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PaulaC

Initial appointment with oncologist.

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Is it normal to take days just to set up the initial appointment? This will be the 1st visit. I know they have the referral paperwork because I talked to the woman in scheduling. I’m nervous that if they are to busy to set an appointment they’ll be to busy to handle more patients. 

Thanks for listening!

Paula

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I don't think it's unusual.  I met Super Doc in the hospital on the 23rd of the month and my first appointment with him wasn't until mid-month the next month.  I think we, as patients, generally want this to get moving faster than it normally does.  It's the hurry up and wait issue.  Once you are an established patient, scheduling shouldn't be as difficult going forward.

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7 minutes ago, Paula Lyb said:

Thanks, I'm just wanting to get it started. 

Paula

 

Paula

I was ten days to my very first appointment after initial diagnosis  to see the oncologist then thing move fast as you already have had the petscan.

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3 minutes ago, Paula Lyb said:

I’m hoping they do! 

Paula

Looking at my calendar had my meeting Feb-14 and they gave me the plan and details and my treatment starts March-12 with Radiation and Chemo that week.. They had to wait for my petscan results on Feb-16 so that might have caused few delays. But tests and more tests are the norm .

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That’s good to know because it seemed like it took awhile to get from the pulmonary Dr to here.  He did do a number of test so maybe that’ll be helpful. 

Paula

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You sound just like me, I wanted everything done yesterday!! Apparently it is normal although I don't know why. I have found that the squeaky wheel does get the grease! I was a pest, I didn't wait for calls when I thought the call should have come in already. Also, for any appointment or procedure, I made sure they knew that I wanted a call if they had a cancellation, told them I was available no matter what time they gave me even if it was last minute.

By nature I am not like this, I'm never pushy so this is new for me. Being diagnosed with cancer gives me a sense of urgency..... geeee.... not sure why?  :wink: 

I do have family members who work in Oncology and Radiation therapy (unfortunately not in my area). My sister-in-law is an Oncology nurse and has told me to be a pest, make the calls, don't let up.... and that's what I've been doing. Unfortunately, you have to be your own advocate. 

I can totally relate...

Go get em'!

Ann

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1 hour ago, Paula Lyb said:

That’s good to know because it seemed like it took awhile to get from the pulmonary Dr to here.  He did do a number of test so maybe that’ll be helpful. 

Paula

Same here two scopes and FNA  before he got the results he needed to go to the oncologist and that was over Xmas time and I developed chest infection since the first scope in November. lol

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1 hour ago, Ann Cronin said:

You sound just like me, I wanted everything done yesterday!! Apparently it is normal although I don't know why. I have found that the squeaky wheel does get the grease! I was a pest, I didn't wait for calls when I thought the call should have come in already. Also, for any appointment or procedure, I made sure they knew that I wanted a call if they had a cancellation, told them I was available no matter what time they gave me even if it was last minute.

By nature I am not like this, I'm never pushy so this is new for me. Being diagnosed with cancer gives me a sense of urgency..... geeee.... not sure why?  :wink: 

I do have family members who work in Oncology and Radiation therapy (unfortunately not in my area). My sister-in-law is an Oncology nurse and has told me to be a pest, make the calls, don't let up.... and that's what I've been doing. Unfortunately, you have to be your own advocate. 

I can totally relate...

Go get em'!

Ann

Ann,  like you I’ve never been what you call pushy or a  pest. I’m turning into one !!  I don’t have anyone in the family in oncology but I lost a brother and sister to cancer and have another sister fighting pancreatic cancer.

 I know it’s going to be a long road. Just being able to vocalize how I’m feeling helps. Thanks for the support .

We’ve got this!

Paula

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Sometimes it's helpful to be pushy! Seems like sometimes  some of our medical professionals need a  little fire lit under them. Don't feel bad about doing it if it's what you need to get info or something else essential. I've always been pretty good at advocating for (in other words being pushy for) other people, but it can be harder for me to do it for myself. I'm getting better at it, though.

Bridget O

 

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I called the Dr office back and questioned if they were going to get to me today.  The first thing she said was she couldn’t find the referral from the pulmonary dr. Then located me. ( misspelled my name). Anyway she hung up and called back to say my appointment is March 19th. ☹️ that seems so long. 

Just an update.

Paula

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13 minutes ago, Paula Lyb said:

I called the Dr office back and questioned if they were going to get to me today.  The first thing she said was she couldn’t find the referral from the pulmonary dr. Then located me. ( misspelled my name). Anyway she hung up and called back to say my appointment is March 19th. ☹️ that seems so long. 

Just an update.

Paula

It might be but I am sure he is arranging for a multitude of tests  and  a plan and arrangements for your treatment prior to March-19 meeting.

