How do docs say it?

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dezysmith
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How do docs say it?

Postby dezysmith » Tue Nov 15, 2011 12:55 pm

I have a repeat PET scan tomorrow. I don't know if the doctor will call me tomorrow or Thursday with results. How does a doctor just tell someone they have been handed a "death sentence?" I don't know if I should go to work or stay at home and take an anti-anxiety pill on THursday. Do most of you out there anticipate this and plan it out or just go about your daily routine? This is absolutely the most critical phone conversation I have ever had to anticipate. Can someone please lend me some advice? How do your doctors do it? Do they tell you over the phone, or do they have you come in to get the really bad news? I am anxious in Baltimore ..... Thanks.

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BrownBagger
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Re: How do docs say it?

Postby BrownBagger » Tue Nov 15, 2011 1:23 pm

Well, they don't exactly hand you a "death sentence." There's (almost) always some room for optimism or hope and most docs bearing bad news, in my experience, will feed you some of that. Some docs ask if it's OK to give you test results over the phone; others want you to come in for a face-to-face. I always say, "just call," but then I always regret it, as I eyeball my phone and sweat--sometimes for days on end. I think an appointment is a firm date with destiny, and I think it's good to make doctors give you bad news--if that's what it is--to your face. JMO. Look at it this way: You're there. He's got his script pad handy. If the news is bad, you're probably going to want him to use it, and he'll probably be happy to oblige.

If the news is good, on the other hand, it will feel good to share it with other people--the docs, PAs, nurses, etc.--as you're leaving the place with a spring in your step and a new lease on life.

Look, scanxiety is really, really hard to handle, and it doesn't really get any easier. You have to find a way to keep from going nuts. For me, exercise helps. Staying busy helps. Drugs can help. Whatever gets you through the night.

Good luck. Here's hoping for the best possible news!
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

janklo
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Re: How do docs say it?

Postby janklo » Tue Nov 15, 2011 4:03 pm

I think you should be more positive. You don't even know what the PET scan showed yet.

Speaking as someone who sat and listened to the surgeon tell us our daughter's cancer had returned with a vengence back in July, everything is not BLACK and WHITE with cancer treatment! Sure the surgeon had to give us that bad news and he said she is Stage IV now and her chances aren't very good anymore. BUT. . .now she's undergone chemotherapy and is scheduled for HIPEC surgery in December. The surgeon she is seeing now has a very positive outlook for her treatment providing her with more time and possibly even a cure!

My feeling is that with cancer treatment, there is always hope as long as you are alive. There are more treatments you can try. There are other doctors you can consult with. There are always clinical trials. You are not at the end of any road yet. Someday soon I seriously feel scientists are going to discover the cure for cancer. You just have to keep yourself alive until that time. You can do it!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

dezysmith
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Re: How do docs say it?

Postby dezysmith » Tue Nov 15, 2011 6:29 pm

Wow thank you so much for your words of encouragement. Both of you. Sorry for sounding like such the pitiful victim here. Your daughter must be quite an amazing young woman with having a mom like you .... I just feel this doom and gloom, it comes and goes. I am just so concerned as to "where" this spot is .... and all the research I've been doing doesn't give it really anything else it could be. If your daughter's doctor is that encouraged then I should be too ... maybe we could talk sometime .... Thanks again for the pep talk, I really needed it. Also being 5 weeks in limbo has been really, really rough. I never had any "symptoms" until now ... I guess that's the mind working on me and also the stress. I cannot eat or sleep and I look awful too. Funny how you can go from feeling on top of the world and then feeling like your "sick".

Buckwirth
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Re: How do docs say it?

Postby Buckwirth » Tue Nov 15, 2011 6:52 pm

dezysmith wrote: I am just so concerned as to "where" this spot is .... and all the research I've been doing doesn't give it really anything else it could be...


Ahh, start with stopping the research until you know what it is. All the research I did when I first started showing symptoms told me I had VD :roll: , and no matter how many ways I searched it kept coming back with that answer. Let the docs do the diagnosing, and after you get a diagnoses, if you want some help on what it means, come on back here and ask questions. Dr. Google is notoriously unreliable.
Dx April 2010
Stage IV
Mets to distant lymph
Colostomy 1/2011
Folfox w Avastin 4/2010 to 9/2010
Radiation 10/2010
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Currently out of treatment options? 12/2011
Back on Folfox 2/2012

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BrownBagger
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Re: How do docs say it?

Postby BrownBagger » Tue Nov 15, 2011 6:59 pm

I don't know what your experience is with this disease, but most Stage 4 people that I know are in it for the long haul. That means developing coping skills so that you don't hurt yourself mentally and physically worrying about what might or might not be going on in your body. You simply have to find a way to live with that uncertainty and fear. There are counselors and support groups available at all major cancer centers and hospitals, I'm sure, and I bet your oncologist could steer you in the right direction if you need help. As I said, you need to learn some new skills and if you need help doing that, by all means, get it.

