New to this...

forhailey

sfmarie said:

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

I am the lucky one
I've found a friend that has been so, kind, compassionate and giving that, this is the very least and I'm more than happy to be there for him.

Thank you for your input and the well wishes, I'll pass them on to Jay.

Thank you,
Sincerely,
Richard

forhailey

steve g said:

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

Good idea
Thanks for the idea Steve. My grandmother was recently in the Clevland Clinic and we were very pleased with their level of care.

Thank you for the good idea and thank you for your time.

Thanks for the good luck, we'll take everything we can get.
Sincerely,
Richard

forhailey

John23 said:

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

Wow...
Thank you John, a wealth of information and much to digest. With the help and input of everyone that has been responding, I think that I'm begining... and only begining to get a bit of my brain wrapped around this. We will begin our search for a top rated colorectal surgeon immediately. In my search for a rating system or entity for doctors I haven't been satisfied with any of them. Any ideas on where to begin our search for an accurate rating guide for surgeons?

Thanks for the clarification on the Oncologists role. One would think that with the advent of the internet that this would be easy information to find but, I'm finding it to be more information overload than anything else. I guess I'm trying to squeeze 10 years of medical school into a one week course.

Trust me, Jay will not be attending any more office visits or conferences alone, I only wish I'd been there for him in the begining. He's a bit reluctant to start over with a new doctor (not so much with this mornings charade of events and being given the run around)... so much painful testing and probing but, if it's for a better outcome, then it's what has to be done.

Thank you again for sharing your knowledge with me, your time is truly irreplaceable and I appreciate and value it greatly.

Thank you for the good luck, I'll pass it on.

Very Sincerely,
Richard

forhailey

Patteee said:

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!

Thanks for the input...
Thanks for the input Pateee, I'm begining to see a pattern and that not just a surgeon but, a surgeon tha specializes in the area of need will be a necessity. Being blessed/ fortunate with good health myself, this is all new territory for me... a learning process that has been and I'm sure will continue to be a challenge.

Thank you for sharing your experience, ideas and time... the Mayo clinic in JAX sounds like a very good place to contact. I'll pass the good luck on to Jay.

Sincerely,
Richard

forhailey

John23 said:

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

Thanks again John,
Thanks again John, I should have read all of the posts before responding the first time. You are correct in stating that not all stories are good, I hope that you're not refering to yours. The fact that you are here and you are willing to give others the much needed help via the information process makes your story a good one for me. Thank you for sharing your story and especially your wifes story, I am very happy that hers is a happy one as well.

Thank you and the best of wishes to you and your wife.

Very Sincerely,
Richard

Cooper503

forhailey said:

Thanks again John,
Thanks again John, I should have read all of the posts before responding the first time. You are correct in stating that not all stories are good, I hope that you're not refering to yours. The fact that you are here and you are willing to give others the much needed help via the information process makes your story a good one for me. Thank you for sharing your story and especially your wifes story, I am very happy that hers is a happy one as well.

Thank you and the best of wishes to you and your wife.

Very Sincerely,
Richard

Welcome
Hi,

Sorry you had to join us but I too am a new member and this was a great place to find.

I had an excellent surgeon but my oncologist was awful. I took it upon myself to look for one that I felt I could have an ongoing relationship with since I have Stage 4 rectal cancer and knew I would be treating or monitoring the rest of my life. When I found a new oncologist I told the old one to take a long walk off a short pier. He could have cared less since unfortunately there are so many of us that need oncologists these days. Any way, I did what was best for me and never regretted it. My current oncologist always tries to work with me in using agressive treatments but giving me the ability to take breaks to assure quality of life so I have energy and feel well enough to spend quality time with my husband and children. Has worked for over 2 1/2 years with her.

Good Luck.

Liz

forhailey

Cooper503 said:

Welcome
Hi,

Sorry you had to join us but I too am a new member and this was a great place to find.

I had an excellent surgeon but my oncologist was awful. I took it upon myself to look for one that I felt I could have an ongoing relationship with since I have Stage 4 rectal cancer and knew I would be treating or monitoring the rest of my life. When I found a new oncologist I told the old one to take a long walk off a short pier. He could have cared less since unfortunately there are so many of us that need oncologists these days. Any way, I did what was best for me and never regretted it. My current oncologist always tries to work with me in using agressive treatments but giving me the ability to take breaks to assure quality of life so I have energy and feel well enough to spend quality time with my husband and children. Has worked for over 2 1/2 years with her.

Good Luck.

Liz

I'm not sorry...
I'm not sorry that I've had to join this group. The people that I've encoutered have been incredibly inspiring and helpful beyond belief. I wish the circumstances were a bit different to say the least... for everyone.

Liz, I sinceely want to Thank you for the irreplaceable time you've taken and your willingness to share your story with Jay and myself. We will take your story as another of inspiration that we will both need as we begin our own story. We will keep you, your husband and your children in our thoughts and prayers.

Thank you again so very much, we're about to hand out some walking papers of our own!
Very Sincerely,
Richard

Patteee

forhailey said:

Thanks for the input...
Thanks for the input Pateee, I'm begining to see a pattern and that not just a surgeon but, a surgeon tha specializes in the area of need will be a necessity. Being blessed/ fortunate with good health myself, this is all new territory for me... a learning process that has been and I'm sure will continue to be a challenge.

