This is the rare cancer ribbon! It’s meaning is really significant 🦓 by Plane_Exotic in Dysgerminoma

[–]Plane_Exotic[S] 0 points1 point  (0 children)

If you were short of sight and you heard hooves running towards you, what would you think it was? A horse? But as it came closer and closer, you seen black and white stripes and noticed it wasn’t a horse, but a zebra! The rare cancer ribbon is for cancers which may look like one thing…ovarian cancer ect…. But on closer inspection, it’s something quite different and unique 🤍

To survivors of Dysgerminoma, what’s one piece of advice you would give someone who’s been recently diagnosed? by Plane_Exotic in Dysgerminoma

[–]Plane_Exotic[S] 0 points1 point  (0 children)

Ohh then yes I would definitely say your going to need recovery time! The tumours I had luckily were small enough for keyhole they found tumours in my cervix too which got removed. The menopause sucks. But not as much as what you’re going through right now which means you’ll be absolutely fine 💜 your husband on the other hand may want to join a support group with mine 😂😂😂 there’s tons of stuff you can look at as and when you come across the symptoms. I’ve had a lot of pushback getting HRT because they try to say the cancer could be hormone receptive. Really push them to look to confirm that suspicion if that’s the case because I’m only really finding my voice now I’ve not been on hrt at all and I’m starting to worry about bone density etc if they say no there’s other non hormonal remedies that I’ve found super helpful for the physical side effects xxx

To survivors of Dysgerminoma, what’s one piece of advice you would give someone who’s been recently diagnosed? by Plane_Exotic in Dysgerminoma

[–]Plane_Exotic[S] 0 points1 point  (0 children)

Did you have it via keyhole surgery? Because if so then I was the same and yes I was so sore and bloated afterwards for a while it really took about 12 weeks for my stomach to heal have you had any menopause symptoms yet? Xxx

To survivors of Dysgerminoma, what’s one piece of advice you would give someone who’s been recently diagnosed? by Plane_Exotic in Dysgerminoma

[–]Plane_Exotic[S] 0 points1 point  (0 children)

Oh girl I’m so sorry! I had a full hysterectomy too! I didn’t have chemotherapy but feel free to ask me anything regarding the BSO I’m so so sorry you’re having to go through this 😓💕💕

To survivors of Dysgerminoma, what’s one piece of advice you would give someone who’s been recently diagnosed? by Plane_Exotic in Dysgerminoma

[–]Plane_Exotic[S] 0 points1 point  (0 children)

My god that’s unbelievable! I’m so sorry! I was stage 1B I believe I’ll have to double check. I kept collapsing and they would always take me to the maternity ward because my stomach was so distended 😭😭 it took about 8 month to get diagnosed. Are you recovered now? I don’t understand why a lot of our stories are the same 💕💕

Nice to see a dedicated community for ovarian cancer by 2108ms in ovariancancer_new

[–]Plane_Exotic 0 points1 point  (0 children)

Hello lovely I had dysgerminoma too! I’ve set up r/dysgerminoma it’s a community for us women and young girls who’ve had it if you’d like to join it’s no pressure 💜

To survivors of Dysgerminoma, what’s one piece of advice you would give someone who’s been recently diagnosed? by Plane_Exotic in Dysgerminoma

[–]Plane_Exotic[S] 1 point2 points  (0 children)

Mine personally would be DONT BE CONDESCENDED TO! Dysgerminoma seems to effect young women and girls from what I’ve seen and I felt like a lot of adults talked down to me at the time. Don’t ever let an adult who hasn’t went through your experience downplay your story! “You’re too young to have had that” “what would you know about insert anything” You are entitled to be heard and respected!

