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What a bunch of crap!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

During the month of November Don (my husband) had trouble with food getting stuck - he wasn't choking, and it wasn't every meal, but became troublesome enough that he went to our primary care doctor. He had Don do a barium swallow test and sent him to a gastroentrologist that recently moved into the suite of offices at our medical center/hospital.

The gastro doc said "yup - there's something going on - we need to do an endoscopy". That was done on November 18. On November 21, we were called on the phone as the doc said he would do in Don's case to keep the ball moving, and told that indeed it was esophageal cancer. The gastro doc's office gal set us up with someone at Univ of Mich and said UofM would call us with the details.

On November 22 UofM did call and said they could see Don on December 23! I asked who is he going to see and I was told a gastroenterologist. I asked why are we seeing another gastro doc - we've already done that? She said that's what your doctor wanted. I then called the referring gastro doc and asked why are we seeing another gastro doc - it is my understaning that with esophageal cancer you need to move as quickly as possible and December 23 didn't seem right to me. Our primary care doctor's office is closed on Tuesdays so I could not speak with them until the next day - November 23. In the meantime, I called over to UofM myself and found out that indeed Don should not be seeing another gastro doc - he needed to see a throacic surgeon. They gave me an appt with a head and neck oncologist - Ok - then - we'll take that appointment but I am calling our primary care doctor to get him involved in this.

The office manager at the referring gastro doc's office admitted they had made a mistake and it was because the gastro doc is new to our hospital and doesn't know anyone at UofM to make a physician-to-physician referral to. Are you kidding me? He has two partners he should have consulted and asked for their assistance. You don't wait an entire month to do nothing at all. He even told one of his nurses or assistants - that a month wait was probably pretty typical for UofM. Unbelievable!

I did talk with our primary care doc on Wed, November 23 and they tried to sort this all out and see what happened - who cares what happened - just fix it - then look at what happened and prevent that happening again. Now we have Thanksgiving on Nov 24 and of course, no one working on Friday the 25th. But the primary care doc would for sure get things going on Monday, November 28. They did 'start' working on it, but of course, they are closed on Tuesday, so we didn't hear anything from anyone until Wednesday the 30th.

We finally got an appt with a thoracic surgeon who does the THE at UofM and has been very well trained by Dr. Orringer who has perfected this surgery and who actually has done more of these surgeries (THE which is also an MIE procedure) than Dr. Luketich (does the MIE) who has recently changed the procedure he performs.

In the meantime, Don had a CT scan (11/20) and a PET scan (12/3)and the thoracic surgeon needed clearance from a cardiologist that Don could be cleared for treatment and surgery. Now our cardiologist was killed in a car accident two years ago on his way to his daughter's graduation. Don had a heart attack in 1996 and a stent placed. He had done so well over the years and takes a bp med and chloesterol med and an aspirin every day. The cardiologist and our primary care doc decided a long time ago that Don could be managed by our primary care doc unless some other issue came up. So we had to be reffered to a new cardiologist. Went there and he set up a stress test for the next day so it could be done prior to us going to the thoracic surgeon (12/13) and the doctor who was doing the EUS (12/9). Stress test fine. Proceed with EUS on 12/9 and see the surgeon on 12/13.

Surgeon says you need to have chemo and radiation and we are going to refer you to West Michigan Cancer Center in Kalamazoo, MI which is a lot closer to home for us. Great.
We see the chemo onc on 12/16 and spent 2-1/2 hrs with him and his staff. Very thorough and found out that Don could be tested for HER2 for a clinical trial. No big deal - won't hold anything up - they'll just overnight the tissue and it would take 2-3 days to get results. No big deal. Chemo doc is going to consult with thoracic surgeon and radiation onc on feeding tube - whether or not to place it first.

On Monday (12/19) we go see the radiation onc (who is going on vacation but that won't be a problem!). Not going to do feeding tube unless necessary - two out of the three doctors prefer that. Ok - we'll go along with that and hope we don't have to do while he's on rad/chemo. Also - when they make that decision they can then schedule the port-cath which they held off on pending the feeding tube decision. Radiation doc says ok - get the port-cath set up hopefully for next Tues and treatment could begin Wed (12/28). Turns out the hospital can't do the portcath until the 28th. Ok - now we're thinking - we'll start the 29th - the radiation doc said they can do the port in the morning and you can begin treatment in the afternoon. Well the port isn't going in until 11am so the likeliehood of treament starting the afternoon of the 28th is probably not going to happen. We are, naturally, very anxious to begin treatment - it has been a month of nothing but tests, we're finished with all that crap - let's get this show on the road.

