Furious! MD Anderson stops their 2nd opinion program

Ojttocs · October 2016

Since my Stage IV dx two weeks ago, I formulated a mental plan to be reevaluated by the "best cancer hospital" in the nation, MD Anderson. Maybe I'd transition my care down there, as my daughter lives in TX and I no longer need to live any one location. It seemed like a strong plan.

As of Sept 1, they no longer see patients for second opinions, only clinical trials.

I admit I hung up on the caller. I'm so furious; I'm not even sure at what, except that I can't get a break.

The doctors missed my cancer, staring them RIGHT IN THE FACE, for months. This includes my beloved oncologist.
They won't do surgery now, because I'm Stage IV, even though it is confined to the breast and my skin around it.
Now my chance to be treated at the "best cancer hospital" in the nation, maybe the world, has evaporated.

I'm soo angry.

I'll give you all a little background, since I'm new here. I was dx'd with stage I wayyy back in 1996. I had a lumpectomy, 23 lymph nodes removed (clear) and radiation combined with CMF therapy. That was all for decades.

In 2012, I was dx'd with thyroid cancer. Had it removed. I was stage III there, but only because I was one year older than a certain protocol provided. I had a couple of compartment lymph nodes, two in they thyroid, all gone. I've been stable but highly suppressed since.
In 2014, my routine mammo showed something, and off I went. Now I just can't beat it and it gets worse and worse.
I had the left mastectomy, and didn't remove the right. I had horrible chemo that nearly killed me due to an allergic reaction. The left side didn't want to heal, and there was this...spot. I dx'd as stage 1, recurrent and went NED.
I took tamoxifen for a while, till my heart started palpitating.
I had my genes tested (BRCA2) and removed my right breast and my ovaries.
The spot developed other bumps and spots. All of these were monitored by my docs.
Now, dx'd two weeks ago: a tumor in both sides, a little over a cm each, and my skin...all cancerous. I'm now stage IV metastatic. They won't do surgery. They want me on Herceptin, Perjeta and my personal fav, Taxol.

Well, ladies, what am I in for? Think I can still work like my doctor says I can? Where can I catch a break? Seriously??

bevin · October 2016

I know someone will be along to chime in and give input and guidance. I'm sorry you're dealing with this. Sending support.

B

intothewoods · October 2016

I'm so sorry that you find yourself here. My understanding is that surgery isn't generally done with metastatic disease because as my onc says "the horse is out of the barn." Where are your tumors?

Wishing you well

fleur-de-lis · October 2016

I think MDA has been heading that way for awhile.....would they see you if you were to be treated by them?

I see a genetist there, was seen by both a MO at Methodist in Houston, and a MO at MDA....I actually liked the MO at MDA better, but.....wait for it....she was the MO that tried to kill her MO boyfriend at MDA. Bit of a scandal for MDA back in 2010-11, I imagine. She is still in jail, I believe.....

I am not a stage 4 though...is this just an issue based on what stage that you are currently? I feel bad and really stupid asking that question....please forgive me😔

If you share where you live, I bet others can chime in with suggestions? MSK is currently rated #2 and, actually has been rated # 1 in the very recent past. Dana Farber is also an excellent center.

pajim · October 2016

Ojcttocs, I'm sorry you've run into this. Anger is perfectly normal -- it goes with this diagnosis, along with fear, sadness, shock. Don't try to talk yourself out of your emotions.

2nd opinions are actually a major pain for the big cancer centers. They end up doing a lot of work for not much money. The income is in administering the treatments and doing the imaging. Sorry to make them sound mercenary. To be fair, there are only a certain number of clinic slots in the day. The more people they see the more MDs they have to hire and there isn't enough income to pay them.

[seriously -- the reimbursement dollars for an office visit are awful]

None of that helps you. How about: there are many other excellent cancer centers around. Memorial in NYC, Hutch in Seattle, Farber in Boston, several in the mid-west and south. They'll all do second opinions. Or if you moved to TX you could be seen at MDA.

I have a friend who was on the regimen they proposed for you. She worked. From home some, and in the office some, and off some days. It depends on how the SEs hit you. Some women sail through working an 8 hour day, others can't get out of bed. [And it's not because they're being lazy] Most people are somewhere in between.

