New to this...

forhailey

A friend of mine (Jay) has just confided in me that he has been diagnosed with Colorectal cancer stage 3. He is a bit overwhelmed so, I have volunteered to go through this with him and help him in every way possible. He has had three different confirmations on his diagnosis and has his first surgery scheduled for 9/16/2010. I am very concerned that he may have chosen his surgeon in haste. He is 25 and has youth on his side and I want him to have every other benefit possible... best doctor, best facility, best support group and so on.

I have been reading everything that I can get my eyes on for a week now and I'm getting frustrated and feel like I'm going in circles and not learning enough, if someone could give me an idea of where to start or any direction... i could not be more greatful. We're in Miami Florida if that matters.

Thank you, any and all for taking the time to read.
Sincerely,
Richard

If I'm posting in the wrong area, I sincerely apologize.

Nana b

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the research phase, no...not true, I am a researcher and do it constantly, but a lot of the information on line is outdated.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.

forhailey

Nana b said:

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the research phase, no...not true, I am a researcher and do it constantly, but a lot of the information on line is outdated.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.

Thank you for your reply and
Thank you for your reply and valuable time Nana b. A recommendation for a good Oncolgist would be a great start. Healthy diet is a no brainer for us, we both live a healthy lifestyle although we're trying to put some more weight on him... difficult as his appetite is not the best.

As I said before... any information is greatly appreciated and I can't thank you enough.

Thank you again Nana b.
Sincerely,
Richard

Lovekitties

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

HollyID

Richard, this is the right place
and I'm so sorry that your friend Jay is having to go through this. I'm sure he's scared and not knowing what to really do.

As far as surgeons go, he might want to seek out a colorectal surgeon. I didn't have one, and mine did wonderful, but he's done a LOT of colon surgeries and I felt very confident in him. He might want to ask his surgeon how many colon surgeries he's done like the one he's planning on Jay.

Tell Jay if something doesn't feel right, look elsewhere. Trust his gut feeling and seek someone who does feel right. Including his oncologist or Onc. Some oncologists are WONDERFUL and some need to be kicked to the curb. It never hurts to get a second opinion. NEVER assume that what one physician tells you is right. If one physician balks at Jay getting a second opinion, he definitely needs a second opinion. It really helps when one physician can consult with another and come to a great plan of care for the welfare of the patient.

Ask Jay if there are specifics he wants to know about. If nothing else, this board is very supportive and very knowledgeable about CC.

Love and Hugs

Holly

AnneCan

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.

forhailey

Lovekitties said:

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

Thanks for the reply
Thanks for the reply Marie,
I've been reading the about the surgeon on a website and that's why I'm a bit concerned. The doctor didnt score very high but, there weren't very many posts. I know that even the best doctors can't please everyone so I can't condemn him for what one person says, I just want to be sure. Jay seems to feel comfortable with him although he did come home a nervous wreck because, it seems the surgeon scared him wit the surgery details and the amount of pain afterward. The surgeon said that he was having a surgery that has the most painful recovery and that he would esperience the most extreme pain that he has ever encountered. Now, I'm all for honesty but, I thought that his approach was... not the best and Jay wasn't even sure that he wanted to go through with the surgery... he said he can't tolerate pain... I told him I was allergic to pain and break out in tears. My sense of humor is really all I have to offer at the moment but, thanks to people like yourself and others that are and will be responding... I'll have more.

I will keep you informed of his ongoing treatment and his complete victory. Jay is a very giving person and I'm sure that he will be happy to here about this board and also contribute to it in the near future.

Time is the only thing that I cannot give back so I sincerely thank you for giving yours.
Thank you again Marie

Sincerely,
Richard

betina61

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.

Lovekitties

forhailey said:

Thanks for the reply
Thanks for the reply Marie,
I've been reading the about the surgeon on a website and that's why I'm a bit concerned. The doctor didnt score very high but, there weren't very many posts. I know that even the best doctors can't please everyone so I can't condemn him for what one person says, I just want to be sure. Jay seems to feel comfortable with him although he did come home a nervous wreck because, it seems the surgeon scared him wit the surgery details and the amount of pain afterward. The surgeon said that he was having a surgery that has the most painful recovery and that he would esperience the most extreme pain that he has ever encountered. Now, I'm all for honesty but, I thought that his approach was... not the best and Jay wasn't even sure that he wanted to go through with the surgery... he said he can't tolerate pain... I told him I was allergic to pain and break out in tears. My sense of humor is really all I have to offer at the moment but, thanks to people like yourself and others that are and will be responding... I'll have more.

