Topic: At MD Anderson

Liane,

It will be good to hear about your experience at MDA.  I am very satisfied with my treatment so far, I am going to Huguley in Burleson.  I went to the Med Onc today for the first time and I liked her a lot.  She spent a lot of time with me and answered all my questions.  She will guide my treatment from here out.

With this dx, you never know what is around the corner.  There is always that pause waiting for the shoe to drop, until the test results are in.  I have always heard good things about MDA and I do know that other cancer centers consult with them all the time.

Keep up the good spirit and keep posting.

Your Texas Sister,

Juannelle

Today my first appointment at noon. 

We made use of the free valet parking.  You get a complementary sticker from the intake counselor.

Building is huge but there are signs and even a digital kiosk where you can help map out your path.  Beautiful interior and seating everywhere including recliners.  There are a couple outside areas with plentiful seating.  Large aquariums are common and wonderful  All in all the impression of walking through is that everything is well maintained and adds to a relaxing atmosphere.  The cafe is nice but closes after lunch.  Since we had a noon appt. we ended up a bit on the hungry side.  There is a coffee shop with snacks and drinks.  There were numerous places to sit quietly and away from everyone if you would like privacy.

The intake easily consumed almost 45 minutes. I had downloaded and fill out everything ahead of time.  Surprising number of additional documents releasing this and agreeing to that.....almost felt like settling on a house.  Iris was very pleasant and efficient though.  Then she checked me in over at the medical side of the floor.  All your team use email, including the Dr., and you can set up an account to communicate with them that way.  I really like that.

There was a wait for the oncologist they were running behind......but only about 30 minutes.  The Dr. has a nurse and scheduler assigned to him.  The next process is not any different from most Dr's offices, check your vitals, weigh you and get you to an examining room with additional wait time. Took another 20 minutes or so.  I like him and he communicated very well, answered questions and helped me understand what little we know at this point.  We talked about potential options(some I hadn't thought about) but with the caution that there was more to be learned yet especially the HER2 result which is in contention.   The path report first says it's FISH pending but in the conclusion indicates they believe it to be positive.  He is going to follow up on that.

Next I met with the scheduler and was given a handful of papers with 3 days of tests starting NOW.  Though they said to plan on being here a week I can go home Thursday afternoon and then drive back down next Tuesday to meet with the Dr. again to review their results.

We did a blood test and Chest x-ray today.  Diagnostics was very quick, maybe because it was the end of the day and we missed the rush.  Only took about 30 minutest from check in to finish.  We were out just before 5pm and rush hour wasn't too bad.

Tomorrow it's all day starting at 7:20am (ewww) for another Mammo, then "UltraSound, Breast with FNA".......Does that mean Fine Needle Aspiration ?????? Ouch. Noon for Bone Scan-Dose and then for Bone Scan-Exam.

Thursday check in early again to prep for CT Scan - Abdomen.  No breakfast.

It's an impressive facility with impressive people.  I feel good about this choice.

Parking does have some additional options.  $15 is only for the valet parking.  There is another self parking option that is less expensive.  Since we are only here two days we'll probably self park.

My DH is my rock..I'm so glad he is right there every step of the way.  My anxiety went up and down.....because now this is it and today made it very real.  

Thanks my Tx. Sister and Omaha Girl...back at ya.....keep those positive thoughts flowing and I'll work at doing the same.

slforbes, sent you a PM.

Are you sure it won't hurt????  I'm being a big baby.    The Core biopsy hurt like hell.  Given the reactions of the Dr. I consulted near home and the onc today when he saw the remainder of the bruise, I have the distinct impression that the guy who did the CNB was a bit ham handed.  Something in their facial expression and the tone of voice when they reacted to it.

Fine needle has to be better than core! 

Liane,

Just want to know you're in my thoughts and prayers.

I am a 19 year BC survivor, no recurrence.  I went to MD Anderson to be tested for the BRAC1 & BRAC2 mutation as my mother had ovarian ca and I breast ca before menopause at 47 (I had 6 mos of chemo because high risk of recurrence).  The BRAC tests were negative.  But the genetic counselor said it may just be a mutation not recognized yet.  Just tonight I had call from my daughter and they've call her back for another mammo, so am anxious to hear later this week or early next the results.

 I am heading to MD Anderson or my annual check up at the Gyn Onc Clinic (in the Mays Building), since I am at high risk of ovarian ca.  My Mom's sister just died of ovarian recently, too.  My appt is Thursday (Sep 17).

