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February 28th is Rare Disease Day. It aims to raise awareness about rare diseases, including rare cancers, and the impact they can have on people’s lives. About one in five people with cancer in the UK (20%) have a rare cancer.
In this blog, editor Sadie takes a look at what rare cancers are and the extra challenges having a rare cancer can bring. We will also suggest ways of coping with these challenges if you are affected by a rare cancer. And finally, we will let you know where to get further information and support.
What is rare cancer?A rare cancer is a cancer that fewer than 6 in 100,000 people in the UK are diagnosed with each year.
The diagram below shows the proportion of common, less common, rare and very rare cancers diagnosed in the UK:
There are 198 different types of rare cancer. You may have heard of some of them, such as thyroid cancer, acute lymphoblastic leukaemia (ALL) and mouth cancer. But there are many very rare cancers most people will not be familiar with. We have information about many rare cancers – this A–Z list has links to the different types.
Diagnosing and treating rare cancerHaving a rare cancer can mean extra challenges during diagnosis and treatment. The cancer may take longer to diagnose. This could be because:
Finding the best treatment for a rare cancer may involve travelling to a specialist centre some distance from home. The treatment may be planned by an MDT (multi-disciplinary team) at the specialist centre and given in a hospital closer to home. Or the treatment may be highly specialised and given in the specialist centre.
If you are having treatment for a rare cancer in more than one hospital, you may want to keep a record of your treatment and appointments to help you to keep track. Our Macmillan Organiser can help with this.
Some people with rare cancer are invited to take part in a cancer research trial (clinical trial). This means they may be offered a new treatment that might not otherwise be available.
Coping with rare cancerTwo issues people with a rare cancer may face are uncertainty and isolation. There is often less information available about rare cancers, so it can be harder for doctors to answer your questions or predict what may happen. You may also need to travel a long distance for treatment, and you may feel your family and friends don’t understand what you are coping with.
Some things that may help are:
Further information and supportYour cancer team at the hospital will know the details of your situation and are in the best position to give you information and support.
Patient organisations may also be able to offer helpful information. They may know about new treatments, research trials and leading specialists in the UK.
The Macmillan website has information about many types of rare cancer. Here are some other websites you may find helpful:
If you can’t find the information you are looking for, speak to your healthcare team or call our cancer support specialists free on 0808 808 00 00.
To see what else Macmillan's cancer information team has been blogging about, please visit our blog home page! You can subscribe to receive our blogs by email or RSS too.
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The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.
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VERY RARE CUTANEOUS LYMPHOMA
After initially noticing a bump appear on my forehead in June of 2016 I was diagnosed with Primary Cutaneous (B-Cell) Follicular Lymphoma in May of 2017, This was following my own treatment with Doxycycline antibiotics which I requested after intense research on my part as I was getting no where within the current diagnostic system. It was a hunch that worked, there are several research papers on this. Initial MRI identified lesion on forehead and in eye socket in October 2016 but my only symptoms were slight elevation in LDH levels and double horizontal vision. Biopsy was inconclusive and sent for second opinion which totally changed the first report. They were then working on the idea it was an early stage ordinary systemic Follicular lymphoma which was showing a secondary event in the eye region. There was some lymph node involvement with a little fatigue but it was not fitting the boxes. The success of my approach and the evidence on a second MRI at the end of April 2017 which showed it had virtually gone. This instigated a complete MDT review of my case. and the conclusion it must be PCFL but they are now waiting for it all to come back to have another look at it. I was heading for Radiotherapy - not great on head especially in the eye area so I was very glad the Doxycycline beat them to it. Currently on Watch and Wait.
I am ok now but felt totally shell shocked at the whole process, I am sure I suffered post traumatic stress until I took control and found out about everything myself. The problem was no one had heard of my type of lymphoma. My GP was useless, no information, no support, I had to search hard to find anything online. My CNS who I met in December however was a darling and I will forever be very very grateful for the support she gave me. I must have tortured the life out of her trying to find answers and check information but she was always there for me.
Looking back my main thoughts are why was there no support for me when I was first told I had a blood cancer (ophthalmology clinic), why was my GP unable to give me any help. Why did I have to exhaust myself researching my own cancer and the support that is out there. I had to put myself through unnecessary anxiety and stress because no one was able to help me or answer my questions because I had a very rare cancer. I now try to help support others diagnosed with lymphoma and signpost them to all the information and contacts that I eventually managed to find.
It has been a very very tough eighteen months for me, I am now coping but its tough to live with an incurable cancer , no one understands why you are not being treated. Often feel people think you are a fake as you look normal. Its the physiological challenges that wear you down the most. Got quite depressed for a while but just had to keep going. It would be nice to be able to reduce my work days a bit but of course I don't fit into any support packages either so that's not an option. I just have to learn to carry this extra load and hope it stays wrapped up for as long as possible.
Karen. Fermanagh. Northern Ireland
Hi, Merkel Cell Cancer Survivor
About 13 years ago I noticed a small non-painful lump about the size of a pea under the skin of my waist.
I attended my GP, who told me that it was almost certainly a cyst, but that if I wanted, he could have it cut out at the surgery and have it tested. He told me afterwards that he did think it was a cyst , but just felt it did not feel to the touch exactly how many cysts feel. Although I was needle phobic I had lost my father to cancer and had it cut out and a few weeks later was called in and told that it was the extremely rare, Merkel cell cancer – about 50 cases a year in this country.
