Husband diagnosed today...a few questions

[Daphne]

Hi,
My husband was diagnosed with colon cancer today. He is 37, I am 32 and we have a 4 month old daughter. Needless to say, I never expected to have to deal with anything like this at such a young age.

He has had stomach pain since last fall. It got so bad that he went to the doctor and for the last few months he has taken pain killers almost daily while they try to figure out what was going on. He had a CT scan and upper (or lower?) GI over the last couple of months, both of which came back "normal". He had a colonoscopy today and the cancer was found. A polyp was also removed. All the doctor told us was that it appears to have been there for some time and he was shocked nothing showed up in the other tests. We meet with a surgeon next week and are waiting for the call to tell us when and where to go.

My questions are:
1. We live just outside of Boston, so I know there are a lot of world-class doctors in our area. Can anyone recommend a good oncologist/surgeon for colon cancer in or around Boston?

2. Is the oncologist the one that does the surgery? Or are these 2 separate people?

3. They are going to cut out part of his colon and reattach it. What is the expected hospital stay for something like this?

Thanks for any info you can give.

[NWgirl]

First of all let me say how sorry I am that you have had to find this group. That said - welcome. It's great you found us early on - there are lots and lots of knowledgable and caring people here who can help you as you and your family go through this journey.

We have a lot of members on this group so I'm sure you will get some info on good surgeons in the Boston area. Since you're asking, be sure to find a good colo-rectal surgeon vs. a general surgeon. Colo-rectal surgeons specialize in colon related surgeries - it's all they do, so they have much more experience in the type of surgery your husband will be having. That's really important.

The surgeon will just do the surgery. The oncologist is the cancer doctor and will handle any chemo that your husband receives. Generally these doctors work very closely together to coordinate your care (or at least mine do). Depending on how they stage your husbands cancer will determine what type of chemo (if any) is required and when. Before they come up with a plan the surgeon will usually coordinate lots of tests - CT's PET scans, blood tests - not sure what else. I can't remember the technical terms here - but they will come up with basically their "best guess" on the staging of the cancer before surgery. But it's the actual pathology from the surgery that determines his true cancer stage - where they remove the tumor and look at the tumor and surrounding tissues, lymph nodes, etc. under the microscope.

From what I've read on this site, the hospital stay for this surgery is minimum 7 days. Mine was 9 days initially, released for 24 hours, then back for another 7 day stay because I couldn't stop vomiting. But that doesn't seem to be the norm and even my doctor said this was really an exception. My body just didn't want to get the plumbing going again so we had to start from scratch so to speak when I was readmitted and just take it really slowly.

37 is very young to get cancer but you will find many of us on this board who were diagnosed in our 30's, 40's and some even in their 20's. If your husband has any siblings, please have him contact them and tell them they need to get colonoscopy's too. Some cancers are genetic/hereditary and other times it's just bad luck. Best for any brothers/sisters to get checked now just to be safe.

I know how overwhelming this all is. Please know that we are here to ask questions of, vent to, cry and laugh with.

[seussfan]

I am so sorry this has happened to him and your family. I am not familiar with any of the doctors in your area, but can try to answer your other questions.

The oncologist is usually separate from your surgeon. Since it is not an emergency situation, you will get to meet with a surgeon - most likely a surgeon who specializes in gastro surgery.

What part of his colon are they removing? I had part of my ascending colon removed and my small intestine had to be reattached to my large intestine. I was in the hospital for 12 days. Keep in mind - I went to the emergency room...spent 24 hours with them giving me blood infusions before I had emergency surgery...so if you count from the day of surgery, I was there for 11 days. They are going to want to get him out of the hospital as soon as they can because - as my sister in law the nurse would say - the hospital is one of the most dangerous places you could be - too many germs.

Hospital stays can vary from person to person. His surgeon will be able to give you a better idea of what to expect for him.

[marian]

This diagnosis is difficult, and I know you have a lot to learn, but you will. You live in a wondeful place, the Dana Faber Center has a great reputation. Their strength impacts many other medical facilities in the area. Trust your heart, you'll know when you've met the doctors that are meant for your husband.

