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My wife has been diagnosed with coin cancer.

Larryv2.0's picture
Larryv2.0
Posts: 10
Joined: Oct 2007

She is 35 and we have two home schooled daughters 7 and 3.

It all started in May with constipation we thought it was her diet and the constipation was mild. By mid June she was having increased constipation and pain practically everywhere between her ribs and hips. She went to our Dr. but could only get in to see the Nurse Practitioner. The Nurse Practitioner did an ultra sound and found a kidney stone and she also said that she had Colitis Because she could see "inflammation" in her coin.

We went to a urologist and the Ray confirmed a kidney stone. she was given some meds. and passed the stone. The passing of the stone relieved much of the pain but in July we had to go to the Dr. because the constipation and pain continued and steadily increased. The Dr. (a real Dr. this time) ordered a CT Scan and it confirmed his suspicion that she had Gaul Stones. The Gaul Balder was removed in mid July (I cant remember the dates) and after sufficient time for recovery, still no relief.

By mid September she was back at the Dr's' office. This time he said that it could be irritable bowel or colitis and sent her to have a scope (colinoscpy?) to help him make a diagnoses. The apt with the scope Dr. (I don't remember what they are called) was for OCTOBER 31ST! that was the earliest open appointment available!

After a very bad weekend (lots of pain) we pulled some strings with a nurse and got her an appointment for the following Wednesday (9/26) and called her Dr. who finally ordered her some medication for the pain/spasms. the medication worked and the pain and constipation were gone. I am thankfully that he was reluctant to prescribe medication because we may have not found out about the cancer for a long time.

The Colin scope Dr. told us after the procedure that he was "virtually 100% sure she had Colin cancer and scheduled us to come in the following Monday for the results of the biopsy and blood tests. We pulled some more strings and got the results the next day by phone, and scheduled an appointment for a PET Scan and a surgeon for October 2nd. The blood tests did not indicate any elevated something or other and no enzymes that would indicate that it had spread to the liver.

The PET Scan? the surgeon said that it didn't indicate that the cancer had spread but when I asked "so this is stage 1?" he said that he couldn't know for sure until after the surgery. The first available date for surgery is October 16th.

We called the Dr. who made the initial diagnoses and asked for another referral because we weren't comfortable letting it go that long. He said that that was a reasonable time and that the surgeon was very good and that he didn't think we could get in anywhere else faster.

I called another Dr. and the earliest apt we could get was on the 10th, I haven't called him back.

What should I do?

apache4's picture
apache4
Posts: 272
Joined: Jul 2007

Welcome to this discussion board. There are many wonderful people here that will share their experience with this and offer hope along with their experience. I would say,I could be wrong, that a few days will not make any difference in the actual diagnosis. What may be there will not change in just a week or so. I know that this is a terribly difficult time for your family and it hasn't helped having so many diagnoses. Hindsight is not good. You can't worry about what has happened in the past but go forward hoping for the best. The surgery will give you and the doctors a definite answer. One thing I learned about cancer is that everyone is so different as to how their cancer reacts to treatment,how many treatments, etc. etc. Each day is an act of faith to be patient, trust the doctors and each other to get through this. A positive spirit is a wonderful weapon against this disease. I pray that her surgery goes well and that the news will be the best possible.

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi - Welcome to our site, but I am sorry you have to be here. It sounds like your wife has been through a lot.

It is scary to wait, but waiting 2 - 3 weeks for colon surgery is not uncommon. I know how you and your wife feel, but given they don't think she on the verge of a total bowel obstruction, there is time to gather data and give the surgeon more information before you actually go into surgery.

In addition to the PET, she should probably be getting CT scans of abdomen and pelvis, at least, if not also chest.

Find out where your wife's tumor is, whether or not a colostomy is needed and ask whether or not surgery can be done laparascopically (if so, make sure the surgeon is experienced in this).

We'll be thinking of you. When you know more, come back and let us know.

Take care,
Betsy

vman1300
Posts: 80
Joined: Sep 2007

1st, I am so sorry that you have to find us here, but rest assured, we are in this battle together.

As a newbie mysely, DX on August 14, 2007 at 35 also now 36, No history of CC in my family. Surgery on August 20th.

It has been a roller coaster ride over the last few weeks. I started chemo today and it is another step to my Full recovery.

Keep you wifes attitude as positive as possible and remember WE ARE here for you if you need anything.

Believe,

Kevin

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Larry,
Welcome to the forum. I was diagnosed at the age of 31 and now I am thankful to say, I am 37! There are many very young survivors on here, you would be surprised. We are all led to believe that this is a disease that affects older people, but your wife is far from alone!
I know this is a scary time for you both, but as the others have said, a couple weeks is not going to make a difference. It takes years and years for a colon polyp to become cancer, so a few more days is not going to matter. It is very good news that her liver enzymes were normal and nothing more showed up on her PET scan. I hope that she will have no lymph nodes involved and that the cancer is confined to the one tumor.
Please post again once you know more, and if you have confidence that this is a good surgeon, then just try to hang in there until the 16th.
Best wishes,
Susan

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I agree with the others. One of the few good things about this type of cancer is that it is usually pretty slow growing. ALSO, if, caught, it is one of the most treatable!!!!!

I am sorry that your wife had to go thru so much to finally get a diagnosis. I had so much pain, my tumor was pressing against my tailbone, so I can relate to her pain.

The waiting is the hardest. But, try to busy yourselves with something else. I agree with Susan, if you trust this doctor, waiting 13 days is a good idea. I LOVE my gastro...she saved my life (altho, now, she admits that she thought I was a drama queen...lol).

Welcome to the board, take a deep breath. Keep us posted...

