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Asgara
Posts: 7
Joined: Jul 2012

I am so happy to have found this board! I am a 52 year old woman and on Fri July 13th I went in for my first colonoscopy. I had had some changes in bowel habits in the past few months and have had rectal bleeding off and on for many years that I (and doc) always attributed to my ongoing hemorrhoids.

I was awake through part of the colonoscopy and heard the doctor mention a mass. They sent me to the hospital right away for a CT scan which didn't show anything else. I was admitted that afternoon and in surgery the next morning for a colon resection. They removed 6 inches of bowel and an ovary that seemed to have a cyst. I got the feeling that the doctor wishes he had removed the second ovary also, as it had been adhered to the rectum with scar tissue (he redid release it from the adhesion).

I was in the hospital for a week awaiting the pathology reports. This past Friday I got the news. Not only was the colon mass cancer but so was the ovary. The lymph nodes were clear. I've been home since Friday afternoon in shock. I've read the stats while I know they 'ain't necessarily so' I am terrified.

I don't have a significant other but I do have two grown children. My son is married and expecting my first grandbaby any day now. My daughter lives with me. I do not want them to become caregivers, I don't know what to do. I don't know when/if I'll be able to go back to work, the finances scare me, I've never been good at that part of my life.

I see ocologist Wednesday. A Dr Anthony Phillips of Fox Valley Hemotology and Oncology in Appleton Wisconsin.

I guess I just need to vent to people that aren't family or friends.

~~ Gayla

Lovekitties's picture
Lovekitties
Posts: 2884
Joined: Jan 2010

So sorry to meet this way, but glad you have found us.

Just to let you know you have found both family(cyber type) and friends here and venting is something that we are all good at.

You certainly have had a lot going on in the last 10 days. It is no wonder that you are feeling overwhelmed.

There are lots of folks here who are living proof that the 'stats' are just that and you can be successful in fighting cancer.

Getting back to work will depend on how you recover from the surgery, how you respond to on-going treatment plans and how demanding your work is. Some are able to go back and work while in treatment, some can't.

After you see the oncologist, let us know what the plan is and I am sure that folks here will be able to help you understand any possible side effects and offer advice to help minimize them.

I am sure as the days go by you will have questions which come to mind. Feel free to ask about anything and we will try to help you.

For now, just rest up and recover from the surgery.

Hugs,

Marie who loves kitties

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

My cancer was found in a tumor that encompassed my ovary. I had no lymph node involvement. It was appendiceal in origin. Please be sure that you verify that your primary tumor was colon and not appendix. If perchance it is an appendix tumor, then you need to see a specialist in appendix cancer, as you are dealing with something that isn't properly treated following the colon cancer protocols.

That being said, my colon was resected in 3 places; I had a total hysterectomy (with ovary removal) and omenectomy. I also had intraperitoneal chemo as well as systemic chemo. However, I'm now healthy, in full remission, living a normal life 5 years post-diagnosis.

It's going to be a rough year or so till things settle down. You have a good group supporting you here.

Alice

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

Hi abrub,

Just wondering what precipitated the omenectomy you had? According to my pathology, my colon cancer was found microscopically in the parts of the omentum removed during my hemicolectomy. However, most of my omentum was left in place.

Thanks for any information you might provide.

Rick

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

Hi abrub,

Just wondering what precipitated the omenectomy you had? According to my pathology, my colon cancer was found microscopically in the parts of the omentum removed during my hemicolectomy. However, most of my omentum was left in place.

Thanks for any information you might provide.

Rick

Coppercent
Posts: 142
Joined: Jan 2012

Gayla,

Our stories are similar in a lot of ways. I was diagnosed on July 15, 2011 a year earlier than your diagnosis. I also don't have a significant other because I filed for divorce a year prior to my diagnosis. I have two adult children and my son will be having my first Grandson in August (five weeks). I know it can be hard but try to focus on the positives. I was fortunate enough that I was able to work through the past year. My youngest son is in college and I am his full support so not working was really not an option. I will tell you it was not always easy but somehow I managed to pull it off. There were days that it took all my energy to get into the office I worked in and I would have to stop and rest several times getting there from the parking lot. But I made it through 4 surgeries, radiation and a couple rounds of different chemos and only missing work for the surgeries. I am now in remission and awaiting my first 3 month check up in September. In my heart I have to believe every test will come back with no signs of cancer but if it does not I know I was strong enough to beat it the first round I can do it the second round too. I divorced my husband of 25 years to have a better life and I refuse to let cancer stop me from living my dreams!