Need to come back today (12/21) for simulation, mapping, tattoos, etc. The nurse from the chemo office came in while we were in the office at radiation doc and said that she overnighted the biopsy tissue sample yesterday (supposed to have done that last Friday) and needed to wait for that to come back to see if Don would be part of clinical trial so treatment won't start until Jan. 4. She failed to tell us that if Don is HER2 positive and can do the clinical trial that radiation is delievered with a different type of machine - she said she did not know this until this morning. So her and some other technician chick took our frustration with waiting as to mean we don't want to participate in the trial - they took it upon themselves to call another hospital to see if the port can be put in this week and that would allow Don to start treatment next Wednesday.

Well, that's when I got very upset and told them just what I thought of this whole deal - and they need to communicate and disclose information so patients can make an informed decision as to the care THE PATIENT CHOOSES. We were told that the clinical trial deal would not hold anything up, yet apparently it does. You cannot have simulation, mapping, etc done in the 2-3 days that the radiation onc told us - the technician said it takes 7-10 days. The chemo doc told us that the port could be ordered and put in within 2 days - not it cannot.

None of them can tell us at what point does this tumor go from stage III to stage IV - they all seem to know that this is an aggressive cancer and swift action is necessary, but now we're looking at the minimum of one more week or even possibly two more weeks depending on whether or not the other hospital can do the port earlier than next Wednesday. Still waiting to hear from someone on that issue. Don does not to participate in the trial if it means waiting longer to get treatment. He wants treatment to begin - and was hoping that it would start before Christmas. Like I told a couple of the doctors and nurses WHEN YOU HAVE CANCER THERE IS NO HOLIDAY. I told them just how unhappy I was with their whole deal over there and I left the office. Don and our daughter stayed. I went outside and cried and smoked a cigarette in their non-smoking parking lot!

Of course, insurance plays a part in this scenario also as their permission for anything to be done is required and that is crap - we should not have insurance companies who are always mindful of bottom lines (i.e.; bonuses for themselves)dictating whether or not a test is necessary. Our doctors are for the most part honest, have been very well trained and know what steps are necessary. We pay our premiums - no questions asked - like "is this really necessary - I think I should only pay you half that much". We should not have to add waiting for referrals to the already lengthy process of getting Esophageal Cancer treated.

If ever there was a clusterf)*^ - this is one of them.

This afternoon, we are off to the primary care doc so that Don can have a pulmonary function test and we are all getting our flu shots. Hopefully, by venting here, I will get it out of my system and not go off in their office.

Thank you if you bothered to read this - I just had to get this off my chest and on 'paper'.

Judy

sangora
Posts: 218
Joined: Mar 2011

Since I am my own everything, I am glad I didn't have to deal with your program. I would have given up. Makes me want to hug everybody I see at the University of Virginia Cancer Center tomorrow. My entry was as seemless as glass. Sam

Freida
Posts: 191
Joined: Nov 2011

Oh Judy, I am so sorry. You poor things. It really does add to the stress doesn't it. I think they forget they are dealing with actual people sometimes.

If you guys are not feeling confident in your team, have you considered a major cancer center? Things moved a whole lot faster for us once we got to MDA.

Once we got to MDA everything moved very fast (other than the delays caused by the glitches like the heart attack scare and the blood clot, which were outside of their control). Time line wise our visit was:
Tuesday: Met with the oncologist for the first time. Had blood tests. Had EKG.
Wednesday: Had the PICC line installed. Had chest xrays.
Thursday: Had pulmonary function test. Went to the classes to learn how to take care of the PICC line. Had the CT scan.
Friday: Had nuclear stress test (5 hours). In between parts of this, did return demonstration on PICC line care (to allow me to do the care at home).
Tuesday: Had EUS
Friday: Chemo started
Chemo would have started tuesday or wednesday but for all the other drama that happened that week. So it would have been a week or a week and a day after we first walked through the doors at MDA. After a month of doing nothing at home. But we are not doing the radiation yet, so admittedly I don't now how that would have affected the time line.

Hugs to you and Don. I really hope things go smoother soon.
Love
Freida

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

Judy, Getting started and doing SOMETHING is usually highly desired. We were told that it is not unusual for a time period of 3-4 weeks from diagnosis to the start of treatment. You have been through the ringer! Don't you just want to scream? We went through all of the steps, also, just like you, One day this, one day that...... Don't lose anymore weight, but fast for a couple of weeks to prepare for whatever test is scheduled for any given day!!! Bob had surgery at Mayo, Rochester and had we gone there to begin with his treatment would have been started much sooner. They do most of the appts in a day, or two, your meetings are all set up and just like that within a couple of days you have a plan. Very fast and efficient there. Now, we were not at Mayo for diagnosis and start of treatment, but I just wanted to let you know that it is possible to start chemo without a port. It is not their favorite thing to do, but when it benefits the emotional side of the diagnosis to "get started and be doing something" it CAN be done. Bob had his first treatment without a port and I know he felt relief with starting treatment. He was very insistent. His port was put in about a week later and the 2nd chemo treatment was via port.

