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By:
administrator
Postings:
82
From:
n/a
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Posted:
Fri Apr 07, 2006 - 12:03 PM
We know of several people who would like to find someone else with the same cancer so that they can talk and share experiences. Here are the diagnoses of some of these people:
Granuloma cell tumour of ovary
Merkel cell carcinoma
Malignant melanoma stage 3
Fibroid myxosarcoma
Cancer of the vulva
Pseudomyxoma peritonei
Myxopapillary ependymoma
Anal cancer
Synovial cancer of the kidney
Basal cell carcinoma with facial disfigurement
Haemangiopericytoma
Liver cancer
Mixed Mullerian cancer (carcinosarcoma)
Liver carcinoid
Cancer of the orbit of the eye
Angiomyxoma
Cancer of the penis
Familial Adenomatous Polyposis (FAP)
Inflammatory breast cancer
Cancer of unknown primary ? breast ?ovary
Retroperitoneal soft tissue sarcoma
Large granular lymphocyte (LGL) leukaemia
Cancer of thymus
Leiomyosarcoma of small bowel
Adrenal cortical cancer
Chronic Eosinophilic Leukaemia
Myelofibrosis
Parathyromatosis
Squamous cell carcinoma of the ear
Waldenstrom's macroglobulinaemia (WM)
Paraneoplastic Cerebellar Degeneration
Acinic cell carcinoma
Hepatocellular carcinoma (HCC)(Primary liver cancer)
Phaeochromocytoma (dopamine-producing)
Goblet cell carcinoid
Fibrosarcoma
Polycythaemia
Histiocytosis
Rhabdomyosarcoma (adult)
If you have the same diagnosis as any of these people and would like to make contact, please email: contact@rarercancers.org.uk
We've also heard from a patient who has phaeochromocytoma (US spelling is pheochromocytoma). This is a rare tumour of the adrenal gland. In a small percentage of people the tumour is malignant. The person we've heard from would very much welcome the opportunity to make contact with someone else who has phaeochromocytoma. If you have this diagnosis and would like to get in touch, please contact Stella (contact details above).
Administrator |
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By:
laura
Postings:
7
From:
UK
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Posted:
Fri Jun 30, 2006 - 08:01 PM
I had a Yolk Sac tumour and ovary removed last November and have successfully completed 6 cycles of chemotherapy. I would be happy to talk to anyone who has had the same or similar.
Laura
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By:
Julie
Postings:
3
From:
UK
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Posted:
Mon Jul 10, 2006 - 09:54 AM
I had a Mixed Mullerian (carcinosarcoma) tumour and would like to hear from anybody else who's had the same type.
Julie
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By:
luckyangel
Postings:
8
From:
n/a
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Posted:
Thu Jul 13, 2006 - 09:31 PM
I had a Ependymoma in the lumbar area of my spinal cord in November 2001. I would like to hear from anyone who has had an ependymoma in the same area, a relative/friend of someone you know that has or had this tumour.
Luckyangel
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By:
administrator
Postings:
82
From:
n/a
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Posted:
Wed Aug 16, 2006 - 09:53 AM
Hi Paul,
We know of someone with the same condition who is happy to make contact with you. I'll email you to set things up.
Best wishes,
Administrator |
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By:
suesav
Postings:
1
From:
Bristol
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Posted:
Mon Aug 28, 2006 - 03:23 PM
I have Primary Peritoneal cancer and would be very keen to hear from anyone with this condition.
Susan Savill |
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By:
administrator
Postings:
82
From:
n/a
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Posted:
Wed Aug 30, 2006 - 03:44 PM
Hi Susan,
We know of someone with the same condition who is willing to be contacted by you. I'll email you with the contact info.
Best wishes,
Administrator |
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By:
Heymich
Postings:
1
From:
n/a
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Posted:
Mon Oct 30, 2006 - 11:28 PM
Hi,I've recently been diagnosed with myxopapillary ependymoma tumors of the spine. I would like to have contact with someone who is also experiencing this condition or who has had treatment. Michelle.
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By:
luckyangel
Postings:
8
From:
n/a
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Posted:
Fri Nov 10, 2006 - 12:58 AM
Hi Michelle, I was diagnosed with large ependymoma in the lumbar area of the spinal cord in 2001. Would you like to talk?