Brenda Bricco's picture
Brenda Bricco
Posts: 549
Joined: Aug 2011

Hi Gayla, we must live within an hour of each other. I am going to send you a private message with my number. I want to share some info with you .
Brenda

Annabelle41415's picture
Annabelle41415
Posts: 4190
Joined: Feb 2009

Well your head still must be spining if you have only found out less than two weeks ago. Now you will be on a rollercoaster of appointments and tests (blood). Once you see the doctor they will go over the protocol for a plan to treat you. If it's possible, take someone to your appointments with you as a lot of times your mind will be racing and you might not hear all of what the doctor is saying or might hear it incorrectly, take notes, and bring a list of questions with you each time. There is a lot of knowledge on this board so if you have any questions, please just ask. Welcome to the board.

Kim

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

hi Gayla,
i joined the board july 2012 & everyone has been outstanding for support & info. i agree with Alice in that you need to be sure what primary cancer you have. dec 2010 i was dx with stage 3c colon cancer with no mets. had colon resection dec 2010, folfox6 jan thru july 2011. i was just diag with metastatic colon cancer in the peritoneal, right ovary, 2 abdom tumors & a very small spot in my liver. i will be treated for colon cancer because the cancer cells in those areas are colon. chemo that treats only peritoneal/ovarian/abd cancer cells will not work. so be sure & find out the primary cancer. i was just like you in that i read too much into internet stats. not only the first time but also this time. thank heavens good people on here set me straight or i would have gone crazy!!! the oncologist i saw while my doc was on vaca told me i had 3 months, maybe a year to live. also he rx the wrong protocol of chemo. i joined this board right away & they got me up off the floor!!! i have since seen my oncologist, a gyn doc, a surg oncol & oncol at ohio state university ( the james center in columbus ohio which is excellent)and finally a surg oncol at university of cincinnati ohio. all agreed i am treatable & feel i can get this in remission. they were shocked the first oncol said what he did. i had my first folfuri with avastin today. at some point i will have surg. the main thing is that i was told on here & by all the docs to NOT put faith in stats. that is very good advice! and people do live very long wonderful lives!!!
i know how you feel in that you do not want family to be caregivers but as my chlidren, grandkids & friends have said: we want to help because it makes us feel good to know we make a difference.
as far as work you will just have to see how you do with chemo. the first time i just missed 2 days out of 4 days a week. this time i will work a week & take off my chemo week. i am 64 & not a spring chick!!!
keep us posted
be strong & know you have people you care for you even tho we have not met in person!
i wish you luck wed!
judy
prayers & hugs to you.

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Hi Gayla,

I am new here too...so I don't really have words of wisdom to offer yet. But, there are so many great people here and it is so comforting to see how they are all here to support eachother. Just jump right in and ask any questions you may have. I had my surgery for colon resection and removal of appendix on June 15th...and first chemo treatment just yeaterday... this group helped me get over some of my fears about the chemo treatment. And it really feels great to know that there are so many people behind me ... willing to support me and keep me in their prayers. - Alex

Asgara
Posts: 7
Joined: Jul 2012

Thanks everyone for the support. Yes, I have been told my cancer is colon primary. I have my first oncology appointment this afternoon and am not sure what to expect. I was told I would be getting a PET scan soon also, but I assume they can't do that until my staples are out in a week.

I have been reading a lot on here about different chemo regimens. What is the gold standard? What should I be asking my oncologist? My best friend wants me to keep Mayo in my mind. It is only about 4.5 hours from here.

~~ Gayla

Asgara
Posts: 7
Joined: Jul 2012

I met with my onc for the first time on Wed and I walked out of the office feeling a billion times better than I did walking in. He was matter of fact, informative, and most of all positive. He went through my colonoscopy report, the surgery and pathology reports.

I'm set up to get a port installed tomorrow morning, I have my staples removed on Thursday and have blood work and PET scan set for Friday. I start my chemo next week Wed, the 8th. He will start me on FOLFOX with Avastin.

Mayo was brought up and he said if I decided I wanted a second opinion or if we wanted to look into needing radiation or a maintenance chemo after this initial 12 sessions his office would set up the appointment with Mayo to get their opinion.

He talked about their aggression monitoring and follow-up schedule and said we'll beat this. If things come back we take care of it and go on.

