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Ovarian Cancer Patient Education Day in Toronto

Alexandra's picture
Alexandra
Posts: 1211
Joined: Jul 2012

Today I attended Ovarian Cancer seminar organized by Ovarian Cancer Canada and Sunnybrook Odette Cancer Center in Toronto.

About 100 patients and caregivers came to this event.

Agenda was quite intense and plenty of time was allowed for questions:

- Ovarian Cancer and You - by gyno-oncologist with emphasis on hereditary cancer and current trials

- Sexuality - by RN talking about intimacy and managing menopause

- Getting on with the business of Living - by psychiatrist with helpful tips on mindful living and managing anxiety

- Creative Expressions workshop for patients and survivors

- Caregiver workshop

- Breakout sessions: #1 Ask a nurse and #2 Ask a pharmasist

There were booths set up by Canadian Cancer Society, Look Good Feel Better, Ovarian Cancer Canada, Ovarian Cancer Peer Support Network, and Wellspring.

Overall it was a very successful day of education and networking. It included breakfast, lunch and gift bags.

lovesanimals's picture
lovesanimals
Posts: 1241
Joined: Sep 2011

How I wish I could have been there with you!  I'm sure you got a lot of good information but I was wondering if you learned anything that surprised you (in a good way)?

Kelly

Alexandra's picture
Alexandra
Posts: 1211
Joined: Jul 2012

I learned that there is a way for Canadians to get into US drug trials and get insurance to pay for it. Not a straightforward way, but it is possible.

Psychiatrist mentioned that Ritalin and Concerta (ADD drugs) could be used for "chemo brain". I did not know that.

Here's a link to video how to feel less tired: www.sunnybrook.ca/occ/fatigue

They recommended cool-off neck bands with crystals for hot flash relief (6 months ago I mentioned them to the nurse, safety supply stores sell them for $2-3/ea) 

I met Marilyn Sapsford, Ontario Regional Manager for Ovarian Cancer Canada, who is a 10 year OVCA survivor.

I ran into a survivor, Mary C., we worked together 14 years ago.

There was $40 worth of intimate lubricants from www.Body2body.com in the gift bag - I may be away from this board for a while Wink

Oatmeal and peanut butter cookies were really good.

Upcoming Events:

Sep. 8, 2013 - Ovarian Cancer Canada Walk of Hope www.ovariancancerwalkofhope.ca

Sep. 23, 2013 - Expedition of Hope - climb Mount Kilimanjaro or Safari for Survivors in Tanzania www.expeditionofhope.com

 

 

wholfmeister's picture
wholfmeister
Posts: 254
Joined: Dec 2012

I agree! Sounds like a fantastic day.  I'd like to know more about the Sexuality.  I was beyond menopause when diagnosed, so that really isn't an issue for me.  But since surgery, there just isnT anything happening down there for me!  (Sorry if that sounds crude,). Haha! Doesn't sound like I'll get any sympathy from Alexandra!

Alexandra's picture
Alexandra
Posts: 1211
Joined: Jul 2012

Here is a good guide on the sexuality subject:

http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/sexualsideeffectsinwomen/sexualityforthewoman/sexuality-for-the-woman-with-cancer-toc

Sexuality after cancer is somewhat of a hobby of mine. It all comes down to 2 things: low libido and vaginal atrophy / dryness.

I was pre-menopausal, but menopause symptoms are no longer an issue for me either, because I am on oral and vaginal estrogen since my hysterectomy. If someone tries to take my Premarin 0.625 away from me, I would chop their hand off.

Dryness is an easy fix - estring, vagifem, vaginal premarin make tissues supple and pliable. Topical estrogen does not spread, so you can have it even if your cancer is E-positive. If you don't want estrogen - buy Replens suppositories (3 times a week). Use tons of lube with intercourse (Astroglide, KY, ideally water- or silicon-based), re-apply as needed.

Athrophy - Kegel exercises, dilators (any old dildo will work too) or regular sex or masturbation.

Low libido is very much connected to your general state of mind. Anti-depressants, painkillers, fatigue, anxiety, low self-image can all tank your libido. Testosteron cream or patch help, but it's hard to get the doctor to prescribe them, because there is no safety reasearch for women with cancer. You might need something extra to get in the mood (many girls like candles, bubble bath, perfume, lingerie, XXX magazine or movie; I prefer a glass of red wine or a joint). Change the scenery for extra adrenalin, do it in the shower or some place semi-private: in the car, on the balcony, in the park, etc.). If your partner always initiates - approach him first. Dress up and role play. Start with 69 mutual oral. Whatever it takes, JUST DO IT. In the words of the nurse Cathie from the SHARE sexual health clinic - "busy vagina is a happy vagina".

Here goes too much information.