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By:
administrator
Postings:
82
From:
n/a
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Posted:
Tue Jan 30, 2007 - 10:12 AM
Someone left a request for networking in my Private Messages box on 5th January. I replied via the Private Messages system and said we have a patient with the same cancer who is very happy to network. So if it's you who left the request please check your Private Messages box and we can set things up!
Best wishes
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By:
sherree
Postings:
5
From:
n/a
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Posted:
Fri Mar 02, 2007 - 07:29 PM
From Julie:
I had a Mixed Mullerian (carcinosarcoma) tumour and would like to hear from anybody else who's had the same type.
Julie
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By:
sherree
Postings:
5
From:
n/a
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Posted:
Fri Mar 02, 2007 - 07:30 PM
My mother has mix mullerian cancer and she would like to find out more about it, what treatments others have had, etc.
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By:
sherree
Postings:
5
From:
n/a
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Posted:
Fri Mar 02, 2007 - 07:31 PM
From sherree:
what treatment did you have? My mother has this and she would be very interested to hear your experience
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By:
Julie
Postings:
3
From:
UK
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Posted:
Sun Mar 04, 2007 - 02:17 PM
Sherree, I have replied via the private message system. Julie
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By:
sherree
Postings:
5
From:
n/a
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Posted:
Mon Mar 05, 2007 - 02:38 PM
Julie - I don't think I really know how to use message boards. I think I replied via the private message system. Sheree
From Julie:
Sherree, I have replied via the private message system. Julie |
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By:
Sandra
Postings:
2
From:
n/a
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Posted:
Sat Mar 24, 2007 - 10:24 AM
I was diagnosed with cholangiocarcinoma of the liver in late November 2006 and had it removed in early December 2006. I had 50% of the liver removed as the growth was on the periphery of the liver. I have seen an oncologist who advised no requirement for chemotharapy at this stage.It is rather unusaual to have a cholangiocarcinoma on the periphery of the liver. I would be interested to hear from anyone who has had a cancer in the same position as mine, what their treatment was and how they are doing now.
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By:
Sandra
Postings:
2
From:
n/a
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Posted:
Sat Mar 24, 2007 - 10:26 AM
I was diagnosed with cholangiocarcinoma of the liver in late November 2006 and had it removed in early December 2006. I had 50% of the liver removed as the growth was on the periphery of the liver. I have seen an oncologist who advised no requirement for chemotharapy at this stage.It is rather unusual to have a cholangiocarcinoma on the periphery of the liver. I would be interested to hear from anyone who has had a cancer in the same position as mine, what their treatment was and how they are doing now.
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By:
tingtinger
Postings:
1
From:
n/a
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Posted:
Thu Nov 22, 2007 - 01:46 PM
Hi there (Laura?)
I was also diagnosed with yolk sac tumor last year. I had surgery and chemotheray finishing Oct 06.
I would like to get in touch with someone with similar experience....
and Laura, if you are still checking these posts: How are you doing?
Thanks
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By:
PaulBS5
Postings:
1
From:
n/a
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Posted:
Fri Aug 11, 2006 - 04:13 PM
I have got Adenoid Cystic Carcinoma, and would be very happy to speak to anyone else with this condition.
Paul
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By:
kassiekay
Postings:
2
From:
Reading, Berkshire
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Posted:
Fri May 09, 2008 - 10:59 PM
Hi, in 1994 I had a Radical Vulvectomy in Tenerife, where I lived at the time. Last year I was told I had Cancer of the Vulva again. Through this time I have had precancer cells which have been removed. In fact I am back in nxt week for another clearing. Begining to feel like my yearly holiday! Anyway it has not got me yet. Anyone out there had a Radicaul Vulcectomy. I would love to hear from you.
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By:
administrator
Postings:
82
From:
n/a
|
Posted:
Wed Feb 14, 2007 - 10:22 AM
We've been contacted by someone who has haemangiopericytoma. He'd like to communicate and share notes with someone with the same condition. If you can help, please email us at: contact@rarercancers.org.uk
Best wishes,
Administrator |
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By:
sal
Postings:
1
From:
n/a
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Posted:
Thu May 22, 2008 - 05:42 PM
From PaulBS5:
I have got Adenoid Cystic Carcinoma, and would be very happy to speak to anyone else with this condition.
