Diagnosed with vulvic cancer

[gratefulcustomer]

Not sure really why I am posting. Found out on Friday and have zero answers right now. Scared to look and feeling fragile. DP back at work today and I’m feeling ….. well tearful and shaky. Thought I might post here for distractions as I am just staring into space

I am so sorry and sending you some hugs. Tearful and shaky sounds perfectly reasonable to me. ♥️

Virtual hug (((()))) coming your way.
I'm so sorry that you have had such bad news.

Thanks. I just can’t set my brain moving forwards. I want to phone or message DP but he needs to keen working and I don’t want to pull his focus even more. He is self employed so he can’t just take a week off sick to be with me plus what’s the point? There will undoubtedly be requirements of his time as we go on this journey. I am scared. So scared.

My head tells me I need to start doing those jobs I kept putting off but my body is just refusing to move. I’m sat on the sofa just frozen I guess.

I'm really sorry @gratefulcustomer. I think you should forget the chores and embrace the sofa, maybe with a blanket and a hot drink.

Sending you lots of love and hugs. I have been diagnosed with breast cancer. What a terrible feeling. No words xxxxx

I think this is the hardest time. You have answers but no answers and no plan. I hope they give you what you need very soon. Yo need to be kind to yourself. It's a huge shock, even if you thought it was cancer.

So sorry to hear this, I have lichens sclerosis so it's a worry of mine. Sending strength to you, and if you feel up to it can you tell us what your symptoms were perhaps? There's really not enough info out there about cancer of the vulva or conditions like LS x

I'm so sorry - give yourself some time to process the news and figure out next steps.

I'm so sorry to hear this. I'm having tests this week and I think, from what the consultant said, that the diagnosis is very likely to be cancer. It's very difficult to take on board. This time last week my life was normal, I'm just trying to take it one moment at a time.

If you feel able, phone MacMillan. They are incredibly helpful at this time in my experience and can be easier to talk to than people that know you!

I’m a little over a year after cancer diagnosis (finish treatment next month and am cancer free now).

Two things I’d suggest: (1) focus on the next steps - when is your next appointment? Have they booked you in for a CT and MRI scan yet? Do you have surgery to remove the lesion or did the do that when they biopsied? I’d focus on what you need to get in the diary. Ring around and prod anyone who is meant to be booking things for you. It will likely all happen quickly in the next couple of weeks, but I found it helpful to focus on practical things I could control. Focus on going and getting and preparing and eating healthy food. Get out and get some fresh air going for a walk. Little practical things.

(2) Do NOT google. Just don’t. I was absolutely scared shitless by googling because I have quite an aggressive cancer. The statistics you will find online are always going to be old. I was sure I was going to be dead in a year. I was trying to plan out how to write my kids a birthday card for every year until they were 80 and how long per child that might take. Don’t go there! The data you will find online will not reflect modern, say post-2020, treatment advances and there have been big ones for a lot of cancers. Google made me think I was dying. Actually, 85% of people with my cancer who have treatment are still cancer free after 5 years. Only 15% have the cancer come back and an even smaller % die. Most of these people are not healthy 45 year old women like me. My chances of dying are very small. I’m doing well and like I said cancer free now. Don’t give yourself ammunition to catastrophise. Just focus on taking care of yourself right now.

Sending hugs. I was diagnosed with metastatic leiomyosarcoma in September, 2023 and remember the feeling of utter terror of what lay ahead. I’m in remission now x

I think it is ok to sit on the sofa and have a cup of tea. Today might not be the day for kicking arse, so be it. Is there a friend or family member you could call for a chat?

Wow that’s some amazing advice from you all, especially mindutopia thank you. You are right. I have been writing in my head birthday cards for the children, funeral words and working out how to handle finances with ease if I die. I KNOW it is ridiculous at this stage but it’s just because I have no answers. CT scan should come through within 2 weeks. I phoned the oncology nurses today and left message asking them to call me back. I will be asking if I can go on any short notice lists as I just need to know what we are dealing with. I have done a tiny bit of googling but right now I am too scared as I don’t know what I am reading about compared to my own situation.

as for symptoms- well this is tough for me to explain because I carry a lot of guilt but here goes

I had a tear during vaginal labour 15 years ago. I declined stitches as I had a fast, drug free labour with blood loss whilst delivering placenta and I couldn’t bear the thought of them touching me. I regret that choice so much. It healed badly with a lot of scar tissue and raised areas and always caused a bit of annoyance. Over the years it has just been something I have. Recently it changed or I became annoyed enough I felt it should get it checked out. It has now become cancerous. My fear is that I don’t know if that happened years ago or months ago. It is the scans that will tell me how far and how bad it is.