I was referred on to the specialist Christie's hospital who then took a further chunk of flesh around the site to test on the margins, and was subsequently told that that was clear.
I had looked online and got some information from the rarer cancers trust but have been looking specifically for a support group. There was non-in this country, but one online in America who were very supportive and had online scientific reports from the world's leading specialist in this cancer a Dr Paul Nghiem in Seattle, who was seeing 250 patients a year, not only from America, but worldwide, and who recommended a course of radiotherapy to mop up any rogue cells and which I had. 6 years ago I was advised that as I have had no problems from this in the interim, they no longer needed to see me automatically, but that if I had anything suspicious. I should see them urgently. I have had no recurrence of Merkel cell cancer and advise everyone to join a support group – apart from the information the emotional support is also a lifesaver
Carcinoid cancer my mms was found incidentally in 2016 during vascular surgery. Histology started in appendix possibly 5 years previous to finding ? Tumor in caecum removed 2016 hospital offer chemo as mop up job for microscopic spread but established stage 4 as gone through bowel wall. When discussed with oncologist benefits of chemo she could not say as goblet cell carcinoma so not bog standard bowel cancer ? My mum refused chemo.
No symptoms since diagnosis nodule on lung and now progressed to lining of stomach and small intestine no nausea vomiting and diahorria been bedbound for 7 weeks now struggling with fatigue slowly losing mobility.
Hi Karen KLI,
Thank you for your comment. I’m sorry to hear that the last 18 months has been tough for you and that you were not happy with the support you had to begin with. I’m pleased your CNS has been a help to you. Remember you can call the support line on 0808 808 00 00 (Monday to Friday 9am to 8pm) if you have any more question or concerns. Our specialist nurses would be glad to help as best they can.
It also sounds like you’re finding work difficult. Being back at work or talking to your employer can be challenging, but we have information that you might find helpful. Our free booklet Work and cancer has information on your rights, and speaking to your employer about making reasonable adjustments. You can order it here. I hope that is of some help.
All the best, Liza
Hi David_,Thank you for your comment. I’m pleased to hear that you have had no problems since your treatment and that you found some helpful support. Having emotional support can really help when coping with a rare cancer. Do keep posting on the Online Community and remember you can always call the support line on 0808 808 00 00 (Monday to Friday, 9am to 8pm) with any questions you have, or just to chat.
I’m sorry to hear that your mum is not doing so well. If you have any questions about her symptoms or changes to her health, please do speak to her healthcare team who know her medical history and can give you advice.
We have information about looking after someone with cancer which you may find helpful. You can order this here. We also have information about managing symptoms – including fatigue – on our website here.
If you want to talk to someone about your situation, you can call our support line on 0808 808 00 00 (Monday to Friday, 9am to 8pm) where you can speak to a cancer information nurse specialist. I hope this is helpful.
Ah yes - Rare Diseases.... Does anyone know how to get a rare disease added to the recognised lists of rare diseases? In other words, how do people with diseases that haven't so far gained recognition in those lists get just that one step nearer to feeling that at least someone has noticed their problem? Who knows, maybe then it might follow that there is seen even the faintest glimmer that somebody or other might start caring about it. What I am talking about? In my/our case, I am talking about late-onset post radiotherapy nerve damage - my own particular one-in-a-million 'Brucie Bonus' going by the snappy title Radiation-Induced Lumbosacral Plexopathy. If you want the story, you can find it here: https://www.rarediseaseday.org/stories/6258
But, enough of me and my treatment inheritance. As far as I can see, there's not even a catch-all of radiation nerve damage in all its various forms in the 'Rare Disease' lists. It is a ludicrous situation, and it's not helping anyone.
In addition to RILP's point there's nothing here about Radiation induced plexopathy here at all! I know it is rare, but as one out of 1000 patients who received more than 25 sessions of radiotherapy gets plexus nerve damage we are definitely not the only ones.
I myself had breast cancer in 2007 and received thirty three sessions of radiation therapy in my right breast and shoulder area for breast cancer. In 2009 the first symptoms of failure of my nerves en muscles started showing, I lost feeling in my fingertips and started to have problems with the muscle coordination in my hand. Now, 7 years later, my arm is practically fully disabled and in a brace.
So, yes, rare enough. But gladly I'm still here. But this post-cancer problem does need more attention.
I too have RILP as mentioned above ..I was treated for uterine cancer in 2001... the first side effect that appeared very quickly was lymphoedema and then the bowel issues started ... 2010 I stated to notice pins and needles in my feet .. 2012 tests at the doctors showed nothing sinister but I was starting to notice weakness going upstairs.. long story short on February 27th 2015 I stood for the last time...since then I have been living as a paraplygic not even able to weight bear. All this due to radiation for cancer treatment. The part that makes me angry and sad is the lack of recognition by the cancer community for this late stage side effect that s very real.. I also added my story to the rare diseases day and I started a blog to be able to share with others my experience https://wordpress.com/view/lifeinawheelchairblog.wordpress.com Writing the blog has enabled me to connect with others in a similar situation around the world .... I do believe that as survival rates increase there will be more people experiencing these problems and it needs acknowledgement from the cancer community... we are not the dirty little secret of cancer treatment, we are real people in need of help and understanding.... we maybe rare but we deserve understanding and support for Radiation Induced Lumber Plexopathy
Sorry ..this is the correct link to my story above https://lifeinawheelchairblog.wordpress.com/about/ thanks
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