New to this...

Welcome
What kind of info are you trying to find? I also when through the research phase, no...not true, I am a researcher and do it constantly, but a lot of the information on line is outdated. Are you looking for ONC referrals?

You are correct, he is young and should fight, fight, fight. Stay positive and I personally would recommend a healthy diet.

Let us know how we can help.

Welcome
First of all, you have the right place for getting information on folk's various surgical and treatment experiences.

It is wonderful of you to take on this to help your friend.

You mentioned that he has had 3 confirmations of the diagnosis, so probably no question there. As to the surgeon he has, that is hard to tell. Does the surgeon have a good track record with the type of procedure to be performed? Does the surgeon interact well with the patient? Good communication is one of the primary things to look for. Does the surgeon have good contacts for any follow-up treatment?

I personally don't know about the Miami area as far as medical issues are concerned. I think most folks would recommend a Cancer Center facility over just a regular hospital. Not meaning Cancer Centers of America but those like MD Anderson in Texas.

Can understand your friend being overwhelmed. This diagnosis can knock anyone off their feet for a while. What type of surgery is he going to have? Will he have to have a perm or temp colostomy?

This board is made up of a group of caring and sharing folks, so ask away on anything at all and I am sure there will be folks willing to help with information. Be careful about what you read on the internet. Be sure to check the dates of any articles or studies because there is alot of old stuff lurking out there.

Keep coming back and let us know how things so for Jay and for you. Wishing him a sucessful surgery and recovery.

Marie who loves kitties

Welcome Richard!
You have come to the right place; there are a lot of knowledgeable people here + you will likely get the help you need.

Richard
I am stage 3 diagnosed in 2006, I live in Miami so if you send me a private message I can give you my e-mail and phone # and tell you about my colorectal surgeon he specializes in laparoscopy surgery, and tell you about my oncologist as well, I will be more than happy if I can help you and your friend in anyway.

forhailey said:

Hello Tina,
Thanks for the welcome and Thank you very much for sharing your husbands story. Jay has been told that he is Stage "3b", which I'm personally not really sure of the meaning and prognosis yet, he has a head start in the information area being diagnosed 7 months ago. I'm trying to catch up without asking him too much. I'm not sure of any history in his family but, I'll get it out of him eventually. When we spend time together, I don't want it to be dominated by the upcoming events.

Thanks for the other website, I'll take a look. I see what yourself and other people mean by "don't believe everything you read" there seems to be so many contradicting statements... maybe that's why I've had such difficulty in making progress in learning about the upcoming ordeal.

Thank you again, and I can't say it enough!

Very sincerely,
Richard

Second opinion
Is it to late for a second opinion? I know you say he is comfortable with the dr and that is important too. My partner was a bit hesitant with my surgeon too but I did feel comfortable with him, and all turned out good, but there is no harm in a second opinion, it cant hurt. Just a thought.

Good Luck, welcome, and your a great friend, the journey you are about to begin is long, painful, but it can be done and won! Good Luck to you my friend, we are all here if you need us.

HUGS
Beth

Richard -

I didn't finish reading all the posts, and will just jump in and
say a thing or two..... for what it's worth..?

Finding the best colorectal surgeon is more important than finding
a "good oncologist". The surgeon has to be well experienced
with cancer, and colorectal surgeons usually are. Other more
"general surgeons" do not get the experience needed to assess
the cancerous situation, and can too often try to save intestine,
when they should be removing it. Doing that can leave cancer
spores in areas that will be a major problem later.

All an oncologist can do, is attempt to figure out what type of
chemical he is allowed to prescribe that may kill the cancer
tumors he knows exist. He can attempt to regulate the dosage
to keep side effects low and the consequential damage to the
minimum, but he is at the manufacturer's peril regarding it all;
the manufacturer reports only the data they wish to report, regarding
their drugs, and the oncologist has to rely on that.

"Laparoscopic Gallbladder Surgery (Cholecystectomy)" is not
a qualifier for colorectal surgery. Although "Laparoscopic Surgery"
can avoid scars, and be somewhat less invasive, an open surgical field
allows a competent surgeon to actually see what CT, PET, etc
can not allow him to see. Often, other cancerous areas are found
and removed during the initial surgical process that was otherwise
not known about.