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The mass in my Father's lung was discovered 01/03/2017. His first treatment was 03/11/2017. In between that time we had a endoscopy, PET, CT of the head and abdomen, and 1 ER visit for high calcium levels. Not sure if that is standard time range but that's what we experienced and figured I'd share with you. Best of luck and you and your family are in my prayers! 

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Not so long, Paula.  I know how frustrating it is to wait, but it's a couple of weeks.  The docs have a fairly good idea of what they are dealing with, and it doesn't sound out of line with what most people have experienced.

Hang in there--that's about all we can do at this stage of the game. :)

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53 minutes ago, VirginiaTim said:

The mass in my Father's lung was discovered 01/03/2017. His first treatment was 03/11/2017. In between that time we had a endoscopy, PET, CT of the head and abdomen, and 1 ER visit for high calcium levels. Not sure if that is standard time range but that's what we experienced and figured I'd share with you. Best of luck and you and your family are in my prayers! 

It sounds about the same in timing so! I hope this finds your father doing well. Thank you for the information and prayers. 

Take Care

Paula

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Sounds about right but be sure to let them know you’re available if they get a cancellation! That squeaky wheel got my PET rescheduled 7 days early and also got me scheduled for this second biopsy a whole month sooner...                                   Just keep swimming!!

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On 2/28/2018 at 1:37 PM, Robert Macaulay said:

Paula

Looking at my calendar had my meeting Feb-14 and they gave me the plan and details and my treatment starts March-12 with Radiation and Chemo that week.. They had to wait for my petscan results on Feb-16 so that might have caused few delays. But tests and more tests are the norm .

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I hope everything is moving along for you Paula. 

Just to add to the above, and for those who come after us, I can say we have had a similar experience. My husband has NSCLC and we've had the same feeling of urgency, while being scheduled for one test after another that seemed to delay the actual treatment (in our case: lobectomy scheduled for Monday 5/7). We are learning that not only is that typical, but that all these scans/biopsies/tests are important for the surgeon to be as well-informed as possible prior to and during surgery. Still, it ain't easy waiting.

As to being a pest. I absolutely agree. I'm not good at that, but thankfully my husband is, and I'm learning from him.😉 For a simple cardio check he was initially given a date of May 11, which would have been 3 weeks after all the other scans/tests were completed, and surgery would not even be scheduled before that (with probably yet another 2-3 week wait after). I credit my husband with objecting to that date but, while still waiting for a call back, I must admit I decided to play the 'wife' card. I phoned and laid it on thick (OK, a bit tearful too). It was really nothing more than I was feeling, it's just that I would not normally show it, and would usually accept what I'm being offered. As others say, cancer, particularly in a loved one, is a game-changer! Anyway, upshot was, an exceptionally lovely consultant phoned a colleague to 'call in a favor'; the cardio check was done the same afternoon as the EBUS consult, and the lobectomy will now be done-n-dusted a full 4 days before that initial date of May 11!

Wishing you all the best with your treatment and recovery, stay strong...and pushy!👍💪

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5 hours ago, LouiseB said:

I hope everything is moving along for you Paula. 

Just to add to the above, and for those who come after us, I can say we have had a similar experience. My husband has NSCLC and we've had the same feeling of urgency, while being scheduled for one test after another that seemed to delay the actual treatment (in our case: lobectomy scheduled for Monday 5/7). We are learning that not only is that typical, but that all these scans/biopsies/tests are important for the surgeon to be as well-informed as possible prior to and during surgery. Still, it ain't easy waiting.

As to being a pest. I absolutely agree. I'm not good at that, but thankfully my husband is, and I'm learning from him.😉 For a simple cardio check he was initially given a date of May 11, which would have been 3 weeks after all the other scans/tests were completed, and surgery would not even be scheduled before that (with probably yet another 2-3 week wait after). I credit my husband with objecting to that date but, while still waiting for a call back, I must admit I decided to play the 'wife' card. I phoned and laid it on thick (OK, a bit tearful too). It was really nothing more than I was feeling, it's just that I would not normally show it, and would usually accept what I'm being offered. As others say, cancer, particularly in a loved one, is a game-changer! Anyway, upshot was, an exceptionally lovely consultant phoned a colleague to 'call in a favor'; the cardio check was done the same afternoon as the EBUS consult, and the lobectomy will now be done-n-dusted a full 4 days before that initial date of May 11!

Wishing you all the best with your treatment and recovery, stay strong...and pushy!👍💪

LouiseB,

I finally started treatment on April 23rd which was almost 5 months after the first CT scan. I agree that they need to be  thorough but it seems like it was extreme. 

Im just glad things are moving along and now praying for good results. 

Good news about your husbands surgery and I know once it starts a lot of your  anxiety will settle down. 

Take care and keep us updated 

Paula

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