Ovarian Cancer Questionnaire

Ovarian Cancer
#1

Firstly, let me say a huge thank you to each and every one of you for your kindness and support.

Secondly, as there are quite a few of you willing to help me out, here is the questionnaire for you all to fill out. You can simply copy it and paste it into a blank email, fill it out and return it to my email address. For those who are not that good with computers, Feel free to send me an email with your answers in it.

Once again - many thanks for your help!

Charlene Watson xxx

Ovarian Cancer Questionnaire

The following questionnaire is entirely voluntary, and all personal answers will be treated with the greatest confidentiality. Please do not feel that you have to answer all the questions.

Your participation in this questionnaire is greatly appreciated.

Name:

Current Age:

Age at Diagnosis:

Type of Ovarian Cancer diagnosed (if known):

Stage (if known):

Has anyone in your immediate family (mother, father, sister or brother) or on your mother or father’s side of the family (grandparents, aunts or uncles) ever had Ovarian, Breast or Colorectal Cancer:

Did you have any symptoms before you were diagnosed?

If yes, what symptoms did you have?

How long did you have symptoms before you saw a health care provider?

If you feel there were any delays in getting diagnosed, what were they?

If yes, briefly describe what might have helped you get diagnosed sooner:

When you were diagnosed, how did your health care provider give you information on the disease and your diagnosis? (Check all that apply):
* Conversation/Shared Information verbally
* Brochure
* Gave me a web site address
* Recommended I contact a national or local organisation
* Referred me to someone at hospital or treatment facility
* Other (please describe)

What topics did the information you were given cover? (Check all that apply):
* Ovarian Cancer (in general)
* Treatments
* Side Effect Management
* Nutrition
* Complementary & Alternative Medicine
* Support Groups
* Local or National Ovarian Cancer Organisations
* Clinical Trials/Current Cancer Research
* Other (please describe)

What treatment did you have/are you having?

Were you given the information you needed to make choices about your treatment?

Do you feel you were given enough information and support from first diagnosis and throughout your treatment?

If not, what would you change or recommend be introduced for future patients?

Do you feel Ovarian Cancer is as well recognised as other forms of cancer, for example Breast cancer?

If not, what do you think would help make it more well publicised?

Any other information (personal or otherwise) you would like to add:

Thank you for taking the time to complete the questionnaire.

#2

Not to sound ‘thick’, but the beginning of the post?? Can’t find…:((

See what’s new at http://www.aol.com

#3

Name: Marilyn Jones

Current Age: 60 (October 2007)

Age at Diagnosis: 60 (March 2007)

Type of Ovarian Cancer diagnosed (if known):

Stage (if known): 4

Has anyone in your immediate family (mother, father, sister or brother)
or on your mother or father’s side of the family (grandparents,
aunts or uncles) ever had Ovarian, Breast or Colorectal Cancer: No

Did you have any symptoms before you were diagnosed? Yes

If yes, what symptoms did you have? Abdominal pain

How long did you have symptoms before you saw a health care provider? 3 months more or less

If you feel there were any delays in getting diagnosed, what were they? Only myself–had no idea the pain was serious

If yes, briefly describe what might have helped you get diagnosed
sooner: Taking pain more seriously

When you were diagnosed, how did your health care provider give you
information on the disease and your diagnosis? (Check all that apply):
* Conversation/Shared Information verbally
* Brochure
* Gave me a web site address
* Recommended I contact a national or local
organisation
* Referred me to someone at hospital or
treatment facility
* Other (please describe)

Interesting you ask this. I had gone to a gastroenterologist for a cat scan and colonoscopy. When he got the results from the radiologist, he phoned me. “I have bad news,” he said. “It’s cancer.” Wow. Anyway, he wanted me to see a local oncologist but I made my own arrangements and went to MD Anderson Cancer Center.

