topic Re: Just diagnosed with appendix cancer in I've just been diagnosed

Just diagnosed with appendix cancer

cashfive — Sat, 03 Oct 2020 17:47:52 GMT

I was just diagnosed with appendix cancer after a bout with appendicitis last week. I had scans and now see the doctor on Monday to find out my next step. Has anyone had any experience with appendix cancer? I am terrified of what is next.

Re: Just diagnosed with appendix cancer

sch — Mon, 05 Oct 2020 01:10:33 GMT

Hi cashfive,

I'm sorry to hear that you've been diagnosed with cancer.

I'm sure there is someone around here who has had cancer of the appendix before.

Try not to stress too much until you know more. It could be needless.

If I'm not mistaken, I believe you've seen your doctor today.

How did you go?

-s

Re: Just diagnosed with appendix cancer

Kathrynb — Wed, 10 Feb 2021 21:17:42 GMT

Hello,

A few weeks ago, I was also diagnosed with appendix cancer after having an appendicectomy due to appendicitis.

I’d love to know how you are doing and what your treatment plan was.

Wishing you all the best.

Re: Just diagnosed with appendix cancer

Melanie90 — Sat, 03 Apr 2021 13:31:03 GMT

I’m waiting for a official diagnosis for appendix cancer, went in for diagnostic / staging surgery Tuesday just gone I am absolutely freaking out about it! I’m here to chat anytime you need

Re: Just diagnosed with appendix cancer

Melanie90 — Sat, 03 Apr 2021 13:34:24 GMT

I’m currently waiting for official diagnosis for appendix cancer, I had diagnostic / staging surgery on Tuesday just gone, my oncologist is 99% sure it’s cancer of the appendix as I have excessive mucin throughout my abdomen which is becoming very uncomfortable, I am just blown away as I cancer never ever crossed my mind. Would love to hear back from you if your up for a chat

Re: Just diagnosed with appendix cancer

Kathrynb — Sat, 03 Apr 2021 21:21:16 GMT

Hi Melanie,

I’m so sorry to hear about your diagnosis.

I’m two and a half weeks out from my surgery to remove the cancer. I had a number of organs removed and HIPEC, which is a heated chemotherapy poured into the abdomen. Being young, I’m thankfully recovering quite well and only spent two weeks in hospital. When I was first diagnosed I joined some Appendix cancer groups on Facebook, which provided a great opportunity to connect with people in the same situation and learn everything there is to know about this cancer.

The groups I find really helpful are:

- PMP Appendix Cancer Support Group (worldwide)

- Australia & New Zealand PMP cancer patients

I’m happy to try and answer any of your questions. Sending you lots of love and luck.

Kat

Re: Just diagnosed with appendix cancer

Melanie90 — Sat, 03 Apr 2021 21:50:01 GMT

Hi Kat

thanks for writing back to me, I’m so glad to hear you are recovering well (sorry you had to go through it in the first place) my oncologist said that surgery might be a option for me if my biopsy results come back as pmp, I looked it up online the surgery sounds terrifying! And so painful, I don’t handle pain well 😬 lol I do have a few questions if you don’t mind answering them, Do you have to have more chemotherapy after your surgery? What stage were you? What hospital did you have your surgery? If I’m going down that road I will be having the surgery at RPA in Sydney. How old are you? I’m 31 sorry for all the questions

Re: Just diagnosed with appendix cancer

Kathrynb — Sat, 03 Apr 2021 22:14:09 GMT

Believe it or not, I haven’t experienced much pain from the surgery, just a lot of discomfort. You’ll be on very strong pain killers whilst in hospital, and they won’t take you off them until you are ready. My doctors have given me Panadol to take after leaving hospital, but I haven’t had any. My biggest struggle now is just coping with a weird tightness in my stomach (I imagine this will improve over time), sleeping on my back and dealing with menopause because of the removal of both ovaries.

I’m the same age as you - 31. I’ve been told that I’ll have 3-6 months of chemo, starting soon. My cancer was stage 4. I travelled from Melbourne to Sydney to have surgery with Professor David Morris at St George Hospital. He’s one of the best in the world when it comes to appendix cancer.

I’d love to stay in touch and be kept updated on your journey. Feel free to keep asking questions because I’m so happy to help!

Re: Just diagnosed with appendix cancer

Melanie90 — Sat, 03 Apr 2021 22:47:22 GMT

Wow that’s great that you haven’t had much pain, I hope I recover as well as you. Are you still in Sydney or were you able to go back home to Melbourne? Are you able to receive the rest of your treatment in Melbourne? I would love to stay in touch, I’m happy for you to add me on fb if you’d like if there is a way I can pm you my full name, it’s been nice chatting with you I hope you have a great Easter 🐣

Re: Just diagnosed with appendix cancer

Melanie90 — Sun, 04 Apr 2021 07:37:25 GMT

Did you have any cost to you seeing Dr Morris?

