Introducing myself - stage 3 endometrial cancer aged 36

[Vonchies]

Hi everyone, I turned 37 today. I was diagnosed with stage 3CII clear cell endometrial cancer in June 2018. I had a hysterectomy at 36, went through IVF prior and am about to take on cycle 9 of a trial immunotherapy called Durvalumab/Phaedra at Peter Mac. I am responding well to treatment thus far. Despite the good response to treatment and gratefulness that I am here today (bless my amazong medical team and support base), I am still struggling with the social side and mental health side of cancer. I hope to hear and ask more questions on similar experiences. Not all experiences are the same, but only a person with or had cancer knows what you are going through.

My concern lately is I've found that I have lost friends but also gained many friends. It's like a rollercoaster of emotions and you really find out who your true family and friends are. I have really supportive family members and friends, but also the shittiest. They will be there when you are diagnosed but once you are responding well, they wouldn't batt an eye. I find come people visit or get in touch only once just to check out "the freak show." I've never asked for sympathy but merely understanding and help when I need. I find that because you don't "look sick" they treat you with less understanding and think you can do all things. That frustrates me. Physical supercedes and internal.  They think you're being lazy taking time off or maybe making a big deal of things. I am lucky to survive so far with the stage I have. I'm doing well and my advanced cancer is shrinking. But I still have fear that I will stop responding. I have a less than 50/50 survival rate. I sometimes feel anxious when I feel a weird sensation in my body or if I get a cold or virus. I have panics to myself and cry. I feel guilty sometimes for feeling like this. I should feel lucky and appreciative but sometimes I feel low. Anyway would love to hear other people's view point and take on this and their experience. I'm finding it hard to find young people with endomerial so if you're out there,  feel free to say hi as well. x

[brookelynne]

Hi, It's nice to meet you! I don't have endometrial cancer but I do consider myself young (20) and I have rhabdomyosarcoma. I find that social life is extremely difficult to navigate with cancer-I see people I deeply care about on social media continuing to go on with their normal lives and it's hard not to feel bitter because it's like they don't even notice I'm gone. Other friends and family are really supportive, but treat me as if I'm breakable or that I can't do anything on my own. That really frustrates me.

The fear of not making it is truly the most awful thing though. At the beginning of my diagnosis and treatment, I don't remember much because I was in so much pain and on so many medications, but I believe they said I had less than a 20% survival rate. Today, I have positive results and my oncologist seems confident, but I'm still terrified of getting a bad scan, or my chemo not working. I cry a lot, too. It is so scary just to...not know.

[Vonchies]

Hi Brooke,

It’s lovely to meet you. I’m sorry about your diagnosis but so good that you’re doing well. It’s hard navigating the social side of things with cancer. I’ve had a couple of friends drop off but also those that were persistently contacting me when I first got diagnosed, wanting to know what’s going on, but then slowly drop off when they know “you’re doing well,” you really  find out who you’re real friends are that’s for sure!  Also some people just don’t know how to deal with us. Cancer is not a journey from diagnosis to cure. It’s life long and we need support.

how are you going with treatment? How’s your prognosis now? What kind of cancer is it?

i allow myself to cry. It’s healthy and we just need to let it out.  Give yourself kindness. X

[CaptainAustrali]

In my opinion, when cancer comes into the scene, a real friend is going to clumsily ask something like, "What do you need from me ?"

And your answers are going to matter.

Calling every week or not calling at all, these are what THOSE INDIVIDUALS do in reaction to the disease.  It may indicate their clumsiness, calousness, or maybe their own inability to cope.  And yeah, some friends/family may not have the emotional currency to stop and ask "what do you need from me?"

But yeah, in my opinion, if you're not asked, then it's on you to tell.

I have a really toxic mother, it's a horror story, but parking that - when I was in active treatment, she would ask all kinds of intrusive questions about my health, outlook, finances (being a junkie, I think she was particularly interested in the last one).

What I needed ?  None of her toxicity interfering with my morale and focus.

So I told her, "I don't want to discuss my situation, it interferes with my morale and focus, please respect my preference to be left alone for a while"

That may seem cruel, but it's *ME* fighting to survive, not her.  And it's measurably kinder than "my preference it to sever all ties with you"

Anyway, the point is, I guess, that it should be *you* in the driving seat of these relationships, as you can't rely on the people who love and care for you to behave rationally or within your expectations.  It would be nice if every true heart just asked "what do I do?" and respect your answer (and you can articulate stuff like frequency of contact, etc etc etc, heh).

But it's infinitely more complex than that, as such the best thing for a cancer sufferer, in my opinion, is to take a frank and transparent approach with significant people.    (Excluding spouses & children, they need a management plan).

Any other significant adult in your life should get straight forward information like:
- I'm in a fight for survival with a potentially fatal disease
- I do/don't need your help
- I do/don't need distractions

- It would be great if you did/didn't contact me regularly/irregularly

- I'd prefer to/not to discuss the specifics of my disease

- I care about you, and I hope you understand that I have to prioritise my needs, I thought declaring them as clearly as I could would be the best and clearest way for us to deal with this

I'm sorry if you try something like that and it turns out to be shit advice, but in my personal opinion, the quality people will sticky by you no matter what, even if you majorly stuff up the social stuff. 

But I wouldn't inject time/energy/paranoia/worry into withering/changing friendships or weird new vibes you get from people, and if anything, having a transparent dialogue might help mitigate that stuff, or at least give a platform to better understand it.

[looker_labs]

Here you go my friend and feel free to check out my other posts.

as any other project, the more work you put into a project

the more likely the level of success.

the good news is stage 3 is not stage 4

my ex had non-hodgekins lymphoma with nodules in the liver - stage 4

she is still around after being cancer free for over half her life.

walk hard

she had one 'zipper' for the liver and radiation and chemo

are you involved with an oncology center?

I think that these tumors are 'leftovers' from a late in interval

PAP.  Sounds like some escaped the capsule.  Tumor size is important,

but much like a scraping needs to be done those leftovers either

need to turnover to a cirrhosis (scab) like with radiation or your

T-cell B-cell WBC need to do the scrubbing.

Endometriosis is very survivable.  At worse I'd say, with a good surgeon

2'nd try's the charm.   Expect to feel better before the end of the year.