Paul
Paul i was diagnosed with adenoid cystic carcinoma in july 07. i have just finished treatment and would be keen to speak with people with similar experiences.
sally |
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By:
cat
Postings:
2
From:
n/a
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Posted:
Sat Jul 26, 2008 - 11:37 AM
Hi Everyone,
I've just joined the forum and I hope I can offer a bit of help to the group/and/or anyone, as well as getting some help/info too. I'm here because my ittle sister died last year very suddenly and unexpectedly from Pheochromacytoma. It was unforunately only diagnosed at her post mortem. She would've been 35 had shelived another month. The M.E told my parents its likely to be 'familial' and as I'm one of seven, most of my siblings have been checked. I'm one of the last to start this process but finally 'bit the bullet' and went to my GP and have been referred to a cosultant. Some of the diagnostic tests have been done, as yet, no results since this was literally just this past week (bloods etc no imagery or anythjing like that yet).
I've since discovered that many of the symptoms my sister ha been experiencing, sound all too familiar which is a bit scary to be honest. I can only imagine the frustration she'd had when trying to resolve this with her GP since it seems the symptoms are a bit vague and varied. I wasn't so courageous as my sis and didn't feel able to say to my GP oh by the way, I'm getting these awful headaches and weird vision, or night sweats, or feeling dizzy/faint... I honestly don't know where these tests will lead. It seems so long and drawn out too and they must've sent out my next appontment on the same day as I had my bloods done and a 24 hour urine test for ' catecholamines' (?) among other things.. the results won't even have been analysed but I don't have my next appointment until sep 30 which seems an agonisingly long wait to be kept in the dark.. especially since I'm just at 'first base' as it were, with getting the referral etc. Is this the norm? Sorry, I guess I'm not the best blessed with patience and it took a lot for me to actually ask my GP as to whether she thought I should see a specialist andd get checked... she obviously thought I should as i didn't wait long for the referral to come through but its the hospital system that seems a bit on the slow side. If I knew its because the biological processing of blood work ups/ urine anaysis etc was complex and took a long time, it'd make sense, however, I don't know if this is the case or not. If I can give any further info about my sister's experience and my family, to the person with Pheochromocytoma, I'd be more than happy to share with them. I'm sorry this so long-winded and garbled but I wanted to say everything that could be potentially helpful, thanks in advance for your patience and reading this.
Best Wishes,
Cat
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By:
administrator
Postings:
82
From:
n/a
|
Posted:
Mon Jul 28, 2008 - 02:48 PM
Hi Cat,
Very sorry indeed to hear about your sister and also that you are not feeling well. Would it be OK for me to email you personally to discuss?
Best wishes,
Administrator |
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By:
simba
Postings:
3
From:
n/a
|
Posted:
Mon Aug 18, 2008 - 05:40 PM
Hi Cat
Sorry to hear about your sister. I have familial Phaeochromocytoma (malignant/recurring). If you want to have a chat about treatments, experiences etc I'm happy to be there for you.
Simba
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By:
viking41
Postings:
2
From:
n/a
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Posted:
Tue Aug 26, 2008 - 11:15 PM
Hi, my 15 year old son had a tumour removed from his "cauda equina" in November of last year. He also had 6 weeks of radiation and has been having follow up MRI"s that have been good so far. Our concern right now is his recovery, both emotionally and physically. I am wondering if anyone else has had this and what their recovery was like...what to expect.
thanks
Laurie
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By:
viking41
Postings:
2
From:
n/a
|
Posted:
Tue Aug 26, 2008 - 11:18 PM
From Heymich:
Hi,I've recently been diagnosed with myxopapillary ependymoma tumors of the spine. I would like to have contact with someone who is also experiencing this condition or who has had treatment. Michelle.
Hi Michelle...
My son has this as well..would like to talk to someone else that has gone through this. He is 15.
Thanks
Laurie |
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By:
batham
Postings:
2
From:
cheshire
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Posted:
Wed Aug 27, 2008 - 08:11 PM
hi, a message for mona
im unsure how to get hold of u for a chat because its good to know others with the same. my email is batham553@btinternet.com hope to hear from you. claire
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By:
janeinthehills
Postings:
17
From:
UK
|
Posted:
Tue Oct 14, 2008 - 06:22 PM
From simba:
I have familial Phaeochromocytoma (malignant/recurring).
Simba
Hi Simba
My husband has recently been diagnosed with malignant phaeochromocytoma and we don't know what to expect.... a chat about your experiences would be helpful
Regards
Jane |
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By:
simba
Postings:
3
From:
n/a
|
Posted:
Thu Oct 30, 2008 - 12:26 PM
Hi Jane
I am happy to chat with you and hope I can help ease your mind. If you email the site administrator, she will pass on my email address and we can take it from there.