Re: Just diagnosed with appendix cancer

Kathrynb — Sun, 04 Apr 2021 08:45:48 GMT

I’m still in Sydney as we were told to stay for a few weeks after surgery, as a lot of complications can arise from this surgery and we wanted to make sure we were close by if they did. Once back in Melb, I’ll begin chemotherapy and will have my scans and blood tests reviewed by Professor Morris. The only costs associated with seeing him are the consultation costs (I think about $100) but the surgery was covered by Medicare. We were so well taken care of by him and his team - they are amazing.

If you join those Facebook groups and search my first name you should be able to find me and add me on Facebook 🙂

Re: Just diagnosed with appendix cancer

Melanie90 — Tue, 06 Apr 2021 21:50:28 GMT

Hi Kat

Re: Just diagnosed with appendix cancer

KaceJax — Fri, 16 Apr 2021 23:19:04 GMT

Hope you are doing good. How did your family take it? Be strong and believe that everything will be okay.

Re: Just diagnosed with appendix cancer

3rdtimelucky — Sun, 14 May 2023 02:14:48 GMT

Hi, how are you now? What was your treatment like?

I was diagnosed last week with appendix cancer. I’m waiting to have my appendix removed in another 2 weeks. Everyone says “you’ll be fine!” But that doesn’t help, when all you want is a big hug and some understanding .

Re: Just diagnosed with appendix cancer

Kathrynb — Sun, 14 May 2023 22:11:15 GMT

I’m so sorry to hear about your recent diagnosis. I know what a scary time it is, but there’s so much support out there. I highly recommend joining the following Facebook groups where you can read stories of fellow appendix cancer patients and ask questions to help you understand the journey ahead:

- PMP Appendix Cancer Support Group (worldwide)

- Australia & New Zealand PMP cancer patients

I’m doing ok. I’ve had 2 major surgeries and it’s looking like I may have another in the near future. Treatment for this cancer can be difficult but of course is dependent on each patients case.

Re: Just diagnosed with appendix cancer

CaptainAustrali — Mon, 15 May 2023 01:19:04 GMT

I dont have experience with your exact class of cancer, but I can speak to managing the terror.

In the immediate short-term you need to compartmentalise.

(My advice anyhow)

Don't let the mortality stuff, the I'm scared stuff, get too much bandwidth, you can't control what you can't control and the absolute key now is getting through the process.

You have to surrender to that, lean into whatever aggressive treatment is available, and roll your dice.

To manage your daily living, compliance with your treatments, medicine, whatnot - the better you are at doing that 'knuckle down and get through' thing, the better. You need to get further down the road. You can deal with the existential stuff later.

That to be said - don't ignore it. If they say there's only a 30% chance of treatment, then you spend time with the people you love, you write up a will, do all the practical stuff you need to do ... but the UNKNOWN is the worst part of the early phase of dealing with cancer, and my advice is to tackle that head on, and the way to do that is accept it .. you dont know, can't know and just have to push through until you do.

As to wider stuff ..

I had a six months to live 40% chance at treatment, and that was six years ago. After cancer, I slipped into an existential hole, then I dressed up as the boofhead superhero Captain Australia and walked from Brisbane to Melbourne, raising $165,000 for paediatric cancer research.

It's not over. You still have some time up your sleeve, and maybe more than you think.

You can still do beautiful things, celebrate kindness, make laughter. You just have to get through the tunnel.

Re: Just diagnosed with appendix cancer

maree52 — Mon, 07 Apr 2025 05:07:05 GMT

I've just been diagnosed with appendix cancer - adenocarcinoma, well-differentiated - after having my appendix removed for complicated appendicitis. The margin was positive, but all my tests indicate that there is no evidence of spread beyond the appendix. The appendix didn't rupture and there was a phlegmon (inflammatory mass) enclosing it. I had some vague stomach pain after the appendectomy, but after having a colonoscopy, the pain has gone & I feel good again. My general surgeon referred me to a specialist at Peter Mac in Melbourne, who initially recommended either a right hemi-colectomy or CRS/HIPEC (a big, very invasive surgery with heated chemo). He wanted to confer with other specialists and discuss with me again after that. So, I'm now waiting for my 2nd appointment with him to find out more. I'm not looking forward to any further surgery and/or chemo, especially as I don't have any symptoms.

Re: Just diagnosed with appendix cancer

joseph_CCNSW — Mon, 07 Apr 2025 05:09:30 GMT

Hello maree52 and thank you for joining and posting here. This forum is a wonderful space and hopefully you will find care and support from others who share their experience. You may also find it helpful to search Cancer Council NSW's website or to call Cancer Council's 13 11 20 line for information about the range of services available to support you. Kind regards ... Joseph_CCNSW