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Post by SarahCate on Aug 7, 2013 0:00:52 GMT -6
Welcome to The Year(s) Cancer Stole.
This board is a small piece of what will, in time, hopefully be a larger organization. Ultimately the goal of TYCS is to provide emotional AND financial support to persons with Uterine, Ovarian, Vulvar, Vaginal, and/OR Cervical Cancer who are under the age of 40. Because the average patient age for these cancers is 50+, the under 40 group often gets overlooked in the grand scheme of emotional Cancer Care. As a demographic, we face unique challenges and issues that aren't necessarily as widespread for older Gynecological Cancer patients and survivors.
It will take time and work to get the proper Non Profit Organization up and running, but in the meantime, I wanted a place to at least start building some community and support. A lot of these boards will probably stay empty for awhile, but I look forward to activity picking up as time goes by.
In addition to all the standard open-accessibility boards, there is also a special board for Sexual Abuse Survivors (Survivor's Place). If you are a sexual abuse survivor and would like access to that section, please message me privately to be added to the group. The group is private and will never be shared on the board at large. The board itself is visible, but posts and posters are NOT. No one will ever know that you are in that group unless they are also in the group. I expect communications from within the SA board to remain there and NOT appear in the group at large.
Members who don't honor that request will be banned.
In the meantime, please feel free to join in and participate, introduce yourself, ask questions. Invite other Cancer-siblings, anyone who is fighting, or has fought Uterine or Ovarian Cancer is welcome to participate (regardless of gender ID).
If you have questions, suggestions, or are interested in becoming a moderator, please message me.
And welcome!
SarahCate, Founder Uterine Cancer Survivor Remission Date: Dec. 2012
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Post by Lux Fiam on Aug 8, 2013 3:20:01 GMT -6
This is lovely and awesome and I'm so glad you made this. Just a quick shout-out to all vaginal, vulvar, and cervical cancer fighters/survivors - you're welcome here too! Gynecological cancers are awful and we need to stick together <3
Lux Fiam Ovarian Cancer Survivor NED June 7, 2013
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appa
New Member
Posts: 1
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Post by appa on Aug 10, 2013 17:33:55 GMT -6
I am excited to be a part of this. As a uterine and ovarian cancer survivor at just 28, it truly is something that really does need a support system. I have considered finding a local support group near me, but feel a little wierd going to it, knowing that I am sure most of the members would be considerably older than myself. It is nice to find a forum to get support and help support others who are going through the exact same thing I am.
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Post by 3kindsofcancer on Aug 10, 2013 18:57:00 GMT -6
I hope you don't mind an older lady joining and posting once in a while about issues that affect us all. I was recently diagnosed with uterine cancer and a separate (and apparently quite rare) fallopian tube primary cancer. The uterine was early but since they missed both cancers on my frozen section during the hysterectomy (and in a d&c and endo biopsies), they did not remove nodes, ovaries, omentum, etc. I am having staging surgery on 9/12 and haven't found much support for general gyn cancers in any age group, so if you can point me to any, I'd appreciate it. Anyway, at 51, maybe I can be an honorary "mom" to the group and we can all learn together. (I also was diagnosed with a third cancer, carcinoid cancer, but that's another story...). Thanks for starting this group!
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Post by SarahCate on Aug 10, 2013 19:01:42 GMT -6
Welcome to BOTH of you! And the truth is, I have no intention of turning away members of any age! I just noted in my own fight that every group I found was populated by folks 60+ almost exclusively... and I wanted to create a space for people like me. Welcome to the board- and while I know it sounds strange (since membership involves cancer) we're glad to have you with us!
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Post by 3kindsofcancer on Aug 10, 2013 22:38:05 GMT -6
Thanks so much, and believe me, I understand. I am thinking of starting a board and ultimately a support group for women diagnosed with fallopian tube cancer...there is nothing out there, and only sporadic posts on the ovarian cancer boards because it is treated similarly. Young women with cancer need a special kind of support and understanding, and they will be thrilled to know you exist here. Young breast cancer survivors have a lot of support and this was sorely needed. Kudos to you!
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Post by SarahCate on Aug 10, 2013 22:56:11 GMT -6
I am more than happy to add Fallopian Cancer to the... masthead, if you will. It's certainly what I'd consider gynecological! Why not try to spearhead another in need of awareness while I have the platform to do so?
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WELCOME!
Aug 14, 2013 3:13:37 GMT -6
via mobile
Post by jenifererin on Aug 14, 2013 3:13:37 GMT -6
Hi all! I still feel like I am EXTREMELY young to have had a gyn cancer, because I was. I was diagnosed with ovarian cancer at the young age of 15, 5 years after my grandmother passed away from ovarian cancer. Unfortunately, it has been what has taken most of the women on my mom's side of the family. I was very fortunate to have had it found when it was, otherwise, who knows where I would be today.
