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It Just Doesn't Get any Easier

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

On Monday of this week I had a Ct scan of ab and chest.  My follow-up appt with onc was April 30....last night the nurse phoned and asked to see us at one today Thursday.  I begged her  to just give some hint of what was up but noooooooo she knows the doc knows the radiologist knows but I don't know.  Of course I am assuming the very very worst....here we go occurence number 4. 

If there were one thing I would campaign for it would be the way results are delivered to the patient.  I do not know if the Canadian system is different or maybe it is just small town Canada....no email.....you have to make an appointment and show up. I have heard of others here who have results emailed to them.....

and so the waiting that we all know and don't love.....the over acitive imagination....the terror....the revisiting of all the surgeries and chemo we have already experienced.....dang......I did not want to do this again.....

later......mags

PatchAdams
Posts: 271
Joined: Nov 2011

I just had my scans and cringe every time the phone rings.  So afraid I'll get the call you just got.  In fact, I'll get a 'don't forget your doctor's office visit' call and when I see the number on caller ID, I will be physically sick. 

I've been thinking about you a lot lately because I'm close friends with a former member who really looks up to you.  She had her scans Tuesday and won't get her results until next week. No emails here. In fact, in going on 6 years, I've NEVER spoken to my onc on the phone or by email. It's not done. 

We KNOW they have the answers pretty quickly so why can't they just go ahead and schedule appointments for right away to spare us this agony.

I'll contact my friend right now and we'll pray that this is either NOTHING or something that a PET scan will rule out.  Be sure to update when you can. 

 

Patch 

janderson1964
Posts: 2215
Joined: Oct 2011

I am sorry you have to go through the waiting game. I am finally at the point that I can corrispond with my oncologist through email. I thinkw we should all have access to the report the same time the doctors do. It's our life and we deserve to know immediately.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Hi Jeff....I know it is crazy ....it is just a question of a few hours but the stress is so intense.  I think I started to look at my l own track record in these last few months.....so so so many of us with reoccurence....how could I possibly escape numero 4. What is the latest with you Jeff????/ mags

janderson1964
Posts: 2215
Joined: Oct 2011

Dont think because others have had recurrences that your next.

I am doing well. I start my third treatment tomorrow. I have options lined up for SBRT and Theraspheres but will hold onto those options until i see what the next scan shows. No date for a scan yet but will talk to onc about it tomorrow. I expect good results. The abdominal pain the led to the recurrence is virtually gone now.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

The waiting is so very hard. 

After my two jumps in CEA I have to wait until next Tuesday for my PET Scan, and then I didn't have an appointemnt with the Onc until the 28th. Thats ONE WHOLE MONTH after my first CEA rise. 

Luckily I got in on a cancellation, and will see my Onc the day after my PET (16th). 

I have learned not to worry too much, I guess its just in my nature, and I realize that others aren't so lucky. 

I will be thinking of you all day, and will wait for your post, so that I know where to focus my prayers (or good thoughts and vibes). 

HUGE hug of comfort.   

SUE

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Prayers your way Mags.    

 

Dear Lord we ask you to join our forum and listen for your call, from Maglets, and all us here who are in pain and sorrow.   Please give us healing,  blessings and your everlasting love.  Amen

 

This  prayer isn't to offend anyone who does not follow The Lord. 

 

 Rachel 

 

ps. My ONC will call me with results if I want but my follow up appointment nevers goes past two days. 

PatchAdams
Posts: 271
Joined: Nov 2011

I agree in prayer! 

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I will keep you in my thoughts today, dearheart!!!

 

(maybe it is a new research project that needs participants that are clean after a reoccurance...and the deadline is before the 30th!)

 

BIG hugs, Kathi

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I agree that it makes no sense to have to wait for the news.  I feel every patient should have the right to determine whether or not they want to be able to access results in "real time"(be that by phone, email or other means) and not have to wait for the doc appointment.  Particularly for those of us who have been "around the block" a time or two or three.

My prayers are with you as you wait and are at your appointment.  May the issues be ruled out by further testing.

