Study - Sensitive Topics

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Phuong
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Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

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
Posts: 73
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-present
Clear of cancer since surgery

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

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 7/13/2018, CEA<1

Jannine
Posts: 74
Joined: Wed Jun 20, 2018 7:46 am

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 also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; added neulasta post infusion
9/2018: CEA 2.8
10/2018: CEA 2.4

teachpdx
Posts: 614
Joined: Wed Jan 16, 2013 12:29 am
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
Posts: 540
Joined: Sat Dec 27, 2014 4:58 pm
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 mutation
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, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Aug/16- on folfiri
Jan/18-folfox


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