 I have nothing but praise for MD Anderson.  We were there in June as my husband developed a large mass on arm and the local people were worried about a sarcoma - it appeared to be intramuscular hemangioma, thank goodness.  But MD Anderson is going to follow up again in 6 mos wth another scan.

I will be staying at Rotary House till Sat. am.  I'll be thinking of you. 

Liane, you are really having an experience.  You are right this is only the beginning and this will probably not be the best journey you have ever been on.

I am going on a cruise this weekend, so I plan on just relaxing and having a few drinks.  I will be gone for 5 days and I really need this trip.  Its a girl trip and you just can't miss with those.

You will stay in my thoughts and I hope they don't find anything else.

Your TX Sis,

Juannelle

I wish you could go, I sure we would have a great time.  It would be way fun!!!

I am also on the ship you are on and it would have never been my choice, but here we are.  I am glad that I will be able to go one week without a doctors appointment or some kind of treatment.  I am gearing up for my radiation, waiting on my PET scan and Oncotype DX test.  Just some things to look forward to -- HA HA

When I met with my Med Onc Monday, she said she would see me for the next 10 years.  I told her we would become really good friends.  Pictures of the kids and the grandkids and all that.  She said OK.  How this has changed my life.  I just hope that I come out better on the other side.

I will think of you as I sip my umbrella drink and hope you are doing OK.

Juannelle

Good morning all.  Mary, good to hear you are pleased with S&W.  I use that system down here in Georgetown as well and have found my primary care to be very good.  Your report may help me to see whether I can arrange for chemo, if ordered to be done closer to home while still having MD Anderson treat my case.  Hopefully my GP can help me find an onc. willing to collaborate so I don't have to drive 180 miles one way weekly.  We'll see.

Yesterday I finished up testing and we were able to get on the road home before noon.  When I got home I zonked out early. 

I set up my MD Anderson homepage.  I've been exploring it this morning.  Very impressive and comprehensive.  There is even a journal page that I can make notes on for myself.  The tabs include medical records, billing info, calendar of appointments, secure email within MDA....there is a place for radiology and medical reports.  The Dr's notes from Tuesday have been uploaded and I have copied them out for myself.  This is a very helpful tool.

All in all our time at MDA was well organized and efficient.  Staff was professional and caring as I've mentioned before.  The size of the place can be overwhelming for a first timer but we really had little trouble finding our way around with just a little help from the Access system and signage.  Parking was reasonable for a big city.  The Houston metro rail has a stop two blocks away and there were numerous shuttles running from lodging sites. The cafe' had tasty food.  Typical of many hospitals now it's an open set up that can be very confusing when the lunch rush hits.....and it would be nice, if it would stay open later than 2.  I guess the evening shift has to brown bag it, because there isn't anything out on the street nearby but more massive medical facilities.

I busied myself this morning unloading the RV to try to stop the obsessive thoughts running through my head.....wondering what the Dr. will say on Tuesday at our appointment.  I'm trying to stay positive but at times I wallow in the pity pool and get very frightened of how this will all play out.  I'm not going to read too much on other threads for now because I found myself getting ahead of the game and trying to second guess this and that.  It has only added to my fears playing the "What if" game.  I'm a planner with project management training from my days at the phone company and some habits die hard.  While they will help ultimately, right now I need to stop trying to plan without the rest of the data.

This is going to be a frustrating and anxious weekend.

We will drive back down on Monday evening without the RV since we will only be there for the one day that I know of.  I'm going to email the scheduler just to be sure.  I'm trying to leave open the possibility that there may be  decision Tuesday to go forward with something or perhaps add a test that will require us to stay over.  Gotta be flexible.  

Liane................ Just wanted to add that I am also finding your posts very interesting as my care is also at MD Anderson but in Orlando, Florida. Have found that they are very much about the patient and as a rule things run quite smoothly with them.

Wishing you the best and if you have any questions that I may be of help with feel free to ask. I know it is all so much to "digest" but things will settle down. It is good that you have someone with you as often when they are giving you so much info it is so hard at times to have it all register......... plus I think there is still a certain amount of shock that we deal with when we find out we have bc. My husband was with me also for every appointment which was a big help

Wishing you well.

Pat.

bjsvaughn, I know about the being scared part, I can't answer your questions because I'm still at the beginning of my journey.  You should definitely post on one of the other threads to get a more experienced gal to answer.  I'm sure someone will be able to ease your mind.

We will drive back down to Houston tomorrow and meet with onc. bright and early Tues. morning to put the puzzle together and make a plan.

This is one of those roller coaster hills........I can hear the crank, crank, crank as the car pulls to the top of the hill just before it rolls off, you throw your hands up and scream as loud as you can!!!!!