I'm so sorry for what you are going through and know the frustration. Just stay on it. No one watches out for our loved one quite like we do. We know when something is right, and when it's not, so stand your ground. We are not unreasonable, we just want the best care we can get. I really hope things come together and chemo can get started. Just wanted to let you know you aren't alone in this battle. Linda

jss2011
Posts: 137
Joined: Sep 2011

Hi Judy, This sounds so familiar!! With the exception of the insurance hoops as I am in Canada. Feel free to vent whenever you need to.
Now I will tell you what our dr has said, even though this is an agressive cancer it's not like it will progress overnight, it has probably been there for years. Still not happy hearing that, but...
My Hubby was dx in mid jun and didnt start chemo till sept 3 ish and that was with my saying WTF to the surgeon. We didnt even find out staging T2N2M0 till chemo had already been started. I wont even go into wait times if we want other options.
I know how stressful this is, but everything will fall into place.

Julie

T-Bird
Posts: 25
Joined: Aug 2011

Hi Judy;

sorry to read you are going through all this "crap" and "clusterf$&*#.

Although my situation was totally different (I had all my tests done and treatment started within a month, here in Alberta, Canada)

I concur with everyone else, that everything will eventually fall into place.

Just wanted to let you know I am thinking of you & Don.

Best to ya!

Teresa :)

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

To frost the cake ~ this afternoon while Don was in the primary care doc's office getting the pulmonary function test done, the chemo office called and Don will get his port put in this Friday. That of course, means that if he is HER2+, he will not get to take part in the clinical trial, but maybe our insurance would cover herceptin if he is HER2+.

I called the radiation office back and said 'now that he's having the port installed this Friday, can he start treatment on Tuesday in lieu of Wednesday'. The scheduling gal was confirming his time for Wednesday when she told me that he was down for 8:40 a.m. and the sheet that I had in my hand had him down for 1:40 p.m. So again, glad I called - because he would have shown up and waited for who knows how long for his first treatment?

AND GUESS WHAT? AS I AM TYPING THIS, THEY JUST CALLED AND SAID HE CANNOT HAVE ANYTHING STARTED UNTIL JANUARY 4TH BECAUSE THEY CANNOT GET THE SIMULATION AND MAPPING DONE PRIOR TO THAT DATE. SO NOW WE WON'T START UNTIL JANUARY 4TH! UNBELIEVABLY TRUE.

Guess now that they've screwed around this long, if he is HER2+, now maybe he can participate in the clinical trial.

We are so far into the process at this point, to go somewhere else would only mean further delays and neither of us wants that.

Don is T3N1M0 and we'd like to hold it there - this all started with a visit to primary care doc on Nov. 9 and looks like January 4th for first treatment. Compared to Julie, sounds like we'll get in a little quicker.

I cannot find any information as to how fast this cancer really grows - exactly what does 'aggressive' mean? We were told he's had the tumor for about a year and he had CT scans 2 summers ago because he had MRSA internally and in diagnosing that, they did do a CT scan with x-rays after treatment which showed no spots. So we know that he hasn't had it any longer than two years.

Life goes on - right? (I must chant "This too, shall pass."
Judy

JaneO's picture
JaneO
Posts: 42
Joined: Dec 2011

So sorry to hear you guys are getting such the run around. They don't seem to know how to coordinate care very well. I know in the beginning it seemed to take forever to begin treatment. We had at least three appointments a week. Our oncologist kept telling us it would come together, but it was all so new and foreign to us we felt like we were sucked into a tornado. I remember thinking like you...the tumor is getting bigger everyday so why don't they just start already? He was diagnosed mid July and he didn't begin chemo for a month. We were told to go ahead and put the port in and the feeding tube in all in the same week...but the waiting to begin the approved treatment plan was agony.

After completing the first round of chemo and having a PET last week, we have decided to switch to a new oncologist from a Boston hospital and not the local community hospital. Jack is Stage IV and we really need to be under the care of someone who really knows his stuff. Hopefully switching and beginning over at a new office won't be too difficult. Keep speaking up when you know something doesn't go right or make sense! You're doing a great job!

