Stage 4 Ovarian Cancer - Surgery or More Chemo/Treatment?

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Hello,

My name is Holly-Jayne, I'll be turning 26 years old on Friday and back in March of this year I was very sadly diagnosed with a very rare and agressive form of Advanced Stage 4 Serous Carcinoma Ovarian Cancer which started in my left ovary and has now also spread to the other (right) ovary, my stomach (there's like little pockets all over my stomach), the Peritoneum (which is like a big sheet of tissues that lies over everything in the tummy area like the bladder, bowel, liver, spleen, diaphragm etc and the Cancer travels in the area via the sheet and attaches to the nodules that are in the organs) and I also have some Cancer in my bowels and around my chest area, plus a small line of fluid in my lungs and a blood clot on my left lung, so a very devastating diagnosis overall, especially at my very young age......

I've had 3 rounds of Chemo so far and will have my 4th this week on Thursday (right before my Birthday on Friday Upside downBroken heart

But I had a meeting with our consultant last week where I found out that my Cancer is pretty much incurable which means that I will be dealing with this for the rest of my life so it will be like a Chronic illness and will be managed through regular monitoring and treatments and stuff!

So I'm technically terminal although I prefer to say Chronic as I definitely don't plan on leaving the world anytime soon!

But anyway, we had a meeting/discussion with the surgical team yesterday about possibly having major surgery which will be a full Hysterectomy/debulking procedure where I'll have to have my ovaries, womb, tubes, tissues that connect the areas and also my bowels and stuff removed......

But I literally have to make a decision by Monday on whether I want to get the surgery or to just keep having more Chemo and other medications and stuff!

They don't really know what the benefits or downsides of each one are or what would benefit me more etc though as like there's just no definite answers at all which really doesn't help anything!

The type of Cancer I've got is extremely rare and unique though and especially in someone my age like even the surgeon/consultant said that I'm the youngest patient she's ever seen and treated in all her over 40 years of work in the medical field, so they don't really have any data or stats to look back on either as I'm unfortunately pretty much the first and I'm an extremely rare and unique case at that Sweat smileSee no evil

If I do have the surgery though then I'll most definitely end up needing a stoma bag for the rest of my life (so it'll be permanent)

But yeah they apparently don't know much and won't know much until they actually open me up and look inside me and stuff and that's if I do decide to go ahead with the surgery!

But I just don't know because nobody knows which option will benefit me more or what will happen in the long run and how long my life will be with either option etc like everything is all just up in the air and completely unknown and confusing at the moment and we've barely been given any information, plus I can't even find any stories/experiences or anything from other people online because my case is just so rare and unique so there's literally nothing to compare it with and no way of knowing how each option could benefit me or not which is honestly really scary......

But either way I need to somehow make a final decision by Monday which is hardly any time at all and I already feel so stressedddddd and I just really hate this whole entire situation!! WearyBroken heart

So yeah I was just wondering if anyone else here has gone through the same thing or at least been in a similar situation and could maybe help me and let me know what your experiences have been with either option and/or which option has benefited you more etc and if you've been through the surgery, what is life like for you now afterwards??

Are you happy with the decision you made or do you regret it??

Literally any kind of help/support/advice etc would be extremely appreciated as I genuinely feel soooo so alone with everything rn SobBroken heart 

I also have Autism, Dyspraxia, ADHD, OCD, Severe Anxiety etc btw which honestly just makes things worse for me as I'm already extremely sensitive to everything, but my mind is just absolutely everywhere at the moment and I feel so stressed and overwhelmed with all sorts of emotions and literally everything that's going on at the moment is just too much like I'm only 26!!

I still haven't even figured out who I am yet like I was still in the process of figuring out my sense of self and my life in general is only just beginning and there's still soooo so many things that I wanna do and try and I had so many plans that I was just about to start putting in place, but now I can't do anything anymore because of stupid Cancer!!

Everything has just been completely ripped away from me at such an early and sensitive age and as horrible as it sounds, I really hate having to see everyone else around my age all just living their lives as normal and achieving things etc while I'm just getting left behind and it's just soooo so frustrating and upsetting like it just doesn't feel fair at all!!

hate pretty much everything at the moment and I'm always soooo so angry and ready to explode at any minute like I just constantly crying and lashing out at everyone I love and then feel extremely guilt I'm quite literally a ticking time bomb now......

I've seriously never felt so alone and depressed in my life and I hate myself more than ever for completely wasting my teen years and for just failing and giving up on everything I ever tried including my biggest passions all because I never though I was good enough for anything and I still think that now because literally the only thing I seem to be good at is giving up!!

I just feel so done with everything like I'm just soooo so tired and fed up and I really wish I could just surrender and give up!!I know I can't do that though coz I don't wanna die or leave my family behind and like I said, I've barely even had the chance to live yet!!

I can't help but think of all of the mistakes I've made in my life and wonder if this is just my punishment, like I just had to have done something wrong/bad if I'm being made to go through something as awful as this like does this mean that I'm a bad person!? SobBroken heart

But yeah I just don't know what to do with myself or this whole situation anymore like all I can do now is hurt myself and the people around me apparently!

I try soooo so hard to remain as strong and as brave as possible, but the truth is, mentally/emotionally, I am NOT okay, not even in the slightest!!

I feel like an empty shell of a person and I'm just completely and utterly 1000% broken PensiveBroken heart 

  • Hi Holly-Jayne/ and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    It sounds like you've got a very big decision to make so I can perfectly understand why you'd want to talk to others who have maybe had to make the same decision.

    As the online community is divided into different support forums I'm going to recommend that you join the ovarian cancer forum which is a great place to ask your questions and share experiences with others who have a similar diagnosis to you.

    To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"