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Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

24 Jan 2018 11:51

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.

I am looking to find out if there is anyone else with this, or anyone else with anything close. I write a blog PeeWeeToms.com and A Vlog on YouTube. But I am trying to get exposure for it!

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!

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

25 Jan 2018 01:31 in response to PeeWeeToms

 

Hi Dan,

A very warm welcome to Cancer Chat.

I am so sorry to hear about your diagnosis, but am glad to learn that you are beating the odds so far and are doing your best to cope with this in a positive way. I do not know much about this type of cancer, but can I suggest that you use the search engine on the blue banner at the top of this page to contact with previous post? Surprisingly, for such a nasty cancer there are quite a few posts about it.

I hope that you find this helpful and that you continue to win the fight and outlive the doctors’ expectations for longer still.

Please keep in touch and let us know how you get on. We are always here for you whenever you feel like talking.

Kind regards,

Jolamine

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

25 Jan 2018 09:58 in response to PeeWeeToms

Hi Dan, 

I've had a quick look around the forum and found a few members that have or care for someone that has your diagnosis that you may like to get in touch with - @lin2017 ‍, @caz77 ‍ and @SallyD ‍. I'm not sure if you will get a response from them straight away as they haven't been on the forum in a while but hopefully by mentioning them in this post they will pop in to say hello and chat about their experiences with you.

Also, thank you for sharing your blog and vlog with us Dan. I, and I'm sure many others, will be looking forward to your next updates.

Kind regards, 

Steph, Cancer Chat Moderator

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

25 Jan 2018 11:08 in response to Moderator Steph

Hi Steph,

Thanks for that, I am a bit of an oddball now days and become a bit of a warrior trying to find a solution.

I have practically given up my job and other things to try and find answers to this, I am also going to check out other countries approach to things to see how it differs.

I know that most with this diagnosis don't live long so I am one of very few luckyones, but I am inspired by others and really want to see a bit of change in  this as rare cancers have so little reasearch or knowledge.

But, thanks you so much for helping.

I did just post a video asking for help to find people and to find others with rare cancers as I would like to document how others cope, how they go through life knowing they can't do much to change it.

Regards,

Dan

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

25 Jan 2018 11:10 in response to Moderator Steph

PS I Just checked and one is my mother. Bless her she has been a champion during this.

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

25 Jan 2018 11:18 in response to PeeWeeToms

Here's to amazing caring  mom's.... ❤ 

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

25 Jan 2018 11:38 in response to Chriss

I wish I could like that like on facebook.

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

3 Mar 2018 22:59 in response to PeeWeeToms

Hi Dan, 

Thank you for your Vlog - you really are an inspiration!

Warm snuggly hugs to yourself, your lovely Mum and Dad and Claire.

Xx

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

4 Mar 2018 00:27 in response to PeeWeeToms

Hi ya ... just been looking at your blog page  an seen your lovely mum an dad ... and how proud of you they are and you them .. l know you've had a set back but hang on in there peewee.. we may not beat this cruel cancer, but we can kick it's ass every step of the way .. and my last thought will be sticking two fingers up to it ... but hope wer both here to kick its ass a bit longer .. I'm a lot older then you .. so I'm hoping you get that mirical you never give up on ... Chrissie ❤

Hi, I'm Dan :) I Have A Sarcomatoid Carcinoma :(

6 Mar 2018 02:20 in response to PeeWeeToms

 

Hi Dan,

Good to hear from you again.

I have looked at your blog and am sorry to see that you have been scared again by the possibility of a brain tumour. I am delighted to discover that, following further tests, this is not the case. Your relief was almost tangible, as was mine for you.  It is so good to see you with your Mum and Dad and Claire. It certainly seems as if you have a good team behind you. I am fortunate in that way too and this has helped to make me determined to beat this cancer for as long as possible.

I have a rare form of breast cancer called mucinous or coloid cancer.  This only affects 1% of cancer patients and is not supposed to be a very aggressive form. Because of this, I feel that little attention is paid to the research of this type of cancer and it is bundled in with other forms of cancer, which is not always the best way forward.

 Despite the less aggressive nature of this, I had a second bout within a year. That was 7 and 8 years ago and I am currently being investigated for skin cancer. I know just how difficult I found it to get any information on my type of cancer, so understand how you feel. I eventually found a lady in America, who was able to tell me much more about it than any specialist in the UK could and ended up being persona non grata with my surgeon as a result.

Like you, I had to change surgeons to find someone who knew about mucinous cancer and had some horrific experiences along the way. Your cancer journey so far sounds harrowing, yet inspirational in the way that you have dealt with it. I hope that you can overcome the pain and other more recent challenges that you have been set and continue to inspire others with your blog and vlog.

Keep smiling,

Regards,

Jolamine