A couple weeks ago my dad died of prostate cancer and at about that same time, I became convinced that my cancer had spread from my lungs to my ribcage. I was a mess, really. But I managed to get out of bed in the morning, go to work, and actually get some things accomplished. I was miserable, but I was functioning. I'm still working on ways to eliminate the miserable part. Getting a clear bone scan sure helped. See, I let my mind get ahead of the test results and it caused me unnecessary pain.

And of course I second what Buckwirth says.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

SkiFletch
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Re: How do docs say it?

Postby SkiFletch » Tue Nov 15, 2011 7:31 pm

if you want some help on what it means, come on back here and ask questions. Dr. Google is notoriously unreliable.


The good Dr Google is indeed unreliable.

Dezysmith, do yourself a favor and write down some questions to ask the Dr whenever you see or hear from him/her regarding the scan. Maybe write up 3 sets of questions. One for the "everything looks good" response, one for the "We're not sure what's going on here, further testing and/or surveillance is next," or for the "This looks like cancer, we're going to do the following." Having a list of questions will really help when your heart is thumping and you're all nervous from getting the news. That way you can look at the list and ask the questions. And do yourself another favorite, write down the answers ;). Seriously, you're going to forget most of what your Doc said mere minutes after finishing the conversation with him/her especially if it's on the phone. And if you're too nervous even to figure out what questions to write down, go ahead and start another thread and ask for help with that. It's what we're here for :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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hopeful
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Re: How do docs say it?

Postby hopeful » Tue Nov 15, 2011 7:33 pm

dezysmith, I'm not the one with the colon cancer, my husband is, but I have had plenty of repeat scans and tests over the years and they have all turned out to be negative. Since I'm a professional worrier, I wasted hundreds of hours scared out of my wits about things that never came to be. Two years ago I had chest x-rays because of a cough. They called me back a day or two later to do repeat x-rays because they thought they saw something. Another day later they said they wanted a CT scan. It turned out to be nothing. I've been called back for repeat mammograms too many times to remember. I've had 3 breast biopsies related to the mammograms. They all came back negative.

I worry myself sick whenever my husband has a bloodtest or scan. I start worrying about 3 weeks prior and really ramp up by the week before. I don't know what I'd do without anxiety meds to get me through. (His last bloodwork results came back yesterday, all clear.) I probably make everyone around me miserable in the process, but like I said, I'm a professional worrier. I just wanted you to know that repeated scans and tests aren't necessarily bad results. I'm sending lots of prayers and positive thoughts your way for a clean scan!
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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Terry
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Re: How do docs say it?

Postby Terry » Tue Nov 15, 2011 8:05 pm

For the past over 4 yrs. I've received my results over the phone. Mainly because I'm impatient and pretty much force them to give me the results, give, bad, or ugly about 2 to 3 days after my scan. I really haven't had much anxiety until the day I call for them, except last time for some reason. He comes right out and says exactly what the report says, straight and to the point. Then he tells me what the plan is or if he needs to decide on a plan and we make an appt. for me to come in.

I know how you feel, it's no fun for sure and I've been given so much bad news over the past 2 1/2 years I pretty much expect to hear only bad news now.

If you believe in prayer, I'll pray for you. If not, well then I guess it won't matter, but I'll be thinking of you and hope you get good results.

Terry
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

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Candyys03
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Re: How do docs say it?

Postby Candyys03 » Tue Nov 15, 2011 9:20 pm

It's not a death sentence! We are all survivors here.Some longer than others.
I think that getting the results depends on you doctor,area and facility's.I live in busy Southern California and I have to make an appointment a week after my scan.The scan is the easy part even though we all get scanxiety it's the actual results that count and make us even more anxious waiting.Sometimes it takes a few days for your doctor to get it.Call your doctor and ask if they are going to call you or if you need to make an appointment.
Try to do what you would normally-eat, sleep, work,etc..Get your mind focused on something else(which is not easy).If you need to take something and it helps take it.
You can call the American Cancer Society and they can give you a list of cancer support groups in your area.
1-800-227-2345

Hoping and praying for good results.
Candy :)
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dezysmith
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Re: How do docs say it?

Postby dezysmith » Wed Nov 16, 2011 7:47 am

Thanks again for your words of encouragement .... yes I truly believe in the power of prayer and in God's word. I apologize for sounding so negative. I must have really been ignorant as I thought this was all going to be just a distant memory .... CANCER ... I didn't think it would come back. I guess from searching the internet I am so afraid as now it is in the peritoneum ... the worse place for it to come back. I was diagnosed with Stage 2A in March of 2010 and was told NO chemo which now makes me really sad as I would have done it if they thought it would have helped. They said I was "cured." Now I am just so sad and I can't shake the fear that races up and down my back when I am trying to sleep .... and you're right, the test isn't the hard part, it's awaiting the phone call. My doc is in surgery all day tomorrow so I don't know if she will call tomorrow evening or Friday. THanks again everyone!

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Gaelen
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Re: How do docs say it?

