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Mel23 · December 2009

Hi. I am new to this site. I was dx with stage 2 cc in october 09. I am married - 10 years and have two small children (5 yrs. and 10 months) and it has been a shock to my family as I am on the young side - 35. I started at a teaching hospital in pa for surgery- the oncologists in PA. did not believe chemo was necessary. I went for a second opinion at a leading cancer center in NY. The pathologists there suspected that the cancer had in fact gotten into my blood and rec. chemo. I am now taking xeloda - this chemo has not made me sick at all. Has anyone else taken xeloda for an extended period and what were the side effects?

Also, my oncologist has been abrupt and down right mean.... not sure how to handle it. I have not been able to ask many questions and when I do I am made to feel that the question was silly. I am not the type of person to just go along with someone's decisions about my healthcare.... as a generalization have others experienced anything similar with their oncologist. If so, how have you handled it? I have many questions as there are unresolved issuess as to whether the cancer has in fact invaded other nearby organs- although the radiologists and oncologist dont feel that the few spots found in my lungs and liver are in fact cancer.

I have been reading this site for a few weeks and I thank all of those who have posted uplifting stories of survival.

Any advise would be welcome.
Melissa

PamPam2 · December 2009

New doctor
It sounds like you need to find a new onc. You do not have to put up with a doctor who treats you this way. It is very important to have an oncologist who is supportive, and who supports you getting second opinions. Mine has me go to James cancer center, to a liver cancer specialist, for questions about the spots on my liver, they also do not feel at this time are cancer. Many people here have had to change doctors, and in doing so saved their lives, by finding doctors that were proactive and aggressive in treatment. Your oncologist should have no problem in you seeking second or more opinions, and in seeing specialists. Best of luck.
Pam

VickiCO · December 2009

New Doctor
Pam is right...you deserve a doctor who is caring and supportive. My oncologist is wonderful, but the 1st surgeon I saw was horrible. He actually told me I had no hope, BEFORE he even examined me! I fired his behind that same day...walked right out of his office and called my oncologist. You have the right to good care and that includes being comfortable with your doctors.

BTW - I proved him wrong. A year and a half later I am cancer free and having my port out next week.

Many hugs, Vicki

coloCan · December 2009

VickiCO said:
New Doctor
Pam is right...you deserve a doctor who is caring and supportive. My oncologist is wonderful, but the 1st surgeon I saw was horrible. He actually told me I had no hope, BEFORE he even examined me! I fired his behind that same day...walked right out of his office and called my oncologist. You have the right to good care and that includes being comfortable with your doctors.

BTW - I proved him wrong. A year and a half later I am cancer free and having my port out next week.

Many hugs, Vicki

The importance of trust in a doctor/patient relationship
can not be overemphasized. In addidtion to being treated with dignity and respect, thgre is compassion,consideration,, understanding and a willingness to explain things, showing you your reports, etc. Never should a doctor be nasty with you.Doctor should be avaialable toadequatetly answer any and all questions and should be aware of what being told you have canceer does to a person,. Bluntly put you need to find someone you have a rapport with and satisfies your needs because battling cancer needs no distrations or other worries that can be eliminated
As for Xeloda, its hard for me to differenmtiate what effect came from what as when I took it i had also been on Oxy and radiation and still had the trumor up my rectum. Diahreaa was a big big probelm for me,lack of appetite (try nutrition drinks)and fatigue.Has tons of other problems but don't think it was soly Xeloda.
Good luck in your treatment and with resolving your doctor selection(I have 4 and love them all) STeve
Good li

geotina · December 2009

Welcome
Melissa - Welcome to the board, wish you did not have to be here. Go with the chemo, best to beat this monster now just in case there are microscopic cells looking for a home. As far as the oncologist, I can only tell you our experience. His physician's assistant comes in first, checks George out, and answers each and every question we have. When the doc comes in, he has already gone over everything with the PA that we questioned. He will take all the time we need with us. The PA has already gone over every question we had and he reiterates them with us in a language we understand. He does not sugar coat things but we always leave with tons of hope and information. I do not get copies of scans and reports because truthfully, I do not understand a lot of the language. That being said, the doc or PA goes over everything with us in as much detail as we need. Sometimes when we have a 4 pm appointment we don't get into the room until 6 p.m. but that is ok with us, if someone needs a little more of his time then they deserve it just like we do. He is kind, informative and tops in his field. We also receive chemo at this office, he has a blood lab and chemo lounge. No running from room to room at a hospital and that has worked well for us. Hope this helps. You should never feel that you are wasting his time. Tina

Kerry S · December 2009

Trust your gut feeling
Melissa,
Don’t get hung up on “possible activity” with scans. I had one scan that said I had possible activity in my left lung. Wrong!! I also had one in August that said possible activity where the colon joins the rectum. The Dec scan proved that was also wrong. I was stage 4, rectum – node – liver.

I had a discussion with my primary doc yesterday about this. He said they have to say that to cover their **** in this sue happy world.