What topics did the information you were given cover? (Check all that
apply): I was given info at MD Anderson–nothing from the GI guy.
* Ovarian Cancer (in general) Yes
* Treatments Yes
* Side Effect Management Yes
* Nutrition No
* Complementary & Alternative Medicine No
* Support Groups Yes
* Local or National Ovarian Cancer
Organisations No
* Clinical Trials/Current Cancer Research Yes - would have explored these if the chemo and operation hadn’t done the job
* Other (please describe) MD Anderson had brochures and booklets on every aspect of the disease and treatment–I read as little of it as possible. I have been very resistant toward learning much about my disease. I just want to forget I ever had it and I especially want ANYTHING else to be my main identifier and until I grow a head of hair, I am “cancer patient” first to everyone I meet. This is natural but I hate it. It isn’t that it is embarrassing or that I am a private person–I just don’t like being identified by a disability.

What treatment did you have/are you having? chemo and an operation (carbo & taxol ? - 6 treatments)

Were you given the information you needed to make choices about your
treatment? Didn’t feel I had any choices–I could be treated or die…I was pretty sick at the start.

Do you feel you were given enough information and support from first
diagnosis and throughout your treatment? Once I got to MD Anderson, YES.

If not, what would you change or recommend be introduced for future
patients?

Do you feel Ovarian Cancer is as well recognised as other forms of
cancer, for example Breast cancer? No

If not, what do you think would help make it more well publicised?

Any other information (personal or otherwise) you would like to add: If you are going to go with traditional medicine, go to the largest and most specialized facility you can get to. That’s where the talent and experience is. Survival rates are higher at the larger specialized facilities and the supporting staff is more experienced. Everything you need is bunched together and all the various parts communicate with each other. I never noticed anyone with an ego problem–it was all about the patients.

Marilyn Jones
PO Box 1892
Mason, TX 76856
http://www.goatview.com
(325)347-5326
"The reasonable man adapts himself to the world; the unreasonable man persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man."
-George Bernard Shaw

----- Original Message ----
From: peach ovarian-cancer-cpt6315@lists.careplace.com
To: goatview@yahoo.com
Sent: Sunday, October 14, 2007 2:29:29 PM
Subject: [ovarian-cancer] Ovarian Cancer Questionnaire

#4

Ovarian Cancer Questionnaire

The following questionnaire is entirely voluntary, and all personal answers
will be treated with the greatest confidentiality. Please do not feel that
you have to answer all the questions.

Your participation in this questionnaire is greatly appreciated.

Name: Tracy M. Gorden

Current Age: 37

Age at Diagnosis: 35 (2 months short of 36th birthday)

Type of Ovarian Cancer diagnosed (if known): estrogen positive epithilial
cell adenocarcinoma

Stage (if known): Stage IV grade 1

Has anyone in your immediate family (mother, father, sister or brother) or
on your mother or father’s side of the family (grandparents, aunts or
uncles) ever had Ovarian, Breast or Colorectal Cancer: maternal grandmother
and mother had breast cancer

Did you have any symptoms before you were diagnosed? yes

If yes, what symptoms did you have? very few…I was bloated, had a lack of
appetite, and had trouble controlling urination

How long did you have symptoms before you saw a health care provider? I saw
my health care provider about 2 months into the symptoms, but was not
referred to a specialist for an additional 6-7 months

If you feel there were any delays in getting diagnosed, what were they? part
of the reason could have been that I also have acid reflux and a thyroid
problem. The symptoms for my medication levels being low for those were the
same as the symptoms for ovarian cancer.

If yes, briefly describe what might have helped you get diagnosed sooner: I
think if my family practioner had listened better to me and also known the
symptoms for Ovarian cancer, he might have picked up on them much sooner
than he did regardless of my age.

When you were diagnosed, how did your health care provider give you
information on the disease and your diagnosis? (Check all that apply):

  • Conversation/Shared Information verbally YES
  • Brochure YES
  • Gave me a web site address NO
  • Recommended I contact a national or local organisation NO
  • Referred me to someone at hospital or treatment facility YES…I was sent
    to a gynocological oncologist at a major hospital
  • Other (please describe)

What topics did the information you were given cover? (Check all that
apply):

  • Ovarian Cancer (in general) YES
  • Treatments NO
  • Side Effect Management NO
  • Nutrition NO
  • Complementary & Alternative Medicine NO
  • Support Groups NO
  • Local or National Ovarian Cancer Organisations NO
  • Clinical Trials/Current Cancer Research NO
  • Other (please describe) NO