Hugs and love,

Marie who loves kitties

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

I hope it's nothing and maybe they want to do a PET and make sure it's nothing. I know what you mean about results, I just got my blood drawn for my CEA and I'm waiting for the nurse to call me back. It's like the hours are days! I get my CT's at the hospital where I work and I just don't have the patience to wait for dr to call or an appt, so I look up the results on the computer. It is so aggravating, how would they like to wait. Please update us when you can.
Sandy

PatchAdams
Posts: 271
Joined: Nov 2011

I sometimes have to call after 2 weeks for my CEA results.  They always have some excuse!  

 

PRAYING FOR MAGS!  I don't know her time zone but THINK it's probably the same as New York / New England so praying, praying, praying! 

 

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

okay all good here.....here is the back story.  My old onc would give heads up over the phone or her nurse would....nothing big but they would say things like....no this test is looking good.....no need to worry. So on Monday had the CT and wed called just to see if I could get a nothing to worry about here.....but no......nurse phones back and says we will see you Thursday at one.....now to me this means....it is BAD and we need to see you.  So hubby and I are basically up all night fussing .....walk in to day and no the tests are great!! This office firmly refuses to give any test results over the phone...

you have to physically turn up and get the results......I did not question it or fight today.....this onc is is only game in town right now so I am watching my step...I still hate it.....I hate the cat and mouse game....

 

what I do not hate is all of you......in fact.....golly after alllllll these years it still amazing that you can give a shout out and find a hand to hold.....

thank you dear friends......may I do the same.......with great love and thanks.....mags

jen2012
Posts: 1607
Joined: Aug 2012

Great news Mags!  I feel frustrated with that too.  We read so much into their comments and non comments.  I've mentioned it to my husbands onc and she said she understands but it doesn't change how she does things.  They have no idea how loooong the wait is to us.

 

good news tho...go celebrate!

wolfen's picture
wolfen
Posts: 1325
Joined: Apr 2009

Just holding my breath reading through your post & all the caring replies until I reached your "GOOD" update. The waiting game is played in JBG's scans also. Like rubbing salt into the wound.

She is due to be released from the hospital today, as far as I know. She will call me, probably tomorrow, as she lives so far from the hospital. She sounded pretty good a couple of days ago.

Luv,

Wolfen

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

you post this in an update, Wolfen. 

So happy to hear JBG is on her way home.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Not one, but three happy man dancing

May you never have another scare like that again. 

I am sorry that their policy is one that leads to hours of anxiety. 

May you do something special to celebrate, and to breath deeply in the knowledge that all is well.

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

Sorry you and hubby lost a night's sleep over this, but cheer for the outcome!

Hugs in bunches...now celebrate then take a nap

 

Marie who loves kitties

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   If we we were at an amusement park it would cost a fortune for the ride we are on. Some of us hold on tightwith everything clenched. Others wave their arms in the air and scream their heads off. What it's all about is when the rollercoaster stops and you find you have survived till the next ride. Well you live to ride another day Mags.Surviving survival ain't easy. Ron.

janderson1964
Posts: 2215
Joined: Oct 2011

Thats a good sign that everything is going to be ok.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Looks like I missed the scare, but I'm so glad it turned out great!!!!!

HUGS!!!!

Winter Marie

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I am so happy for your news, dearheart!!

 

Hugs, Kathi

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

That must be very frustrating to have to wait for the news.  My oncologist gives me all the news, bad and good, over the phone. 

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

so happy the test came back looking good.  reading your post, you had me worried.  so glad you posted the update in this thread.  if it was else-where and i missed it i would still be anxious.  i don't get anxious for my own test results any more.  

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Glad your tests were clear. Bummer about the stress of having to go in. Traci

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Congratulations! And thank you for posting your struggle. It is a glorious reminder to us (who will surly face similar calls/experiences) that we need to RESIST the "worst case" assumptions and patiently await the news and be OPTIMISTIC. Thank you Mags.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Yeahhhhh!!! Sometimes missing posts and then coming on and hearing the great news is the best thing.  You go Mags!  So happy that all is well.  I don't like the have to come in portion of results either but of course, they want the money from the office visit.  For something like that, they should make an appt. next day after scan.

