My Cancer Story Told By Me Not Some Other Dude

Hi! My name is Dan, I am also known as PeeWeeToms, don’t ask why lol.

I have what’s known as a Sarcomatoid Carcinoma, or Carcinosarcoma. I believe it is a mixture of cancers all in one. Sucks to be me!

For all intensive purposes it is killing me, I have no control over this and neither do doctors at present as there seems to be no way to control it apart from surgery, but I have severe metastasis.

This is my story as told by me, this is the easiest way I could do it without getting upset, so please see the video below and enjoy, its a bit crazy!

I am seriously sick but try not to show it as much as I can, I also always put on a brave face.

Anyways, I am babbling. I have had numerous recurrences and also had surgery last week to remove a sizable sarcoma from my left side, I am also going to need further surgery in the coming weeks.

But, I want to find others with this, mainly to have a coffee and find out more from them. I am not fussed where in the world they are, I just want to find others. I am aware of only 16 cases of what I have. One died last September which was a blow to me learning.

I have already outlived the expectation of 4 – 8 months by almost 3 years now, I don’t intend to give up yet!

I was first diagnosed in 2015 with a Sarcomatoid Carcinoma and had reccurances in both 2016 and 2017 and I am stil battling the latest round of tumours.

About PeeWeeToms

So what's the story? Well in 2015 I was diagnosed with a Sarcomatoid Carcinoma. To say the least it was aweful, I have managed to get through three years now with it coming back with vengance 4 times. On the 29th December 2017 I found it had likely spread. This is my dialogue with myself.

View all posts by PeeWeeToms

2 Comments on “My Cancer Story Told By Me Not Some Other Dude”

  1. Hi,

    I feel you when you say you want to be in control. I am in New Zealand 64 year old woman and have a rare malignancy PEComa which is related to a genetic disorder i have called Tuberous Sclerosis. Despite the association of PEComa to TSC the medical profession look at it as separate. When I had a hysterectomy in 2015 I asked the histologists etc to check for PEComa as I had had a benign one in 2003 but they did not do it properly. In 2017 i gad a finger amputated for Pecoma and had the hysterectomy reviewed- widespread malignant PEComa. I have engaged a private oncologist or ‘ringmaster as I call her as I will not put myself in the hands of the hospital system when PEComa comes back. I have found a Facebook group of 40 people worldwide and suggest if there isn’t one currently for sarcomatoid carcinoma that you create one.

    PEComa apparently is classified as and is treated mainly at sarcoma centres.

    Ive subscribed and happy to communicate anytime.

    Elaine

Leave a Reply to James Cancel reply