Hugs to you and a few more hugs for the road.

zarovka · October 2016

I did pretty well with second opinions for my first line treatment locally. With later lines of treatment, you do want to go to a major cancer center. However, I don't personally believe that MDA is the best cancer center. You can probably get luck and find someone awesome there, but I think they've gotten too big and many people fall through the cracks. Look closer to home ...

>Z<

car2tenn · October 2016

In January of '16, my sister and husband I traveled to MD Anderson for a second opinion. Absolute disaster. Rude treatment by the most abrasive physician I have ever met. Jennifer something. Costly and time consuming lesson...Absolutely horrific experience. Be glad you were stopped before traveling...Carolyn from Music City

stagefree · October 2016

hmmm... Hope you can find relief before the best of treatment, MOs etc.. As nothing works better than mood. My MO is happliy surprised I survived so much (all written past threads) and is happily shocked to keep seeing me at each new appointment.

I don't believe in best cancer center, best MO, best treatment.. Rather, I believe in best patient.

Much scientific evidence shows operating on metastatic areas only help the cancerous cell travel faster on the lymphetic highway throughout your body, so cınsidering your past operations, the Med team most probably think it's best to treat well and look after your body, help it keep all energy for the fight, rather than recovering from yet another operation ..

Hope you feel much better soon

Ebru

mara51506 · October 2016

Stagefree actually explains it the very same way my MO explained just today. I am not considered for a mastectomy or reconstruction at this time. Being stage IV (brain met only), I need to stay in shape for the combo they put me on. That is still being decided and has to be approved by my government since I have free health care. One of the options being put toward the government is Herceptin/Perjeta/Taxol for me. Seems to be standard though quite often the Taxol gets dropped after a few weeks. In my case, she wants to continue Herceptin since no cancer from the neck down. She is concerned that if she puts me on Herceptin as first line treatment, my government will deny the Perjeta later and she does not want that to happen. If they say no Perjeta if on Herceptin, then she will push for Herceptin/Perjeta/Taxol and drop the taxol after approx 6 weeks.

One other thing, any taxol you may get would not be as strong as when your onc was trying to cure you. As stage IV, the chemo given is a lesser dose since you are going to be in treatment for the rest of your life. The goal is to maintain good quality of life while keeping your disease stable or better yet, NED. When you factor in targeted/hormonal therapies, you would not be on chemo necessarily the whole time. There would be SE, but from what I have read from the other Stage IV people, a lot of times they can be dealt with.

Good luck with everything.

Ojttocs · October 2016

I really appreciate everyone's input. I'm sort of overwhelmed;still sorting things out. I didn't realize the chemo was forever, for instance. Well, not forever, but no longer just hit and run. I feel (for maybe the first time in decades) completely uninformed and out of control. I know, I need to fix that myself. No one advocates as well as I do.

The surgeon's office confirmed what y'all said just today...over two weeks later. I will be evaluated for surgery later. I find the thought that lymph systems that remain behind serve as a conduit, so the horse really is out of the barn, makes a lot of sense. That's why the mastectomy didn't stop it. That the Taxol won't be as hard (I nearly died from Taxotere) also helps. And your negative experience with MD Anderson...very comforting, although I'm sorry it was so awful.

But I'm not ready for this. (I also know: who is?) My affected area is still relatively limited. I feel like I could still beat this for a while longer. I liked that illusion. I feel like it is slipping. I have no idea what to expect, and suddenly I've gone from focus of care to almost persona non grata medically. Last round, I got all sorts of attention and training and lord knows what...this time almost crickets until I complain.

Tonight I found myself confessing my status to a total stranger who had a pink ribbon shirt on. I asked about it, she told me she lost her mom and is watching a friend with Stage IV struggle...and the faucet began to flow. I was hoping for inspiration, and I ended up...dear heavens! Well, I met a new friend.

I do want to transition care down from Michigan to Austin, TX. Any thoughts? Has anyone done something like this?

Thanks, dear sisters.

zarovka · October 2016

Ojttocs - You can beat this for quite some time. If you would add your diagnosis and treatment history to your signature, people can be more specific in their response. You do this in your profile but look for a second step to make it public.