PatchAdams
Posts: 271
Joined: Nov 2011

I just cannot begin to tell you how thrilled I am. I'm sorry you had to agonize for nothing but I called a church group of ladies and asked them to pray with me and just was heartbroken that this might be bad news.

I am SO happy! Going to call Diane right now! She'll be jumping for joy! 

 

Patch

Fucc
Posts: 92
Joined: Sep 2012

I am so glad to hear that you recived good news :)  I am also in Canada.  I am being treated at Princess Margaret.  They also refuse to talk to you on the phone or by email.  I need to go in to get any results or any information from my doctors.  I tried to get my oncologist to call me, but he refuses.  His reasoning is that whether the news is good or bad he wants to see you during his clinic hours.  He maintains the same policy for all news so as to help with stress because it is always the same.  I disagree with this.  I find just sitting in the clinic waiting to see him causes a high amount of stress and anxiety....

 

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

You made my day, even better then  my disconnect from the pump!  Thank you Lord. 

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Mags...I join others in celebrating your good news.  Laughing

Cathleen Mary
Posts: 827
Joined: May 2011

Mags,

What wonderful news!  My onc does the same....all results in person. I guess I would prefer bad news in person and not on a computer but I hate the wait. So happy for you. 

Hugs,

CM

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

So glad to hear that all is well.  You have to be sighing big relief.  Sorry that you had to go through all the worrying.  Congratulations.

Kim

Chelsea71
Posts: 1170
Joined: Sep 2012

Great news Mags.  Geez, I just came across this thread and I was quite scared for a minute or two.  What a relief!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Oh my wonderful Mags,  ( I know you are precious to so many but I like to think of you as my wonderful Mags),

I am so very happy to hear your great news.  You make me smile and want to dance!  I hope Spring is in full bloom and you have a wonderful summer planned.

 

BTW in the US, patients have the legal right to their test and scan results as soon as they are ready.  if done at a hospital you go right to the records department.  If you go to your doctors office and they have your resutls they are required by law to give them to you.  They are YOUR results.  We always get results the same day or the day after.

Aloha,

Kathleen

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Glad all is well and you have good news.

I can personally tell you that my 4th recurrence hasn't netted me any ribbons or anything, so there's no medal for getting there.  I'm glad you avoided that.  Our optins seem to dwindle down the more time we live and where the cancer lands (where there is margin to treat or surgically remove etc).  It gets a little harder and harder each time we recur; that's what I'm discovering. 

Keep up the good work now......and I'll let you go:)

-Craig

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

oh my dear Craig.....how very like you and how very thoughtful of you   to turn up here with a reply.  I am so so very sad to hear that number 4 is so bad and I guess that really is a case of dwindling choices.....when we first begin anything seems possible with so many choices.  I think my lesson this time is to NOT take one single thing for granted.....not people, not moments, not experiences.....just be grateful for everything.

I thank you for very kind response.....we all miss your enormous energy and spirit.  Return to us when you can......

your friend, maggie may

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Every extra month of NED we rack up is truly precious.

And I must sat, Craig mentions ribbons...I think we should all get someone kind of memento to honor our battles.

I'm thinking a tiara might be nice. Foot in Mouth

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

mmmmmm let me think about it......at first I thought nah I am way too old for a tiara but then just think about the real Queen of England aa....after all she is grey and she is older than we are....oh wait i forgot....her tiaras are really REAL diamonds.....Wink love you aa......mags

relaxoutdoors08
Posts: 520
Joined: May 2011

Glad to hear the news. Sorry for the added stress. No matter how long the wait...it is tough. But so happy to hear the good news .I just had my scans and feeling the relief and tears of joy.

NB

UncleBuddy
Posts: 1019
Joined: Aug 2013

So glad to hear the good news!\\I don't get it. I still think it's a power trip that many doctors are on. We've gotten scan results over the phone. My brother's onc is very thoughtful.

Lin

kennyt's picture
kennyt
Posts: 110
Joined: Jun 2013

I just pick up a copy of the scan report as soon as it's done to avoid the wait.

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