What treatment did you have/are you having? I have had 21 treatments of
chemotherapy as follows:
4 rounds of Taxol/Carbo - initial response then rise in CA-125
3 rounds of Taxotere/Carbo - initial response then rise in CA-125
9 rounds of Doxil - initial response then rise in CA-125 to 437
5 rounds of Cisplatin/Gemzar - latest CA-125 at 233

Were you given the information you needed to make choices about your
treatment? I have been given much information throughout my treatments

Do you feel you were given enough information and support from first
diagnosis and throughout your treatment? not at first, but that was
partially my choice. I was not ready to hear the information right away.

If not, what would you change or recommend be introduced for future
patients? I think its important to realize for new patients what they are
up against. There is very little literature about the stages of ovarian
cancer and the treatment options. I also think it is important for doctors
to allow their patients to play an active role in their treatments. Allow
and encourage patients to ask questions and research on their own and talk
to their doctors about what they have found.

Do you feel Ovarian Cancer is as well recognised as other forms of cancer,
for example Breast cancer? not even close! Ovarian cancer seems to be
pushed aside for causes such as breast cancer and as a person battling this
disease, it is one of the most frustrating road blocks there is.

If not, what do you think would help make it more well publicised? This may
seem cynical, but I don’t think until there are celebrities diagnosed with
this or more surviors around to push for publicity of the disease, there
will not be a huge change. Those of us that have the disease now need to
advocate to our local government in order to publicize the disease and get
the word out to all women.

Any other information (personal or otherwise) you would like to add:

I am free to answer any other questions you may have Charlene. Let me know
if there is anything else that I can help with! I do have a copy of the
local newspaper that I was interviewed for last month with a good article on
ovarian cancer if you would like it. Let me know and I can send it to you!

Thank you for taking the time to complete the questionnaire.


#5

Tracy’s story sure drives home how lucky I am. My last CA-125 was SIXTEEN. Just SIXTEEN. And that was after starting out over 3,000. Every chemo treatment saw my CA-125 cut in half or more. And there was no delay between seeing the GI guy and going to MD Anderson–filled out the Anderson online form a couple days later after looking online at every big cancer center in the country. Lucky me–it was only 5 hours away from here. And of course I am 60, not 35…I am no where near done with my life, but at least I had the satisfaction of knowing I had done almost everything I really wanted to do (never was one to delay gratification, even before the cancer).

I think another question for this questionnaire should be where we are all located.

Marilyn Jones
PO Box 1892
Mason, TX 76856
http://www.goatview.com
(325)347-5326
"The reasonable man adapts himself to the world; the unreasonable man persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man."
-George Bernard Shaw

----- Original Message ----
From: Tracy G ovarian-cancer-cpt6315@lists.careplace.com
To: goatview@yahoo.com
Sent: Sunday, October 14, 2007 4:47:29 PM
Subject: Re: [ovarian-cancer] Ovarian Cancer Questionnaire

#6

We would all love to read your article!
Please share!

Pam TvlBeach

Tracy G ovarian-cancer-cpt6315@lists.careplace.com wrote:

#7

I’d be happy to respond to the questionnaire but do not wish to have it posted to the forum and distributed at large. I’d need your personal email to do this.

#8



>Ovarian Cancer Questionnaire
>
>The following questionnaire is entirely voluntary, and all personal
>answers will be treated with the greatest confidentiality.  Please
>do not feel that you have to answer all the questions.
>
>Your participation in this questionnaire is greatly appreciated.
>
>
>Name: Janice Suckow
>
>Current Age: 60
>
>Age at Diagnosis: 59
>
>Type of Ovarian Cancer diagnosed (if known): Epithelial
>
>Stage (if known):1C
>
>Has anyone in your immediate family (mother, father, sister or
>brother) or on your mother or father's side of the family
>(grandparents, aunts or uncles) ever had Ovarian, Breast or
>Colorectal Cancer:  Yes, both parents had Colon Cancer.  My father was an only child and an Ashkenazi Jew.  My mother was an English Methodist (descended from  early Quakers in the US).  I discovered that I am BRCA1 positive as is my daughter.

