Another opinion?

This will be my first time starting a discusion. Well, really asking everyones opinion.

I was diagnosed with DCI stage 1, no lymph node involvement in 1999.(36 years old!) In Feb. 2008, after years of back pain and being misdiagnosed multiple times, I found out that the cancer had spread to my spine, from my neck to my tailbone. My oncologist didn't discover it, heck he never even asked me about any pain issues I could be having! My regular doctor kept telling me I had a lung infection, along with an ER doctor and radiologist. So, without a cough, a cold, chest pain and the fact that I do not smoke, I decided to go to my Moms' lung doctor. After telling him my history he immediately ordered an MRI and lo and behold, the cancer had spread.

And now that you have a little background, this is my question. I will be traveling over the holidays to Houston and was thinking of going to M.D. Anderson and getting a second opinion. Is this a good idea? Or am I just grasping at straws. I am thinking that having another doctor look at all my reports could shed some new light on my situation, possibly different treatment, etc.

Has anyone done this before? If I do go, does anyone have any advice, questions I could ask, anything? Thanks.

By debteach
Posted October 20, 2009 at 10:47 am
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Just think how much better you would feel if you felt like your doctor was on top of your situation and giving you the best treatment.

I'm all in favor of second opinions. I saved myself 4 months of chemo (did pills instead) and I feel like my dr has all kinds of options for me when things stop working.

You may not even have to travel that far. My own onc suggested this new dr because she had clinical trials.

I'm sure other people on here have good advice about ways to find a dr. Maybe calling the nearest teaching hospital? Looking online at clinical trails on mets near you? Maybe the American Cancer society? There could be many ways.

If I were you, I would find a dr that I felt confidence in. It really helps you, to not have to second guess if you are being treated properly.

Wishing you all the best in your search

By 2xnow
Posted October 20, 2009 at 1:01 pm
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If you go to a larger facility and you do not live in that area, many times that facility will give you the names of drs in your area for you to see. You can also do a google search depending on the state you live in and sometimes that search will also turn up the doctors credentials, his specialities, research, etc. You can also google facilities that deal with your specific condition and then go to their website and search for doctors who specialize in your condition at that facility.
I too experienced the same situation you are in. I had back pain for over two years, mentioned it to the new onc. who ignored it, saw several local drs who sent me for PT, and finally went back to the clinic where I orginally was diagnosed with cancer in 1996. That's when they found on my previous MRI done locally that I had a fracture and they became suspicious that bone mets was my real problem.
2nd opinions are always a good idea.
I believe Newsweek did an article on hospital choices not long ago. If I can find the article, I will post again. That woud be a start for you.
Good luck.

By kat47
Posted October 20, 2009 at 3:15 pm
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Thanks for the help. I probably shouldn't waste time out of state. US News lists MD Anderson as being #1, I am close to University of Michigan which is listed 19th. The cancer center I go to is affiliated with UofM. Thinking about changing doctors is like changing your hairdresser........

By R
Posted October 20, 2009 at 6:28 pm
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Sounds like a great idea. I adore and trust my surgeon and oncologist BUT I went to a second opinion clinic to verify that I had all the info I needed and to help make the surgical decision. (lumpectomy vs mastectomy)

By chainsawz
Posted October 20, 2009 at 6:57 pm
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Not every doctor knows everything, so I think more opinions are better :> There is a thread started not too long ago on this site by someone asking if anyone had gone to MD Anderson and their experience. Might be worth reading. I don't think they take people with brain mets, or I might travel there. Best to you! lisa

Link:
http://www.inspire.com/groups/advanced-breast-cancer/journal/m-d-anderson/

By nutrachris
Posted October 21, 2009 at 9:10 am
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Kat,
We tell members of our support group to get second, third and even fourth opinions. Remember you are in a fight for your life.

MD Anderson is by far one of the best cancer centers in the world. Dana-Farber, UCLA-Cedars Sinai and Stamford are others. But keep in mind a Cancer Center is only as good as your oncologist.

You should interview any prospective oncologist with great care. Does she/he attend the major cancer meetings such as ASCO or SABCS? Does he keep abreast of new treatments? Go to a local support group and get the opinions of other cancer patients.

You should also seek out a radiation oncologist for the cancer on the spine. Cyberknife is the latest delivery system and can deliver precise radiation to almost any part of the body.

Hugs
Christine

By ious1Tjed6247
Posted October 21, 2009 at 9:46 am
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Since you are traveling to Houston anyway I would encourage you to get the #1 hospital's opinion. You will undoubtably get a referral....but getting the state of the art diagnosis is 'patient 'specific. You will know exactly when you leave what you are dealing with and you will feel as though you are on target. Then an oncologist can treat you accordingly.....with a major hospitals recommendation and protocol. (Take a tape recorder......I did and it was so appreciated by my Onc.)
You don't want to look back and say .....I wish I would have.
Just weighing in......Best of luck in your decision.
Tara

By Groovygirlcool
Posted October 21, 2009 at 9:56 am
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Hey Kat,

Go for all the opinions you need until you feel satisfied. My Onco wasn't looking for mets either, I found them myself two weeks after surgeries following initial diagnosis.

My second opinion was worth it's weight in gold, not for the recommended standard therapy, but for the doctor's attitude, insight and vastly different prognosis - he gave me hope.

Intuition is, I believe one of the biggest things we've got going for us - we must take heed of hunches and 'gut feelings' - go with the internal flow!

