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Still waiting

Alice514
Posts: 21
Joined: Mar 2019

So my initial diagnosis was over a month ago, and I'm still waiting for the staging to be done. Colonoscopy was 2/12, 0.9cm polyp removed from rectum near sigmoid. "The talk" with my GI was 2/19. CT scan (good news there) was 2/20. Initial consult with surgeon was scheduled for 2/27 but went completely sideways when I got a call just hours before the appointment to cancel. Long story, but it ended up being a good thing because I got a referral for a colorectal specialist in the state capital instead of a general surgeon in my podunk town. (My insurance is a regional HMO.) Sigmoidoscopy on 3/5, GI took samples from where the cancerous polyp was removed and biopsy showed "no active disease at site." GI called this "great news" but still wanted me to go for surgical consult. Finally got in to colorectal surgeon on 3/5, and she was more blunt than my GI. She said I still needed an MRI and bloodwork to complete staging. But based on size and location she was talking chemo/radiation, then surgery, then chemo. Said I would be going to tumor board. This felt like a blow, because my GI keeps saying things like, "it could already be gone" and "I still think we caught it early." But, got bloodwork back right away, and nothing looks out of order there except high glucose. CEA was 0.6.

Anyway, just getting the MRI scheduled has felt like a struggle. Because the specialist is a "contracted provider" it would have taken 10 days just to get approval before scheduling would even call me. So I did an end run and had my GI schedule it so it wouldn't need to go through that approval process. That took many messages and phone calls to be sure that the order said "rectal cancer staging protocol" as the surgeon specified. Basically since she's from "The City" she thinks nothing that's done in podunksville will be done to her standards. (Even though podunksville is a city of 300,000.) Which made me paranoid that the order wouldn't be submitted right, and I called all the offices involved, including Radiology to make sure the orders had the right wording. And even though I did the end run around the approval process, they still couldn't schedule me until 10 days after my surgical consult took place. On a Saturday. Yay, no missed work! Oops, not so fast. Got a call the next day that they wanted to reschedule for a Monday because I had indicated that I am sometimes a tough stick, and they wouldn't have a nurse on backup in case the tech couldn't get the IV in.

So now the MRI scheduled for this Monday, a full 12 days after I saw the surgeon for the consult. AND I'm supposed to have a follow-up appointment with the surgeon next Wednesday. Not only am I not sure the MRI results will be available to her by then (even though they were put in as ASAP), today I called the insurance to make sure that my appointment was approved. Because the doctor is a contracted provider EVERYTHING has to be approved. I was told it shows as "pending." Because her office didn't even put in the request until this past Tuesday. In spite of the fact that I called them to make sure that the request was put in in a timely fashion. So now I'm worried that I'll have to reschedule THAT appointment. And that it will be another 2 weeks. And then I will have to wait for oncologists to call for scheduling.

Anyone else out there have to wait an interminable amount of time just to get staged?? I mean, in my case I no longer have a tumor inside of me, so that's one thing. But I just need to get this process started. As someone with Generalized Anxiety Disorder, the worst thing for me is when there are loose ends flapping in the breeze, and having to wait for things to happen. I've made my peace with what the treatment will be, and while I'm not excited about it I feel like I just want to move forward ASAP. On top of that I've been trying to get some mental health assistance, and once I finally got a call back (from my 5th choice doctor, no less), that appointment won't be for another 18 days.

Meanwhile I've been following advice gleaned from these boards. Bought the meditation CD. Installed the bidet in anticipation of radiation. Looking at what chemo drugs may potentially be used (and how much they are/arent' covered by my insurance). Filling out FMLA paperwork and state disability to try and stretch out my 404 hours of banked sick leave. Part of having anxiety is being a compulsive planner. Oh, I was wondering.... I've seen references in old posts about flushing twice and keeping the lid down. Is that to make sure that pets don't drink radioactive toilet water? Tongue Out

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

From what I've heard we're typically staged after surgery, once they've taken the lymph nodes out. The difference between stage 2 and 3 is whether or not there's lymph node involvement. The difference between 3 and 4 is whether there's mets elsewhere, if it's spread. I don't know what stage 1 is. So they'd remove lymph nodes and see how many, if any, are involved. 

Yes, I always make sure the dogs don't drink the toilet water. Particularly during chemo. I remember the spill kit I got when I first went on it, it's scary. I know that when I'm at the hospital for chemo only patients are supposed to use the toilets in there for that reason, not the general public. My husband has a friend dealing with bladder cancer and he was given doses of tuberculosis to help combat it. He had to flush twice and clean the toilet every time and used one paricular toilet while his wife used another one.

Jan

Alice514
Posts: 21
Joined: Mar 2019

I've been thinking this was kind of preliminary staging, and that it could change depending on what's found during surgery. My surgeon said she wanted to send me to the oncology team as "a package" with no missing data (MRI, labs).