>
>Did you have any symptoms before you were diagnosed?
>Yes
>If yes, what symptoms did you have?
>Indigestion and abdominal swelling.

>How long did you have symptoms before you saw a health care
>provider?
>I had not seen a gyn doctor in about 12 years but I would say that the indigestion was about a year.  I had been diagnosed with reflux and hiatal hernia so I thought that it was that.

>If you feel there were any delays in getting diagnosed, what were
>they?
>Do you mean from the time I went to the gyn doctor because I felt a large mass in my abdomen or do you mean delay in going to the doctor???  The doctor did a TVU the next day and a CA-125 immediately.  I went to the OR within two weeks.
>If yes, briefly describe what might have helped you get diagnosed
>sooner:
>I would have gone to the doctor sooner if I had not been embarassed that I was putting on so much weight around my middle.
>When you were diagnosed, how did your health care provider give you
>information on the disease and your diagnosis? (Check all that
>apply):
> * Conversation/Shared Information verbally Yes--gave me the name of 3 oncologists to go to for chemo
> * Brochure
> * Gave me a web site address
> * Recommended I contact a national or local                   
>organisation
> * Referred me to someone at hospital or    treatment facility
> * Other (please describe)
>
>What topics did the information you were given cover? (Check all
>that apply):

I went to a local medical center art show featuring a woman's art as she dealt with ovarian cancer and the medical center had many handouts regarding:
> * Ovarian Cancer (in general)
> * Treatments
> * Side Effect Management
> * Support Groups
> * Local or National Ovarian Cancer    Organisations
> * Clinical Trials/Current Cancer Research
> * Other (please describe)
>
>What treatment did you have/are you having? Taxol and Carboplatin--4 rounds
>
>Were you given the information you needed to make choices about your
>treatment?
>Yes
>Do you feel you were given enough information and support from first
>diagnosis and throughout your treatment?
>The literature told me about genetic counselling (Gilda Radner Registry) and gave me numbers to call but my oncologist and my gyn doctor who are both Jewish did not suggest genetic testing at all.


>If not, what would you change or recommend be introduced for future
>patients?
>All patients should be encouraged to seek genetic testing if they have relatives in the high risk groups whether they are Jewish or not.  No one suggested it even when I said that both my parents had colon cancer.  Now my children know that they have to be tested and monitored.

>Do you feel Ovarian Cancer is as well recognised as other forms of
>cancer, for example Breast cancer?
>No. But there are so fewer cases of ovarian cancer than breast cancer.  I think that ovarian cancer is usually associated with older women and I don't think there is the shock value.


>If not, what do you think would help make it more well publicised?
>We have suddenly gotten TV ads for genetic testing for ovarian and breast cancer because of private labs doing it for profit.  I don't know how to publicize ovarian cancer symptoms because I think that everybody has indigestion, bloating, abdominal pain for lots of reasons.

>Any other information (personal or otherwise) you would like to add:
>I went to the doctor because I had started bleeding 4 years after menopause.  When I saw the blood I started examining my abdomen and felt the lump.  The bleeding was caused by a cervical polyp which was benign and my Pap smear was negative.  It saved my life!
>


Help yourself to FREE treats served up daily at the Messenger Caf
#9

Ovarian Cancer Questionnaire

The following questionnaire is entirely voluntary, and
all personal
answers will be treated with the greatest
confidentiality. Please do not
feel that you have to answer all the questions.

Your participation in this questionnaire is greatly
appreciated.

Name: Stephanie Chapman

Current Age: 32

Age at Diagnosis: 30

Type of Ovarian Cancer diagnosed (if known):
Epithiliean Ovarian cancer

Stage (if known): IIIC

Has anyone in your immediate family (mother, father,
sister or brother)
or on your mother or father’s side of the family
(grandparents,
aunts or uncles) ever had Ovarian, Breast or
Colorectal Cancer: 1 aunt with breast cancer (father’s
side – deceased from breast cancer)
1 aunt with colorectal cancer (father’s side)

Did you have any symptoms before you were diagnosed?
Yes
If yes, what symptoms did you have?
Bloating, abdominal pain, lack of appetite
How long did you have symptoms before you saw a health
care provider? 2 months

If you feel there were any delays in getting
diagnosed, what were they? The doctor told me nothing
was wrong with me and sent me home for another month.