I'll repeat what the others have said, choose a good colorectal surgeon. It's difficult surgery with an average hospital stay of 7 days. There are so many details that the specialists do without thinking that a general surgeon might not even know about. You'll be choosing an oncologist too, that Dr will be mapping the treatment plan. When you meet the first Dr who "fits", you'll discover that the references often fit too. Although this diagnosis feels urgent, you do have the time to learn and get all the opinions you need.

[bdurant]

I am also sorry that your family now faces these challenges. This is a good board for support and information. Lately, there has been some bad news and we share the sadness of and the loss of some very courageous members. It's hard for all of us to face such bad news; but, remember there are success stories. I knew a dear lady who was diagnosed as she was giving birth to twins. She went to beauty school when they were 6 years old., then started her own business. The bag was just an inconvenience to her, it never stopped her. She remained positive, friendly, and beautiful. She survived and raised her 2 beautiful daughters.
We are all praying for your family. You have made a wise choice to research and look for the best options. I hope you will go to a major cancer center which has the latest technology and a whole team of doctors.

[meighan]

Hi and welcome to the colon club.........lots of great people and much needed information especially for the "younger crowd". My husband was 35 when diagnosed and our youngest daughter was 6 months old. I remember those first days like they were yesterday but they weren't they were THREE years ago and we are now planning a trip to disney for April........ you can get through this. We did better then i ever thought we could have. We live in the seacoast of NH so not far from you and I know many people who go to Dana Farber and can't say enough about it. We originally were scheduled locally here in NH (which we postponed and then canceled) since my family is from Ct i called for a consult at Sloan in NYC and my husband ended up having surgery there, this worked for us with having family nearby to watch the kids. We were in Sloan for 10 days and received staging of the cancer a couple days after surgery and he has diagnosed a stage III. It is normal to start looking online for staging information and understanding it is important but DO NOT look at the statistics they are outdated and many of them don't take into consideration the new drugs available.........that was a frightening time when i read all that online and had no one to talk to. Your MD's will be very truthful with you so listen to them not those outdated statistics (my advise). His chemo was very standard and organized through sloan and our local hospital. We were able to come home let him recup. for about 5 weeks and then chemo started. Stage I usually no chemo, stage II appears to truly be a discussion between your MD and yourself taking much into consideration. Stage III and IV chemo but different protocals. Chemo was a scary word at first but we did so well and he worked through chemo and did relatively well getting hooked up friday and then a nurse to the home on sunday to unhook everyother week for 6 months..........tolerated well and your husband may not even need this, just to let you know if you find out he does it is doable:>) Your surgeon is just that the surgeon to do the operation and we still follow up with him in NYC every six months (usually quick appointment and we love NYC) Your oncologist takes over after surgery, the first time i met one was the day of staging he came in with the surgeon and took over treatment plans and arranged needed treatment up here with this oncologist, follow up tests and labs all done through them. I would highly recommend at least trying to have a consult at Dana Farber if able as they are the specialist and that is all they do they have seen it all .....but that is not to say you can not have a GREAT doctor at say mass general, like you said you are lucky to live where you do. I hope to not have overwhelmed you, I hope you see you can do this and still live the life you thought, please come back and ask anything there are lots of great people who have been through it ready and willing with lots of good advise. Good luck and share your thoughts and fears with eachother it was hard but once we did it was soooo much better. Good luck.

[John603]

Daphne,

I live in Southern NH and I work in Chelmsford, MA. My medical team is based in Manchester, NH and I would highly recommend them. I also got a 2nd opinion with Dr. Jeffrey Meyerhardt at Dana Farber and I thought he was very knowledgeable. He wrote the 2007 study on diet and colon cancer.

For surgery I was able to to have laparoscopic surgery and I was out of the hospital in 3 days. If they had to do open surgery I probably would have been in for a week. My surgeon was Dr. Connie Campbell who works out of Catholic Medical Center In Manchester NH. She is fairly young and really knows what she is doing with a scope. My bowel function is better post-surgery than it was before surgery.