Thank you for sharing your experience, ideas and time... the Mayo clinic in JAX sounds like a very good place to contact. I'll pass the good luck on to Jay.

Sincerely,
Richard

mayo in JAX is good- my
mayo in JAX is good- my colorectal surgeon in Rochester was actually at JAX for a time. Mayo at Rochester actually treats people throughout the US and world. I learned it was very common for people to come to Rochester, get all their testing done, talk to a surgeon and surgery is usually then scheduled for fairly quickly so as to avoid a trip home and then back to Rochester. Many however chose to take the information home with them and have the surgery or treatment closer to home. I knew after experiencing Mayo, their professionalism and overall care, there was no place I would be. I knew in my heart no matter what happened I was in the best hands. My surgeon saved my life- Jay more than ever needs to trust and feel that with his surgeon and the care he will have. I encourage you to think about colorectal surgeon and a hospital that exceeds your expectations. In my case, it was so worth it.

Annabelle41415

Welcome
Welcome to you and your friend. This is a wonderful site and you will learn a lot of information here. We will be here for both of you to help you through your struggles, questions, and tears. We are also here for your jubilations. We have posted on many topics so don't ever be afraid to ask a question. Remember we have colorectal cancer. Doctors have seen every inch of us Make sure that your friend is comfortable with all of his doctors as that is so very important. Keep us informed.

Kim

chicoturner

Hi Richard, welcome to you
Hi Richard, welcome to you and Jay. So sorry you have to go through all of this. I think you were so right in saying you would attend all future Dr. visits. All of the info is so very overwhelming and it is hard to concentrate to say the least. I am stage 4 and had a resection and did not have any iloscopy - so it is not a given. I would say, Jay needs to be confident in whoever gives him care. If he doesn't it will be difficult in a much different way. He is blessed to have a friend who is so willing to help get this information gathered. Bess to both of you.. Jean

CherylHutch

Welcome to the board, Richard
Sorry I can't be of any help in recommendations... I hail from above the northern border in BC, Canada. But it sounds like you have got a plan in place and that is a good thing... find a good surgeon and everything will start falling into place.

I see someone has gotten to you and you are now going to be going to appts. with your friend... that is GREAT!! Seriously... for those of us going through this nasty disease, whenever a doctor starts talking to us, we hear about 1/10 of what he/she says... and usually we pick up on key words and take them totally out of context That is why it is soooo important for cancer patients to have a second or even third set of eyes and ears to be with us at all appts. in the beginning because it's amazing how much we miss. Or, in my case I was shocked on numerous occasions when something would come up and I'd say, "Well how come no one told me???" and my friends would have to remind me that the surgeon or the oncologist or whoever DID tell me and which appt. they told me.

I suggest you get yourself and your friend a three ring binder with dividers and plenty of paper. You can use the sections for different doctors and make sure every question you come up with... write it in your binder. Even when you get great answers here in this forum, ask those same questions of the surgeon/oncologist/radiologist and all the better if you already have some answers... you will know what to expect when they answer and if they answer differently, you can ask why? This binder will become your friend's medical bible... and a wealth of information for down the road as well

Good luck and keep us posted!!

Cheryl

forhailey

Annabelle41415 said:

Welcome
Welcome to you and your friend. This is a wonderful site and you will learn a lot of information here. We will be here for both of you to help you through your struggles, questions, and tears. We are also here for your jubilations. We have posted on many topics so don't ever be afraid to ask a question. Remember we have colorectal cancer. Doctors have seen every inch of us Make sure that your friend is comfortable with all of his doctors as that is so very important. Keep us informed.

Kim

Thank you,
It's a great feeling of comfort knowing that there are so many people willing to give of themselves when many are in their own moment of need. I'm sure that we are going to have an unending list of questions... I cannot thank everyone for all of the help they've already given. I will keep everyone informed of Jay's progress.

Thank you very much Kim,
Sincerely,
Richard

forhailey

chicoturner said:

Hi Richard, welcome to you
Hi Richard, welcome to you and Jay. So sorry you have to go through all of this. I think you were so right in saying you would attend all future Dr. visits. All of the info is so very overwhelming and it is hard to concentrate to say the least. I am stage 4 and had a resection and did not have any iloscopy - so it is not a given. I would say, Jay needs to be confident in whoever gives him care. If he doesn't it will be difficult in a much different way. He is blessed to have a friend who is so willing to help get this information gathered. Bess to both of you.. Jean

Hello Jean, Thank you for
Hello Jean, Thank you for the words of encouragement, last night was a difficult one... seems that the more free time that there is to think, the worse off we are so, we're gonna try and keep ourselves very busy... at least as busy as the treatments will allow. You are right that there are no givens, including crossing the street but, if we didn't believe that we could get there... we wouldn't even take the first step. Congratulations on taking your own steps.

Jay and I will keep you in our thoughts and prayers as we take each step.

Thank you for taking the time to reply and share your experience with us Jean.
Very Sincerely,
Richard