If yes, briefly describe what might have helped you
get diagnosed
sooner: If the doctor had done a more thorough
internal exam and abdominal exam and then ordered a CT
scan immediately. Also, me hearing about the symptoms
before would have helped – I thought I had bad
indigestion.

When you were diagnosed, how did your health care
provider give you
information on the disease and your diagnosis? (Check
all that apply):
X * Conversation/Shared Information
verbally
X * Brochure
* Gave me a web site address
* Recommended I contact a national or
local organisation
X * Referred me to someone at hospital
or treatment facility
* Other (please describe)

What topics did the information you were given cover?
(Check all that
apply):
X * Ovarian Cancer (in general)
X * Treatments
X * Side Effect Management
X * Nutrition
* Complementary & Alternative Medicine
* Support Groups
X * Local or National Ovarian Cancer
Organisations
* Clinical Trials/Current Cancer
Research
* Other (please describe)

What treatment did you have/are you having?
First, I had 3 treatments of carboplatin/taxol IV and
then 3 treatments of cisplatin/taxol IP. I recurred 6
months later.
Then I went on a clinical trial anitbody, Morab IV. I
was on this alone for 6 months. But my tumors
continued to grow.
I am currently on Carboplatin/taxol IV and Morab IV.

Were you given the information you needed to make
choices about your treatment?
Yes

Do you feel you were given enough information and
support from first diagnosis and throughout your
treatment?
Yes

If not, what would you change or recommend be
introduced for future patients?

Do you feel Ovarian Cancer is as well recognised as
other forms of cancer, for example Breast cancer?
No

If not, what do you think would help make it more well
publicised?
Yes

Any other information (personal or otherwise) you
would like to add:

Thank you for taking the time to complete the
questionnaire.

Yahoo! oneSearch: Finally, mobile search
that gives answers, not web links.
http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

#10

Name: nancy guzauski

Current Age: 52

Age at Diagnosis: 52

Type of Ovarian Cancer diagnosed (if known): don’t know

Stage (if known): 1b

Has anyone in your immediate family (mother, father, sister or brother) or
on your mother or father’s side of the family (grandparents, aunts or
uncles) ever had Ovarian, Breast or Colorectal Cancer:
my father had
Did you have any symptoms before you were diagnosed? some

If yes, what symptoms did you have? bloating, indigestion and spotting

How long did you have symptoms before you saw a health care provider? about
a year

If you feel there were any delays in getting diagnosed, what were they? no

If yes, briefly describe what might have helped you get diagnosed sooner: if
I realized that these symtoms meant something. The spotting is what finally
made me get checked.

When you were diagnosed, how did your health care provider give you
information on the disease and your diagnosis? (Check all that apply):

  • Conversation/Shared Information verbally- yes
  • Brochure- no
  • Gave me a web site address- no
  • Recommended I contact a national or local organisation -no
  • Referred me to someone at hospital or treatment facility -yes
  • Other (please describe)

What topics did the information you were given cover? (Check all that
apply):

  • Ovarian Cancer (in general) -yes
  • Treatments -yes
  • Side Effect Management -yes
  • Nutrition -no
  • Complementary & Alternative Medicine -no
  • Support Groups -no
  • Local or National Ovarian Cancer Organisations -no
  • Clinical Trials/Current Cancer Research -no
  • Other (please describe) psychologist

What treatment did you have/are you having? hysterectomy

Were you given the information you needed to make choices about your
treatment? none

Do you feel you were given enough information and support from first
diagnosis and throughout your treatment? yes

If not, what would you change or recommend be introduced for future
patients?