What's a spill kit??

What do you do in a one bathroom household? I live alone, but I was planning on having my mom stay with me during chemo/rad and post-surgery.  And I plan on working through chemo as much as possible. What do you do in public toilets?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

A spill kit is for any chemo spills. The first chemo I was on came in a bottle that I had to wear on a belt for a week at a time. It had plastic lines that went directly into my port. If the chemo comes out of it in any way you have to use the spill kit to clean it up due to the chemicals. Gloves, a plastic cover for your clothes or whoever is cleaning it up, things like that. And you have to take the cleaning supplies to the hospital for proper disposal after you use it so they can put it in with hazardous waste.

I never worried about public bathrooms. In the chemo station so many people go in there in a day it's probably a lot more of a concern. We have two bathrooms and each use our 'own' o it wasn't an issue. I suspect your mom will be fine but maybe ask them the best protocal. Maybe flushing twice or maybe once is fine, I don't know.

Jan

Trubrit's picture
Trubrit
Posts: 4824
Joined: Jan 2013

I was never told about the toilet, and shared one with my husband and children. 

If you flush twice with the lid closed, that should contain any unwanted fumes or whatever, that escape. 

Have your mum stay, and all will be well. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Forgive me for using humor, but maybe you should put the meditation CD back onWink.  Each day, whether with or without a diagnosis, is precious.  Perhaps you could worry less about the medical world and more about the sunrise, the sunset, and the coming of Spring. That is where life really exists, from my perspective.  Once again, retreating to self-help books from the 80's, there is a saying, "most of the time spent worrying is about things that never happen."   If it were me, I would take each step as it comes, but I would not try to guess all of the outcomes possible.  Live now.

Alice514
Posts: 21
Joined: Mar 2019

Humor is always appreciated. And thanks for the encouragement. I'm sure my post probably comes off as a little hysterial. Sealed I tend to use 500 words when 50 will do. I'm actually calmer than my words would indicate. That said, one thing about anxiety disorders is that you hyperfocus on trivial things. In this case, I am hyperfocused, but the thing isn't trivial. Actually your quote about the "time spent worrying" is kind of anxiety in a nutshell. I'm fortunate that my anxiety is generally pretty mild, but it does often show up at night when I'm trying to sleep (usually at 3:30), something I try to address with good sleep hygiene, meditation, etc. 

I've actually started walking quite a bit since my diagnosis, as much for the pleasure of being outdoors as for the exercise itself. I'm really looking forward to warmer days with more blue skies. But I'll deny I ever said that when it's July and 106 degrees outside. I enjoy the walks so much that I go before work if time permits, again during one of my 15 minute breaks, and again after dinner if possible. I have nice neighborhood to walk in, and I enjoy looking at my neighbors' gardens. 

And I've got a girls' trip to Disneyland to look forward to in a couple of weeks. I had been back and forth about whether it was a good idea to go right now, and decided that I deserve it. 

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

It's got to be so difficult waiting for the staging and then another MRI.  Wishing you the best on the scan and the results.  Good luck on Monday.

Kim

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

i was given a stage IIIa, T2, N1, M0 diagnosis after they did a CT scan and an endorectal ultrasound.

After surgery it was changed to stage IIIAa, T3, N0, M0 as there was no cancer in the 23 lymph node that they removed.

In 2018 I had two spots appear in my left lung. That put my stage to IVa, T0, N0, M1, as again the cancer was rectal and had mestastized to my lung but it was not deep and they found no cancer in the lymph nodes. 

The stage will change depending on how effective the test or surgery is.

Its enough of a roller coaster ride without tracking the staging. I’m sorry you have to experience this but try to roll with it. What will be, will be no matter how much you worry. Take it one step at a time and don’t look online to see what stage involves what. 

Sending you peace and love.

k

Alice514
Posts: 21
Joined: Mar 2019

I think part of it is just waiting, period. Even though the idea of chemo/radiation is scary, and I know it's going to be hard, I just want to get started. I want to feel like I'm doing something. I'm sure it would be worse if the tumor was still inside me, because I would just want it out. And this waiting period is a strange time, because I feel fine. And yet, I'm in a hurry to begin a process that will make me feel the opposite of fine.  At first things happened really fast, and the scheduling calls came quickly. And then it just kind of came to a grinding halt as things started to need authorizations. And it took a week to get scheduled for a mental health visit, and that appointment isn't for another 2 weeks. 

Trying to take things one day at a time. And I do really appreciate the support to be found on these discussion boards. You all are really nice folks.

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

Oh I had the same frustration! I wanted it out immediately! I hear ya. I was scared and thought the longer we are not doing something, the worse it would get! I’m a very proactive person and had to learn that some things were out of my control. Easy for me today now but not when I was in the thick of it.

i hope things start moving for you soon.

k

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