Questions??

-Ask about your receptor status - exactly what it means in regard to available treatments?

-What treatment do they recommend and exactly why?

-possible major side effects -"will I damage my heart with this treatment/suffer osteoporosis/osteonecrosis of the jaw(ONJ)?", etc;

-What's the next step if I stop responding to this treatment?

-What new drugs are in the pipeline....Ask about current clinical trials, if you'd be a candidate, if proposed tx precludes you from trials,etc

Just some thoughts from me......and by the way - a bad haircut never killed anyone......trust me, I'm a hairdresser!

Now, dodgy doctors and suspect surgeons, hmm.......

Keep smilin'

xxxGGC

By g8orfan
Posted October 21, 2009 at 12:00 pm
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Kat,
You are not "grasping at straws" and so what if you are!! I looked at your profile. Your inspiration is your family and friends You and they deserve the best doctors and treatment you can find.

I consider myself the captain of my care team, and make no apologies for getting all the information I can find and asking questions about alternatives. I get copies of my test results, labs and discharge summeries. I print off information about medications and treatments to talk with my docs about anything I question or don't understand, My guess is that most of the gals in this community do the same because there have been some very astute discussions.

I have had only two doctors in 30 years object and I very tactfully told one of them I needed to find another doctor who didn't mind explaining things to me. And the other, who was writing me off because I have widespread metastisis was the hospitalist, and I requested that he never have any involvement with my care again.

I am respectful of my doctor's time and education, but at the same time, it is my life and I have involved them to help me get the most out of it - for me and the people who love me..

The gals who posted before me have given you some great information - go for it!

By 2xnow
Posted October 21, 2009 at 12:46 pm
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You need to find a dr you are comfortable with; one you can sit and talk to and not feel like you are wasting their time. My Onc. talks to me in plain English; not all this medical field jargon. Yet he is a professor at the clinic and does research and sees patients. I had to cancel my appt.s for today due to bronchitis; his office called yesterday to reschedule my appts and apologized for not being able to schedule my four appts. in one day; today he had his office gal call me to see how I was doing. He has even called me on Sat. to talk to me - and the clinic is only open Monday thru Friday. This facility works to get their patients back on tract and are not concerned about the almighty dollar. I have seen it for myself - money is not their object; patient care is. Find a facility you are comfortable with and better yet find a dr. you feel is there for you and has your best interests in mind.

By margaret27217
Posted October 21, 2009 at 1:43 pm
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The hospital I go to - UNC Chapel Hill - has a multi-disciplinary approach to care, which means that each new patient's case is review by many Drs. in the oncology department, and then a treatment plan is proposed. This eliminates the need for a second opinion. Sounds to me like you NEED one, and if I were you, I would go to MD Anderson. I have heard nothing but great things about them.

love to you!

By Pam-Pam
Posted October 21, 2009 at 9:32 pm
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I go to MD Anderson and I would say to go there, but expect to extend your visit to your mom. They are very thorough, which is probably one of the many reasons they are number one. They put as many appointments as possible on the same day, which is nice. Sometimes I'll have 4 places to go, all in the same 'area'.

You can self-refer online. Go to MDAnderson.com and register. They use the internet and are very organized.

Just visiting the hospital shows their desire to make the patient comfortable. They are interactive, making it able to navigate the maze of halls and buildings. Buildings are named and everything is well marked. Central areas are landmarked with themes to help you remember where you were, like the Gazebo, marked by a large (you guessed it) white gazebo! Elevators are given letters to help navigate like: Floor 5, elevator A, B, C, etc.

They use overhead walkways so you are inside when walking from one building to another. Golf carts are available and reserved for the patient and spouse to have first priority seating in case you're too tired to walk.

There are recliners, aquariums, televisions, lots of windows with views, areas to sit outside, several places to eat with choices like fast food to home-style. Puzzles lie on tables in varying stages of completion, inviting to those waiting long hours.

Many people have multiple doctors to see and MDA arranges their appointments all in one day. Sometimes there may be a delay...but to alieviate boredom between appointments, there are classes for Yoga, art, massage, dealing with pain, stress relief, etc.

I have never seen a hospital as accomodating as MD Anderson!!! They actually do their best to help making being there a pleasure. Hope this helps.

The breast cancer building is called the Mays building. It has valet parking, $15. You will pull into the area marked by a huge number 7 out front off Holcombe (street). That is where the valet will take your car and you will enter the main building. The first time there, it is a little overwhelming, but it isn't long before the lettering, numbering, and other landmarks guide you around as if you've been there a million times!

They even have a touch screen as you enter the building in case you forgot your doctor's name or the time of the appointment. You simply enter your personal id number and your entire schedule pops up for you to review! Not computer savy? Then there are information desks where they will print off your schedule and give you a map on how to get there.

After just a few visits I was able to find my way anywhere! It's just that easy!

Pam

By kat47
Posted October 21, 2009 at 10:56 pm
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Well, I decided to go for it and see a doctor there! I am seeing my oncologist tomorrow and will be informing him of what I am doing. I have emailed my sister-in-law in Houston who is going to ask a friend at MDA for a recommendation. After reading all the posts I will be going armed with information, questions, (tape recorder!) and a feeling of being in control.

I am overwhelmed by the responses I have gotten. I have been rereading them all day! Thanks to each and everyone of you for your ideas, opinions and thoughts. God Bless all of you.

Welcome to Inspire!

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