Cancer Survivor Shout-Out

[Scottdjones]

As a footnote, I also found that getting educated about helped me a lot. There is a wealth of information on line about Brian Tumour treatment. I am an engineer by background so had enough of a science education to readily understand what I found. I also attended the 10 day Gawler foundation residential retreat on living with cancer which I found tremendously useful in helping me detrmine the tratment I wanted to have.

[JJ42]

I agree - knowledge is key for me and I was disappointed when I wasn't warned that either having cancer and/or chemotherapy might lead to a DVT, which I developed towards the end of my treatment.  I was sick of feeling that every little ache and pain was cancer-related, so when I woke up with what felt like a dead leg one morning I ignored it. I dragged myself off to work and it wasn't until after lunch, when I noticed that I could only tackle the stairs to my office one by one, that I realised my leg was really swollen and so hot you could have fried an egg on it.  I rang my GP and he told me to go to Emergency immediately and he would phone ahead to let them know I was coming in. An ultrasound showed that I had a clot extending from my groin to my ankle. It took two weeks in hospital on a Heparin drip before they would let me go home again and ever since then I have questioned everything to do with my health. I make it my business to do my own research if I can't get answers that make sense to me. I realise that some people just want to do as they're told by their doctors but I prefer to know exactly what's happening and why and what unusual side-effects I might encounter. I feel much braver if I know what's what, rather than driving myself crazy by catasrophising about things. If the worst happens, I'm prepared for it and if it doesn't then that's a bonus.

[Scottdjones]

An amazing story as the same bloody thing happened to me!

I went in for a biopsy and was let out 4 days later. I asked the surgeon how long should I wait before flying and told to wait a week. I hopped on a plane from Melb to Sydney to go and get a second opinion from Charlie Teo. While in Sydney I developed a pain in my groin. I flew home the following day and the pain gradually worsened over the next week. Eventually, I was struggling to walk up the 3 stories of stairs into my unit, realised my leg was very swollen and turning blue. My mother drove me to casualty, they took one look at me and admitted me. Ultrasound confirmed a major clot in my leg from groin to ankle. 2 weeks in Hospital on Hyperon and Warfrin. I now have to wear a compression stocking below the knee as all the one-way valves in the main vein are buggered due to the remaining scar tissue.

Despite my advising of a family history of lower leg clots, I received no warning or advice when discharged from my biopsy op. Additionally, a nurse tried to give me the morphine meant for the guy in the next room, got me out of bed to have a shower the first morning despite the doctor saying that I must remain in bed, refusing to give me any food because the whiteboard had not been updated post op for 3 days... etc .. etc..

All in a private hospital! I work in mining and most of the safety incidents we have are human error related. It's no different in the hospital. I found the private system pretty disjointed in terms of patient care with some silly decisions made by the hospital physicians at times. 

My advice, always do your own research, write out questions before you see your specialist, If you want to do complimentary therapy, do tell your oncologist and if you are in hospital try and have a family member present to keep an eye on what's happening with medication as when in intense pain your brain does not work too well due to the Endone they give you. 

[CathV]

This is a great idea! Thanks Captain

My type of cancer: Mucoepidermoid carcinoma of the left sinus - it's a type of salivary gland cancer

My prognosis:  My ENT surgeon said when I asked 'ahh, 50%, 75% ...'  No stage given but it wasn't the aggressive type, more the slow growing type which I may have had for many years. Must be low grade. It's a rare cancer so there isn't a lot of information out there.

My survival time:  It's been 2 years since diagnosis and I am in remission. I have an MRI once a year. It was lucky that the cancer was picked up at all. I have a renal transplant and have regular blood tests. Blood tests in April 2017 showed  inflammatory markers.

My word of advice:  Do all those exercises! Seriously, listen to your sick self. If you don't want to do something or feel ill or stresses or you are having an awful day, tell people. It is also true that you change, but you change throughout life anyway. Do nice things for yourself - sit in the sun, read, play with your pet, spend time with loved ones. Of course there is a quest for information. I work as a medical librarian at a major metro hospital and knew of some resources. MacMillan Cancer Support has some great information https://www.macmillan.org.uk/information-and-support/treating/after-treatment 

[Ridgy]

Hi @Marjorie You and I share something in common in that Merkel  is a neuroendocrine tumour. I have Si NETs. Spookily two weeks ago a red shiny lump came up near my elbow. I thought it was from a mosquito or spider bite as it was itchy. It came up as a hard lump that took a week to flatten a little but now it is a smooth,  shiny lump. It looks like images of Merkel cell skin cancer. I’ve also had 2x basel cell lesions removed (eyelid/back). Who picked up your lesion? Did you get it checked straight away? Had a skin check just prior to this lump and next check isn’t until October. Big hugs.

[Marjorie]

Hi @Ridgy  My Plastic surgeon thought the Merkel was another Basal Cell lesion. It was flat, round and as big as a 10c piece.  It wasn't itchy and was brown/yellow in colour. I've previously had many basals removed from my face by this surgeon. Test results showed it was a Merkel. I let it go three months before I showed him. Hope this helps. All the best. 

[Moira]

Thank you so much for your post. I loved your advice to join a support group. I'm a breast cancer survivor of 23 years - still can't believe it. The Cancer had advanced into lymph nodes and I was in my mid-forties with three young children (aged 10, 8 and 5) it was a terrible time.  I still remember meeting a lady at the first support group I attended who told me she was a survivor of 15 years. It gave me such hope because when I was first diagnosed, I didn't think I had much time left - probably most of us feel that way. I think a support group can inspire us to have hope and provides wonderful friendships and information and offers the emotional support we need so much.

[Moira]

You are a great inspiration. Thank you.

[sharonlynne]

My type of cancer:  Breast Cancer Stage 2A (T1N1 ER+ her2-) 

My prognosis:  Tumour was 1.6cm. I was told from the outset that they were treating me for a cure, so prognosis was always good

My survival time:  Diagnosed November2015. Treatment of Chemo, Lumpectomy and lymph node removal, Radiotherapy and ongoing hormone treatment. 3.5 years survival time so far. Plan for many more years of survival.

My word of advice:  Trust your medical team. Ignore silly things that people say to you. Enjoy each day. Treat evey milestone as a reason for joy (eg finishing chemo, finishing radiotherapy etc). Make your life count.

[Sandra1]

Hello, Scott, I am interested who guides you through your alternative treatments , especially the D vitamins. I have an app with a naturopath that has a good reputation in cancer treatments tomorrow, I already follow a quite strict regime , but very interested to hear other people’s stories.