If you don’t feel comfortable with your doc, get a new one. Trust your own gut feelings in that decision. In my journey to hell and back I met many well educated idiots.

Kerry

PhillieG · December 2009

Warm & Fuzzy or Smart
Sometimes these seems to be the choices for an Oncologist. Not often do you find both qualities. My Onc, while she is not mean, she is not long winded and if you want a hug, you're not getting it. What you DO get is someone who is on the cutting edge of technology as far as treatments for Colon Cancer goes. You certainly do not want an insensitive jerk at all and that is not what I have, but if I based my decision on whether they were a "nice person" instead of a "smart person" I doubt I would be here now. I get plenty of the warm and fuzzies form the rest of her staff and from 99% of the chemo nurses. That works for me.

From what you say though Melissa, it sounds like your Onc might just be a jerk. If that's the case find someone with smarts who you're comfortable with.
my opinion...
-phil

HollyID · December 2009

Hi Mel...
Welcome to the group that nobody wants to be a part of, but we're really glad you joined us though! As you can see, I'm pretty new to this club as well.

First of all, I'm glad that the xeloda hasn't made you sick in any way.

Secondly, Melissa, do you and your family a favor and find a new onc. Remember, you are paying him/her. They work for you and if you're not satisfied with their performance, you need to kick 'em to the curb. There is no reason that you should be confused when leaving their office and feeling like you didn't understand their answers to your questions or furthermore, that you aren't part of your own health care team. If he/she is upset that you ask for a referral, that should be one giant red flag that they are not the doctor for you. Any doctor, for any reason, shouldn't hesitate to refer you for a second opinion.

I know two women who are also friends of each other (ranchers wives) who live in the same area I grew up in. Both got cancer. One ovarian (Stage IV), one uterine (stage II). They went to the onc in the same town they live in. Neither of them liked him because like you, were frustrated after walking out that their questions weren't answered and felt like they had no say in their health care. He wouldn't refer them to anyone else and was offended that they would even ask. He was fired by the end of that day. They both went to a nearby University Hospital in a different state and they thought they'd found heaven. When options were discussed, they were both told that they could seek out a second opinion and were referred to an onc at the hospital where I work. He also worked at that same University hospital where he got his training. I already knew he was special because he diagnosed and started treatment on my nephew for leukemia, who by the way, is now in remission. YAY!

They started going to this onc and have both been NED for close to one year. Changing doctors probably saved their lives.

Please, ask around. Ask the nurses that work at your hospital. Ask the chemo nurses whom they would go to if they had cancer. (this is pretty much what I did)

Good luck and please, let us know how this goes!

nudgie · December 2009

I too was DX
with Stage II Colon Cancer in 2006 at the age of 42 yrs. After emergency surgery, the path report indicated I was Stage II with no lymph node involvment and no signs of spreading to other organs. T3 / NO / MO. This information is usually on the last page of the report.

My Onc Dr told me that industry standard (2006) for Stage II was FLOFOX for 12 treatments every other week for 6 months and recommended I due chemo because of my age. He called it an insurance policy just incase any microsopic cancer cells were floating around.

He also stated that before 2006, Stage II patients really were not offered chemo, but after the Mosiac Study, industry began recommending the FLOFOX standard. FlOFOX is 5FU, lecovorin (sp) and Oxyplatian (sp).

My recommendation is to find a cancer care team that you feel comfortable with and that treats you like a human being and NOT just another patient.

You MUST take charge of your health. That is what I learned early on. I asked sooo many questions, that my care team was always ready for me. My Onc Dr was GREAT and still is. He is my age now, 45.

If memory serves correclty, xeloda is the pill form of 5FU.

Mel23 · December 2009

PhillieG said:
Warm & Fuzzy or Smart
Sometimes these seems to be the choices for an Oncologist. Not often do you find both qualities. My Onc, while she is not mean, she is not long winded and if you want a hug, you're not getting it. What you DO get is someone who is on the cutting edge of technology as far as treatments for Colon Cancer goes. You certainly do not want an insensitive jerk at all and that is not what I have, but if I based my decision on whether they were a "nice person" instead of a "smart person" I doubt I would be here now. I get plenty of the warm and fuzzies form the rest of her staff and from 99% of the chemo nurses. That works for me.

From what you say though Melissa, it sounds like your Onc might just be a jerk. If that's the case find someone with smarts who you're comfortable with.
my opinion...
-phil

Thanks for the reply
I was warned by others that my onc has no bed side manner, but that she is a terrific dr. and on the cutting edge with research and technology .... however, she just doesnt seem to be willing to answer questions. Maybe she is used to patients who just dont ask questions about their treatment. I know that I am uncomfortable with just going along for the ride and need better explanations.... I am going to try and take a different tact with my onc next visit and see how it goes. I probably have only talked with her a total of 15 minutes over two visits.... very different from the other onc I spoke with at university of penn. I certainly dont need warm fuzzzies from the dr. though... From another discussion I noticed that you may go to sloan kettering - if you go there, may ask who do you rec. there?

