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Hello <3

I'm a 33 year old otherwise healthy woman who recently received this shocking diagnosis.

I have had one surgery so far, removing my left ovary and a tumour sized 10x12x14cm! I started chemo on Dec-31 with the Carbo/Kaylex combo.

I've been told I need to get a full hysterectomy after 3 cycles of chemo, and then follow that with 3 more rounds of chemo.

Is there ever a case where chemo can treat the cancer, and you can decline this surgery? I would still like to have kids if at all possible.

I'm also wondering what people's experience with hormone replacement therapy is if you had a hysterectomy. How does one manage their health moving forward after this? 

I'm looking for information to see if this is remotely possible. I understand it might not be, and I feel very judged whenever I ask questions like this at the oncology office so I'm looking for compassionate answers only please.

Hello @carlimbo and welcome to the forum. I am very sorry to hear of your diagnosis. As for so many of us, it does come as a shock. Especially when we are for all accounts, healthy. I'm glad your surgery was successful and it sounds like you are in the midst of your chemo.

I am not in a position to provide any counsel regarding having chemo and then declining surgery. I do know there are many women on this site that had chemo prior to surgery, and then chemo post surgery. I'm not aware of anyone who has declined their surgery however that's not to say someone isn't out there. I too am HGS Stage 3. I was 58 when I was diagnosed so am clearly at a different life stage than you are.

Are there any Teal Sisters that can lend their voices here regarding the "decline surgery" questions as well as the question on hormone replacement therapy, I believe @MissERP who also recently joined the forum is exploring hormone replacement so perhaps she can be of help from a discussion purpose. While her diagnosis is different, you may find some common grounds of discussion in your journey's. You can always reach out to someone privately on this forum. Just "hover" your cursor over their name and you should get a pop up box to "Send Message".

One thing that has always been important is to advocate for yourself and to make sure you are getting all your questions answered. I'm sorry that you feel judged when you are asking about things that are important to you. You should feel free to keep asking and if you feel you are being judged, say so. Perhaps they aren't aware of the impact of their responses. Try to make them understand your concerns. Be clear with them if you don't feel you are being heard. As well, if you have some support around you, ask someone to come to an appointment with you (if you are comfortable with that). Sometimes the second eyes/ears/voice can be helpful when you are seeking information and/or for processing.

You may also want to consider signing up for the next "Teal Tea for Young People With Ovarian Cancer". It's on Jan 28th. You may find a group of Teal Sisters here who can relate to your situation and provide some counsel. The registration link is on the main page of OVdialogue however here is the link:

Ovarian Cancer Canada

As well, Ovarian Cancer Canada (OCC) has Peer Support in a 1:1 format. You would be connected with someone who has experienced ovarian cancer. Perhaps that too is an option. Here is a link:

https://ovariancanada.org/resources/peer-support-programs

Please continue to ask questions on this forum. I'm always hopeful that there is someone out there who we can each relate to. As well, please be assured that this forum is a NO JUDGEMENT zone. Our collective goal is to help each other as much as we can. 

#Introductions #Treatmentandsideeffects #Supportandencouragement

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Thank you so much for the information and support. I will join the upcoming tea and look forward to exploring the 1:1 peer connection option too.

Cheers

Hello!

I just wanted to stop by with encouragement and support! You should be able to discuss alternative treatments with your gynonc, there could be some possibilities to explore. I know that you can feel nervous or awkward asking questions; often we get shut down before we get through the question! But, it is your absolute right to advocate for yourself! Perhaps a 2nd opinion might help?

There are a lot of younger women in this community, I was 64 when diagnosed with HGSOC Stage 3B. I have been cancer free for over 3 years now, and I've always been an active participant on the 'medical team.' I've had excellent care and have been in good hands. I wish the same for you! You deserve nothing but the best care possible. Sometimes we have to be strong when we are at our weakest. Bring someone with you to the appointments. Write your questions down. Record the session if allowed. I'm in Alberta, my gynonc is at the Cross Cancer Institute, and I really feel that they keep the wishes of their patients at heart, and are willing to discuss the options. I will keep you in my thoughts and prayers.

@carlimbo,

hi,

sorry you had to be a part of the club.  As far as not having surgery and preserving your fertility I think that is something you need to discuss with your team.  They will be able to give you all the options available to you.  Gather all the  information to help make the right decisions for you.  Keep us updated on your journey, we will be here.🩵🙏🏻

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