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Non melanoma skin cancer, new generation diagnostic, research and treatments available (and accessible) UK wide

ShantaG
Posted by

I have been told I have a basal cell carcinoma  ( BCC) based on a superficial consultation with a dermatoscope. No differential diagnoses were discussed although there are potentially many other diagnostic possibilities, based on the small 3 mm small size and smooth clinical aspect, dimple aspect and not growing (e.g dermatofibroma). No immediate arrangements for confirmation tests were made, no treatment options discussed, major (potentially disfiguring) surgery was promptly advised, with disconsideration of other possible and more rapid (topical, local) treatment options, all available and indicated based on the size and aspect of the lesion. Type of BCC not specified, therefore low or high risk unclear. Given the fact that the above surgery would now take months to be arranged due to waiting times, I suspect that the lesion is thought to be low risk. Finally, the impact on the mental health of the patient receiving such news and treatment ( with the associated waiting times and implications of facial disfiguring surgery) was not properly assessed. 

Please I would like to know, if possible, the answers to the following questions (most grateful to be contacted via email if you prefer). 

1.  What is the best practice  algorithm in terms of diagnosis and treatment (access to rapid  investigations and treatment) once a BCC is suspected. So far, I have been unable to secure appropriate advice, tests and treatment even through the private route. I have waited for months (privately) and I have no answers, basically I do not have a confirmed diagnosis and an agreed treatment plan. 

2. Are there any new generation diagnostic tests other than the punch biopsy, available and accessible in UK? Example Optical Coherence tomography for precision diagnostic? Can you provide any contact details? 

3. Are there any rapid access Dermatology clinics UK wide (or drop in clinics, or any other specialist advice readily available privately or otherwise) where I can have a second opinion?

4. Any research centers or BCC trials available, in which I can participate - hoping that being part of one would offer a quicker pathway and access to tests,  new /and non invasive  treatment? 

5. Any information about any new topical (local) treatments with immunomodulators (Aldara type) or Photodynamic (PDT) therapy. Is PDT readily accessible through NHS/or privately in all University hospitals/or through Dermatology departments UK wide? Can I be refused treatment if the type of skin lesion I have proves to be a BCC and has indications for local treartment?

6. Finally, how important are the patient options/preferences in deciding the course of treatment? 

Many thanks, greatly appreciated

Sarah M - Macmillan

Hi ShantaG,

Thanks for getting in touch and welcome to our online community.

I’m sorry to hear you didn’t feel your mental health wasn’t properly assessed when you were given this diagnosis. It’s never easy being given a cancer diagnosis and it sounds like you’ve come away from your appointment with many queries.

BCC’s are usually slow growing and it’s rare for them to spread to other areas of the body. If your specialist felt this was a high-risk cancer, they would want to treat it more quickly.

However, we do appreciate it can be a worrying time waiting for a confirmed diagnosis and waiting to start treatment. If you feel time is going by and you’re not getting all the information you could speak with PALS.

In terms of recognition and referral for a suspected BCC, NICE (national institute for health and care excellence) have information I hope you find helpful.

You also asked about possible treatment, British association of dermatologists have information you might find useful to read. It’s important to remember this is general information. The best people to speak with will be your hospital team, as they have more information about your individual situation. This will also give you the opportunity to discuss if you’re suitable to participate in any clinical trials.

If you feel your questions aren’t being answered you could ask for a second opinion whether this is for the NHS or private health care. We would encourage you to speak with your GP as this is something they can arrange.

As a cancer charity were not able to make any recommendations regarding hospitals and specialists.

Once you get a confirmed diagnosis, your consultant should be able to discuss the best treatment for you and should respect and any decisions you make based on this.

I hope this information is helpful, but if there’s anything else we can help you with please don’t hesitate to get back in touch.

Best wishes and take care, 

Sarah (cancer information nurse specialist)

latchbrook
Posted by

Hi and a second welcome to the online community

I wondered if you'd like to join us over in the skin cancer group as it'll give you the opportunity to chat with others who have been diagnosed with BCC. 

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Perhaps see you over in the group later

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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ShantaG
Posted by

Hi, 

Thank you, I would like to join the group.  It would be most useful. There isn't much to say on my profile as yet as I've just been diagnosed with BCC (face) and I am due to start treatment for it. I will update as I go along, and hope it will help others as well. I will start treatment with Aldara for 6 weeks. 

Kind regards, 

SG

ShantaG
Posted by

Thank you Sarah,

Many thanks for your reply. I feel more positive now. 

Since my previous email I had the BCC confirmed by Dermoscopy. I am also due to start treatment after being able to discuss different treatment options, and I've chosen the treatment I felt it is the most appropriate for me.  I have been lucky to find  a specialist able to help me and put my mind at ease.  

Waiting for diagnosis and treatment can be extremely worrying as you said, for many reasons including lack of control over treatment choices/options, time and ability to to fit in appointments/treatment within a busy schedule, and of course the long waiting lists. 

Kind regards,

SG