Extremely Frustrated

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ibcaree
Posts: 39
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

Extremely Frustrated

Postby ibcaree » Tue Dec 02, 2008 12:54 pm

This is only my second post..I haven't had time to get online much. I know you all do not know me, but I really need to vent. I was diagnosed with colorectal cancer almost 3 weeks ago. I've been waiting for test results all this time to see if I have Lynch Syndrome. My Dr. has been wanting to wait for the test results before he performs surgery. My initial surgery date was supposed to be yesterday, but because the idiotic lab sat on my paperwork for 5 days it has delayed everything. I was told that it appears that my cancer was caught early, but I won't even know what stage it is at until surgery. I spoke with the genetic counselor today (who is not only useless, but a complete airhead) and she informed me that they are now waiting for my insurance company to sign off on the payment portion. I asked her how long it would take for the actual test (after they get the paperwork from my insurance) and she said it could take two weeks?! Are you kidding me?! I was told this would take no more than 3 weeks and now I'm looking at 5-6weeks? What good does it do me to catch cancer at an early stage if I'm waiting over a month for surgery? I started out completely calm about all of this, but now I'm starting to lose my mind! A. I want to know whether or not I have Lynch Syndrome and B. I want this cancer out of my body!!! I asked my husband to call my Dr. s office and demand that they schedule me for surgery. It is now scheduled for Monday. Am I doing the right thing? Should I wait for the test results so that I can make a better decision if the test comes back positive for Lynch Syndrome? I can't believe this nightmare. It's the end of the year and my deductible is met, I do not want to be in the hospital at Christmas (I have a 4 year old and 2 year old)..I just want this to be over. :cry:
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25

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willtowin
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Re: Extremely Frustrated

Postby willtowin » Tue Dec 02, 2008 1:40 pm

wow...I completely understand your frustration. I had to make the same decisions before my surgery, although I was waiting to see if MD Anderson would accept me, the lynch testing came afterwards. You might ask your surgeon what would change if you have lynch. Will he plan to take more colon, or uterus? Why does he want to wait. Also another thing to do before your surgery is to have a PET or CT scan to determine if there is any spread. I know the dr.s can't really tell us how fast our cancer grows. That is what I was worried about, turns out mine was aggressive and I was happy w/ my decision not to wait. I did decide to have a hysterectomy at the same time because I was having issues, and was concerned about the lynch possibility.

Talk w/ your surgeon and find out why he wants to wait, then maybe that will help you make a decision. Good luck....
Stage 1 -4-25-08 (lymphovascular invasion)
poorly diff
Hnpcc negative
TAH/BSO 5-08
Folfox COMPLETED 12-26-08
NED as of 12-09
gallbladder removed 3-09
appendectomy 11-2012
1-2013 FNH of liver, or Adenoma
44 year old mom to 3-10, 11 & 14

NWgirl
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Re: Extremely Frustrated

Postby NWgirl » Tue Dec 02, 2008 1:49 pm

That was my thought too - what difference does it make from a surgery stand point if it is/isn't Lynch? Just curious. I can completely understand your wanting the surgery NOW. I too wanted that creepy crawly tumor out of my body. And you have every right to now want to be in the hospital over Christmas with two young children at home. Best of luck on the surgery and quick healing.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
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wamo
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Re: Extremely Frustrated

Postby wamo » Tue Dec 02, 2008 3:24 pm

Yeah our genetic counselor was of the same mind if you know what I mean.... When I feel like I know more than they do, there's a problemo. My husband was diagnosed with rectal cancer in September 2005..... he then had radiation and 5FU for 6 weeks.... then he had to "cook" for a while afterwards... his rectal resection surgery was not until January 18, 2006. Just for perspective. BUT if you are concerned about your deductible already being met and trying to get it done this year because of costs you need to avoid at the beginning of the new year that is a whole different mission. I really don't know if it hurts or not to have a few months before a resection.... in the big scheme of things it prob took years to get there in the first place. I am sure the wondering of what stage you are and stuff like that is also super frustrating. I remembering thinking if I just knew what stage he was I will be ok, if I just knew if it was in any lymph nodes, I will be ok, if I just knew this or that.... it is a hurry up and wait thing with cancer. Always waiting for something.... treatments, surgeries, appointments, scans, etc.