Do you feel Ovarian Cancer is as well recognised as other forms of cancer,
for example Breast cancer? I think it’s getting more recognition now

If not, what do you think would help make it more well publicised? more
people talking about it who had or has it

Any other information (personal or otherwise) you would like to add: I
really think it’s the worst thing you could have because it can come back at
anytime.

----- Original Message -----
From: “peach” ovarian-cancer-cpt6315@lists.careplace.com
To: nanguz@rochester.rr.com
Sent: Sunday, October 14, 2007 3:29 PM
Subject: [ovarian-cancer] Ovarian Cancer Questionnaire

#11

Hi everyone!

Your response has been excellent!

For those who do not wish to post their reply on here, you can send it straight to my email address -

charlene.watson1@btinternet.com

And let me just tell you all now - I do not see you as just “cancer patients”. To me you are all wonderful women, and every one of you are beautiful! And dont think I will just leave you all after my report has finished. I plan on getting to know each and every one of you to find out who you all are and what you all enjoy doing. So dont think you are getting rid of me that easily! Ha ha!

Also, Im currently planning on doing a sponsored Sky Dive in December - all mony going to Ovarian Cancer Action - a registered charity here in Britain dedicated to defeating ovarian cancer through funding research, raising awareness and giving a voice to women affected by the disease. So when i arrange it and jump, i will post pictures for you all to see!

My love to each and everyone of you
Charlene xxx

#12

Charlene,

Don’t believe I’ve gotten the questionnaire…can you send it to this
address?

Thanks much!

Jennifer

See what’s new at
http://www.aol.com

#13

The questionnaire is at the beginning of the post xx

#14

here you are hun - if you dont want to post it onto the main page, you can send it to my personal email

charlene.watson1@btinternet.com

Ovarian Cancer Questionnaire

The following questionnaire is entirely voluntary, and all personal answers will be treated with the greatest confidentiality. Please do not feel that you have to answer all the questions.

Your participation in this questionnaire is greatly appreciated.

Name:

Current Age:

Age at Diagnosis:

Type of Ovarian Cancer diagnosed (if known):

Stage (if known):

Has anyone in your immediate family (mother, father, sister or brother) or on your mother or father’s side of the family (grandparents, aunts or uncles) ever had Ovarian, Breast or Colorectal Cancer:

Did you have any symptoms before you were diagnosed?

If yes, what symptoms did you have?

How long did you have symptoms before you saw a health care provider?

If you feel there were any delays in getting diagnosed, what were they?

If yes, briefly describe what might have helped you get diagnosed sooner:

When you were diagnosed, how did your health care provider give you information on the disease and your diagnosis? (Check all that apply):

  • Conversation/Shared Information verbally
  • Brochure
  • Gave me a web site address
  • Recommended I contact a national or local organisation
  • Referred me to someone at hospital or treatment facility
  • Other (please describe)

What topics did the information you were given cover? (Check all that apply):

  • Ovarian Cancer (in general)
  • Treatments
  • Side Effect Management
  • Nutrition
  • Complementary & Alternative Medicine
  • Support Groups
  • Local or National Ovarian Cancer Organisations
  • Clinical Trials/Current Cancer Research
  • Other (please describe)

What treatment did you have/are you having?

Were you given the information you needed to make choices about your treatment?

Do you feel you were given enough information and support from first diagnosis and throughout your treatment?

If not, what would you change or recommend be introduced for future patients?

Do you feel Ovarian Cancer is as well recognised as other forms of cancer, for example Breast cancer?

If not, what do you think would help make it more well publicised?

Any other information (personal or otherwise) you would like to add:

Thank you for taking the time to complete the questionnaire.

#15

To: teaandsoda@hotmail.com> From: ovarian-cancer-cpt6315@lists.careplace.com> Subject: Re: [ovarian-cancer] Ovarian Cancer Questionnaire> Date: Mon, 15 Oct 2007 11:23:16 -0400> >

#16

Thanks, it’s coming to your personal email, but feel free to post it. My
goal is to help as many women as possible!