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

First off let me say the crap you're dealing with is way too much!! Don't they get it?? This cancer is typically an aggresive beast and they need to move faster than that with a treatment plan. I think would be screaming loudly by now. I think they're lucky it was only a regular cigarette you were smoking in their non smoking parking lot! Vent here often...we're here to listen.
Hugs to you both as you move forward...hopefully at a quicker pace!
Rita

ChaadMN's picture
ChaadMN
Posts: 33
Joined: Sep 2011

Judy,

Use this group to vent all you want. That's what we are here for. We all can learn from each other. It sounds like you have had a difficult time coordinating things, but I assure you that it will get better once treatment starts. My experience tells me that it does take time for all the involved doctors and nurses to all get on the same page. Once they do, I am sure things will move smoothly.

One note on the HER2 study. Your story sounds similiar to what happened to me. I was tested for HER2 and I am positive for it. They wanted to enroll me into a clinical trial for rads and chemo. I was all signed up and ready to start when my oncologist suddenly put the breaks on and things came to a halt. Apparently the study I was eligible for used a sub par radiation protocol. My oncologist told me that I would get better radiation treatment with more advanced equipment if I was NOT in the study. Apparently the clinical trials have to be administered in the exact way prescribed. I quickly dropped out of the study and got the better treatment. If Don is eligible for a study, I would ask to see if better treatment is available if he was not involved in the study. My oncologist could not believe that the trial was using outdated radiation technology.

I wish both you and Don luck in the coming days to get treatment started.

Chad

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Judy,

I know this must be frustrating, unfortunately, it sounds similar to the experiences I have had with the medical bureaucracy as I moved through diagnosis and treatment. I was actually diagnosed in early November of 2009 and began my treatment plan in early December. It seems to take about a month to get things moving. I know there are people here who have been fortunate enough to have all their testing completed in a few days, and treatment plans begun in a couple of weeks, but that does not seem to be the norm.

The one thing I have learned is to take nothing for granted and to follow up on everything. There seems to be a real loss of "sense or urgency" between the physician and their staff. Your really have to be your own advocate.

Unfortunately, it sounds like you and Don have been caught up in three two day holidays in a two month period. That adds an additional week and half all by itself.

I am sorry for your experience; hopefully once we get on the other side of the holiday period things will begin to move forward more aggressively.

Some cancer treatment centers have a "nurse navigator" that can be assigned to your case to insure tests and treatments are coordinated effectively, and many insurance programs have nursing coordinators assigned to "complex medical cases". I have BlueCross BlueShield and they have a nurse assigned specifically to my case. I could contact her directly to get answers to coverage questions. Perhaps WMCC and your insurance company may have similar services?

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Chad: We were told the same thing about the clinical trial - it needs to be done on a different machine - BUT - we were not told it was subpar. In fact the clinical trial nurse didn't explain that this trial would involve another setup. I think we will tell them we are not interested in this and if Don does happen to be positive, hopefully, our insurance will cover it.

Paul: We have BlueCare Network - I will check to see if we can have a nurse to coordinate for us and answer questions. I didn't even know something like this existed. Man! You pioneers are so chocked full of information - holy cow! I will also inquire with WMCC - although - so far I have not been impressed with their rodeo. After the past few days though, if they don't have one, they could sure as heck use one - I'll put that in their suggestion box!

Everyone: Thank you for your support - I truly don't know what we would do without you pioneers to help us. I read each new post each day (several times a day) and I absolutely amazed at the information, tips, recipes, ideas, suggestions, and support that everyone contributes to this site. We are truly blessed to have each of you with us during our journey.

Now I know why Chemosmoker WRITES IN CAPS - You cannot underline, bold, or otherwise express your emotion on here (not a fancy smancy word processor - but it works!)

Thank you,
Judy & Don

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

You poor dears! What a nightmare. I recall our first visit with the Oncologist when he sort of delayed the start of the treatment a week. I think it was from a Wednesday to a Monday. I said I didn't want mom to move into Stage 4 and wasn't sooner better. He said it doesn't move that fast. I don't know how fast it moves, but apparently not "that" fast. So what is that? Is "that" the x-factor? Are they wild guessing? I dunno.

To me it's like GET THIS CANCER OUT! Not tomorrow- TODAY!

Seems mom and I have traveled a long long way since that day. 28 days of rads M-F. Ok, cool. Should have been over done with a long time ago. I didn't know about lab work, chemical imbalances, hospitalization, and that "28 days" could turn into months!

Today's word is "5 more treatments" Ok, by my book we should be over said and done come Thursday of next week. I'm crossing fingers, toes, eyes, and anything else I can cross!

