MD Anderson (and other cancer centers) treatment process questions

The Coffee Shop
1

Grasping at straws here.

My mom has been diagnosed with cancer of unknown primary and is trying to get into MD Anderson in Houston. She was originally turned down because of insurance reasons (out of state insurance), but now my parents are getting everything together to show they can pay the 30% copay etc, but the whole process is taking longer than I think it should. Some of this I’m sure is my parents accepting that things take time, but it’s been over a month since we started on this whole cancer path and I’m starting to get very impatient. I was able to accept the wait and see thing for a couple weeks, but since we are still without any answers, and after there are answers from MD anderson about being accepted there’s still the wait and see because it’s CUP, I’m no longer going to let my parents just wait and see.

We (my brother and I) are also starting to formulate a back up plan for Sloan Kettering in NYC, but Houston is my parents (and her oncologists) first choice for more testing etc… So any info regarding SL would also be helpful. Or other centers we should be considering? My brother lives in Columbus, so we considered the James, but don’t think that’s the best option given CUP. Never having had to think about cancer treatment centers before, we feel behind the curve on knowledge of the centers and what they specialize in.

Does anyone have any information on the whole process or contacts at MDAnderson?

2

GhiaGirl,
I know of quite a few people who have been treated at MD Anderson, and I have yet to hear anything negative about any of their experiences with the staff and facility.
Have you gotten your hands on a LiveStrong Guidebook? Addressing the situation you find yourself (and your family) in is one of the primary purposes of LiveStrong. They offer a service called SurvivorCare (866-235-7205, 9am-5pm Central time or http://livestrong.org/Get-Help/Get-One-On-One-Support) which may be of use to you in helping to determine the most efficient way to get treatment authorized/started at MD Anderson.
If you want to better educate yourself on CUP- or any cancer for that matter- you can go to nccn.org (national comprehensive cancer network) and view the clinical practice guidelines for CUP (you’ll have to create a free account, easy to do) or pm me and I’ll email you the pdf.
So sorry you’re having to go through this. Cancer sucks.
John

3

When my sister went through diagnosis we found it was much easier to get “in” if your local onc can refer. I would contact your local onc and ask them to write a letter/referral to the MD Anderson doc you want.

4

I don’t know anything - just wanted to say I’m sorry to hear about your mom’s illness and I wish her and your family the best. (((hugs)))

5

There are no easy answers to the questions that you pose, watch and wait for some cancers is the appropriate course of action, many men die with, but not of, prostate cancer and therefore waiting is something that simply associated with the disease progression.

There are many excellent cancer centres in the US, MD Anderson and SK, to name but two. There are strong links between volumes treated and outcomes, obviously with rarer cancers this becomes an issue, as they need to be treated in more and more sub-specialized units. For common cancers (breast, lung, prostate, CR etc) the issue will be finding a center that treats sufficient volumes and demonstrates good outcomes.

We’re currently involved with a number of US Cancer Hospitals, Mayo, CC, JH, Mass Gen, SK and others and in many instances the reality is that theses organizations all provide excellent care across a broad range of CA’s, they all have very good outcomes and all things being equal, two patients with the same / similar diagnoses would expect the same outcomes.

The first thing I would do is to identify a oncologist, radiotherapist, surgeon or physician who can help guide you through the process, be it a friend, family member or someone that is currently providing treatment. Even a family physician can assist with this. The next thing is that your parents attend meetings with their clinicians and take along someone else to listen and take notes. As an organisation, we provide that person where I work, as patients and family members receiving the diagnosis and other information simply do not take anything in, the importance of taking along a friend / 3rd party can not be underestimated and 3-4 weeks ago I ran in to one of the local ambassadors wife in the hospital every day as she was there as a friend to some patients, to listen and take notes and to ask questions on their behalf because the reality is that you can not think of everything on the spot.

I’d want to know from my primary physician if the case has been discussed at a Multi-disciplinary team meeting, the outcome, suggested course of action (other than wait) and some idea on the content of the discussion. These meetings will normally be held weekly (more or less frequently depending on volumes of the particular CA being discussed) and will be attended by surgeons, physicians, radiologists, int rad, clinical nurse specialists where appropriate and a discussion of the patient will be undertaken and a course of action determined. I’d also want to know when they will discuss the case again, and the frequency with which they will follow up.

Out of curiosity, how did they find it and what stage is it? (obviously you dont have to answer that but I’d be interested)

I’d finally look for a support group very early on, I’m sure Livestrong can assist with this, but the importance of this can not be underestimated.

my $0.02

6

You didn’t mention whom is referring her to MD anderson so most of my input is based on that.
Has your mother already been seeing someone local to you or them? Is there a special type of surgery or test that they can not do locally? Meaning a local surgeon might only do three or four a month while an MD A. doc does three or four a day. other than that.

The vast majority of cancer treatment done today is based on clinical pathways. Meaning it’s virtually universal treatment where ever you go. MD Anderson might have some clinical trails that others don’t, but if she is in the just getting diagnosed stage, she needs to be staged first. which doesn’t need to be done at MD Anderson. In fact US Oncology is the largest cancer treatment in the US treating nearly 60% of people with a cancer diagnosis and they are set up as a many local centers, and are part of more clinical trials than MD anderson. if you haven’t yet, check to see if there is one close to your parents. What is the actual reason the referring doc is sending her there. Is it an actually Oncologist? Surgeon, Family Practice?

For an out of state patient depending on how they are referred and whom they are being referred to doctor wise (are they attempting to see a specific doc?) it’s not unusual for the wait to be that long. I can tell you many instances of a patient being seen and we are literally waiting on insurance to start treatment and it’s 3-4 weeks waiting for the go ahead, which could be their case. It’s not their 30% that MD A. is most worried about since they will just bill you or set up a payment plan, it’s the 70% from the insuranc.

