrence by 17%
7) positive thinking helps fight cancer so do not do the opposite and drain your emotions fighting the people that will ultimately save you.

Points 4 to 6 also made me feel like I could affect things in a positive way and was a way to fight back.

Hope this helps
Aug 2013 Stage 2b crc T4N0M0V0
Colon removal - ileostomy
Nov 2016 ct clear

Peranadar
Posts: 5
Joined: Mon Jan 30, 2017 6:46 pm

Re: I'm in angry mode, is there help for me?

Postby Peranadar » Sun Mar 19, 2017 10:31 pm

Thank you all for the replies
I'm sorry it's taken time to respond.
I decided to go to Florida and calm myself down prior to starting all this. I requested a month to focus on mental health/and dealing with my affairs just in case rather than any revenge plots. Lol
I'm sorry I don't know all the proper medical terms but I will give an update from what info I have.

Had the surgery , very large tumor 6cm in 18 inches large intestine removed along with 27 nodes. Felt like hell obviously but discharged from hospital after 4 days (?)
4 days of antibiotics at home (only?)
Gave me a weeks worth of what I think you call perks.
Been giving myself needles in the stomach daily of a blood thinner. This is like horror to me but I have only 4 to go of 28. It's been just over 3 weeks since surgery. Had staples removed after 10 days and had and still have a fair amount of fluid leakage from the wound that nobody seems to be concerned about.

I thought I was doing well because mobility was getting less painful. I'm on the low fibre diet which seems absolutely bizarre to me but BM are happening and seem like improvement is coming.
Suddenly I'm feeling heavy burning sensations on the right side where the colon was removed and wonder if anyone else experienced this. I'm on zero pain killers for fear of masking something that could be wrong....?

Nodes have been sent for lab testing and I'm to return to oncology in one month to find out where we go in the chemo world.......

"Peanut" - from what I recall the first colonoscopy showed some small polyps that were removed, hence the second one a year later.

Again thank you all for your responses.

Perandar

Utwo
Posts: 115
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: I'm in angry mode, is there help for me?

Postby Utwo » Tue Mar 21, 2017 8:27 pm

"Suddenly I'm feeling heavy burning sensations on the right side where the colon was removed and wonder if anyone else experienced this. I'm on zero pain killers for fear of masking something that could be wrong....?"

Do you have any fever?
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

User avatar
WriterGirl1969
Posts: 418
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: I'm in angry mode, is there help for me?

Postby WriterGirl1969 » Wed Mar 22, 2017 8:28 pm

Ugh - no wonder you are angry. I feel angry for you just reading it! Unfortunately there are many stories like this out there. Thankfully there are also good doctors out there. I'm glad you kicked Dr. Google to the curb and are now getting the care you need. I'm Stage III also, and just cleared both my 1 year follow-ups clean. So don't give up hope. Hopefully this will be something you can look back on and maybe be able to use your experiences to help encourage others to keep asking questions and not be afraid to get second opinions.

Keep us posted on how things go - and don't feel bad for feeling angry. You get to feel any way you need to feel. That's what we're here for.

Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
WriterGirl1969
Posts: 418
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: I'm in angry mode, is there help for me?

Postby WriterGirl1969 » Wed Mar 22, 2017 8:43 pm

Peranadar wrote:Had the surgery , very large tumor 6cm


If it makes you feel better, my tumor was 12cm (about the size of my fist or so I was told).

Peranadar wrote:Been giving myself needles in the stomach daily of a blood thinner. This is like horror to me but I have only 4 to go of 28. It's been just over 3 weeks since surgery. Had staples removed after 10 days and had and still have a fair amount of fluid leakage from the wound that nobody seems to be concerned about.


Ugh. I didn't have to do those blood thinners, thankfully. Also, my surgeon used surgical glue for the incisions vs. stitches or staples. Did you have laparoscopic or did they have to open you? That can make a difference on heal time.

Peranadar wrote:Suddenly I'm feeling heavy burning sensations on the right side where the colon was removed and wonder if anyone else experienced this. I'm on zero pain killers for fear of masking something that could be wrong....?


I saw someone already asked if you have a fever. That would be an indication of an infection. Others have noted in other conversations having some pain at incision and/or resection spots for quite a while. Another thought is that surgeries can damage some nerves, and this burning might be some of them re-awakening so to speak. When it comes to questions on if something is okay to be feeling, err on the side of asking. Better to have them tell you that you're worrying needlessly than to not ask and find out it's something wrong.

Peranadar wrote:Nodes have been sent for lab testing and I'm to return to oncology in one month to find out where we go in the chemo world.......


Honestly, this last quote is the whole reason I wrote again. A month to get your results?!?! That seems like a really long time. I remember getting the results before I was even ready for them, and feeling almost rushed into the next step(s). Generally, if they are going to do adjuvent treatment, there is a window of time to start it at about 4-6 weeks post-surgery, so not even discussing results for a month seems... questionable to me.

All food for thought. Don't be afraid to speak up. You're the one that has to go through this, not the doctors. Give 'em heck. :mrgreen:

Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

Peranadar
Posts: 5
Joined: Mon Jan 30, 2017 6:46 pm

Re: I'm in angry mode, is there help for me?

Postby Peranadar » Mon Mar 27, 2017 3:19 pm

Hi!
No fever....
The nerve regenerating comment hopefully is the case.
Thank you for that. Makes me feel better :)
They opened me up, I'm too old for ab modelling lol
I told them to do whatever they needed too.
Lots of hassle with the wound leaking still but with home care and easy nurse accessibility they seem to be dealing with it with confidence.
Made a forced appointment for general discussion with oncology this Friday. I too thought a month seemed odd but also took it as good news in a weird way.
Better safe than sorry right?
Thanks for everything
:)

User avatar
Hannah Faulkner
Posts: 29
Joined: Tue Feb 14, 2017 3:14 am

Re: I'm in angry mode, is there help for me?

Postby Hannah Faulkner » Mon Apr 03, 2017 1:17 am

Hello Peranadar,

Sorry to hear about your situation, it good to know that things are moving in the right direction. My prayers are with you..

I wish you all the best


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Lee, Yahoo [Bot] and 40 guests