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Just diagnosed and very apprehensive

cahalstead
Posts: 119
Joined: Jan 2007

Let me introduce myself.

I am 60 yrs old and never had a colonoscopy. I just kept putting it off. I had a spinal fusion 6 wks ago and discovered I was severely anemic in the pre-op room. I was given a a total of 3 units of blood. Of course, I was advised that I needed to find the cause of my blood loss that was making me anemic. I scheduled a colonscopy last Friday and I found out I had an orange-sized mass. I just received a call from my Gastro doc and it is indeed "cancer". I am scheduled for surgery on 2/14 which is too long in my opinion. But the surgeon is booked. I informed the gastro doc about the time frame and he is going to get it moved up. It needs to be done ASAP!

I've done pretty well with my emotions and shock of this, but today I am very apprehensive, afraid of the unknown and not wanting to tell anyone. I do not want to be buried before I finish living and that's what most people imply when they hear you have the dreaded "C" word.

I have really researched this message board and read many, many of the posts. They have been helpful and an encouragement to me. I guess my greatest fear now is that they will open me up and it will be every where and they'll close me up! I am going to have a CT scan right away, will I know then if it has indeed spread?

Any info and/or encouragement you can offer is appreciated.

I'm looking forward to sharing my journey with all
of you.

Char

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Char,
Take a deep breath.... Everything you are feeling is totally ok... I know I was scared out of my mind. I have a walnut sized rectal tumor diagnosed on September 18th (32 years old). I too was severely anemic and what led me to the doctor was my severe leg cramps at night. I also felt things were moving too slowly as far as treatments. My onc. decided to do chemo and radiation prior to surgery. That did not start till 4 weeks after diagnosis (I thought that was too long, but planning takes a while). I then did just under 6 weeks of chemo and radiation, finishing up on December 1st. I then had to let my body heal for 6-8 weeks before surgery. I am now scheduled to have surgery this coming Monday, 4 1/2 months after diagnosis. Did I feel this was too long???? Looking back now I don't. Just keep asking questions. The good thing is your cancer is most likely slow growing. You have time for the doctors to decide what is best for you. Just keep on top of things and keep asking questions!!!! Go buy a dayplanner and write down every appointment, what was discussed, any labs done, mileage, etc.... that way you will have a good reference.
You are going to have a CT scan, which is good. Are you going to have a pet scan??? I had both and it did show that it was in my lymph nodes. Your fear of spread is completely normal. I was soooo scared the day they did my first pet scan, but you will get through it. There is a lot of support in this group. They have really made my journey less scary. Keep your chin up and don't quit fighting..... Be positive, but know it is ok to have all the emotions that come along with this.
You take care and you will be in my prayers.

Kiersten

sandyjg
Posts: 71
Joined: Jun 2006

My heart goes out to you. I can only speak from my experience. My husband had a blockage and had emergency surgery July 05, we found out he had a tumor, then found out it was Stage IV as it had spread to 9 of 12 lymph nodes and lots of liver mets. I thought our life was over. We had been married 8 months and were blissfully happy. Our surgeon (wonderful kind man) was called by the hospital nurse and told that we were having lots of emotional problems over this diagnosis. We were so confused, scared and overwhelmed. This surgeon came to the hospital and sat with us for over an hour. He came in his shorts from home and gave us some wise words. It was obvious to both of us that he had been down a tough road as well. The main focus of his words was that we could either spend the time we have left focusing on living or focusing on dying. For some reason this helped us move forward. The surgeon realized that we had deep faith and actually gave us a spiritual book that had helped him get through personal tough times.

The journey has been a roller coaster. We have done a whole lot of living during the past year and a half, gone on 2 cruises, many golfing trips, lots of NFL games, and leave 2/19/07 for 2 weeks in Hawaii. He has been on chemo for most of this time, with the exception of the 2 months where he had surgery to reverse the colostomy. Don't get me wrong, we have had a few pity parties, but the silver lining is we know each moment we have is precious. We enjoy our family, one another and try hard not to get caught up in the day to day drama of life. This board is a lifesaver. You will learn about every medical treatment and how to help yourself with nutrition and supplements.
Be strong, one day at a time. It is a battle you can win, we feel strongly that if we can get to the 5 year mark that science will have caught up and there will be new treatments for us. My husbands liver mets grow and shrink, keeping us on our toes.
You are in my prayers and thoughts, take care of yourself, nap, relax for a while, watch the sunrises and sunsets!

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Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hello Char -

I know how overwhelmed you are right now and am sorry you have to be here. I was diagnosed at age 55 during my first colonoscopy with a large sigmoid mass. I too was anemic. The biopsy was a formality - GI doc knew it was cancer when he saw it.

I met with a surgeon three days after the colonoscopy. I was desperate to get the "thing" out of there right away. My surgeon told me that we could wait a couple of weeks and would do well to use that two week period for "data gathering". He didn't want to wait much longer because he didn't want me to have to have emergency surgery due to a blockage, but he did feel that collecting some data would make for a better informed surgery.

Your surgeon is right to want a CT - gives more info going into surgery. I had chest x-ray and CT scans of abdomen and pelvis two days later. Will you know if cancer has spread based on the CT? Probably, but also maybe not. In my case "a spot" showed up on my liver, but neither the radiologist nor the surgeon were sure if it represented cancer. They debated, I had a failed MRI (apparently I breathed at the wrong time), so I went into surgery knowing there was a possible liver met, but not being sure. During my colon surgery they biopsied the liver and it was cancer, but NOT at the place indicated by the "spot" on CT. So, while I did have metastatic disease, the spot on the CT was not cancer and the cancer that was found did not show at all on CT. (It did show up in a post-surgery PET scan, in the area of biopsy, but has never showed up on CT>) I think my case is somewhat unusual. However, this is a roller coaster disease and sometimes tests raise questions that require other tests instead of providing a definitive answer.