As suggested, explain your concerns to your onc and go from there. If you can't really talk to your oncologist then it is going to be a very frustrating road ahead. Set an appointment or talk on the phone but let them know your concerns and have them explain to you their reasoning for things. Hang tough!

WAMO
Hubby-9-05 IIIC Rectal 4/11nodes 40yrs*1-06 LAR FOLFOX *6-07 Mets Lungs-FOLFIRI,Erbitux,Avastin *5-08 Skull met *9-08 ClinTrial EPO906+Celebrex *mets liver,kidneys,adrenal gld *WBRT brain mets *1-09 Gemzar/Xeloda ***2-25-09 Paul entered Heaven's gates.

ibcaree
Posts: 39
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

Re: Extremely Frustrated

Postby ibcaree » Tue Dec 02, 2008 3:46 pm

NWgirl - My Dr. is wanting to wait for the results to determine how much colon will be taken and whether or not I will have a hysterectomy..which I agree with, but at the same time I don't understand why he can't get the lab to move quicker. Thank you for the well wishes.

Willtowin - How long after you were diagnosed did you have your surgery?

Wamo - You hit the nail on the head with my feelings right now. Patience is not one of my virtues and apparently God feels that I need more work. :D

My biggest concern right now is not knowing whether or not this cancer is agressive. I'm concerned that I haven't even been scheduled for a CT or PET scan at this point. I am so upset at myself for allowing this to get to me and get me down like this. I've been an advocate for my own health since my early twenties when my husband and I were dealing with infertility. It's the very reason I reasearched skin cancer/colon cancer, discovered Lynch Syndrome and asked for a colonoscopy and found cancer. I simply do not have the energy at this point to do all the work for my Dr. I just want to feel "normal" again.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25

Wound27
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Re: Extremely Frustrated

Postby Wound27 » Tue Dec 02, 2008 4:12 pm

My heart goes out to you and your family. This is so ridiculous. I can see why you are so frustrated. Even if they know the stage on paper, they really don't know the real answers until they get inside to look. The stage is important however, I agree with your logic. You have met your deductible. Call your insurance company and complain. Speak to the administrator on duty at the hospital. Let them know that your patients rights have been violated. There is a list of patient rights that are standard. Please look them up on the internet or look them up on the hospital's web site. Let them know that you are documenting. Each time you speak to someone get their name, time and document the date and time. You have a right to feel the way that you do. Just hang in there. I recently experienced something similar.

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Gaelen
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Re: Extremely Frustrated

Postby Gaelen » Tue Dec 02, 2008 5:38 pm

okay...a different perspective.
Yes, I completely understand wanting to get surgery done at a point in time when your insurance deductible has already been met--but in the big picture, the more important thing is getting the right surgery done by the right doctor. A resection plus hysterectomy is a big surgery, so even if it was done next week, you'd be wiped out for the holidays--seriously wiped out. You might even still be in the hospital over a holiday period--not the place you want to be. You will most certainly still be on pain meds and activity restrictions two weeks after a simple hysterectomy without a colon resection--it's a guarantee you'll be in that state for the holidays if you have a resection/hysterectomy next week. So from that standpoint, waiting until after the first of the year for your surgery (which would give your docs time to do some additional screening scans, and you time to research what is going on so you understand it more fully) wouldn't be a bad choice.

I also know how common it is to want to have the cancer out of your body--but just because that's a common reaction doesn't make it the right reaction. Sometimes surgery right away is NOT the best decision. Your tumor has been there awhile (even if it's aggressive) and the difference in stage/involvement of tumor between doing surgery December 8 or January 5th would most likely be minimal to no difference at all. No surgery, even early stage surgery, can guarantee that it gets all of the cancer out of your body. No matter what stage the pathologists decide you are, microscopic cancer can always be left behind during surgery. So finding cancer early IS important, but two months from discovery/dx to surgery is not an unholy or wrong amount of time to wait for surgery.

Race ahead slowly, and get the right thing done in the right time by the right doc--don't just race ahead because you think it's wrong to not DO SOMETHING RIGHT NOW. What good will it do to DO SOMETHING if you allow your fears about cancer to race you right off a cliff into a situation into which you aren't prepared and well-informed?
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

weisssoccermom
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Re: Extremely Frustrated

Postby weisssoccermom » Tue Dec 02, 2008 9:02 pm

I am going to elaborate a little more on Gaelen's post. I, too, understand your desire to get this tumor out of your body, but please, let the doctor's make sure that they have the right procedure before just rushing in to operate. As Pat has said, your tumor has most likely been there for quite some time and waiting a few more weeks isn't going to most likely make that much difference.