Have they done a biopsy yet? I’m going through something similar. I had a 3rd degree tear. I also have endometriosis. I have a palpable mass a bit further in my lady canal 😎 and have had a lot of symptoms of pain, and pressure in the area. All treated as uti, then as pid etc etc.
I booked a private MRI that has shown a mass in the area which could be fibrosis/scar tissue/deep infiltrating endo, or it could be something malignant. I’m waiting on a more detailed look from a gynae oncologist radiologist. Should get the report back today.

Is your CT for staging?

I’m really sorry you’re going through it and you’re scared.

I was diagnosed with a gynaecological cancer "out of the blue". A long story that I won't bore you with but suffice into say the hospital was as surprised as I was. My youngest child was 9. I remember what it was like. I was just....frozen, I suppose. I held it together when they were at home, and fell apart when they were at school. It was around this time of year, and I after the initial shock I went into "organisation overdrive". All Christmas & birthday presents/cards for the following 6 months were bought/wrapped/written/stamped. All school term dates and events for that whole academic year were marked on a calendar. All the "household" things that I deal with (alarm/boiler maintenance etc ) were written down and booked in as necessary. As I say, complete organisation overdrive so that everything I could sort had been before I started treatment.That's just me though. I took comfort in knowing everything was as sorted out domestically as I could make it. Everyone is different.

What @mindutopia says is right. 1) Focus on the your next steps and 2) DO NOT, UNDER ANY CIRCUMSTANCES, GOOGLE. The Consultant told me that, and I didn't. I know my family did, but I had told them under no circumstances were they to tell me "their findings". I focused completely on the treatment plan laid out by the Consultant and just focused on whatever was coming next.

You are in shock at the moment , you need to allow your self time to process the situation you find yourself in. Be kind to yourself. I had blanket that my mother (long deceased) had given me years previously. I found comfort in sitting with that around me.

Sending you much love and support.

It's perfectly fine to sit frozen on the sofa, you've had a shocking diagnosis. ❤You must have have so many thoughts swirling in your mind today, I'd be doing the same as you.

I hope this is treatable and you enjoy a full recovery 💗💗💗

Another who has had cancer and wants to send you all good wishes. As a PP said, don't google. Just don't, it's not worth the worry. Instead, concentrate on the present and take each day, not to mention hospital appointment step by step. When I was diagnosed with my cancer, it was a complete shock, I hadn't expected it. But, it was good as I had doom googled, nor did I have a chance to catastrophise. Because next steps and one's treatment plan can change many times over, there just is no point worrying about things you can't control. Instead, I just focused on what was next.

And as another PP mentioned, call Macmillan. Do it now, or if your hospital has a drop in centre, go. They are amazing. Another lifeline will be your cancer nurse. Regrettably, cancer is a well-trodden path. They are people who will steer you through this.

You can do this OP!

Funny isn’t it? We are surrounded by cancer and people that have struggled but still find we know so little until it happens to us.

I really do thank those of you who have had experiences for coming forwards and offering me advice and just understanding how I feel today. It is this feeling of no control that has me nearly on my knees. You instantly want to improve all elements of health but even that is overwhelming. Take this supplement? Don’t take it? Boost your immune system but don’t because it might strengthen the cancer cells too?

I am off out with DD19 and DD15 for a walk on the beach shortly. Easier to hold it together when I am with them. I will come back to this thread later though as your words are helping me calm my mind.

Find a series to binge watch or something you can throw yourself into (as much as you can) take a sleeping tablet occasionally if you are getting sleep deprived and do what works for you.

I have known people who try and distract themselves with work, tv, cooking, cleaning or just hiding under a blanket but whatever you choose please talk to other people as well as your DP, whether in real life, therapy or a helpline. There are options and it’s good to be able to have multiple options