The "C" word is a big bad word in our culture. One of my greatest fears when first diagnosed was "telling people". I couldn't tell my mother (brother finally did that for me). My husband told my kids. I had to tell my boss the next day (that was hard) and he made me tell one other colleague in person (as Bruce was going to have to partially take over for me during surgery etc. and we had been close work friends for years). I have other very close friends both at work and elsewhere and I just could not tell them face to face. I finally sent emails to them shortly before my surgery and let the word get out. I even felt wierd seeing my internist for pre-op physical and having to tell him! In retrospect, this all seems nutty. Now my attitude is "I have/had colorectal cancer and if you can't handle it, that's your problem!" So, I (and everyone else on this board) understand just how emotional this diagnosis can be initially.

One piece of advice is to take this one step at a time. Right now the important thing is surgery and learning the "stage" of the cancer. Then you have to recover from surgery. From the size of your tumor, there is little doubt you need surgery.

Chemotherapy may well be in your future, but don't dwell on that now - you can't start until you are mostly healed from surgery anyway. (For the record, while everyone reacts differently and while it is no fun, in general the typical colorectal chemo given as first line treatment does not usually cause you to lose your hair.) No doubt your surgeon / primary care doc will have oncologist recommendations and seeing the oncologist should be done after you are home from surgery and your anesthesia brain fog has cleared. (I met mine my 3rd day in the hospital and then saw her in her office about 2 weeks later.)

Keep us posted on the CT results. Do you know yet if your surgery will be fully open procedure or laparoscopic? There are lots of people here who can share their experiences with different types of surgery.

Feel free to email me on this site with any questions. And please take care (for the record I am 17 months with no evidence of disease and 14 months with no chemotherapy.)

Be strong,
Betsy

jams67's picture
jams67
Posts: 927
Joined: May 2006

I am a stage iv survivor, and I think our first reaction is to rush into surgery and just remove what you know is there. My advise is to get your scans and let that determine what you do next. If the cancer is restricted to the colon, then you will want the best surgeon for the colon. If you have nodes and liver involved, then that is a situation that will require research on your part for a liver surgeon. DO not rush into just having anyone work on your liver. It is a very complicated organ. There are people on this board from almost everywhere. Ask here for a referral. I had scans done and though they did show a tumor in the liver on the right side, the one on the left was only found through ultrasound during surgery. So the surgeon had to know how to do a more complicated procedure after he was in there. You really don't want more than one surgery if you can avoid it. Just remember, you are the boss. Get a second opinion. jams

lynn1222
Posts: 105
Joined: Nov 2006

i am so sorry you are going through this, but god brought you to it and he will see you through it. you have to bieleve that. i am a stage 4 rectal cancer patient, when they diagnosed me i was told 2 years with no shot at remission, little did they know i went into remission less then a year from diagnosis. refuse to bieleve the numbers, you must be positive and bieleve that the lord will heal you.your husband can survive this, it is not a death sentence anymore, your husband can survive.
i will be praying for you hugs to you and your husband.

love, lynn

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

It sounds as if you are getting appropriate care; even if you could get a second opinion within your shortened time frame, I wonder if the decision-(colonoscopy, surgery)would be any different?
Your job right now is to get as healthy as you can in preparation for your up-coming procedure(s). You are barely healed from back surgery,and now about to go under the knife again..eat & rest well, exercise-(esp. cardiovascular exercise)and concentrate on activities that are peaceful and enjoyable. In this way you will have an easy surgery, and a rapid recovery. bud

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Char, and welcome. This diagnosis is always such tough news to hear; there is so much info to understand and many decisions ahead. I am now 3 years out. In addition to the cancer in my colon, I had 1 positive node. The CT scan may show if there is other involvement, and as others have said, that is important info pre-surgery; my positive node did not look suspicious on scan, which is not unusual.
There are many of us here who are stage III (lymph nodes involved) and stage IV (spread to other organs, usually liver or lung) survivors. You will get through this, one day and one decision at a time. Find people you trust who care about you and seek support from them. I let key family and friends and boss know; I told them that they could share the info as they saw fit. I did not discuss my diagnosis or treatment with curious acquaintances.
Be sure to have docs that you can talk to and be sure to get ALL your questions answered; I found it really helpful to bring hubby along to all the initial appts. It's a scary journey, but we've all been there. Stay strong and focused; keep us posted. All the best,
Judy

Patrusha
Posts: 488
Joined: Jun 2006

Just a note on the CT scan you're going to have. Yes, they are looking for anything that looks suspicious in your liver, lungs, pelvis or general abdominal area. In my case, the CT scan was a couple of days before surgery and it showed two spots on my liver and one very enlarged ovary. So then they did an MRI scan, which showed the liver spots to be benign tumors. Theay also did an ultrasound for the ovary and it was inconclusive. They removed the ovary during surgery and the ovary growth was a benign cyst. So dont fret if something "shows up." The more information they have going in to surgery, the better.

Also, very few people are opened and then just "sewed up" because nothing can be done. Those days are long gone, my friend. Be strong.

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