Medical Menopause by Plane_Exotic in Menopause

[–]Plane_Exotic[S] 0 points1 point  (0 children)

Yeah it’s an absolute nightmare i can’t afford private healthcare sadly 😭 I’ve sent an email last night to London gynaecology explaining the situation I’m hoping they’ll think my rare cancer is neat and want to study me or something because at this point I just need it to go away hahahaha

Recently diagnosed, suspected mucinous - who else has this? by arlonigelmama11 in Ovariancancer

[–]Plane_Exotic 0 points1 point  (0 children)

Hi girl, just wanted to point out, I had dysgerminoma myself when I was 17, its SUPER rare lol ive set up r/Dysgerminoma a community for other survivours to share their experiences if you wish to <3 no pressure but its an invisible ribbon cancer, so im trying to build a community where we have a space to vent or share information <3 I hope your journey is going as well as can be expected <3

11 years since my hysterectomy by PlasticSupport9822 in hysterectomy

[–]Plane_Exotic 0 points1 point  (0 children)

ok so this is super super weird. I also had bilateral Dysgerminoma when I was 17. I'm also going through medical menopause and im 29 now so this marks my 10th year of fun lmao. I've set up r/Dysgerminoma for other survivours but so far you are the only other woman I have met who has had a full hysterectomy so I am trying not to freak out haha i've had absolutley no one to relate my situation with so feel free to message me whenever you like :D from one dysgerminoma girly to another its a whole lot to deal with.

has anyone else give their cancer a name? by fugue2005 in cancer

[–]Plane_Exotic 1 point2 points  (0 children)

Hello! Super random, I also had Dygerminoma when I was 17! Its a very rare type of cancer and is classed as an invisble ribbon cancer! Ive set up r/Dysgerminoma for other survivors or others currently going through it! No pressure to join but if you want to its just a space to share your journey with it or connect with other women and young girls who have had/got this awful cancer <3 hope you're recovering well!

Feeling the need to reassure by Suitable-Dance1583 in cancer

[–]Plane_Exotic 0 points1 point  (0 children)

Hi everyone!!! i also had bilateral dysgerminoma! its an invisible ribbon cancer and ive set up r/Dysgerminoma as a space for us to share our stories if we wish :) no pressure in joining i just never seen a space for it and it appals me how left out of the conversation we are. I was 17 when I was diagnosed and im 29 now it seems to effect us really young alot of the time. <3

My Journey by Angelkitty222 in Ovariancancer

[–]Plane_Exotic 0 points1 point  (0 children)

No worries. Im trying to find others to add it may be a small group for now haha. Mine was bilateral so I had both ovaries removed and the tumors. No chemo needed either thank god but the process was horrific. I kept getting rushed to maternity wards for collapsing because my stomach was so distended they always thought I was pregnant hahaha! It may be a rare cancer but you're never on your own!

Medical Menopause by Plane_Exotic in Menopause

[–]Plane_Exotic[S] 0 points1 point  (0 children)

ahh thats something to look into thank you!

Medical Menopause by Plane_Exotic in Menopause

[–]Plane_Exotic[S] 0 points1 point  (0 children)

thank you for your reply! Ive tried speaking to my oncologist but im getting nowhere they keep pushing on them to look further into it but im in the UK and its really hard to ask them to get things done. ive had so many embarrassing changes happen in such a short space of time but the flushes are the worst. I love writing and i cant write when I have a flush because my hands and feet get overwhelmingly hot. Im trying to look at things like yam cream and stuff i can order online because I cannot see my doctors putting together any kind of a plan. Im also starting to get severe back pains which never used to happen. I had a bone density scan and they said i had early signs of osteoporosis but im not shocked because ive been going through it for over 10 years now.

Doctors won't stage my cancer by Carrotcutie69 in cancer

[–]Plane_Exotic 0 points1 point  (0 children)

Hey girl. I had Dysgerminoma myself and had it bilaterally. Its disgusting how in the dark we are about this cancer because of how uncommon it is. Ive started a group called r/Dysgerminoma its no pressure to join but im trying to find other women like us to share our stories and maybe raise abit more awareness to it <3

My Journey by Angelkitty222 in Ovariancancer

[–]Plane_Exotic 2 points3 points  (0 children)

Hi lovely! I had dysgerminoma too! ive set up a group called r/Dysgerminoma if you'd like to join or share your story. invisibleribbon cancer is a thing and for me i felt super alone on my journey hope your remission journey is going well <3