The staff in the office was great. Friendly and helpful, they have nutritionist and social worker on staff.

While I'm still scared, and worried about all that is going on this coming week, I hope I'm right in feeling so much better about my future.

~~ Gayla

YoungerSis62's picture
YoungerSis62
Posts: 28
Joined: Jul 2012

Hi Gayla - Welcome - I'm new to the boards as well, though my cancer was first diagnosed 18 months ago. I really wish I had found this board 18 months ago - but so glad to be here now.

You will have good days and bad days - it's a roller coaster ride. And you are having to absorb so much information at once. Things will settle down, and you will be able to assimilate more.

Good luck with your treatments -

Marilyn

relaxoutdoors08
Posts: 512
Joined: May 2011

Hi,
I had emergency surgery in 2010 following my colonoscopy in a regional hospital by a Board Certified Surgeon. But I had my initial scans at Mayo Rochester and my treatment. Great place to go for many reasons. We drove 7-8 hour drive in the Winter but it was worth it.
NB

Asgara
Posts: 7
Joined: Jul 2012

Just a quick update. I had my PET/CT scan and blood work on 8/3/12 and at my first chemo visit with my onc on 8/8 he told me my scan was clear, nothing was lighting up but healing surgical areas from colon resection and port implantation. My blood work showed no issues and my CEA had dropped from 90 pre-surgery to 8.5.

I started my FOLFOX6 on 8/8 without the Avastin as my surgical incision wasn't healed up yet.

My second session I had my ox dose lowered due to low wbc and I had a shot of Neulasta the day after my pump removal. Boy, I'm NOT a fan of Neulasta.

I should be going back to work on 9/10. My work is being very helpful.

~~ Gayla

Coppercent
Posts: 142
Joined: Jan 2012

I am with you on not being a fan of Neulasta! I handled my first several rounds of chemo really well. Then all of a sudden my wbc dropped. I got my first shot of Neulasta and finally understood the fatigue people were talking about. Thankfully it only lasted a couple of days and mine landed on the weekends. I was lucky though and never got the joint pain. Good Luck! I am sure you are excited about returning to work.

Phil64's picture
Phil64
Posts: 411
Joined: Apr 2012

Gayla,

I'm sorry you have had to find us here, but please know you have some good people to offer you support. The people posting here have gone through the shock, surgeries, and subsequent treatments. That makes them understanding and sympathetic to what you are now going through as well...

I too have gone down this road and this board has offered me great support.

Know that:

1. You can beat the cancer!!!!
2. The stats you may read are NOT fully applicable to your case - each person and each cancer is unique.
3. The surgeries will heal and you will feel better.

Also, you may want to seek out counselling on working and taking time off from work, etc.

I am about 1/2 way through chemo treatments and I'm trying to work through them all. So far, I have lost about 2 days every 2 weeks of work. Of course I did have to take time off for surgeries and recovery -- but luckily, given my job, I was even able to do a little work from home. Also, for me, I love what I do so working has been a good thing for me -- I'm not proposing it is a good thing for everyone.

I'm sure you will get the support you need here.

Love and Light to you,

Phil

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

Welcome and I am glad that your surgery went well! I am sending good thoughts and prayers your way.

I kept my battle with cancer away from most people for the first 3 years. My wife and I and just a couple of close friends knew. During the second bout with cancer, I let the cat out of the bag. It was definitely easier that they knew and what I was going through.

Do not put as much value on results prior to 2007. The Chemo has improved greatly since 2007. View results of Chemo to not Chemo with your type of cancer. All cancers do not have the same rate of improvement with chemo. Some cancers have less then 2% difference of Chemo to no Chemo. Mine was 35% better results with Chemo. For me that was a huge difference.

Best Always, mike

Phil64's picture
Phil64
Posts: 411
Joined: Apr 2012

Mike,

I struggled with who to tell and what to tell and finally decided, after praying about it, that I would tell everyone and anyone interested...

My hope is that by sharing my story others will learn about cancer and (I'm hoping) will learn that cancer can be beat.

Anyway, I also found it very theraputic to blog about my feelings and thinking as I go through this cancer battle.

Phil (blog: http://PScamihorn.me)

Asgara
Posts: 7
Joined: Jul 2012

Thanks for the comments everyone. I too am trying to be open. It helps ME to be able to talk about the good and the bad with friends and family. I have a small blog where I post a kind of 'chemo diary' so I don't have to go over and over the same answers with everyone. People can read my short posts and know how I'm doing then they can come back and talk to me about details or other things.