[John in CA]

My heart goes out to you and your family. Let the diagnosis settle in for a few days. It may seem impossible right now, but you and your husband will find a way to live well after the cancer diagnosis.

I had laparoscopic surgery with a partial open (the tumor was close to my rectum, so the surgeon needed the open incision for the reattachment). My surgeon told me to get out of bed as soon as possible and to walk. I stood the evening after the surgery, went for walks to the hospital garden then next two days, and was home three days after the surgery.

I took my dog for walks every day after I got home, and I was back at work full time 16 days after surgery.

All of that helped keep me engaged and working toward health.

My best wishes to you and your husband.

John

[Edward]

The surgeon is the key. Find out if your surgeon is a specialist or a general surgeon!

[marysue]

Daphne,
My heart is with you, your husband and family. I too had stomach pain - which was diagnosed as diverticulitis. I had a colonoscopy as follow up where they found a large tumor in the sigmoid colon (couldn't get past it to see the remainder of the colon). I had a CT scan before surgery and my tumor didn't show up either.

I had a fabulous surgeon (although he is a general surgeon) - he made me feel very confident that we would take care of the disease so I could get on with life! My hospital stay was 6 days. I walked alot in the hospital, but never had a bowel movement there. My home recovery took a good 6 weeks before I felt like I could lift my little kids etc.

My cancer was stage II with no lymph node involvement - I was very fortunate. My oncologist recommended a clinical trial that is trying to pinpoint the type of stage II tumors that actually benefit from chemo. I did not have to undergo chemo after they examined my tumor via the study. I am now monitored with blood work and frequent colonoscopies.

This disease is beatable. Find a great doctor and really on friends and family for support over the next few months. Ask questions here - this is a great resource with great people.

Best to all of you!
Mary Sue

[salysue]

I, too, am sorry that you have to be here.....but you have found a great place for information. I would definitely recommend a surgeon who specializes in colorectal surgery. If necessary, seek a second or even a third opinion. In my husband's case, we sought a third opinion and found a specialist who had a definite plan and lots of experience. Good luck to you on your journey.

[MattFoley]

I'm sorry to say welcome to the club.

In your area you should have the luxury of finding colorectal surgeons specializing in these procedures. I just had a tumor removed from my sigmoid colon on 1/30. I was in the hospital for 7 days, back to work part time in less than 2 weeks and full time after the 2 weeks, but, I work a desk job.

You oncologist will be a different doc and you may even talk to a radiation oncologist, yet another doc, depending on the situation.

Many of us here are young. I just turned 40. This is unexpected. But what are your going to do? You go get the best medical care you can, deal with it, and move on.

Good luck to you.

[GEGE]

We are starting down this road with you. Buddy diagnosed with colon cancer Thurs the 26th of Feb.2009 Him:67, me:53, 3 month old Grand-daughter. Live in the Dallas TX area and have been referred to Dr Clark Odom/Presby of Dallas. Trying to learn all I can and waiting...

[mtnman]

Every one says each person is different, but my stay for resection was 6 days in on friday out following thurs, I had very few problems after release, back to work 3 weeks to the day, started chemo 2 weeks later, just finished 2nd series of chemo. so far so good. I have been lucky. good luck, positive attitude makes it.
stage IIIc, 6/19 nodes, mFOLFOX6 started 2/10/09, M/45

[caligirl2]

Hi Daphne,

I am sorry to hear about your hubby's Dx. It is a very overwhelming time afterwards. After my hubby's dx all I did was google every question I had, that is how I found this wonderful site.

My biggest concern was the stage of cancer, the exact staging for my hubby was after the colectomy. But prior to surgery, they gave him a stage 3, but it was after surgery when they realized how many nodes were involved, and it was then a 3C. So read as much as you can here. And do a search on here with regards to "stages" there is so much information here you can be on here all day. There are 4 stages and to boot they add a,b,c to the stages depending on what the drs find.

Stay strong and take lots of notes at the drs office, and bring another person with you, just in case you feel you may zone out from the stress...that is what we did. Turns out his notes were much better than mine.

I wish you luck and keep us all posted, you have lots of support here.