Mel

Unknown · December 2009

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Sundanceh · December 2009

From A Different Angle...
Hi Melissa

Here's a good suggestion for you...

Type up a list of your questions and/or concerns and FAX them over to your onc ahead of your scheduled visit. This will give them time to review it and be ready to talk with you.

When the onc comes in, just get up front with them in the beginning and tell them you want to discuss the itesms on your list, so you can have a better understanding of what's going on and let them know that YOU will be INVOLVED with your own treatment plan.

If you get short answers or not what you're looking for...that's the last visit with this onc. I was never one to have my backside kissed, but I think it is reasonable to have a give and take discussion with the onc - by preparing your questions in advance, it lets them know that you have given this a good deal of thought.

It's your money - and your life - so if you're not happy with your level of care, you have every right to pursue another doctor. I changed out doctors after 5-years and this move saved my life.

You've got to have a good patient/doctor relationship in order for you to have the confidence in their judgment and your treatment.

So try this your next visit - if they are not open to this idea, well your question has been answered, right?

Remember, the life you save may be your own

I look forward to hearing more about this. Go with your gut instinct here, this will be your best indicator - Good Luck!

-Craig

JDuke · December 2009

Sundanceh said:
From A Different Angle...
Hi Melissa

Here's a good suggestion for you...

Type up a list of your questions and/or concerns and FAX them over to your onc ahead of your scheduled visit. This will give them time to review it and be ready to talk with you.

When the onc comes in, just get up front with them in the beginning and tell them you want to discuss the itesms on your list, so you can have a better understanding of what's going on and let them know that YOU will be INVOLVED with your own treatment plan.

If you get short answers or not what you're looking for...that's the last visit with this onc. I was never one to have my backside kissed, but I think it is reasonable to have a give and take discussion with the onc - by preparing your questions in advance, it lets them know that you have given this a good deal of thought.

It's your money - and your life - so if you're not happy with your level of care, you have every right to pursue another doctor. I changed out doctors after 5-years and this move saved my life.

You've got to have a good patient/doctor relationship in order for you to have the confidence in their judgment and your treatment.

So try this your next visit - if they are not open to this idea, well your question has been answered, right?

Remember, the life you save may be your own

I look forward to hearing more about this. Go with your gut instinct here, this will be your best indicator - Good Luck!

-Craig

Welcome
Melissa. As you can tell you have joined a very fine group of people here. I do not feel I have anything to add to what has been said previously. Their suggestions and advice were right on. Trust your instincts. If it feels wrong, it is. You will know you are in the right place when you find an Onc. that is as passionate about your successful treatment as you are. Good luck to you.
Warmly,
Joanne
Thoughts become things - choose the good ones!

tootsie1 · December 2009

A good doctor
Hey, Melissa.

When I went to my first oncology visit, it freaked me out that I even had to be there (still does after 2 years). I was made more comfortable, though, but my oncologist. First of all, one of the first things he told me was that he would be happy to refer me for a second opinion if I so desired (I didn't). Secondly, he spends a good amount of time talking with me and allowing me to express whatever I need to. Thirdly, we always get around to have at least one good laugh during the visit.

In short, he makes me feel comfortable as a person and cared for as a patient. I think every cancer patient deserves treatment like this. I hope you find it.

*hugs*
Gail

lisa42 · December 2009

advice
Hi Melissa,

I'm sorry that you're having to experience this and at such a young age. I was fairly young at diagnosis also- just turned 41 (it's now been 2-1/2 years & I'm feeling pretty good and pretty optimistic). I was already stage IV with the cancer in my liver and both lungs, so it had probably been in me for a few years by that point. My oncologist was pretty much the opposite of the personality you describe yours as having. He was really great and very positive, telling me "we're going for cure and we're going to fight this with everything we have!" As a stage IV patient, that was really amazing for him to tell me that & I am so grateful for his demeanor. He was always very open to me asking him questions too. Unfortunately, after about a year, I realized that even though he was very nice and had a great manner, his knowledge on colorectal cancer was limited and he made a couple of big mistakes in my care. It was then that I realized that I needed to change oncologists. I like my new oncologist also. He is completely open to working with other specialists that I've consulted with and he now regularly consults on my behalf with another oncologist at a teaching hospital in San Diego and also with another doctor out of state that I've consulted with and am now being co-treated by.

So, as several others have already stated, go with your gut feeling- no doctor should ever make you feel like you're asking stupid questions, or that you're annoying him by asking questions. I definitely recommend changing doctors! Find one from a major cancer center & ask around and find people who are happy with their oncologist.

Best wishes to you and there IS HOPE!! If one doctor doesn't tell you what you want to hear, then seek out others' opinions. Different doctors definitely do not always agree and many times when one tells you there are no other options, others will find several different options for you- cyberknife, different chemos, clinical trials, other "off market" treatments (which I'm currently on one by Dr. Cantrell in Nashville from his Neoplas Innovations clinic). Well, take care and don't despair!

Lisa

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