Hugs, Kathi

hopefulone
Posts: 1048
Joined: Jan 2007

Hi and welcome and as others have said sorry it's under these circumstances. Waiting til mid October is hard , but as others have said not unusual. Hubby waited 3 weeks for his also as the surgeon was going on vacation and said he wanted to be sure he was there the whole time hubby was recouping. We felt better doing that rather than rushing since we knew he was a good surgeon. Keep us posted and prayers for a great outcome. It's great that the PET showed no mets. As Betsy said , a ct should also be done. God Bless
Diane

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

Larry,
Welcome to the dicussion board. Sorry we have to meet like this but like the others said, this is the place to be.

I was dx'd with colon cancer last Nov. and was schedueld for surgery 3-4 weeks afterward so it's okay.

Unless you don't trust your doctor, there is nothing wrong in getting a second opinion.

As far as the PET & CT Scan, mine did not show anthing and my CEA tests are always very low (whichis good). So...Until they did the colonosopy, I didn't know I had cancer until they found the tumor. It was caught fairly early. Stage III (which means it got in 2 lymph nodes).

Hopfully your wife's is early , too.

Yes..write down all kinds of questions (like they are saying in the other posts) to ask your doctors. They won't know what stage until the surgery, though.

And again. the scary part is right now when you don't know a whole lot, yet.

We are all with you and thinking of you. Give my best to your wife. Let us know what you decide to do and come back on dicussion board.

Hugs to you and wife.
Claudia

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

One of the biggest mistakes is to try and rush into surgery before knowing all the facts and having all of the scans and having a doctor who comes highly reccommended for whatever the scans show. If there is other organ involvement, then the surgeon needs to be very knowledgable about those particuar organs so that he can take care of as much as possible while he is doing the surgery, and then not have to go back for multiple surgeries. Take a deep breath, access the data, find a great doc, find another place to educate your daughters for the next few months anyway, check your insurance, and give your wife the support you feel she needs(do not let this disease affect your marriage). Yes the caregiver gets tired of all of this, but you sound so caring and we will support you through this awful time. Also, I hope you have others, God, family and friends to help you. You are on the road to recovery and it happens on this board everyday, so hang in there.
Jo Ann

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi Larry,

As the others have said, be very careful and learn, learn, learn. My original diagnosis came from a general surgeon close to my house who wanted to do surgery for a rectal tumor right away. My brother, an ear, nose, and throat surgeon talked me into getting a second opinion at one of the 3 comprehensive cancer centers in my state. It took a month of testing and appts with oncologists and oncological surgeons (after I cancelled the original surgery) but the results were it had spread and I started a full body treatment first (chemo).

There is no doubt in my mind that if I had allowed the general surgeon to do the colon resection (they did not see the liver/lung mets
in their testing: 2 CT scans, barium enema, and loads of blood work) that I would be dead of dying right now. Instead I am currently NED (no evidence of disease) and have been since Oct. 2004.

I can not stress the importance of seeking out the best care possible. I also believe very strongly in second opinions. Try to get one before the scheduled surgery if you can.

Good luck to you all and please keep us posted and feel free to ask all the questions you have, that is what we are here for; helping each other.

Lisa P.

rmap59
Posts: 266
Joined: Jun 2007

Dear Larry,
Your wife is very lucky to have a husband that cares enough to seek out help and information. I was dx in April 07 and found a wonderful surgeon who I trusted with my life. I did think about a second opinion but prayed about it and decided I couldnt do better. I know you all are scared but this is a very treatable cancer and the support you can get from this forum is awesome. Be proactive in your wife's care and that will help her alot. Ask for help from others, they want to help, this took me a long time to realize. God Bless you all, Robin

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Hi Larry, Sorry your wife and you received this news. I did not get a 2nd opinion until 6 months after my resection (no chemo was reccomended) and I do wish I had done more checking.

My surgery was fine but I did not research what to do next, I just went back to life as usual and tried to ignore that this ever happened.

I hope you and you wife can find peace in this journey. Colon Cancer is not by any means a death sentence. Surgeons are great these days and the chemo drugs are far more potent with less side effects that years ago. you will find endless help and hope here.
best of luck on the surgery
Mark

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Kevin,

Your wife is blessed to have you as her husband and advocate. As others have said, try and get as much information as possible. Please keep us posted on your wife's progress and know that we are here for you both.

Hugs,

Kay

Larryv2.0's picture
Larryv2.0
Posts: 10
Joined: Oct 2007

Thank you all for your advice and encouragement.

We are going ahead with the surgery on the 16th and will then meet with at least one other coin cancer specialist, to discuss what, if any, steps need to be taken.

Based upon conversations with the Dr's' and the PET and CT scan, we feel confident enough with the decision to remove the tumor on the 16th. The Dock said that she would not need a colostomy bag and that he could do the surgery liproscopicly.

I hadn't thought of calling the insurance co and I did that today, We can see as many Dr's as often as we want, including followup's PET Scans etc. with a maximum out of pocket expense of $1,000. pr year.

I also didn't realize that we could get a second opinion after the surgery. Post surgery treatment is crucial and we want several opinions before we decide on a course of action.

Thanks again. Larry

Larryv2.0's picture
Larryv2.0
Posts: 10
Joined: Oct 2007

Michelle was diagnosed with Peritoneal cancer, that originated in her colon in October 07 and was told that there was no hope. She was given 18-36 months to live.

We found out about IPHC and after six months of chemo, she received IPHC and we are now being told that she has a 64% chance that the cancer will not come back..ever!

You can visit Michelle's CaringBridge site at http://www.caringbridge.org/visit/michellelanham

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