The best bet though to get some type of treatment is to see your local Oncologist or cancer center to get the ball rolling then see if she needs to go there

7

Thanks for the answer.

My mom went in to her doctor (in Mobile, Alabama) for a regular check up. She had a spot on her abdomen. She was referred to a surgeon who cut it out and sent it off for a biopsy. That was then sent to the Mayo clinic for a second opinion. My parents live south of Mobile, but we have no other family around there. They are currently in Ohio because we had a family reunion last weekend. I’m starting to see some disconnects from Alabama. The hospital she had the tests done at don’t have a patient advocate, they contract out to another hospital in that area. While everyone in Alabama understands the severity of this, it’s not something they do on a regular basis, so we are getting some blank stares etc… when we ask questions.

We (my brother and I) succeeded in getting my parents to consider a back up (SKMCC) and to start the ball rolling for that before we know the answer from MD anderson.

My understanding is that MD Anderson and SKMCC are two of the best for CUP because of the type of testing they do to help identify the primary cancer. My parent’s (and her oncologist’s) first choice is houston, the rest of us would prefer SKMCC (my cousin works there and my sister lives in NYC), but Cleveland Clinic is another top choice because it’s close to family, and we have a distant cousin that works there… If Houston is where they end up I’ll be there 2-3 weeks a month to help with the process, and my brother will be there one week a month.

I’ve been told that the next course of her treatment will be a biopsy on a lymph node and then chemo (depending on what the biopsy shows). Yesterday she got the results of a scan that showed a golf ball size mass in her abdomen.

8

Thanks for the information. These are the types of things that I want to know.

Her oncologist referred her to MD Anderson. From what I can tell, it’s because it’s CUP, and they have a testing protocol that will be used to hopefully identify the type of cancer.

9

I’d pick the Cleveland Clinic in a heartbeat even over MD Anderson, if there is family nearby. But I’m quite biased since I was recruited there and stayed about 8years before the winters drove me to Texas

10

I personally, would do the research myself to find the best center for your Mom. We dealt with a Very Rare cancer with my sister and found message boards and PubMed to be excellent resources to determine the best doc/center for her. We could have pulled strings to have her seen at MD Anderson but instead determined that Dana Farber was her best bet due to research and clinical trials we found from the docs there on PubMed.

Good luck. This is a gut-wrenching experience. My sister has a 90% nonsurvival rate (based on her mitotic counts) but she is currently NED.

11

kathy_caribe-
Wow! Awesome that she is NED!
You made my day with that post!

GhiaGirl,
So many great bits of advice here.
I wish your mom, you, and your family the best on the road ahead.
Cheers,
John

12

Hi,

You need to follow Gary’s advice.

By and large organisations using evidence based medicine, clinical pathways (there are dozens of these including map of medicine, NICE guidelines, many of the clinical bodies (American Soc of “X” and “Y” produce their own for Breast, Prostate, Colo-rectal etc) the process will be one of suspicion, confirmed diagnosis then on an ongoing basis there will be a MDT (they may not call it this but it will be where all the relevant clinicians meet to discuss and develop a treatment plan) in which staging and the treatment plan will be defined. These meetings will usually be ongoing and discuss all CA cases within a given specialty on an “as-needed” basis.

This is very important, because you want to ensure that the correct treatment plan is developed and followed, for some people this might be interventional radiology followed by surgery, for others surgery etc etc. The outcome of this meeting should be a collaborative decision on what is best for the patient based upon the best available clinical evidence and the individual patient concerned.

Now, I’ve worked with organisations where this discussion has not occured and patients were referred and discussed post operatively where it would have been more appropriate for int rad to be involved earlier for example. The important part of this is that “A” clinician sits down and explains what they are doing and why they are doing it.

The important info for you to obtain in the short term would be the type of CA and its stage from which you’ll be in a better position to discuss and review treatment options.

All of that said, unless this is a very rare form of CA, the likelihood is that CC, SK or MD would all be broadly speaking comparable (and there would be many others getting similar risk adjusted outcomes) and it may then simply come down to how you feel you are communicated with (hugely important) and their attentiveness to your individual needs.

13

thought i’d update.

my mom wasn’t accepted to MD Anderson. They won’t accept a patient that is eligible for Medicaid but does not have it. She has blue cross/blue shield, which (according to my dad) a better substitute for medicaid and paid for from her social security checks, but no medicaid so that ended up being a no go.

While all this was going on all her scans/tests etc were reviewed by a panel of oncologists and the diagnosis was changed to mixed mullerian cancer. One scan showed a mass in her abdomen and a swollen lymph node. We started the process to get her admitted to Sloan Kettering in NYC, but since it wasn’t as rare/unknown we knew she could be treated in mobile. She had a PET scan last week which showed nothing. She was also scheduled for a hysterectomy and a biopsy of the swollen lymph node in Mobile. The whole process was very trying for the family because we weren’t happy with the communication between doctors in Mobile and the time frame that everything was being done in, but we realized that the surgery was necessary and might give us more clues into the cancer. we were prepared for a completely different diagnosis to come from the surgery.

And it did. Sort of. The surgery showed no signs of cancer. A benign tumor was removed and the lymph node biopsy came back negative for cancer. They took some more tissue samples for biopsies and the initial reports are no cancer anywhere. Which goes with what all the tests/scans said except the initial biopsy of a skin lesion that showed a type of bone cancer. So we are cautiously optimistic that she beat the cancer.

Thanks for everyone’s comments and PMs.

14

Good to hear.