When I was first diagnosed, I just wanted that thing out of me! I was ready for surgery right after my colonoscopy. Because I am allergic to the sedation that they use, I had my scope in the hospital under general, and when I found out they were pretty sure it was cancer and hadn't been able to remove 'the thing', I wanted my surgeon to just come down and cut it out - right then and there! Good thing no one listened to the rantings of a nutty woman. Obviously I didn't know then what I know now. I had rectal cancer, a cancer that is usually treated neoadjuvantly (before surgery) with chemoradiation to attempt to shrink the tumor in hopes of preserving sphinter function and to minimize the threat of a local recurrence.

I remember being absolutely frustrated by the time it took from diagnosis until my radiation treatments actually started - almost 40 days! Those 5 1/2 weeks seemed to stretch on forever and I was absolutely positive that during that timeframe my cancer would spread to my lymph nodes.

If this is a board certified colorectal surgeon (please make sure that this surgeon is a board certified one and not just a general surgeon) trust him that he knows what he is doing. Taking the time to get all the answers may save you from having another surgery down the road. I know you want this to 'be over' but you need to be prepared that your journey is just beginning. You're quite correct that you will know the stage after surgery but just be prepared that you may be facing chemo and or radiation treatments down the road depending on what the path report shows. I'm not trying to be pessimistic here but I don't want to see you getting depressed if it should happen that you end up needing more treatments.

Since your second post indicated that you haven't had a PET or CT scan done yet, I would take the time to get that done BEFORE you have your surgery. That test is very important to ascertain whether or not the cancer has been caught early. I realize that your doctor has said that he believes it was caught early, but there really is no way to know all of this without having that test.

If you don't have Lynch , you really don't want to have a hysterectomy if you don't need one. I really do understand your concerns, but I would defer to the surgeon on this one. The lab results should be back in another week or so and you might avoid a hysterectomy (particularly if they are taking the ovaries) that you don't need and a medically induced menopause that you won't want to deal with if you don't have to - particuarly on top of everything else you will be going through.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
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DeeDee
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Re: Extremely Frustrated

Postby DeeDee » Tue Dec 02, 2008 9:38 pm

I understand your frustration. My family fit the profile for Lynch Syndrome so I opted to have a hysterectomy along with my resection. There was more than a 2 month wait to even see the genetic counselor so waiting for testing was not an option for me. I was diagnosed Oct. 25 and had my surgery Dec. 11. My surgeon gave me the option of waiting until after the holidays to have my surgery. I chose to have it before the holidays for 2 reasons. First like you I had met my deductible for the year. As it turns out with the chemo and other testing done afterward I met my deductible the following year too so it made no difference from a financial standpoint. The second reason is that I wanted the cancer out NOW. It would have ruined the holidays if I had known the cancer was still in me and growing. Gaelen makes a good point about the surgery making you wiped out for the holidays. For a while I was afraid I was going to be in the hospital for Christmas. I didn't get out of the hospital until the 19th. I was pretty useless for the holidays except as an observer. I spent most of the holidays in bed. If I had the same decision to make now I would still make the same choice. It would have been really hard for me to wait for a month or more while I was doing nothing to fight the cancer. It is a very personal decision and each person has to decide what is best for them.

Although I can understand why the surgeon might want to have the genetic testing results before surgery I don't understand why the scans have been delayed. The genetic test results are not going to change what shows up on a scan that is looking for metastatic disease. However, the scan results could also effect what is done surgically.

I agree with weisssoccermom's comment about not wanting a hysterectomy if you don't need one. The radiation therapy I had shutdown my ovaries so I was in medically induced menopause any way. I was also passed the point of having children so deciding on the hysterectomy was a pretty easy choice for me. Dealing with the menopause symptoms has not been easy. I would not recommend a hysterectomy unless you really need one.
Hugs,

Dee
Stage 2 Rectal Cancer
Tomo Radiation and resection 12/06
Folfox stopped after 3 due to toxicity
Ileostomy reversal 04/07
NED

momsCancer
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Re: Extremely Frustrated