Postby Gaelen » Wed Nov 16, 2011 8:37 am

Dezysmith, you've gotten a lot of input, but I wanted to address some of your first post.

dezysmith wrote:I have a repeat PET scan tomorrow. I don't know if the doctor will call me tomorrow or Thursday with results. How does a doctor just tell someone they have been handed a "death sentence?" I don't know if I should go to work or stay at home and take an anti-anxiety pill on THursday. Do most of you out there anticipate this and plan it out or just go about your daily routine? This is absolutely the most critical phone conversation I have ever had to anticipate. Can someone please lend me some advice?


First - none of my docs (except the ones who do my annual mammograms) EVER give out results over the phone. Good, bad, the same, no news - I want results, I have a follow-up appointment so I can talk with the doc, see/get a hard copy of the report, ask questions and make sure I understand the plan going forward. The mammo results are either a postcard saying all's well, or a call to make an appointment for the results. I respect my docs for being willing to speak face to face, no matter what news they're delivering.

Second, I may be unique but I've never taken an anti-anxiety pill to lessen anxiety about test results. Ever. I've taken valium to get through a brain MRI - the actual MRI, not the results. My brain chemistry doesn't respond well to anti-anxiety meds and I'm not a big fan of popping a pill when I can practice non-drug stress-control techniques like yoga and meditation and get effective results. I spent time learning to control the stress of having cancer, and now instead of freaking out, I can invest that time in living my life.

As for "death sentences" and "the most critical phone conversation" you've ever anticipated - I know you're scared, but there's no need to go for drama. ;) information is just that - info. It's not, in and of itself, a death sentence. And while your meeting with your doc will be important, you're probably going to have other meetings in your life that are equally critical. Breathe.

There's something I say to myself to remind me to slow down - don't let the sound of your own wheels make you crazy. Professional worrying? Frankly, that takes way too much time away from living my life! Whatever your test results are, you can't change them by worrying. It's a waste of time. So get them, talk them over with your doc, make a plan, and move forward.

Strong thoughts.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

dezysmith
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Re: How do docs say it?

Postby dezysmith » Wed Nov 16, 2011 10:33 am

Thanks for the input and yes I am filled with drama right now, so much so I am getting in my way of thinking clearly. I called my surgeon's office to ask about this and they were sort of vague saying like well sometimes she will have you come in and sometimes she will just call. So I don't know what to think and you are right taking an anti-anxiety pill isn't going to change the results. I do have to take one to actually have the PET because of my inability to withstand the enclosed feeling of the tube. I only have had one once before and with taking a valium i didn't even care that i was in there. You're right, I am copping out .... I need to pull myself together. I went on some websites and they all said that peritoneal metastasis is "grave" and can only have 6-9 months to live. I think that's why I am freaking out so bad. I have always been a "professional worrier" ... and ever since my dad died it seems like all bad things have happened to me .... Also I guess I don't understand why she is having me repeat this PET scan only 1 month later, she really never gave me a good explanation. I don't want to lose trust in my doctor. Thanks again for all the positive thoughts .... it really means a lot!

Surroundedbylove
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Re: How do docs say it?

Postby Surroundedbylove » Wed Nov 16, 2011 10:40 am

dezysmith wrote:Also I guess I don't understand why she is having me repeat this PET scan only 1 month later, she really never gave me a good explanation. I don't want to lose trust in my doctor. Thanks again for all the positive thoughts .... it really means a lot!


Even if your doc will give you news over the phone I'd strongly encourage an appointment. It is through the appointments that you really can get a copy of the actual report, read it, question the doc. Get the report from the month prior, read it, question the doc. Ask about the differences. Ask why the second scan so soon.

Ask about circulating tumor cell testing options.

Etc.

The appointments and data and thoughtful questions and dialogue always helped me to manage anxiety. Information is power in that regard. Lack of information just feeds the anxiety I think but the patient has to seek the data and question the docs to understand it. I still keep a very detailed notebook with ALL of my scan reports, pathology reports, lab reports, surgical reports, etc. I have a separate notebook of my questions that I formulated in advance of the doc appointments and I would write them down leaving lots of room to write answers to each question. The questions would be written in red pen and then I'd bring a blue or black pen to the appointment to write the answers. The color coding really helped me when I'd go back to review (because of course we all tend to forget some details). Take the time to take the written notes - the doc should take the time with you - but you may want to call the office to tell them you have several questions and that you anticipate needing a longer appointment than normal. The doc and the rest of his/her staff always appreciate that.

SBL
Surroundedbylove

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BrownBagger
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Re: How do docs say it?

Postby BrownBagger » Wed Nov 16, 2011 10:50 am

dezysmith wrote:I went on some websites and they all said that peritoneal metastasis is "grave" and can only have 6-9 months to live.


Don't do this to yourself. Information on the Internet is often way outdated and/or just plain wrong. The only thing that matters in your case is your doctor's assessment and interpretation of your test results. That's all you should be worried about.

But since you're worried about peritoneal mets, you should also know that while it is, indeed, a grave diagnosis, there are treatments that do work for some patients. I believe HIPEC is one of them. That's worked for a few members here.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.


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