In my case libido dropped significantly; but it dropped from the "nympho" level, so now it is about the same as any 45-year-old woman. Instead of thinking about sex 20 times a day, I now maybe think about it 5 times and act on it once or twice. I kept my cervix, so there are no changes to vaginal sleeve length. Reaching orgasm takes much longer than before cancer (maybe 10 minutes of foreplay or vibrator instead of 30 seconds). Squirting days are over. Orgasms are still strong and multiple but shorter because there is no uterus to resonate contractions. Sex was one of 2 things that pulled me out of my existential funk after cancer diagnosis, 2 surgeries and while on chemo. Second one was Heavenly Hush ice cream.

wholfmeister's picture
wholfmeister
Posts: 254
Joined: Dec 2012

You really are the best friend!

lovesanimals's picture
lovesanimals
Posts: 1241
Joined: Sep 2011

I agree with Merrily that you've given us very helpful ideas!  I've been on an antidepressant for about six years and my libido has definitely tanked.  You've given me some helpful options.

Kelly

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Alexandra,

This sounds like a wonderful event, with lots of helpful information.  I do beg to differ with regard to using hormone creams vaginally.  Our vaginal tissues are very absorbant and just like anything we put on our skin, the ingredients will be absorbed into the body.  Safe alternatives to the products you mention are coconut oil for lubrication and "Women's Replenishing Oil" from Dancing Willow Herbs for atrophy and other issues.

2Timothy17

I heard that they have opened an arm of the Phase1 Sorcimed trial at MD Anderson. 

2timothy1 7's picture
2timothy1 7
Posts: 335
Joined: Jan 2012

Alexandra

just curious about the current trials a section. Did they mention anything about Soricimed trials &/or results off the trial that was going on in Canada?

thanks

Shawnnna

Alexandra's picture
Alexandra
Posts: 1211
Joined: Jul 2012

Shawnna,

In Canada trials opportunities are very limited compared to the USA. The only current trials they mentioned were:

- Targeted therapy Bevacizumab (Avastin)

- Pazopanib (Votrient®)

- PARP inhibitors (Olaparib)

I asked about taking diabetic drug Metformin for recurrence prevention and my question was kinda brushed off. I am taking it anyways.

 

Kate,

I understand that you are against estrogen in any form and I respect that. I am not trying to get all women to use it; it is my choice and it was prescribed to me by the oncologist. The same oncologist who refused to prescribe testosteron. Go figure. I was told repeatedly by several doctors and read research online that if taken vaginally estrogen is safe even for estrogen-dependent cancers. Each woman should consult her doctor and decide for herself.

And in my experience Replens works about the same as vaginal estrogen cream; however for me Premarin cream is covered by my drug insurance and OTC Replens is not.

On a different note: I may not agree with the suggestion that eating cabbage and other cruciferous vegetables is a serious alternative to early surveillance and/or prophylactic oophorectomy / mastectomy for women with genetic BRCA mutations but I respect it as someone's opinion. If a woman decides to follow this idea at her own risk I would not try to push my beliefs on her.

EnglishGal's picture
EnglishGal
Posts: 101
Joined: Jul 2011

Hi Alexandra:

I joined this board two years ago and posted frequently in the beginning; the last year I have lurked.  I was there at the Ovarian Cancer Patient Education Day on May 25th and I also live in Toronto (North York).

I really enjoyed the day and learned a few things.  You have given a very good overview of the event.

I was DX'd in May of 2010, had optimal debulking by a gyn-onc at North York General Hospital and six sessions of chemo.  Today, at age 68, I am doing well and in remission and fervently hoping this happy state of affairs will last.

I  do seem to recall someone from the audience mentioning Metformin (probably you) and they sort of glossed over that, I noticed.  I am on Metformin for Type 2 diabetes (2 a day).  I have read on other forums that Metformin could perhaps prevent recurrences.

I really appreciate and enjoy reading your very thoughtful and well-informed posts.

 

English Gal (Ann)

 

 

 

Alexandra's picture
Alexandra
Posts: 1211
Joined: Jul 2012

Glad to meet a fellow Canadian. I live in Maple (next to Wonderland).

Yep, I was asking tons of questions with a heavy Russian accent. About Metformin too. I am taking 2x500mg a day and I'm not diabetic. Dr. Vicus didn't give an answer even though she co-wrote an article on it.

Enjoy your summer travels and come back to this board all refreshed in the fall. We'll be here minding the store.

EnglishGal's picture
EnglishGal
Posts: 101
Joined: Jul 2011

Thanks for coming in, Alexandra.   As mentioned before, I hail from North York, I live in the area of Yonge/Sheppard.  It's nice to find a fellow Canuck!  I really do think there is something to this Metformin perhaps preventing recurrence.  I don't think it's doing us any harm anyway.  I take two Metformin pills day.

I met a lady at the seminar from Alliston, Sally, 64 years of age who was DX'd at  the same time as me but is having a recurrence.  Her partner, Mark was very nice.  We are exchanging emails and hope to get together when I've finished my summer travels.  It would be lovely to get together with you too.

 

Ann

 

 

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