My onc was very positive the last time I saw him. I will see him again next wed when I go in for my 3/12 chemo apt. I'm hoping the good blood work and clear scans mean that this chemo is mop up and I can look forward to being NED... I have a new grand baby to live for :D

~~ Gayla
http://apaininmyass.wordpress.com/

Nana b's picture
Nana b
Posts: 2707
Joined: May 2009

Hi There! I have been on this board since November 2008, Stage 4. I had a large portion of my colon and 60% of my liver taken out.

There are a lot of folks here that can answer a lot of your questions. Stay positive, look to see if you have any disability available to you, through work or SS.

I worked full time through chemo and never had a care giver. I may have been lucky but don't think so. Think big, you can do it. One foot in front of the other. You are only as handicapped as you choose to be, my motto.

Please try and include your kids, my daughter was devastated but she turned out to be a rock.... Trying not to preach her, but wanting to let you know that you can do this. Hank in there!

Prayers to you and I wish you the best in your journey.

Helen321's picture
Helen321
Posts: 715
Joined: May 2012

Hi Gayla, I'm 42 andI got diagnosed in Feb of this year with rectal cancer stage I, I'm now stage III because I'm following an unusual pattern. That doesn't really mean anything, it just is what it is and happens sometimes. The chemo is working very well. I'm now in my 5th week of treatment. The only thing I can add is that I'm sure the second doctor would suggest the chemo as your first doctor is suggesting and then the radiation which seems to be standard but I would go for a second opinion right after the PET scan. Bring all of your lab results and all of your scans on disk, have a second person look at it and get his opinion. Let him tell you his opinion without offering the first docs opinion. It gives you a great peace of mind when two doctors tell you that you do indeed have this specific cancer and your path is a good one. I wish I had done that because my second opinion disagreed with my first completely. I had already done the first surgery. You can only go forward. The second guy was a top guy at one of the top cancer hospitals. I did some research and he was right on the money with his treatment plan.

Also just a tidbit, I recently learned that you want to do MRIs and scans that involve chemicals being put into your body on non-chemo weeks whenever possible. All those chemicals pack a wollop in your body all at once. Obviously you don't put a PET scan off (or any other timely scan) if it's on a chemo week but it's useful when it's a routine scan. It was a good lesson.

Hang in there and try to smile when people ask you how you are a million times and tell you stupid stories (and they will). And when your family just makes you want to go ahhhhhhhhh! It gets better and it tapers off. It's hard for people to understand how this feels. They all love us and mean well. We're also now going to have to set a rule about going to any doctor on Friday the 13th! =) Helen

marbleotis's picture
marbleotis
Posts: 473
Joined: Mar 2012

Welcome aboard. You will feel like you are on a roller coaster most of the time. That is ok - because sometime it is slow and sometimes it is fast.

My story - I had debilitating pain on left side front and back. Scan (kidney stone), ok for 2 weeks then it came back. ER visit, scan, presents like Gall stone except pain was on opposite side. HIDA scan showed a large gallstone. Removed Dec 5. Happy me. Until 3 weeks later when pain came back on left side in front only. Slight anemia also. Lets's do a colonoscopy and endo since we had not done this yet. Friday, Jan 13th the Gastro told me that I had colon cancer. I was stunned! I was also only 49. I am stage 3b (3 nodes and with no mets), Colon surgery 1/31/12, Port implanted 2/28/12, 12 rounds of 5-FU/Oxali started 3/7/12 and ended 8/23/12. Now I have scans on 9/18. Since I started with clean scans we have a good feeling then colonoscopy again in Jan and so on......

Sounds like you have a great relationship with your Onc - that is important. ASk alot of questions and when looking on the internet only look toward trustworthy sites (ACS, Sloan-Kettering - like these). You will read alot of stupid junk and get yourself upset over nonesense. Every colon cancer is different in each patient. Everyone reacts differently to treatment. Be good to yourself. My husband and family (girls 24 and 20) have been wonderful through all of this and understand that I need to be watched the rest of my life but this will not stop me from living. I am less stressed, 60 pounds lighter (thanks to the chemo-diet), and have a whole new outlook on life, jobs, working, laughter, family, friends and life in general.

These boards have been a huge help to me. There are people that post that have been navigating this for years. I think of them as mentors.

Please keep us posted.

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