See what’s new at http://www.aol.com

#17

To: teaandsoda@hotmail.com> From: ovarian-cancer-cpt6315@lists.careplace.com> Subject: [ovarian-cancer] Ovarian Cancer Questionnaire> Date: Sun, 14 Oct 2007 15:29:29 -0400> >

#18

Name: shirley zumbrun

Current Age: 50

Age at Diagnosis: 47

Type of Ovarian Cancer diagnosed (if known): poorly differentiated endometrioid

Stage (if known): 3c now stage 4

Has anyone in your immediate family (mother, father, sister or brother) or on your mother or fatherÂ’s side of the family (grandparents, aunts or uncles) ever had Ovarian, Breast or Colorectal Cancer: my mother died of breast cancer in 1968 at the age of 36, one of mom’s sister died of breast, and the other sister died of breast and ovarian, grandmother mom’s side had colon cancer, cousin mom’s side ovarian,

Did you have any symptoms before you were diagnosed? yes

If yes, what symptoms did you have? abd pain, distention

How long did you have symptoms before you saw a health care provider? I complained about my symptoms for several years, and I was been tx for partial bowel obstruction.

If you feel there were any delays in getting diagnosed, what were they? yes
If yes, briefly describe what might have helped you get diagnosed sooner: I should have had a ct-scan or transvaginal ultrasound

When you were diagnosed, how did your health care provider give you information on the disease and your diagnosis? (Check all that apply):

  • Conversation/Shared Information verbally YES
  • Brochure
  • Gave me a web site address
  • Recommended I contact a national or local organisation
  • Referred me to someone at hospital or treatment facility
  • Other (please describe)

What topics did the information you were given cover? (Check all that apply): none

  • Ovarian Cancer (in general)
  • Treatments
  • Side Effect Management
  • Nutrition
  • Complementary & Alternative Medicine
  • Support Groups
  • Local or National Ovarian Cancer Organisations
  • Clinical Trials/Current Cancer Research
  • Other (please describe)

What treatment did you have/are you having? I had 6 does of taxotere and 8 doses of carboplatin then 18 months of remission then cancer spread to my liver and I had another 4 doses of taxotere and 3 doses of carboplatin

Were you given the information you needed to make choices about your treatment? not with the first oncologist. I changed oncologist when the cancer spread to my liver and she is wonderful. We made all the treatment choices together

Do you feel you were given enough information and support from first diagnosis and throughout your treatment? no

If not, what would you change or recommend be introduced for future patients? a buddy system with someone who has ovarian cancer

Do you feel Ovarian Cancer is as well recognised as other forms of cancer, for example Breast cancer? NO!!

If not, what do you think would help make it more well publicised? I don’t know

Any other information (personal or otherwise) you would like to add: I am BRCA 1 positive along with my sister and my cousin who died of ovarian cancer.

http://www.myspace.com/shirleyz
check out my webpage at www.caringbridge.org/visit/shirleyzumbrun

#19

Name: Carolyn Adams from Trenton, Tennessee

Current Age: 40

Age at Diagnosis: 39

Type of Ovarian Cancer diagnosed (if known): all
i knew it was juss ovarian cancer
Stage (if known): Stage 3

Has anyone in your immediate family (mother,
father, sister or brother) or on your mother or
father’s side of the family (grandparents,
aunts or uncles) ever had Ovarian, Breast or
Colorectal Cancer: nope im the first

Did you have any symptoms before you were
diagnosed? yes, I was bloated and looked
pregnant, and pee’ed alot and my periods were aweful.

If yes, what symptoms did you have? plus I hurt around my ovaries, too

How long did you have symptoms before you saw a
health care provider? about 6 months, I kept goin
back to my doc saying, something is wrong and she finally sent me to a obgyn

If you feel there were any delays in getting
diagnosed, what were they? the obgyn just thought
I needed a hysterecomy, so thats how they found
my cancer by going in to do that surgery.

