Desmoplastic
Small Round Cell
Tumor Charity
The first few days and weeks after a new diagnosis can feel overwhelming and frightening. The lack of information around Desmoplastic Small Round Cell Tumour and the statistically poor prognosis make it doubly so.
We are here to help things feel a little less overwhelming. Whether you want to know about the latest research being carried out, talk through your fears, ask questions or get to know others who are walking along the same path we can provide assistance.
People often tell us that one of the things they find hard, is suddenly being surrounded by lots of new language that they are unsure of the meaning of. Below are a few of the terms you might hear throughout your treatment:
If treatment is described as palliative it generally means that right now a curative solution doesn’t exist for your disease. That doesn’t mean it won’t in the future. It also doesn’t mean that your doctors won’t try to give you the best possible life for as long as they can. Some patients can live for many years while receiving palliative care.
The accumulation of fluid in the peritoneal cavity. Active tumours within the abdominal area can often cause this. If chemotherapy is working effectively the amount of ascites usually reduces and can sometimes disappear entirely.
White blood cells that are important in fighting infection, particularly bacterial infections. Chemotherapy often causes these to drop meaning that people are particularly susceptible to infections during this period.
Having a neutrophil count that is below the normal range, meaning someone is susceptible to infection during this period.
Ulcers that can form in the mouth and digestive tract as a result of chemotherapy treatment. It should be noted here that not everyone receiving chemotherapy treatment will suffer mucositis.
A therapy that involves red light treatment to prevent and reduce the severity of mucusitis.
In the early days it can be helpful to take one day at a time. Thinking too far in advance can be difficult and can also make things feel more frustrating if a treatment plan changes or chemotherapy becomes delayed due to an infection. Planning something to look forward to at the end of each cycle, or small things during the cycle can be helpful in terms of remembering that life is about more than just cancer.
Remember it’s normal to feel overwhelmed and frustrated. A diagnosis of this kind isn’t fair. It’s reasonable to feel angry and/ or sad that life hasn’t turned out in the way that you expected it to. It’s important to know that in so far as we are aware there is nothing that you or anyone else has done that has caused your diagnosis. Unlike some other cancers there aren’t any particular risk factors involved. Scientists believe the mutations that cause DSCRT happens spontaneously at random. It’s purely a matter of luck.
It’s ok to have lots of questions. Your oncologist or specialist nurse will be able to answer lots of them. Although Desmoplastic Small Round Cell Tumour is rare the treatments used to fight it are used widely in other cancers. If you have questions about side effects, or the effectiveness of treatment don’t be afraid to ask them. If you want to talk through things you have been told please don’t hesitate to call our support line on 07305 190656. We may not have all the answers but will support you in finding those that are available. You don’t have to do this alone.
Day to day life may be more complex now. Remember that it’s ok to admit that you can’t do it all. Don’t be afraid to ask for help from family and friends. Whether it’s help with childcare, picking up shopping or transport to appointments you’ll surprised at just how kind people can be. If you don’t have the support of loved ones we are happy to help you find local support services to help with the practical aspects of day to day life.
For young people going through a diagnosis or their siblings, children’s hospitals often have play therapists available to you or them process the information you are being given. For those experiencing an adult diagnosis who have children, talking to your specialist nurse is usually the best route to ask if there is any local support available for them.
Above all, be kind to yourself. Remember that you are allowed to be human and that big emotions are normal and to be expected. We are here to help in any way that we can.
Living with Desmoplastic Small Round Cell Tumour can come with questions, anxieties and difficulties that you haven’t previously experienced. This page aims to offer strategies to help with some of the day to day issues you may face
It’s still your life
Cancer treatments are often hard. They come with side effects which can make day to day life hard. Typically the last few days of each cycle are the easiest. Planning something at the end of each cycle to look forward to can help reduce frustration during the most difficult days, and can ensure that you feel as though you are Living not just existing whilst on treatment.
Remember that no matter what is happening to your body, you are a person first and foremost. You are allowed to advocate for the life that you want to lead. If something is important to you, or an event is coming up that means a lot to you talk to your oncologist. Sometimes treatment can be shuffled slightly to make things that seem impossible at first glance work.
Reach for your dreams
Under 18s with a diagnosis of Desmoplastic Small Round Cell Tumour are entitled to a wish. Speak to your Cancer social worker so that they can refer you/ your child for this if appropriate. No matter what your age, if you have things you would like to accomplish or a bucket list you would like to fulfil please reach out to us. We are happy to share these for you on our social media pages. Whilst we can’t make any promises about who we will reach out, we will try to make sure as many people as possible know about your hopes and dreams.
Travel
If your tumours are reducing or stable and you are expected to have more than six months to live, travel insurance is often available for short haul destinations without too much difficulty as long as your oncologist feels that you are fit to travel. Long haul travel is not impossible but depending on your situation finding travel insurance can be more challenging. Because Desmoplastic Small Round Cell Tumour is rare insurers can find it difficult to estimate potential costs associated with you being ill abroad and therefore can be reluctant to provide insurance to countries where medical care is particularly expensive.
Taking additional medication with you when you travel is advisable. Remember pain levels can and do fluctuate and you may not be able to buy the same brand whilst abroad. It is advisable to take medication in their original packets especially if travelling through customs, along with a letter from your hospital staying the medications being taken.
Lots of families of those diagnosed with Desmoplastic Small Round Cell Tumour begin the grieving process early, once a prognosis becomes palliative. This is called anticipatory grief. It can be a time that is emotionally challenging as you try to make the most of the time you have left with your loved ones whilst battling with the intense emotions caused by the knowledge that they will die.
Making memories, taking photographs, fingerprints and hand casts can all help families to process those emotions. One thing people often tell us is that they wish they had taken photographs of their loved ones hands before they passed away. Having recordings of a person’s voice, making memory bears for children left behind or having letters or journals made for younger children to read later can all be helpful during this stage.
Every individual will deal with grief differently both before and after death. There is no right or wrong way to process those strong emotions. Sometimes families can find conflict internally and different family members process their own feelings in different ways which cause its own challenges. Remembering that they are just trying to navigate their own way through the moment rather than trying to sabotage the way you are trying to deal with it can be helpful.
There are lots of organisations that came help those grieving. Hospitals and hospices often have their own services that families can tap into, which your loved one’s specialist nurse should be able to direct you towards.
Often the most meaningful support comes from speaking to those who have experienced their own loss. Joining one of our Capture community WhatsApp support groups can enable you to access this support. Giving us as much information about your situation as possible when you get in touch can help us to group you with those best placed place to understand your feelings.
If you are struggling to get the support you need please do ring our helpline so that we can signpost you got local organisations that can help.
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The rarity of Desmoplastic Small Round Cell Tumour means that many of those diagnosed won’t meet others with the same diagnosis in their local hospitals. Whilst some will travel to larger treatment centres we believe strongly that this is a diagnosis that no-one should face alone.