I do believe your delay was unwarranted. I think when this type of cancer is detected, there should be no delay whatsoever other than waiting for scans and tests. I think it was very unfortunate that this happened at the beginning of holidays. I would have screamed and cried too!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

oops - dbl post.

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

OMG, Judy! As if this isn't all so scary and overwhelming when you first get into it! And after you'd done your part to be well informed. Scream all you want! Not good to hold anything in. Good thing you're checking and double checking on appointment times, etc.

In my husband's case, the biopsy report came back on June 13, we saw the oncologist June 14, he had a PET scan June 17, an EUS June 20, and we saw the oncologist on June 21 with a Stage IV diagnosis and treatment plan. The reason I'm telling you this is that we were scheduled 3 days later to take one of our granddaughters on a trip. Maybe because he is Stage IV and maybe not, but both the oncologist and our family doc encouraged us to go on with the trip and said 2 weeks wouldn't matter. I didn't think I could do it, but we did and it was great. So we had our chemo lesson on June 6 and started treatment June7.
Hope you can get underway soon! When they started Larry's first IV, I texted the kids and just said, "The healing has begun"---and burst into tears.
Angie

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Judy my hubby was dx in Dec in Kalamazoo at Ears nose throat doctor I will not use his name cause he said he would be there for us , but was only a put on if you ask me.Cause when I called for something it never happened. Anyway he went to Ann Arbor that took almost 8 weeks to get in there is was seen by Dr Casper, (he is not there anymore). Greg's Dr. Chepeha and Dr Worden there have been good to us.In 2010 We wanted some place closer we also went to the Cancer center in Kalamazoo, but decided to stay with Ann Arbor,We were not happy with the service in Kalamazoo .When I said something to the doctor about it he said Well you have to remember we are a bussiness. My hubby was T4N1Mo but in Dec 2009 it went to his lungs . He is still recieveing treatments in Ann Arbor. So it is a full of ups and downs. I just wish I knew how to help you with this. I know we have had what we think to be caring and great doctors in Ann Arbor, not to say that Kalamazoo is bad, it was just not for us. I wish the best for you and your hubby.
Jennie

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Judy, I think I posted this before when you came here, and I know how anxious you all are and how frustrating it can be. I remember when we talked to the crew at Northwestern, the radiation onc guy was fantastic and he emphasized over and over that getting the mapping and simulation ready is and done right is key to treatment and you don't want it rushed. That one step usually takes a week of work for the radiation oncologist. I had the same worries and he was very reassuring that 3 weeks will not make any difference in the tumor staging and that the planning has to be done perfectly. I felt very reassured and we ended up going somewhere close to home and they too took a couple of weeks and then when we got started, everything was in place and went smoothly. So, I think things should be fine starting early January even though it feels too long. Just wanted to share what we were told regarding timing and all.
Cora

preacherchad's picture
preacherchad
Posts: 62
Joined: Dec 2010

Judy,

The best I can say is, read Paul's response. I experieced some of the same issues your husband has.
I was dx on Nov. 11, 2010, and did not start treatment until January 3, 2011. I too, felt this was way to long to start treatment. I am happy to say, the month and half I waited to start treatemt was not enough time for the cancer to spread. I pray the same for your husband.
As hard as it is, take it one day at a time. That was the hardest thing for us to do.

God bless

chad

ECson
Posts: 26
Joined: Nov 2011

Judy, your story makes me grateful for my dad's care. We were diagnosed on 11/16, had CT 11/17, medical oncologist meeting 11/18, PET 11/19. Then we were staged as IV Tuesday 11/22, chemo port placed 11/25. We then had radiology oncologist on Monday 11/28, follow up medical oncologist 11/29 and started cisplatin, taxotere, and two day home 5FU pump. We went from diagnosis to treatment in two weeks!!!! I think we were blessed for sure.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Dang! You're right - it's a clusterf*#$. Nick was 1 month and a day from diagnosis to 1st chemo. Rads started 1 week earlier.

One comment - THE is NOT an MIE surgery. It may have fewer & possibly smaller incisions than the Ivor Lewis, but the 2 THE incisions are nowhere near band-aid sized wounds. Nick's got about a 6" scar on his left neck and a beautiful "seam" from belly button to bottom of rib cage. A true MIE is 5 band-aid sized incisions, I believe. Just an FYI :)

The timing *will* work out. Things will work out for Don. But others here are right - stay vigilant. It sometimes takes an aggresive, impatient caregiver to make sure our significant others get the care we know they need. I hear the roar in your voice. I know you won't let Don get neglected.

Keep us handy for when you need to gripe. We're here for you, Judy!

Love & Hugs to you

Merry Christmas too! 'tis the season for miracles - I think we're due a few around here!

Terry

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