Help for my son

vchildbeloved

Diagnosed 4/08, stage 3 colon cancer. About 5 weeks after my surgery, my 32 year old son was diagnosed with colon cancer, did surgery and 1 year of treatment. We both decided to take the gene test and of course we both tested positive for HNPCC. He actually was told today that he tested positive. He just informed me that his doctor is recommending that he have his entire colon removed. He ask for my opinion, and for the first time that I recall, I didn't know what to tell him. Does anyone have any advice on what I should tell him.

I also went for an ultrasound guided liver biopsy and was unable to do the procedure because the doc said that he could not see the spots that way. I am scheduled to go back tomorrow to do the biopsy with CT scan instead. Anyone had this happen to them. As you can see, my family needs help.

Thanks,
Val

John23

Val -
Before you go too far down this path...... You and your son
aren't using the same doctors, are you? You didn't say....

That aside, please get other opinions from other colorectal
surgeons that -are not- members of the same organization, group,
or association that your present doctors are members of. Go outside
of your geographical area, if you have to.

Second, third and more, opinions are welcomed by any good
physician. It provides them with new information about techniques
that they usually don't have time learn about otherwise. It also
provides them with the benefit of knowing when other physicians
agree or disagree with their summation.

You are entitled, and deserve, other opinions that are about to
effect your life and well-being, so please, get other opinions
before you go too much further.

As far as a complete colon removal? An experienced, and
competent colorectal surgeon will remove as much as he feels
necessary to prevent any progression or recurrence, and will
not base his decision on the aesthetics, or life changing effects
of having to live with an ostomy.

There seems to be too, too many surgeons wanting to save
their patients the effects of an ostomy, by leaving in sections
that might be cancer-carrying. They seem to feel that chemotherapy
or radiation to "get the balance" is better than having to wear
an ostomy appliance. To make vanity a priority and take such
chances with life, is (to me) foolish.

If your colorectal surgeon is well experienced with cancer, and
is suggesting the removal of the colon and the placement of a
stoma, he might be suggesting what's best. Get other opinions,
but -do not- allow vanity to take priority to life.

If you do accept the need for an ostomy, please ask again
here about it, and at the UOAA website.
The placement of the stoma is critical to how comfortable you
live after the placement of a stoma, and life with an ostomy,
in general.

Best wishes to you both!

John

herdizziness

My opinion
You both need to get new oncologists opinions. Stage 3 and the onc is recommending taking all his colon out because of a "possibility?"
Ultrasound guided biopsy on the liver? Mine was done with a scan and then a nice set up with the needle, and they sent the "pieces" to the lab and was then confirmed cancer.
Did the surgeon agree with the total removal of his colon?
I highly recommend, you have your local tumor board look at your son's case before any surgery, this is a board of many familiar with the particular cancer and they make recommendations that are normally sound.

Patteee

The only thing I can tell
The only thing I can tell you is a snippet of what my colorectal surgeon told me. Please take it with a grain of salt. I too had the genetic testing as part of initial testing at Mayo pre resection surgery. She wanted to delay surgery until she got the results back as she put it, it would save me additional surgery. That if my cancer was genetic she would recommend taking the entire colon, if not, just a resection. That indeed the genetic link would definitely mean further cancerous growths in my colon in the future. That the surgery was preventivie. My understanding is this what they recommend with any genetic cancer issues- breast and ovarian come to mind.

Mine was not genetic, so not an issue. But I was prepared to lose my entire colon. I defintely would recommend that both you and your son as well as other family members, if you haven't already, be working with a surgeon and oncologist who specializes in this genetic link, that it really changes the dynamics of the cancer treatment.

Lovekitties

I agree
I agree with the others here. You and your son both need to have additional opinions regarding what treatments are best to consider.

If you are able you should get a second opinion from one of the top Cancer centers:

Top 10 Cancer Centers of United States
• Memorial Sloan-Kettering Cancer Center, New York, New York
• University of Texas, M. D. Anderson Cancer Center, Houston, Texas
• Johns Hopkins Hospital, Baltimore, Maryland
• Mayo Clinic, Rochester, Minn.
• Dana-Farber Cancer Institute, Boston, Mass
• Duke University Medical Center, Durham, N.C.
• Stanford University Hospital, Stanford, Calif.
• University of Washington Medical Center, Seattle, Wash.
• University of Chicago Hospitals, Chicago, Illi.
• UCLA Medical Center, Los Angeles, Calif.
• Roswell Park Cancer Institute, Buffalo, New York

Even if it is out of pocket for this process, it could possibly be a life saver for you both.

Marie who loves kitties
Please stay in touch and let us know how things go for you and your son.

vchildbeloved

herdizziness said:

My opinion
You both need to get new oncologists opinions. Stage 3 and the onc is recommending taking all his colon out because of a "possibility?"
Ultrasound guided biopsy on the liver? Mine was done with a scan and then a nice set up with the needle, and they sent the "pieces" to the lab and was then confirmed cancer.
Did the surgeon agree with the total removal of his colon?
I highly recommend, you have your local tumor board look at your son's case before any surgery, this is a board of many familiar with the particular cancer and they make recommendations that are normally sound.

