QUALITY INFO (LOCALLY)...IS IT OUT THERE?

[lisaRN]

Ok, now you guys have got me thinking...... I want to ask more survey questions but I want to keep these questions separated from the other survey. I know this is asking alot from everyone but the info will be put to good use. If you are uncomfortable discussing your situation here, please feel free to PM or email me for a copy of the survey and you can email it back.

Thanks in Advance.

PLEASE REMEMBER - I as much as anyone know how valuable LCSC is and has been, however, I am trying to determine what ELSE is out there and ALSO HOW people were fortunate enough to find resources such as LCSC. Mostly the questions below are referring to you/your community locally.

1> How did you find LCSC? PLEASE EXPLAIN

2> When you were diagnosed what kind of info about LC were you given (nothing, brochure, counseling, books, video/dvd, resource lists)? Who provided you with this info?

3> What is largest city closest to you? Is there a live support group specific to LC for patients? caregivers? family/children of patients?

4> Where and how were you diagnosed? Who told you of your diagnosis?

5> What do you think could have been done differently/better (re: your dignosis) and how you were told/educated about LC?

6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...?

7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about? Please be specific as to what they are and where the organization is? Names, address, telephone, website & brief info would be great?

8> Have you had difficult getting TREATMENT or MEDICATION because of LACK OF MONEY or LACK of INFORMATION? If so, please explain in detail.

9> Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness?

10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other....

11> What types of things would make you/your home more comfortable with relation to your LC?

12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS) ?

[dadstimeon]

1)> How did you find LCSC? PLEASE EXPLAIN

On the Internet--through Google.

2> When you were diagnosed what kind of info about LC were you given (nothing, brochure, counseling, books, video/dvd, resource lists)? Who provided you with this info?

May/2002--Told the nuts and bolts of it, what to expect/what to do/what might happen etc, was given brochures and suggestions by doctors/nurses--they always listened, were always helpful.

3> What is largest city closest to you? Is there a live support group specific to

LC for patients? caregivers? family/children of patients?

Boston--The Wellness Community offers support for L/C patients and there families separate.

4> Where and how were you diagnosed? Who told you of your diagnosis?

Was by accident--I had blood in my urine, shortness of breath, fatigue like symptoms and yellow skin--ended up with a platelet transfusion, stent in my left main artery, biopsy for the lung cancer. I was told when I was in the hospital.

5> What do you think could have been done differently/better (re: your diagnoses) and how you were told/educated about LC?

Don’t know if I could have done anything different. Most of my knowledge comes from research on my own, being very pro-active.

6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...?

About a dozen.

7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about?

Please be specific as to what they are and where the organization is?

Names, address, telephone, website & brief info would be great?

None locally that I am aware of.

8> Have you had difficult getting TREATMENT or MEDICATION because of lack

of money? If so, please explain in detail.

No.

9> Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness?

Live in Boston--it’s a great medical community.

10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other....

Yes--But really don’t need it in the traditional way of care giving. Been very lucky I’m under my own steam and can get around/do things.

11> What types of things would make you/your home more comfortable with relation to your LC?

Fine the way it is.

12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS) ?[/i]

I have been very lucky--everything has fallen into place as I go along. I look at it as part of life and it is up to me to do something about it, no one can do it for me. My overall experience as been very positive.

[Inkerdoodler]

1> How did you find LCSC? Referred by a friend from another LC support group that no longer exists.

2> When you were diagnosed what kind of info about LC were you given? We received some brochures from Dana Farber Cancer Insitute in Boston where he is being treated. While there are resource centers there we were not supported in accessing them or any other supports such as counseling until they decided there were few treatment options left for him.

3> What is largest city closest to you? Boston. Is there a live support group specific to LC for patients? caregivers? family/children of patients? There are support groups there but we leave 30 miles away and accessing them would require additional time/travel and it's hard enough for us to get in there for our appointments.

4> Where and how were you diagnosed? Who told you of your diagnosis? Dana Farber Cancer Center. First inkling was diagnosed by his primary care doc after he complained of shortness of breath. Despite years of asthma this doc never ordered a chest X-ray and when he finally did, the growth was 7cm. We decided to go directly to Dana Farber.

5> What do you think could have been done differently/better (re: your dignosis) and how you were told/educated about LC? More support, more compassion. Too "clinical"

6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...? Few.

7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about? Please be specific as to what they are and where the organization is? Names, address, telephone, website & brief info would be great? 0

8> Have you had difficult getting TREATMENT or MEDICATION because of LACK OF MONEY or LACK of INFORMATION? If so, please explain in detail. No.

9> Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness? Not sure... haven't explored options out of state due to potential costs not covered by insurance. Travel is difficult due to supplemental oxygen surcharges imposed by airlines per leg of a flight plan.

10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other....

11> What types of things would make you/your home more comfortable with relation to your LC? Time to clean/organize it to make it comfortable for him, but trying to continue to work full time and also take over all the other household tasks that he used to do is overwhelming.Housework takes a back seat.