So again, a well experienced colorectal surgeon should be an
absolute necessity. Forget "bedside manner", many great surgeons
have little chit-chat and more substance. You want the operating
ability; the diagnostics and experience, not "feel good" patter.
Feeling good about a "kind and gentle, and comforting surgeon's
words", doesn't get rid of cancer..... a good surgeon does.

Your friend should not attend -any- office visits or conferences
without someone (like you) attending as a partner and advocate.

There's a lot of emotional feelings that happen during the discovery
stages, and it's difficult to listen and react at the same time. As a patient,
having someone else listening while your mind is doing double-time
regarding your possible death, is imperative. Take notes, use a
pocket recorder if you feel like it (although some physicians find
a recorder invasive and possibly intimidating)....

You would want to be able to fill in whatever information the patient
possibly missed. Knowing all the problems and nuances of the patient
can also be of help to the physician, since the patient often forgets
personal. data, medications, etc, in the flurry of emotional feelings.

Although many web site have "old data", almost 90% of the statistics
has not changed in over 40 years. The ability to diagnose and locate
cancer has improved, but the treatments are the same chemicals and
radiation as before. They have just found that lesser amounts can
have the same or better results. Finding cancer earlier results in the
time elapsed from diagnosis to death being longer, as well stated in
European medical periodicals. The "cure factor" has not changed.

As far as your friend having an advantage of being young? I don't
know where that notion came from, but if you go to some of the
other forums here that deal with youths with cancer, you will see
quite clearly that cancer is not age dependent, nor is it any advantage
to "being young". Cancer kills indiscriminantly; it knows no bounds.

So again...... Locate the very best colorectal surgeon you can, and get
second and third opinions from colorectal surgeons that are not of the
same group or organization. If there's time to "shop around", take this
time to do exactly that.

There is a place for "Laparoscopic Surgery", and a place for open
wound surgery. If this was a simple gall bladder removal and not a
search for cancer's reach, it probably wouldn't matter. You want
someone that can locate cancer, and not be afraid to remove it,
even if it means losing all of what it's into.

There's a decision: Remove as much of the area to get all the cancer out,
or leave most of the cancerous area in to save organ losses, and let an
oncologist try to kill the cancer.......

The choice should be obvious, and only a good, experienced colorectal
surgeon will be able to make it.

Good luck; better health.

John

Not all stories are good.


I had my obstruction and 4' of colon removed (along with my
gall bladder), and stapled closed. No ostomy needed!

A week later they had to re-open me to do the entire surgery
again, since the initial reconnection of the intestine had failed and
leaked. That left me with an ileostomy.

A week later, they had to re-open the wound again, due to
infection and badly healing skin.

I was in ICU for over three weeks, with a morphine drip 24/7,
and in the hospital for just over a month total.

My surgical wounds took almost six months to heal, preventing
chemotherapy treatments for that entire time.

I have more adhesions and hernias than I can remember, and
I'll suffer with them until I die.

Was the "bedside manner" good? Oh yeah! Were the surgeons
competent? One was, one wasn't.

If you have the time, get other opinions and double-check any
reviews if possible. Ask nurses and other physicians regarding
your choices of surgeons, and ask friends etc, as well.

There are a lot of bad ones, and many good ones, but "bedside manner"
shouldn't be the test of credentials.

The surgeon that operated on my wife's ruptured cerebral aneurysm
had the worst bedside manner I've seen. But he explained why
he did not believe in using the "new" technology of using a "coil" to
stop the bleeding. He was 100% correct in his evaluation.

As he was lifting the ruptured artery, he found that the artery directly
under the bleeding one, was also ruptured. It didn't show up on the
scans! Had he used a "coil", it would have taken hours to take the
instruments back out, drill into the skull. and attempt the fix. She likely
would have never made it.

Ask around, find out who claims they had the best colorectal surgeon,
and why. And whenever faced with major surgery, get a surgeon
that specializes in what you're being operated for.


Good luck....

John