Is the local tumor board a
Is the local tumor board a part of the hospital or is there one for your particular state. Sorry for the ignorance?

John23

vchildbeloved said:

Is the local tumor board a
Is the local tumor board a part of the hospital or is there one for your particular state. Sorry for the ignorance?

Tumor board...
From Marion Wabstars dictionary

Tumor board:
[noun] A board with a big lump in the middle.

Seriously?

I had never heard of a "tumor board" prior to reading of them
here on this forum. Physicians I have asked here, say some
hospitals have an "active" one, some do not.

I was brought in on a gurney, went to the ER, and had my
"emergency surgery", that -absolutely- had to be done that
day, delayed for three days, until they finally shipped me off
to a different hospital across town. The only "tumor board"
I may have had, was the one they laid me out on for that trip.

You can get a better understanding here:
The Role of a Tumor Board in Cancer Treatment

Oh, by the way..... Get a second opinion.

Good health to you and yours!

John

snommintj

Lovekitties said:

I agree
I agree with the others here. You and your son both need to have additional opinions regarding what treatments are best to consider.

If you are able you should get a second opinion from one of the top Cancer centers:

Top 10 Cancer Centers of United States
• Memorial Sloan-Kettering Cancer Center, New York, New York
• University of Texas, M. D. Anderson Cancer Center, Houston, Texas
• Johns Hopkins Hospital, Baltimore, Maryland
• Mayo Clinic, Rochester, Minn.
• Dana-Farber Cancer Institute, Boston, Mass
• Duke University Medical Center, Durham, N.C.
• Stanford University Hospital, Stanford, Calif.
• University of Washington Medical Center, Seattle, Wash.
• University of Chicago Hospitals, Chicago, Illi.
• UCLA Medical Center, Los Angeles, Calif.
• Roswell Park Cancer Institute, Buffalo, New York

Even if it is out of pocket for this process, it could possibly be a life saver for you both.

Marie who loves kitties
Please stay in touch and let us know how things go for you and your son.

No way
There is no way I would get my colon removed on a chance. Get a colonoscopy every year, keep an eye on things. If things get worse in the future maybe a complete removal might be in order but I would have mine cut up a few times before removing it.

pepebcn

John23 said:

Tumor board...
From Marion Wabstars dictionary

Tumor board:
[noun] A board with a big lump in the middle.

Seriously?

I had never heard of a "tumor board" prior to reading of them
here on this forum. Physicians I have asked here, say some
hospitals have an "active" one, some do not.

I was brought in on a gurney, went to the ER, and had my
"emergency surgery", that -absolutely- had to be done that
day, delayed for three days, until they finally shipped me off
to a different hospital across town. The only "tumor board"
I may have had, was the one they laid me out on for that trip.

You can get a better understanding here:
The Role of a Tumor Board in Cancer Treatment

Oh, by the way..... Get a second opinion.

Good health to you and yours!

John

Here any major hospital has it !
as they have an ethic committee too, I suppose is the same there isn't ?
Hugs!

JTL52

snommintj said:

No way
There is no way I would get my colon removed on a chance. Get a colonoscopy every year, keep an eye on things. If things get worse in the future maybe a complete removal might be in order but I would have mine cut up a few times before removing it.

HNPCC
I have the genetic defect. I have annual colonoscopies along with endoscopes,plus a CAT scan.
I think the preventive colon removal is for people not willing to keep up with the close screenings on a regular basis.
I would not have comlete colon removed without a second and maybe third opinion.
Best wishes to you and your son.
I have been cancer free for over five years after having three tumors removed. One uterine and two colon.
Janet

bruins1971

snommintj said:

No way
There is no way I would get my colon removed on a chance. Get a colonoscopy every year, keep an eye on things. If things get worse in the future maybe a complete removal might be in order but I would have mine cut up a few times before removing it.

Agree
There is no way I would get my colon removed unless the doctors say it's necessary to save my life. I had a foot of mine removed in March and now they will just watch me every year with colonoscopies.

wesparris

Colon Removal
I had my entire colon removed in September 2007. All that is left is 7 inches of rectum. The procedure I had is called an IRA - which connects the small intestine to the rectum. This has been VERY successful for me. The only lifestyle change is that I go to the bathroom (#2) about 4-5 times a day versus once a day before. Other than that, nothing...I eat whatever I want, and lead a very active lifestyle. I had the procedure done at Mt. Sinai in NYC by Doctor Steinhagen, who is the chief colorectal surgeon. He is an expert at this procedure, and I would highly recommend him. With a genetic mutation such as you mention I would recommend listening to the doctor, as tumors from that particular genetic situation are fast developing and very aggressive...also they tend to be harder to detect because they are more likely to be flat. The IRA procedure that I got saved my life, and while I still have to get the remaining rectum checked every year, it was a great option that has worked for me.

Hope this helps.

Wes (45 year old married father of 3 in Connecticut).