I will keep you informed of his ongoing treatment and his complete victory. Jay is a very giving person and I'm sure that he will be happy to here about this board and also contribute to it in the near future.

Time is the only thing that I cannot give back so I sincerely thank you for giving yours.
Thank you again Marie

Sincerely,
Richard

What the heck?
The 'bed side manner' of Jay's surgeon SUCKS! Doesn't his doctor belive in pain medication?

First of all, I had tumor removal, rectum and anus removal, hysterectomy and a colostomy done all at one time. Sure there was some pain but my doc had me on a morphine pump and that pretty much took care of that while I was in the hospital. Second of all, when I came home I slept in a recliner for several weeks because that was the most comfortable place but I was off all pain meds in a couple of weeks. The pains I did have were mostly related to the staples which were removed in about a week from coming home.

If there is any possibility of getting another surgeons opinion I would certainly recommend it. While most of us don't want things sugar coated regarding our medical treatments, we sure as heck don't expect to be scared spitless either!

Keep in touch and give Jay best wishes for painless as possible surgery and recovery.

Marie who loves kitties

forhailey

HollyID said:

Richard, this is the right place
and I'm so sorry that your friend Jay is having to go through this. I'm sure he's scared and not knowing what to really do.

As far as surgeons go, he might want to seek out a colorectal surgeon. I didn't have one, and mine did wonderful, but he's done a LOT of colon surgeries and I felt very confident in him. He might want to ask his surgeon how many colon surgeries he's done like the one he's planning on Jay.

Tell Jay if something doesn't feel right, look elsewhere. Trust his gut feeling and seek someone who does feel right. Including his oncologist or Onc. Some oncologists are WONDERFUL and some need to be kicked to the curb. It never hurts to get a second opinion. NEVER assume that what one physician tells you is right. If one physician balks at Jay getting a second opinion, he definitely needs a second opinion. It really helps when one physician can consult with another and come to a great plan of care for the welfare of the patient.

Ask Jay if there are specifics he wants to know about. If nothing else, this board is very supportive and very knowledgeable about CC.

Love and Hugs

Holly

Thank you for the reply
Thank you for the reply Holly. The surgeon he has is a specialist in "Laparoscopic Gallbladder Surgery (Cholecystectomy)" I now have more homework to find out what all that means... lol. Jay did said that he felt comfortable with the surgeon... he was just scared "spitless" and was reluctant to go through with the surgery when I saw him. I just thought that the surgeons description of the recovery was a bit more detering than I would have liked to hear if I was the patient, and like I thought... and Marie said, "What about pain meds?". Needless to say, I WILL be at all of his future appointments, armed to the teeth by people like yourself.

Thank you so very much for your thoughts.

Very sincerely,
Richard

forhailey

Lovekitties said:

What the heck?
The 'bed side manner' of Jay's surgeon SUCKS! Doesn't his doctor belive in pain medication?

First of all, I had tumor removal, rectum and anus removal, hysterectomy and a colostomy done all at one time. Sure there was some pain but my doc had me on a morphine pump and that pretty much took care of that while I was in the hospital. Second of all, when I came home I slept in a recliner for several weeks because that was the most comfortable place but I was off all pain meds in a couple of weeks. The pains I did have were mostly related to the staples which were removed in about a week from coming home.

If there is any possibility of getting another surgeons opinion I would certainly recommend it. While most of us don't want things sugar coated regarding our medical treatments, we sure as heck don't expect to be scared spitless either!

Keep in touch and give Jay best wishes for painless as possible surgery and recovery.

Marie who loves kitties

Thanks for your story
Thanks for your story Marie.

I think that your picture will put it in a more realistic perspective being that it is an actual recovery story instead of a third party saying, "there will be pain and lots of it"... well, DUH! Like you my first thoughts were, doesn't this guy know about Morphine or something to make the pain bearable? I believe that the first surgery is to remove the descending portion of the colon... He went to the pre-surgery (?) meeting alone and doesn't remember everything that the surgeon said.

Thank you for the warm wishes I'll pass them on and I'm sure he will thank everyone personally, in time.