Hope to hear from you soon.
Simba
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By:
Anniel
Postings:
1
From:
n/a
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Posted:
Tue Nov 04, 2008 - 03:31 PM
My husband has secondary melanoma which has spread to his liver. The oncologist has told us he has between 3-6 months to live. We are seeing a consultant at the Royal Marsden (sutton branch) this week to see if there are any drug trials he can try. It may be difficult as he takes Warfarin.
The chemo offered at our local hospital (Royal Free Hampstead) is Dicarbazine and if the RM does not come up with any drug therapy that is better than this, he will start Dicarbazine shortly to try to gain a few months extra life.
Is there anyone else out there withseconary melanomas?
Anniel
Anniel |
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By:
rosalita
Postings:
3
From:
uk
|
Posted:
Thu Dec 04, 2008 - 02:44 PM
i have a placental site throphblastic tumour and was wondering if theres anyone else that has the same
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By:
Marion
Postings:
2
From:
n/a
|
Posted:
Fri May 09, 2008 - 12:18 PM
From PaulBS5:
I have got Adenoid Cystic Carcinoma, and would be very happy to speak to anyone else with this condition.
Paul
Paul, I also have Adenoid Cystic Carcinoma. It's taken me a while to find this site due to added Anxiety and Depression, but if you still want a contact, so do I 
Marion |
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By:
stefrulesb
Postings:
1
From:
n/a
|
Posted:
Mon Mar 30, 2009 - 04:14 PM
Hi, my mother was recently diagnosed with Mullerian Adenosarcoma of the Uterus. It is extremely rare uterine cancer that is very aggressive...has anyone on here been diagnosed with the same type of cancer and have any advice as to treatment or facilities...please let me know ASAP. Thank you
Stefanie
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By:
kathp
Postings:
1
From:
n/a
|
Posted:
Mon May 04, 2009 - 08:09 PM
From simba:
Hi Cat
Sorry to hear about your sister. I have familial Phaeochromocytoma (malignant/recurring). If you want to have a chat about treatments, experiences etc I'm happy to be there for you.
Simba
Hi Simba
I've got so many questions but don't know where to start ... i've just been diagnosed with cancer of the adrenal gland but don't know yet which type I have. Am going into to have the gland removed on 4 June. I wonder if you can let me know your experience
Thanks |
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By:
maggot122
Postings:
1
From:
Northampton
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Posted:
Sun Jun 28, 2009 - 09:31 PM
I have had granusla cell tumour of the ovary, malig melanonia and was diagnosed this Monday to have a tumour on my sciatic nerve, another rare one, anyone have any info on this?
Thanks. x
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By:
kenny1983uk
Postings:
1
From:
UK
|
Posted:
Mon Jul 20, 2009 - 02:54 PM
im a kidney cancer patient, not rare~ i found this site by searching RCC, http://www.beatrcc.com they have a community but seems no one knows this site~ WTH?~
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By:
vixen
Postings:
3
From:
n/a
|
Posted:
Tue Aug 04, 2009 - 12:49 PM
From luckyangel:
Hi Michelle, I was diagnosed with large ependymoma in the lumbar area of the spinal cord in 2001. Would you like to talk?
Hi Michelle my son not me was diagnosed wi myxopapillary ependymoma back in april 2007 aged 3 if u would like to talk at all let me know x |
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By:
vixen
Postings:
3
From:
n/a
|
Posted:
Tue Aug 04, 2009 - 12:51 PM
From viking41:
Hi my son was diagnosed with myxopapillary ependymoma at the age of 3 in april 2007 if u would like to talk at all?
Hi Michelle...
My son has this as well..would like to talk to someone else that has gone through this. He is 15.
Thanks
Laurie |
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By:
vixen
Postings:
3
From:
n/a
|
Posted:
Tue Aug 04, 2009 - 12:52 PM
From vixen:
sorry my email is no.1vixen@hotmail.co.uk
Hi Michelle my son not me was diagnosed wi myxopapillary ependymoma back in april 2007 aged 3 if u would like to talk at all let me know x |
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By:
simba
Postings:
3
From:
n/a
|
Posted:
Wed Aug 05, 2009 - 01:34 PM
From kathp:
Hi Simba
I've got so many questions but don't know where to start ... i've just been diagnosed with cancer of the adrenal gland but don't know yet which type I have. Am going into to have the gland removed on 4 June. I wonder if you can let me know your experience
Thanks
Hi Kathp
I've only just noticed your post!! Sorry.