If yes, briefly describe what might have helped
you get diagnosed sooner: not sure

When you were diagnosed, how did your health care
provider give you information on the disease and
your diagnosis? (Check all that apply): *
Conversation/Shared Information verbally *
Brochure * Gave me a web site address *
Recommended I contact a national or local
organisation * Referred me to someone at hospital
or treatment facility * Other (please describe)
My doctor that they sent me to was wonderful, he
told me that we was gonna make it thru it, and
gave me lots of stuff to read, plus yes talked to people plus had the internet

What topics did the information you were given
cover? (Check all that apply): * Ovarian Cancer
(in general) * Treatments * Side Effect
Management * Nutrition * Complementary &
Alternative Medicine * Support Groups * Local or
National Ovarian Cancer Organisations * Clinical
Trials/Current Cancer Research * Other (please
describe) my doc gave me about all of them topics to look in to.

What treatment did you have/are you having? I had
8 rounds of chemo, they did 4 chemos then surgery, then 4 more chemos

Were you given the information you needed to make
choices about your treatment? well actually with
the doc I had and the stage I was in, I mean
mentally, without the doc tellin me that this was
the best treatment and it was gonna work, I had
to finally trust him and he was right, if I would
have had to think about this or that treatment,
not sure if I would have made it thru, cause I got so depressed

Do you feel you were given enough information and
support from first diagnosis and throughout your treatment? Yes I think so

If not, what would you change or recommend be introduced for future patients?

Do you feel Ovarian Cancer is as well recognised
as other forms of cancer, for example Breast
cancer? No its not, makes me upset that more
girls dont know more about ovarian cancer, most
of us get it and find out its too late. I think
there should be more advertising and voice on the subject
If not, what do you think would help make it more
well publicised? Getting us who have had it or
are still going thru it to talk about it.

Any other information (personal or otherwise)you
would like to add: yes would like to add that
…I hope this helps ya, and reading about
everyone who has had this cancer helps me, cause
im only 9months now survivor and go for checkups
every 3 months, and I still cry alot
thinking, its gonna come back some where else in
my body. I go this friday for my next checkup keep yalls fingers crossed :slight_smile:

#20

Name: Kristi Barham

Current Age: 44

Age at Diagnosis: 43

Type of Ovarian Cancer diagnosed (if known): don’t know

Stage (if known): don’t know

Has anyone in your immediate family (mother, father, sister or
brother) or on your mother or father’s side of the family
(grandparents, aunts or uncles) ever had Ovarian, Breast or
Colorectal Cancer: no

Did you have any symptoms before you were diagnosed? Yes

If yes, what symptoms did you have? I had a mass in my tummy, my
regular dr thought I was pregnant

How long did you have symptoms before you saw a health care
provider? 1 month

If you feel there were any delays in getting diagnosed, what were
they?none, it was amazing

If yes, briefly describe what might have helped you get diagnosed
sooner:

When you were diagnosed, how did your health care provider give you
information on the disease and your diagnosis? (Check all that apply):
* Conversation/Shared Information verbally X
* Brochure X
* Gave me a web site address X
* Recommended I contact a national or local organization X
* Referred me to someone at hospital or treatment facility X
* Other (please describe)

What topics did the information you were given cover? (Check all
that apply):
* Ovarian Cancer (in general) X
* Treatments
* Side Effect Management
* Nutrition X
* Complementary & Alternative Medicine
* Support Groups
* Local or National Ovarian Cancer Organisations
* Clinical Trials/Current Cancer Research
* Other (please describe)

What treatment did you have/are you having? Taxol 24 hr pump,
cicsplatin in the belly and then taxol in the belly a week later.
I had an Intrprenierail port (in the tummy)

Were you given the information you needed to make choices about
your treatment? While I was healing from the hysterectomy

Do you feel you were given enough information and support from
first diagnosis and throughout your treatment? yes/no

If not, what would you change or recommend be introduced for future
patients? Would have liked more information about chemo in general

Do you feel Ovarian Cancer is as well recognised as other forms of
cancer, for example Breast cancer? no, but breast cancer is so
much more prevalent

If not, what do you think would help make it more well
publicised? If more people were affected and I wouldn’t wish that
on anyone!!!

Any other information (personal or otherwise) you would like to
add: If you ever have anymore questions, please include me in the
study. On a side note, after all my chemo was done, they found
thyroid cancer. Have you found that with other people?

Thank you for taking the time to complete the questionnaire.

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