I can't thank everyone like yourself enough but, I won't stop trying.
Thank you, Thank you, Thank you.
Very Sincerely,
Richard

forhailey

betina61 said:

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.

Hi Betina61,
I'm trying to figure this site out and having some difficulty in finding out how to send a private message so, here is my personal email address..."waivinbait@aol.com". Feel free to either email me at that address or tell me how to send a private message here... lol... (you'd never guess that I work with computers all day long, would you?!). I would very much like to speak with you or even better, have Jay speak with you. I think that a story or stories from personal individuals will be more helpful than anything else at the moment.

Thank you for sharing your time... beautiful family pics too... you are truly blessed.
Very Sincerely,
Richard

geotina

Richard:
Hello and welcome to the board. As far as gathering information, this is the place to get it, you will learn from the experience of others. Just ask any question that comes to mind. My hubby is Stage IV with metastasis to the liver and lungs.

Many surgeons try and give you a total picture of what to expect. My hubby's surgeon here in Michigan was a board certified colorectal surgeon. Although George was on pain meds in the hospital when he came home although I filled the pain prescriptions he never used them, none one pill. Everyone is different. Pain can be controlled during the healing process. Jay is very young to have this disease, is there any family history of it that you know of?

There is another site, ColonClub, that is also a wealth of information.

Be careful what you read on the internet regarding stats because much of the data is outdated.

Take care and take one step at a time -

Tina

forhailey

geotina said:

Richard:
Hello and welcome to the board. As far as gathering information, this is the place to get it, you will learn from the experience of others. Just ask any question that comes to mind. My hubby is Stage IV with metastasis to the liver and lungs.

Many surgeons try and give you a total picture of what to expect. My hubby's surgeon here in Michigan was a board certified colorectal surgeon. Although George was on pain meds in the hospital when he came home although I filled the pain prescriptions he never used them, none one pill. Everyone is different. Pain can be controlled during the healing process. Jay is very young to have this disease, is there any family history of it that you know of?

There is another site, ColonClub, that is also a wealth of information.

Be careful what you read on the internet regarding stats because much of the data is outdated.

Take care and take one step at a time -

Tina

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

sfmarie

Richard
Wow, 25. So young to have this disease, reading your story breaks my heart. But, he is lucky to have you as a friend and this is a great place to come for advice, strength and inspiration.
Blessings on this journey.

Marie

dorookie

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

steve g

another hospital and dr. option
You have the Cleveland Clinic located in Weston Fl. (just North West of Miami) I would check them out. I used Mayo Clinic in Jacksonville but had considered Cleveland, they are a top rated hospital and very close to you. Good luck Steve

John23

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

Patteee

I also had 2 opinions- one
I also had 2 opinions- one with a local Minneapolis colorectal surgeon and one with a colorectal Mayo surgeon. The thing that bothered me most about the 1st surgeon is he only does surgery one day a week! And it would have been 6 weeks out before he could get to me. I just looked at him and said, I am going to Mayo. First thing I learned is there are a ton of OTHER surgeons out there who not only treat the colon, but do it on a regular basis, who actually can meet ones needs. No reason for long waits or terrible bedside manner. I was scheduled at Mayo within several days, all appointments back to back over a 3 day period, and the last thing I did on a Wed afternoon was meet the surgeon. All set for Monday morning surgery. My bowel obstructed on Friday night and I was pumped full of morphine and raced to Mayo where my surgeon and her team were on stand by just waiting for me. Had I not switched and gone to Mayo- I would have ended up at yoyo hospital with the surgeon on call, who I had never met before. And the outcome would not have been so positive!
Get him another opinion. Do not settle for a bad bedside manner. I did not, by the way, think the recovery pain from colon cancer surgery was bad at all. I was up walking the night of surgery and within 2 days off of morphine and all narcotics.
Good luck Jay!

John23

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

forhailey

dorookie said:

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

Never too Late
It's never too late unless it's done, the first surgery is scheduled for Septemner 16th so, very near. Jay has had several opinions by doctors but, only the one opinion of this surgeon. I'm, hopefully, going to speak with someone this evening that can provide us with a doctor and surgeon that she has been completely stisfied with.

Thank you very much for your time and input Beth, I'll never get enough information.

Thank you,
Sincerely,
Richard

Ps. I'll take the hugs and pass them on