Liane,

I've been thinking you.  Wow, some day.  Glad you were able to dodge the wheel.  Keep that lucky bear with you!! I always worry about the other cars as I had that happen to me once, too.

Glad to hear the liver/lung scans were clear.

I hope all goes well with tests for the bone issue.  Hopefully, you will get more answers later this week.  More barium, yuck, but at least it's not as bad as it use to be.  It use to be as thick as mud .

I can't help with pre-surgery chemo, other than I know that in some cases they do recommend chemo first.  I always thought it was to preshrink the tumor.  Is that why the Onc was suggesting chemo before surgery?

I think you're wise to wait until you have the bone issue resolved, before making your final decision.  But that's just my personal opinion, and will let other input on the chemo issue pre-surgery.

If you do decide to do the chemo first, maybe they can co-ordinate it with local Onc so you wouldn't have to drive to MD Anderson.  They will work with the local doctors.  And then have your surgery at MD Anderson.

Hugs

Well, I think I just got the best help MD Anderson could provide.  The surgeon's nurse contacted me to explore my abivalent status.  She had all the Dr notes and reports in front of her because she related chapter and verse everything about my tumor and testing. She wanted to know if I was leaning towards surgery and to talk about my thoughts because the Dr's notes indicated I was unsure.  Maybe it's a woman thing but she took my uncertainty and helped me explore it and drew me out about the situation.  She helped me find some clarity I just couldn't access myself.  We spoke for nearly 45 minutes.  What a bonus she is.  I told her that my onc. is just great but everytime I get in there I just can't concentrate to ask what I need to ask or explore what he is saying very far.  I've always been that way, I learn better reading and don't ask as many questions as perhaps I should.  Fortunately she did most of the talking as she always seemed to be able to connect my statements to a greater understanding of what everything in all these tests means.  She said that the oncs and surgeons would recommend chemo first given my test results and demographics but of course would follow my wishes.  She helped me pull my head out of my a$$ and give voice to my fears about chemo....(watching two siblings battle neuroblastoma 40 years ago, the chemo was horrific, they did not survive)  I know, I know, it's much better now, but those memories are searing.

She checked my schedule too and gave me the update. The additional bone test is scheduled for Friday 6pm.  They had to squeeze me in and I guess someone is doing overtime on a Friday night! 

Guess I'll be looking at really short haircuts soon.

Just saw your post Tx Rose.  It's funny that the Round Rock people didn't mention anything about a Cancer Center in Temple.  There is a disconnect there.  The general surgeon was going to hand me off to a contract radiation place here in Georgetown.  Oh well.  Water under the bridge but I'll keep that in mind as I get this going.

Apparently my 2cm tumor based on the Round Rock exam became 2.4-3cm with the MDA mammo/ultrasound and the onc said they consider that large, not huge, but large. 

Hi Marybe, hope you get sunny weather on Monday.  Rainy now down there.  I go back and forth on exploring the option of receiving the chemo here vs. doing 100% of my treatment in Houston.  I really like them and feel safe there.   But I sure would like to shorten the drive too.  ack.

Maybe I better find that clarity nurse lady and have her straighten me out again..........gee, I used to be so damn decisive....and I can't blame it on chemo brain yet either.

liane, I have been reading your posts and just had to add my two cents' worth to the mix...My sister Fran was dx 5 months before I was with stage 3 breast cancer...her tumor was over 5 cm.....She did surgery first instead of chemo first and she is happily over 3 years out and still NED.....Also regarding doing all your treatment in georgetown or Houston, Do the treatmetn where you are most comfortable......As for your indecisiveness, that hails from the fear of the unknown.....I usually am a very decisive person, but after my dx I had to let others decide alot for me.....I had the last say of course but the initial things I had my DH decide for me.........I wish you a speedy recovery no matter what you decide and i hope to see you here in a few years saying "do you remember when?.".......and laughing about it.....I laugh about my experiences now....Or rather my reactions to them......It is good to get to a point where you feel normal again and it will come.......You are so new to this journey that it doesn't feel that way right now, but I promise you will have a new normal and you will wonder how you ever coped with the old normal....My experiences have made me stronger as a person and more compassionate for others.....I feel the need to reach out and help others like me who have or are going through this awful cancer experience.....please feel free to PM me if you like.......

Liane,

Glad the nurse called to clarify everything.  It's often hard to absorb it all at once.  Making the beginning decision is the hardest part of the journey and you're getting there.

I'll be thinking of you Friday.

Hugs