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Rare Cancer - Small Cell Vaginal Cancer

1 Jan 2018 19:34

On my journey, I have never met anyone with this rare cancer, there is no information out there, no leaflets, nothing, I have heard it is not funded for research as it is so rare so not worth the cost Sad even the local Cancer Information Centre has never heard of it or met anyone themselves. Oncology Team call it the naughty cancer, as it misbehaves, and hides! detection can be hard, but also fatal.I have been told it is the worse type of cancer cell, scary like all cancers, but I just really wish so much I could talk to someone who has the same or even knows of someone who has or had it? Please can anyone help? Thank you Kindly. 

Re: Rare Cancer - Small Cell Vaginal Cancer

1 Jan 2018 21:12 in response to Jane_R

Hi there.    While you are waiting for the nurses to respond - I believe they are back at work tomorrow - if you type Small Cell Vaginal Cancer into the Search Forum box above your post you will find at least one post about the same cancer which may be of interest to you.  There may also be more earlier posts.  My best wishes to you.

Re: Rare Cancer - Small Cell Vaginal Cancer

1 Jan 2018 22:31 in response to Annieliz

Hi, thank you very much for your reply to my post, am hopeless and not used to these forums at all!! although you have explained what to type into the search forum box above my post, I cant seem to see it, confused I think.I appreciate you replying to me though.Kind Wishes

Re: Rare Cancer - Small Cell Vaginal Cancer

1 Jan 2018 22:48 in response to Annieliz

Hiya, think I may have got it!! just all new to me, posting things, etc. Kind Regards.

Re: Rare Cancer - Small Cell Vaginal Cancer

1 Jan 2018 23:40 in response to Jane_R

Oh good; I am pleased you have found it.  There may be other postings on the same subject too, further down the list.  It helps to know that there are other people who have shared the same experience.  If you are stuck let me know and I will try to help you.  I am not the  greatest person at  giving directions on the forum but if we both get stuck I can ask the moderator to give you a direct link!  I am going to bed now but will be back to take a look in the morning.

Re: Rare Cancer - Small Cell Vaginal Cancer

3 Jan 2018 11:05 in response to Jane_R

Hello Jane­_R,

Thanks for posting a question. I am sorry to learn about your situation.

It can be very difficult for people with rare cancers as there is often very little easy to understand information that people can access. There is also a lack of peer support, because when so few people have a particular cancer there is no one in a similar position to talk with. This can be very isolating and lonely and I can certainly understand why you would like to have contact with someone in a similar situation.  Unfortunately I cannot put you in touch with anyone else who has the disease as I don’t know of anyone. Even if I did contact details are confidential  I noticed that Annieliz is offering you support and has kindly directed you to one of one our other forum users who posted about this kind of cancer. While it is worth a try, unfortunately, I  am unsure if this will be a particularly useful contact for you. If it is the same member that I  am aware of, they have not  signed in since 2011. Although some of our members stay with us for numerous years, many use the forum for only a short period of time and then move.

I am unsure if you have seen our section of information about rare cancers here. It does not specifically mention your type of cancer, but in the living with cancer section we mention a number of cancer organisations. You may be able to get some support from the Rare Cancers Alliance’s forum.  Although the forum is not based in the UK, it does have international users. With rare cancers international forums are often more useful, as you are more likely to find someone in a similar situation. The link to their website is  here.

I am sorry that I cannot be more helpful and I do hope that you are able to get some support. You are welcome to get back to us if you have any other questions. If you  think that it might be useful you are welcome to call us. Our freephone number is 0808 8004040. We are here From Monday to Friday between the hours of 9am to 5pm.

Kind regards,

Jean

Re: Rare Cancer - Small Cell Vaginal Cancer

3 Jan 2018 15:03 in response to Annieliz

Hi Annieliz, just to thank you for your kindness and reply, I have  had a reply from Nurse Jean, but unfortunately she doesnt know of anyone on the forum with the same type of rare cancer, she posted a nice reply though, just makes me sad. The understanding I have it is SO Rare that only approx 30 ladies up to 2017 Worldwide!!!! have had it!! Wow.... The hospital themselves in the beginning didnt mention just how rare it was and therefore trying to treat it was a challenge too, All cancers are nasty I understand this........But I believe not many survivors too,and small cell is usually the Lungs not where I was diagnosed on my part of the body Sad  I do feel isolated, some folk have said " you must be special Jane to get this"! believe me Nothing is Special about it. Makes you feel like a ticking time bomb! so have a knock on affect to mental wellbeing too. Anyway wont go on, but appreciated your message. I wish you well, and may 2018 be kind with some happy times. Not sure if you are unwell yourself,so lots of tlc. Jane x

Re: Rare Cancer - Small Cell Vaginal Cancer

3 Jan 2018 15:15 in response to CRUK Nurse Jean

Hello Jean, appreciate your reply, and yes it was kind of Annieliz to reply to my posting. Seems the type I got diagnosed with is So Very Rare Indeed, apprears small cell type is mostly the Lungs, infact despite I had tumour removed surgically from vagina at one hospital, their analysis was I had small cell terminal lung cancer!!!! Which I didnt...anyway I was followed through by another amazing hospital, with good team, and the Zapped me! treated a little like cervial cancer but had huge amount of internal and extral radiotherpy along the chemo at the same time, very hard going for months.I now have radiation proctitis in my bowel and bladder, and other complications too, which guess I never expected, harsh treatment but I am batting and have much to thank the team,I have read but not sure how accurate this is that most women dont survive long term....anyway like most people, guess day at a time for how long,but has impacted hugely on my mental state of mind as well as physical, but as I said so very grateful, particulary to an amazing wonderful lady Oncology Dr, who sadly has retired.So guess I will try your link to the Amercian Rare Cancer Sites,I honestly feel so very very alone, but hey, it is what it is. Thanks very much Jean, wishing yourself well. Kind Regards. Jane Happy 

Re: Rare Cancer - Small Cell Vaginal Cancer

3 Jan 2018 17:27 in response to Jane_R

Hi Jane,

Just noticed you have radiation proctitis. After RT to pelvis I got radiation colitis that ended up as sepsis. Resected sigmoid and now have two bags for life. I had no idea that radiotherapy would be so hazardous.

My advice is to take symptoms seriously and if things appear to be getting worse or you get a temperature or changing/worsening of bowel habit, seek A&E treatment sooner rather than later.

Hope it turns out ok for you.