12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS)? The thought of losing my best friend.

[stand4hope]

Hi Lisa! It's so good to see you here and posting. I thought you had fallen off the face of the earth. I saw your note at the end of your profile that you and your son are "surving". I hope you are having lots of good days along the way.

I'll try to answer some of your questions, but some of my answer will be for myself and some for Don:

1> How did you find LCSC? PLEASE EXPLAIN

I was searching for a medical term with google, can't remember what it was, and one of the links led me to someone's post here.

2> When you were diagnosed what kind of info about LC were you given (nothing, brochure, counseling, books, video/dvd, resource lists)? Who provided you with this info?

Brochures, but just with basic info. Some info from the oncologist and radiation oncologist, but they answered any question we asked.

3> What is largest city closest to you? Is there a live support group specific to LC for patients? caregivers? family/children of patients?

Indianapolis. There probably are support groups, but we didn't look for them. This site was all I needed.

4> Where and how were you diagnosed? Who told you of your diagnosis?

My husband got an MRI to find out what was causing his headaches. Brain tumors were found. Then the lung scan revealed the source.

5> What do you think could have been done differently/better (re: your dignosis) and how you were told/educated about LC?

We felt good about the education we were given. My husband never asked for a prognosis, and one wasn't offered. I think that is the best approach.

6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...?

None. I'm sure there were lung cancer patients in the chemo room, and we talked to them, but we never asked them what kind of cancer they had.

7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about? Please be specific as to what they are and where the organization is? Names, address, telephone, website & brief info would be great?

Just those who have sponsored or participated in fundraisers on this site.

8> Have you had difficult getting TREATMENT or MEDICATION because of LACK OF MONEY or LACK of INFORMATION? If so, please explain in detail.

No.

9>

Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness?

No.

10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other....

Not applicable now, but we didn't need help, but would have had plenty of help it had become necessary.

11> What types of things would make you/your home more comfortable with relation to your LC?

Not applicable.

12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS) ?

Without a doubt, the most difficult thing was always waiting for scan/test results

Best of luck in your survey and your foundation, Lisa. I hope we get to hear more from you. I'm so happy to see you handling your grief with positive action for lc.

Lots of love,

Peggy

[blaze100]

1> How did you find LCSC? PLEASE EXPLAIN.

I did a web search for the guy who paints his toe nails red for each year he survives and found LCSC last month.

2> When you were diagnosed what kind of info about LC were you given (nothing, brochure, counseling, books, video/dvd, resource lists)? Who provided you with this info?

Nothing, I worked myself into a frenzy reading all the bad stats on-line until my husband pulled the plug on the computer.

3> What is largest city closest to you? Is there a live support group specific to LC for patients? caregivers? family/children of patients?

Medford, OR. About 80 miles one-way and over a major mountain pass. They did not have a lc support group last time I checked.

4> Where and how were you diagnosed? Who told you of your diagnosis?

I had a chest x-ray in local hospital, then CT and Broncoscopy in Medford, OR. My pulmonary doc told me over cell phone.

5> What do you think could have been done differently/better (re: your dignosis) and how you were told/educated about LC?

Being told over the phone was OK, my doctor asked if I was at home and if my husband was with me before he told me. Total wailing and sobbing for a few hours. Then I waited and waited for the next call to see if I was operable. It is all so inhumane. The statistics I'd read were depressing.

6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...?

Zero. Last week I called a former co-worker with ovarian cancer now in lung to wish her well, and her husband answered. I mentioned to him that I'd had lc 5 years ago, and he told me he'd had lc 7.5 years ago. Real boost to actually know someone personally.

7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about? Please be specific as to what they are and where the organization is? Names, address, telephone, website & brief info would be great?

Zero

8> Have you had difficult getting TREATMENT or MEDICATION because of LACK OF MONEY or LACK of INFORMATION? If so, please explain in detail.

NO.

9> Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness?

No, I have excellent health coverage. I chose treatment locally because I believed I was going to die anyway, and didn't want to spend my last days in airports and strange hotel rooms.

10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other....

Yes, Just me and husband.

11> What types of things would make you/your home more comfortable with relation to your LC?

Nothing I can think of.

12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS) ? Going back to work was hard. I had to go back to work to keep my health insurance after using up my banked sick leave. Husband and I teach at a community college, and even though our employer is "enlightened", I had to do much research about California's Disability Act to get my school administration to agree to reasonable accommodations. These included; 60% work load for one semester, an office with a window that opens, moving classes closer to my office so I don't have to walk across campus in bad weather, posting and enforcing "no smoking signs" outside exterior door & office window, adjusting my class schedule to allow open time for possible treatment/doc visits, adjusting schedule to take walking class & yoga class, and allowing me to decline special assignments if I'm feeling tired.

Hope this helps. Barb

_________________