Postby momsCancer » Tue Dec 02, 2008 10:44 pm

just wanted to respond about the endless waiting, I can definitely relate. Waiting for answers from doctors, labs, etc... When mom had her first colonoscopy, I think the first of April. They told her, they found a tumor and it was cancer. And left it at that until they could pencil her in with her oncologist 2 weeks later. She called almost every day to see if they had a cancellation so she could get in. One of the nurses got fed up with her and said that there would be no cancellations and to quit calling. Those 2 weeks were unbearable not knowing anything much less what stage it was in. Then she had to wait until the first of June to start radiation and chemo so they could do a PET Scan. So basically it was a 2 month wait from the point they found the tumor to when the treatment began. I thought that once treatment started, the wait would be over. Wrong, it was just the beginning. I went with mom to every radiation and chemo treatment as well as most PET Scans and doctor appts. I can't count the hours spent sitting in their waiting rooms and then in the examination rooms. It definitely messes with your mind, she had to have anxiety meds to deal with the waiting game, me too. Recent PET Scans and Colonoscopy show NO CANCER and she does not have to have another colonoscopy for 12 months :-) I see your in Oklahoma, we are too.
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;

www.onecrazeemommy.blogspot.com

I should change the name to one crazee daughter, I think.

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willtowin
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Re: Extremely Frustrated

Postby willtowin » Tue Dec 02, 2008 11:12 pm

ibcaree---

I didn't see that you were in Oklahoma until now. I am too. I had a great colorectal surgeon. Feel free to pm me if you want and we can share more about who i see here.

To answer your question about how long I waited, I was diagnosed April 25, and surgery was May 20th. It was a long hard recovery particularly because I had an abdominal incision. I spent about 7 weeks recovering. I started chemo on July 2. A pet scan can be scheduled quickly, like in days around here. You shouldn't have to wait long. Talk w/ your surgeon and ask for one. Another good thing to do is to be proactive and start asking around about an oncologist, just in case. I had a consult scheduled w/ one for a couple weeks after surgery. My surgery was a combo of two surgeons, my gynecologist and my colorectal surgeon.

Hang in there...what your feeling is soooo normal. When I was diagnosed I had to go on antinausea meds to cope. My body just went nuts. It seemed I couldn't control how I felt. It DOES get better...I would love to chat with you. I am in Oklahoma City, where are you?
Stage 1 -4-25-08 (lymphovascular invasion)
poorly diff
Hnpcc negative
TAH/BSO 5-08
Folfox COMPLETED 12-26-08
NED as of 12-09
gallbladder removed 3-09
appendectomy 11-2012
1-2013 FNH of liver, or Adenoma
44 year old mom to 3-10, 11 & 14

ibcaree
Posts: 39
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

Re: Extremely Frustrated

Postby ibcaree » Wed Dec 03, 2008 2:33 am

Thank you all for your kind replies. It helps so much to talk with people who understand. My emotions got out of hand so quickly and I was a little unprepared for it. My faith is strong and I know God will use this for good. I guess I didn't realize how quickly the waiting would get to me. I called the nurse today and asked for a PET scan. It is scheduled for Thursday. I was finally contacted by the lab today about the financial portion. I should hear back about the actual test results in 10-14 days. I am going to call my surgeon tomorrow and see if there is any way he could call the lab and see if it is possible to get the results by Monday. If he is unable..I guess I will be waiting 10-14 days. I feel that my Dr. knows what he is doing and I do trust him. Everything he has said lines up with what I've read and what is being said here. It's the lab and the Genetic Counselor that have sent me into insanity. I am going to discuss this with my Dr. I realized after I calmed down and had time to think that the way the counselor talks and how she tells me information is what has me in a frenzy. She's very clueless.

Gaelen & Jayleen - Thank you both for your perspective on this. I really needed to hear the other side of crazy right now. :lol: I knew I was being irrational to a point and I needed someone to steer me away from the cliff.

DeeDee - Thank you for sharing your experience after surgery. It gives me an idea of what to expect if I have extensive surgery. I do still want the surgery before the holidays. My husband will be unable to take very much leave in January where he will be off for vacation for over 2 weeks in December.

Willtowin - I live in Edmond. I asked for a PET scan today and it is scheduled for Thursday. Thank God that could be done quickly. I had been debating about whether or not I should call my Reproductive Endocronologist(RE)/Gyno about my condition and you just answered my question. I really don't want anyone touching my girl parts but my RE/Gyno. :wink: I'm going to pm you about who your Dr. is and who your oncologist is.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25


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