I hope you've recovered well from your op. You should have the pathology results back by now. I've sent you a private message.
Take care, hope to hear from you soon.
Simba |
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By:
Sweet_pea
Postings:
1
From:
n/a
|
Posted:
Sun Jun 21, 2009 - 10:28 AM
Hi, I am currently awaiting 5-HIAA(24 hour urine collection) test results for carcinoid syndrome after being admitted to hospital recently with “asthma”, flushing of the chest, face and neck and palpitations on several occasions (this is could apparently be carcinoid syndrome).
I have suffered with diarrhea for many years (recently diagnosed as Irritable Bowel Syndrome after a full colonoscopy which was clear apart from a few benign polyps) and have been “asthmatic “ for 16 years, also diagnosed with depression many years ago but this has been much less severe in recent years.
I am Currently conducting lots of research and discovered that people with carcinoid are often diagnosed with IBS, Asthma and Depression. Fortunately I saw a doctor in hospital who has looked at the big picture and put two and two together. I am trying not to frighten myself and am realizing how lucky I am after reading many stories of other peoples experience of this disease, some not so good but most very hopeful. The waiting game is the worst but I do have an appointment to see my consultant in a few weeks. It’s just the wondering that if I do have a carcinoid, where is it? (I know it is not in my intestine due to the full colonoscopy – the surgeon even showed me the inside of my appendix!) Will they be able to find it easily? Has it spread (mestastisis)? What will the prognosis be?
While in hospital I had two chest x-rays, along with blood gases tests and other bloods, all clear, so am “assuming” the possible carcinoid is not there. Initially I was put on a very high dose of steroids which is normal after an attack but have since been taken immediately off them, told to stop ventolin (with surprising positive results) and put on an inhaler called Symbicort which has helped immensely and am not relying on it to relieve wheezing.
I do have a couple of questions bugging me and would appreciate any feedback:
If you have carcinoid syndrome does this mean you definitely have a carcinoid?
Is a neuroendocrine carcinoid the same as a neuroendocrine carcinoma?
As I said, trying to remain calm and hopeful until I have the results but just wanted to say hello and to wish you all the very best with your own journeys and if any of the above information is of any help then I am happy to share it.
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By:
maianpf
Postings:
1
From:
n/a
|
Posted:
Fri Sep 18, 2009 - 10:03 AM
Hello sweet_pea,
Please come and visit www.netpatientfoundation.com for more information about Neuroendocrine Tumours and Carcinoid Syndrome. We also have a helpline you can call if you'd like to speak to someone - 0800 434 6476.
All the best,
Maia
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By:
kellypb5
Postings:
2
From:
n/a
|
Posted:
Mon Oct 12, 2009 - 09:59 PM
i am 25 havve got an agressive angiomyxoma, have recieved treatment and have gone through a pregnancy and have a beautiful little girl would like to hear more on this from anyone who suffers from it
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By:
johnboy
Postings:
1
From:
Aberdeen
|
Posted:
Mon Oct 19, 2009 - 01:26 PM
Hi
I have had Zollinger Ellison Syndrome(gastrinoma) now for about 10 years, i want to know of any others out there who have the same illness.
john Armstrong |
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By:
bribie
Postings:
2
From:
sheffield uk
|
Posted:
Mon Jun 07, 2010 - 04:22 AM
My 20yr old grand daughter was diagnosed in March 2010 with a Neuroblastoma located in her abdomen. She is currently receiving treatment in the form of intensive chemotherapy and possibly an miBG treatment scan in the next couple of weeks.
Her Oncologist has told us that it is a very rare tumour and the available literature states that it is mostly found in very young children under the age of 2yrs?
Does anyone have a similar experience of this cancer in a young adult?
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By:
Buffy
Postings:
2
From:
n/a
|
Posted:
Thu Jun 17, 2010 - 05:57 AM
From stefrulesb:
Hi, my mother was recently diagnosed with Mullerian Adenosarcoma of the Uterus. It is extremely rare uterine cancer that is very aggressive...has anyone on here been diagnosed with the same type of cancer and have any advice as to treatment or facilities...please let me know ASAP. Thank you
Stefanie
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By:
Buffy
Postings:
2
From:
n/a
|
Posted:
Thu Jun 17, 2010 - 05:59 AM
My mother in law has Mullerian Adenocarsinoma (uterine) Stefanie what can you tell me about your mother's experience?
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