Study - Sensitive Topics

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Phuong
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Study - Sensitive Topics

Postby Phuong » Thu Nov 01, 2018 1:10 pm

I'm working as a patient advocate with a doctor who has received a grant to study survivorship in early onset CRC. Drs are so focused on saving our lives that sometimes (as we often discuss) other things are not (like finances) which may have a big impact on your life. My question is how do you feel about being asked in a survey about a sensitive topic such as your sex life and the possible changes in that area? Would you be offended and would it make you NOT want to participate in the study? Is there a specific way that you would want the question asked? Would you want it to be an optional section? Please let me know your thoughts. Thank you!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

hiker
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Joined: Thu Aug 09, 2018 10:15 am

Re: Study - Sensitive Topics

Postby hiker » Thu Nov 01, 2018 1:30 pm

Once I found MSK and Dr. Kemeny, I agreed to do just about anything they asked. I was in a clinical run by Dr. K, I was in a study of pain levels during and after chemo, I did a study while in the hospital for my liver resection regarding walking and strength, and a quality of life study that asked some very personal questions - some of which were on the topic you mention.

I have no problem sharing if that info could be used to help others. I figure if I let strangers put tubes and hoses in every orifice of my body, there's not much to be kept secret.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

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juliej
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Re: Study - Sensitive Topics

Postby juliej » Thu Nov 01, 2018 7:50 pm

Phuong, I'd have no problem answering questions about my sex life during treatment or post-treatment if it was posed in the context of a medical survey.

You're right that it isn't something discussed by oncologists and yet it is a vital part of a person's life. I don't think it needs to be an optional section, but it could be in case someone was squeamish about sharing personal details. Like I said, though, I'd have no problem answering the questions.

Hope this helps!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

Jannine
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Re: Study - Sensitive Topics

Postby Jannine » Thu Nov 01, 2018 8:13 pm

I'd have no problem with answering a questionnaire about sex life and other things in the context of a medical survey. I'm definitely getting into menopause and it's hard for me to know if some of the things happening are menopause-related (which I assume to be the case) or if they're chemo-related. And I should probably ask my oncologist about that. Not that I'm embarrassed to discuss it, but other things tend to be higher on my list when I see her. Really, it's much easier to talk about when the Dr. asks *me* about it, rather than it having to be the other way around.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

teachpdx
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Location: Portland, OR

Re: Study - Sensitive Topics

Postby teachpdx » Mon Nov 05, 2018 4:43 pm

As a non practicing lesbian, when I was finished with treatment I remember the doc telling me it was ok to resume sexual relations (assuming I WAS having that) and all I could think was a penis MIGHT go up there butt that lesbian sex was going to be next to impossible. So ask away!
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Steph20021
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Location: Ontario, Canada

Re: Study - Sensitive Topics

Postby Steph20021 » Sat Nov 10, 2018 10:57 pm

Personally, I like knowing that my answers are confidential so if I could do them online and not have to hand a paper in, and if it was anonymous with a number so that people wouldn’t trace it back to me then I’d be comfortable answering. I’ve had one or two questions asked on paper among other health questions but that one is marked optional and there is a box to check if you aren’t comfortable answering.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

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Phuong
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Re: Study - Sensitive Topics

Postby Phuong » Thu Nov 15, 2018 6:25 pm

Thanks for these thoughtful answers. If there is anyone else that would like to chime in but would rather not post, please PM me. The more answers I have, the better position I will be to share and the better the questions on the survey will be. Much appreciated!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

Eleda
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Re: Study - Sensitive Topics

Postby Eleda » Thu Nov 15, 2018 8:05 pm

No probs answering anything TBH,and would love to actually see replies as previously mentioned
It's an off topic with the hospitals

"Here a few dialators and off u go"( females)
Pretty lame TBH

There is a lot of damage done in there and we need to b aware of the consequences and possible avoidance of any further damage
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Ron50
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Re: Study - Sensitive Topics

Postby Ron50 » Fri Nov 16, 2018 1:39 am

I have no problems discussing or answering any personal questions. Thanks to surgery ,chemo ect that part of my life ceased to exist over twenty years ago so I would probably be a poor subject for a study. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo


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