Texas has a lot of good cancer centers. Moving closer to you daughter seems like a great idea. Every moment with family seems precious once you are stage IV and everything that makes you happy or comfortable makes things go better.

The story about the stranger with a pink ribbon is funny. I was totally clueless about breast cancer awareness month until now. However since I actually am stage IV, it feels like continual trauma month to me. I generally like to forget about it have a normal day if I can, but then you find your daughters soccer team is doing a Kick for the Cure and they are all going to wear PINK. October is 1/3 over.

Getting the diagnosis straight and the treatment plan in place while you process this is hard, to say the least. Most of us develop PTSD symptoms during this period. But it does get easier and many people do well for a long time. Be kind to yourself and focus on what you love and care about.

>Z<

Ojttocs · October 2016

Done. It took a while; thank goodness I recorded most of it in my blog.

(cancertravels.blogspot.com, if you're interested.)

Meanwhile, here you are. Let me know what you think. My regimen begins on Thursday.

Ojttocs · October 2016

Wow! That was work! (You see why, of course.) What do you think? I've got a long history, but my plan is equally long.

fredntan · October 2016

I'm three yrs out from my METS dx. I am now on afinitor/aromosin. I was on east coast and my family made me travel all over for second opinions. Went to John hopkins-busy and dr was rushed. sloan kettering- I believe that onco said I wouldnt get chemo if I was stage 4-but maybe she said mastectomy.

I just found out the reason why. it going to take 8? weeks to heal before chemo restarts. that cancer can do a lot in 8 weeks

I found the big box centers cant do a lot of things since they are doing trials on something you could get at a small onco. Like Metformin. I took that in beginning. my onco let me use it. It gave me a sense of control I guess.

Now go kill some of those cancer cells thursday.

FLBuckeye93 · April 2017

I recently had a very disappointing experience at MD Anderson, too. I hope you have made progress is determining your care and move to Texas. Cancer sucks

Iwillwinthisbattle · April 2017

I don't blame you for being angry. Can you possibly get an appointment at a Cancer Treatment Centers of America? They have several sites and have saved my life (read my bio). Good luck!!

Ojttocs · April 2017

I always appreciate a recommendation. Anything is possible. I'm only just coming to understand what a battle this is. Thanks.

Ojttocs · April 2017

I always appreciate a recommendation. Anything is possible. I'm only just coming to understand what a battle this is. Thanks.

Ojttocs · April 2017

I did find a great location and temporary caregiver. That went well, at least.

bigbhome · April 2017

ojttocs- I did have a similar situation. Was missed by my mo in Atlanta until it traveled to several bones and face. She even argued with ENT that our had to be salivary cancer and could not be breast cancer up until biopsy came back. Exact same cancer I had fought 7 years before. I also tried to get 2ndopinion at MD Anderson and was told that until they received my $22,000.00, yes $22,0000.00 payment they would not schedule me for appointment. I stuck with my GA no for 2 years, then decided to move to FL where I would have more family and support.

Now going to Mayo clinic in Jacksonville. My previous mo medium size cancer center. Mayo huge! Works for me! My mo now has not missed 1 thing. He is always thinking 2 steps ahead. I am currently on Inbrance and letrozole for past 18 months. Have a spot on left hip that has gone active. His take, let's do radiation on hip since all other mets are inactive to buy more months on in Ibrance.

Moving, you lose that sense of familiarity, but I have found a fresh set of eyes are sometimes a Godsend and you will have a new cancer family.

Prayers for you!

Do you homework, Texas has some good doctors!

Ojttocs · August 2017

Thanks! Still working on it, in fact. Looks like I'm failing Kadcyla.

Shellsatthebeach · August 2017

There are many places you could go for a second opinion. You may need to travel if you are looking for a cancer center. I got my second opinion at Dana Farber and decided to do my surgery there since I agreed with their plan vs. my near by hospital plan. The good thing about MD Anderson for you is that it is close to your daughter and you can ultimately seek treatment from them. The plus about cancer centers like MD Anderson is the newer trials being offered. You don't necessarily get that just at any hospital. Good luck and hope things go well for you.

Furious! MD Anderson stops their 2nd opinion program

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