Radiotherapy to pelvic region with crest.

[190366]

Hello

I am desperately looking for answers to my health problems. I have CREST syndrome and have had for 15 years, I am a 53 year old white English female. I have no internal organ involvement.

I have recently had a cancerous tumour a squamous cell carcinoma removed from my anus. It was graded T2 and my oncologist has said that normal treatment for this would be 28 days of radiotherapy to the pelvic region and chemotherapy treatment too. He said that there are adverse effects to radiotherapy and Crest Syndrome from what he has read with possible life changing effects to my bowel and bladder.

I am in a very difficult position as to know what to do.

Do you have anyone that I can talk to who can offer advice to me or who has experience of this

[LucyJean]

Hi there, Have you contacted your Consultant Rheumatologist to ask their opinion? It sounds like a really specialist/niche area of knowledge that needs a Consultant discussion between the Oncologist and Rheumatologist. I would also advise trying to get in contact with a specialist centre, such as the Royal Free which will have more knowledge on this than general Rheumatologists. The Royal Free website is

royalfree.nhs.uk/services/s...

There is a list of the contact number for Professor Chris Denton who is probably the most knowledgeable in this area. There is also a nurses helpline

Chris Denton's secretary 020 375 82042 and email [e-mail]

You could also contact SRUK but I suspect a volunteer on the helpline will not be able to answer your query.

Personally I have not heard of such a connection between radiotherapy and a worsening of bowel or bladder function, and of course scleroderma is an autoimmune condition that is often treated with chemotherapy.

I hope that helps.

All my best

Lucy xxx

[190366 in reply to LucyJean]

Thank you Lucy. That’s really useful.

[Ricexxjm in reply to LucyJean]

I too have crest and have had radiation to pelvic area for uterine cancer as well as chemo. I live in tn of USA and can not find anyone specializing in this decease. You can contact me at [e-mail]

I am not sorry I had treatment for cancer and seem to be in remission. I suggest you find a caring and knowledge able radiologist.

[dianekjs]

I second the recommendation to bring Professor Chris Denton in on the case for a consult, he is the preeminent scleroderma expert in the U.K. and Europe.

CREST is the old name for limited cutaneous systemic sclerosis or limited scleroderma for short and is a systemic disease. If you have the symptoms depicted by the acronym CREST, you do actually have internal involvement, I’m afraid. Raynaud’s is a manifestation of the vasculopathy or vascular disease that is the hallmark of systemic scleroderma, as are telangiectasia. Esophageal dysmotility is a symptom of GERD and the progressive microfibrosis that the disease causes throughout the GI tract. It sounds as if your disease has been fairly manageable or stable for a long time though, and that’s good.

I would think that treating the cancer will have to be the priority, as squamous cell carcinoma is nothing to mess around with. I would definitely want at least a second oncology opinion, and maybe a third to help you to determine consistency of treatment recommendations and protocols. Since this is obviously time sensitive, be sure to convey the urgency in scheduling and coordination, I don’t know if you have a provider who can effectively help with that or not.

I would also ask the oncologist if there would also be a risk to bladder and bowel function if you didn’t have scleroderma - i.e. how significantly might your disease increase your risk, and how high is the risk? Professor Denton may have experience with scleroderma patients’

response to various cancer treatments that may add perspective. I’m so sorry you are dealing with all of this and wish you the very best outcome. If your SSc has been relatively mild overall perhaps its impact on your cancer treatment will be minimal.

As LucyJean said, this is a very specialized, niche area which makes it more challenging to assess and research. I don’t have any more specific information that might be relevant, but I am the Director of Education for the Scleroderma Education Foundation as well as a scleroderma patient, and if I can be of any help in some way, please let me know. Best of luck to you, please let us know what you decide and how you’re doing.

[190366 in reply to dianekjs]

Thank you so much for your detailed response. I do have esophegus issues sorry I think I meant my heart, kidneys and lungs are okay at the moment. Get checked annually for these. My Crest has been stable for quite a few years so I pray it continues.

I have emailed Professor Denton, he is on holiday at the moment but hopefully will come back to me once he’s back.

I will let you know the outcome. I have already spoken to 3 oncologists locally to me and at the Marsden and Christie specialist cancer hospitals unfortunately all 3 do not have any experience with crest and radiotherapy to the pelvis they say it is so rare. They don’t believe I will find an oncologist in the UK with any experience and they are only able to go on research from the USA which will be my next place to try after Professor Denton. It’s all very scary. Thank you for your help though.

[LucyJean in reply to 190366]

Hi there, I am assuming that you have got the information about Prof Denton's holidays from contacting his secretary via email?!? If you just have an out of office message I think I would ring his secretary and let her know the urgency of the information you need. There might be someone else in the centre who could help in the meantime, or at least speak to Prof Denton as soon as he comes back so he can deal with the matter as quickly as possible.

Lxxx

[190366 in reply to LucyJean]

Yes I have by email. I will ring Monday thank you for your help. X

[forevermu]

Hi what symptoms were you getting fof them to find this diagnosis 190366.

[190366 in reply to forevermu]

I had a lump on my anus, had it removed and it was sent away for results and it was a T2 squamous cell carcinoma. Treatment is usually radiotherapy and chemotherapy. This is mine and my oncologists dilemma. Hope that helps.

[forevermu]

Thank you and good luck xx

[redtree]

I have limited systemic scleroderma( diagnosed in 2013) with lung involvement. In 2015 I had chemotherapy and pelvic radiotherapy (20 sessions) for bladder cancer. For 4 months afterwards I had severe cystitis like symptoms , but the next two months it gradually improved, so now have normal bladder function. My bowel was also affected for about 3 months and then it gradually improved. I still have some bowel problems with more frequent motions than previously and some faeacal staining, but I can cope with it ok. I have also got some scarring in the vagina.

But my cancer has not recurred and these problems are minor.

My oncologist and rheumatologist actually met to discuss my case while I was undergoing cancer treatment so that would be a good idea for you.

Good luck

[190366 in reply to redtree]

Hi Redtree, this is the most positive information I have received. I feel great reading this as I have heard some awful stories. It’s given me a huge lift. I have actually put a call into my rheumatologist this morning with a view to him speaking to me oncologist. Hopefully they can come to some agreement over a meeting. Thank you so much and good luck on your journey. X

[redtree]

I am glad it was helpful. It is a very scary time, as I remember well.

[Ricexxjm]

Has anyone else had crest or limited schleroderma show up after cancer or cancer treatment.

thanks

[Di01]

Hi what test can you find out if u have crest or not i had a ana blood test which came back okay ?