Jen Strong survivor Ambitious advocate
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amandaskye
New Member
Posts: 1
Diagnosis: Ovarian Cancer
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Post by amandaskye on Aug 25, 2013 17:57:37 GMT -6
My name is Amanda, I am glad to have found this page. I was diagnosed with stage 1 ovarian cancer at age 18,(now 21 years old) They took my right ovary out during this process. I went through 3 months of intense chemo. Everyday for 3 months except for Saturdays and Sundays. After the 3 months my cancer had went away. I would have never known I had cancer unless at the time I thought I was pregnant, I took a pregnancy test and it was positive so I went to the doctor to get a ultra sound and so on, during the ultra sound there was nothing there.. People were confused the doctor had no idea what was going on. My blood work was showing that I had the HCG hormone and it was rising every day to more and more. They were so confused. So this doctor decides to send me to a specialist, I went in for my check in and we did a mega crazy ultra sound and the doctor noticed my right ovary was the size of a tennis ball. She rushed me into surgery to remove my right ovary. During the surgery my ovary broke open after she did the freezing thing, so there for the cancer spread into my bloodstream. They did inform us of this but also at the same time said everything was fine now and to just keep checking back up.. So 3 months go by and I went and got blood work my HCG hormone was back.. I moved to Arizona during those 3 months and went to a new specialist there he wanted to take me in for a biopsy surgery, during this process they found another tumor in the back of my back somewhere and he removed it, I knew waking up from this surgery if they found something it would be chemo time. the second I opened my eyes and saw my mom sitting there the first thing I said was " Do I have to do chemo?" she looked at me and said "yes" I started to cry. All i seemed to care about was losing my hair, that all I was thinking about, I wasn't thinking about the fact that I had cancer I was thinking about losing my hair. So I started chemo a week later and went through that crazy time in my life and the worst time ever, It was miserable. Couldn't eat, throwing up all the time. Didn't leave my apartment unless I went to chemo. Finally on July 5th,2011 I finished my chemo did the blood work and everything was fine! I still have my left ovary and two years later to this day everything is perfect. I was the only young person in the chemo treatment rooms and people always asked why I was there and why It happened so young. I still don't know to this day why it happened all I know is that it just did and now its gone. Doctor says I will still be able to have a baby, thats my biggest concern. not being able to have a child would ruin everything for me. I also got married on August 28,2012 to an amazing man in the U.S. Army. We are currently trying to conceive. I know it will be hard with only one ovary but it is possible. I just wanted to share a little of my story to everyone. I currently live in San Antonio,TX.
Thanks for reading my intro.
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Post by Vampire Huntress D on Aug 26, 2013 3:04:12 GMT -6
I've been posting and forgot about this aspect of message boards. Chemobrain! Haha I'm in a fantasy football league (long story short, my friend needed x amount of people to be in his league and I got suckered into it) and my team name is Chemobrain. Anyway. My actual name isn't Nausicaa but I like it so it is my name for this board. I'm active on Tumblr (nice to 'see' some familiar 'faces'- lux...) and SarahCate found me so I'm here, too! I have insomnia like crazy. And I ramble.
ME: I'm stage IIIC ovarian cancer. I'm 28, but my birthday is next month. I was diagnosed last October. I had a terrific birthday...then cancer decided to wish me a belated birthday, and that sucked. I started getting sick last summer and kept putting off going to the doctor until after my birthday when I just couldn't ignore the symptoms anymore. Last October my oncologist went in and removed my left ovary (the tumor encompassing it was the size of a grapefruit) and took out about five (yes 5) liters of fluid from my abdomen. I didn't shrink to a normal size until recently. It took like six or seven months to lose all the fluid. Now every time I think I look pudgy I'm scared it's fluid buildup. I did six rounds of chemo and then a CT which revealed a spot on my colon. In April I went in for exploratory surgery and woke up without my right ovary. The spot on the CT? It was nothing. However, when my oncologist checked on my right ovary (in October she removed a tumor the size of a small orange off of the right ovary but left the right ovary in to preserve fertility) there were 'pinpoint tumors' on it. So after much hemming and hawing and consulting with my parents and other colleagues they decided to remove it.
My doc calls me her 'problem child' (affectionately) because apparently my 'tumor' (meaning my cancer) is very confusing to pathologists and confusing in general. It took like a month before I had an actual diagnosis. She sent my samples and blood work to her colleagues throughout the medical center and no one could agree on a stage, etc. For example, I feel good (all things considered, I don't act sick) and my scans are clean, but my CA125 is high (160). So it's not behaving normally.
I live in Houston, TX. I have a 7 year old black pomeranian named Mitzi, an amazing boyfriend (fate has a sense of humor- he has been in remission from childhood brain stem cancer for like 15 or 20 years), and I love to read and watch anime. Actually my screen name is a Homer and anime reference. Nausicaa and her maidens aided Odysseus after he escaped from Calypso (by giving him clothes, food and so forth) and Nausicaa is the name of the main character in an anime movie by the same name. I like to country dance (two step) but prefer to listen to hard rock. And as mentioned earlier- I have insomnia. And it sucks.
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Post by SarahCate on Aug 26, 2013 13:13:23 GMT -6
Welcome Amanda!! So glad to have you with us, and I hope you'll stick with us as we build this community step by step!!
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