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PostPosted: Tue May 29, 2012 1:28 pm 
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Director of Support & Advocacy, LUNGevity
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Joined: Thu Jan 09, 2003 11:09 am
Posts: 15010
Location: Texas
Can you offer some advice to this new patient?

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I have said nothing to friends and colleagues yet, but knowing the side effects of chemo, it will likely be impossible to hide this. What is the best way to communicate my situation? I work for a very large corporation, in a dept. of 20 people, and supervise 5 of them. I've told my boss that I simply have been diagnosed with an illness and will require some time here and there for treatment and he was very supportive.

The only people who truly know my situation are my wife, son, sisters, a couple of cousins who work in the medical field, and a few very close friends.

I feel I need to begin communicating my situation to other friends, relatives, and colleagues so they don't get blindsided by seeing me with hair loss, etc. It also feels like it should come from me and not from others whispering about me.

Email and Facebook have been suggested and I guess they're possibilities but they do seem a bit impersonal. Still, calling up 20 people and telling them the same thing seems a little more than I can bear doing right now.


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PostPosted: Fri Jun 01, 2012 7:12 am 
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When I was diagnosed, word traveled fast through the organization I worked for and it wasn't a negative thing at all. I know that probably a lot of people wrote me off as a goner, but they were generally very supportive and treated me no differently than before, at least from my perception.

I now work someplace else, and not a lot of people know about my medical history. I'm just a part time person, and my office mate knew and the boss knows. It just came up in conversation. I don't keep it a secret, but I just don't go announcing my health history to everyone any more than I would share other personal information with people I don't really have anything other than a professional relationship with.

I would not use FB or email to deliver this kind of information to close friends and business associates. But I think they need to know. I guess I would start with my supervisor and tell that person exactly what the deal is, and then the people I supervise would be next. Other people will probably find out on their own.

It doesn't need to be a detailed conversation-you can control what info you release, but I think you will find it will be a supportive experience and much easier to do now than later.

Good luck, I know it's tough.

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung


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PostPosted: Fri Jun 01, 2012 2:20 pm 
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Location: Greensboro North Carolina
keep it immediate friends and family. If anyone else asks by phone or in person tell them. A diagnosis like this should be dealt with personally and not mass media!! if you make it i a Social Media thing you look like your trying to get attention so... just those who need to know over the phone or by letter!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!


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PostPosted: Fri Jun 01, 2012 3:38 pm 
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Location: W. Michigan
I would do it in person only. And if it's not someone who is close, I'd just wait for them to ask the question. Word spreads fast. I was always an open book with people if they asked. But I didn't give them more than they wanted to know. Most wanted to know more. I always felt it was a good way to educate people, and also was good for me.

I am a believer in prayer, so that is the other reason I was okay with sharing it. It was an easy way to converse about it. When people would ask what they could do, I would just say that their prayers would be greatly appreciated.

Unless of course they were close to me. Then the conversation got deeper because they wanted to know and wanted to help. I found it to be as big of a blessing to them to let them help me as it was to me to be helped!

Wishing you the best with all of this!

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25


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PostPosted: Sat Jun 02, 2012 4:56 pm 
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When I had my first LC in 1998, I didn't want anyone I worked with or knew to know. I'm simply a private person and maybe I was also somewhat ashamed of the dx. In contrast, a few months later another person where I worked was dx also. Although they only told their closest friends at work, as Cindy said word does get around, and I noticed that they were more than willing to talk with those who asked, but did not bring it up otherwise. In the end, I thought that was a better way of handling it than I did.

The second time I was dx I personally told all of my family and close friends and didn't worry about anyone else. It wasn't a secret, but just not something I accounced. It may be my age, but there are some things I just don't think are meant for social media.

In the end, I think we all just deal with these things as best we can.

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas


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