Radiotherapy for sarcomatoid sccs related to ruxolitinib: would welcome dosage experiences

[Rachelthepotter]

Hi. Thank you in advance for your time. I’m having 50 grays of radiation split into 20 doses ( 5 days a week) to prevent further recurrences of SCCs. on my face. Removed surgically. . Nasty stuff , and face is already sore and itchy after 6 treatments. Can’t find any evidence base for that level of radiation ( or, indeed , any particular dose.) Consultant got very pissed off (can I use words like pissed off on this forum? ) and said full dose or not at all.

Would welcome any one else’s experience.

[tessa46]

Rachel I am so sorry to hear of your experience, how worrying for you! I have no experience of your situation but is it possible to get a second opinion, it doesn’t sound as if you are being listened to?

[Rachelthepotter in reply to tessa46]

Sadly, this was the second opinion : the first person was even ruder.

[socrates_8]

Hey Rachel...

Sorry to learn of your dilemma... Being P***ed Off... Is completely understandable!

Finding another consultant, is the only advice, maybe Hunter (Steve), might be able to assist w/ his level of knowledge (?)

Truly hope that you are able to locate a more empathetic medical practitioner than your are currently working with etc...

Best wishes...

Steve

ox

[dancingelephant]

Hi Rachel - you definitely need to get another opinion - easier said than done. I don't know what SCC's are but my experience of rux is melanoma, and I was told that my experience in 2016 of radiation for a head tumour probably caused my MF in the first place!!!

Best wishes,

Bonnie

[piggie50]

Hi Rachel,

I had a SCC removed from my hand. Admittedly I have only had one but no one mentioned radiotherapy afterwards. My understanding, which I’m willing to be corrected on, is that SCC’s are worse than BCC’s but only if allowed to grow over a number of years.

I don’t know what to say to help other than maybe a second opinion.

Very best wishes,

Judy 🤗

[Rachelthepotter in reply to piggie50]

Thanks , Judy. I’d had an SCC removed from my shin pre rux( and pre diagnosis of PMF) , but the rux induced one is a different , highly aggressive sub type - sarcomatoid, or spindle cell. Having lived in Australia for 10 years I was reasonably aware of skin cancer risks.

[piggie50 in reply to Rachelthepotter]

How are you doing now Rachel? x

[JediReject]

Hi Rachel, , can't help on this one as no experience thankfully but want to wish you luck. I do know that there are different types of radiotherapy and the one used for sccs I think is classed as superficial which delivers a lower intensity though it sounds alot and scary it might be the standard treatment regime to help prevent reoccurrence. Then again I might be talking bobbins. Did you get an information booklet or leaflet.

Dunno why your consultant would be hacked off about you questioning it he ought to explain it fully to reassure you.

Anyway best of luck with it all.

Chris

[Superwoman]

Hi Rachel, this does not sound very pleasant, consultant sounds rather uncaring, so understand how you must feel.I’m not sure if I am correct in saying that this Sarcomatoid is one of the rare Sarcoma cancer family which my daughter has, she has Parosteal Osteosarcoma, and unfortunately for her it has gone to her lungs which being a low grade Sarcoma should not of happened but it has, and has now been told that they will treat with Microwave Ablation if the nodules grow, she has had two removed for biopsy which proved that it was Parosteal. Like us being another rare cancer she is finding it hard to deal with, especially having a young family, but her life line has been the nurses on the Sarcoma website, they can help with giving advice to lots of ideas once you start treatment, so maybe they could help with the sore, dry itchy skin.

Like this forum they give such good advice.

Take care

Jean x

[Rachelthepotter in reply to Superwoman]

Thank you , Jean: I’ll check out the sarcoma site you suggest. Skin is healing , but lots of swelling still.