- January 8, 2021 at 3:47 pm
Im a long time lurker and first time poster! I can’t tell you how helpful reading posts has been helpful over recent weeks.
Brief summary – my 43 year old husband had a non ulcerated superficial spreading on his ear in 1/2013 – 2.13mm – node negative – I think BRAF negative also (has just been checked). Surgical excision and well until 2018 when he had a local recurrence at the excision graft site – surgical excision. All imaging negative until ct scans in November revealed a new 9mm lung nodule and several much smaller lung lesions. Remainder of imaging negative. PET showed moderate uptake in the 9mm lesion – ? 2.5.
He had a lung biopsy of the 9mm lesion – CT guided – after Christmas and we found out today this is negative. Our oncologist / dermatologist / radiologists all pretty certain the lung imaging is consistent with melanoma. Just wondered have others progressed to treatment without a metastatic tissue diagnosis or do we need to keep chasing it (? VATS may be next step??). I just don’t want to lose time – the plan is for combination immunotherapy.
ed williamsParticipantPrivate, that is one way to not get any advice!!! Love the new options!!! If biopsy is negative for melanoma on 9mm mass, to then go on to treatment of Ipi plus nivo would seem not supported by any evidence other than stuff on scans and stuff on scans show up all the time in the lungs (personal experience a few times over the years)!!!
- January 8, 2021 at 8:13 pm
Thank you Melwave and Ed. Melwave – when you responded privately I presumed you did so for a reason and followed suit – always want to respect people’s privacy – but sounds like we’re all on the same page – this open discussion forum is how we all gain! I’m very new to this but reading through threads has been so helpful! It took at least ten minutes to find your private message Melwave .
- January 8, 2021 at 9:03 pm
Re lung – thanks for your input Ed. As he went from having no previous lung lesions on CT imaging to now multiple the dermatology / radiology consultants involved immediately referred to him being stage 4. I think a solitary nodule might be less alarming but multiple (albeit tiny apart from the 9mm lesion) is more worrying. The oncologist referred to things being “highly suspicious” but seems fairly fixed on getting tissue – until there’s tissue we can’t confirm stage. I can totally understand his standpoint – he’s committing him to probably two years of potentially toxic treatment so you can’t do that on probabilities. My worry is this is all taking more and more time (we had a failed first attempt at biopsy – this was round two) and the weeks are ticking by. We meet with him again on Monday so hopefully we will have a plan. Deep breaths!!!. Thanks to you both for responding.
poppymacParticipanthi,i’m from ireland too i doubt the oncologists would started ipi/nivo without further evidence as scans especially pet scan can be wrong i was i had melamoma in bowel and appendix 2 years ago and on further investigation it was in neither,imagine if i had been started on ipi/nivo straight away
- January 9, 2021 at 7:10 pm
JudiAUParticipantJust wanted to mention that early on I also had suspicious lung via X-ray and after a PET scan and scary journey is was to be from a terrible cough I had. It resolved. I was many years later diagnosed stage IV had a few spots on lung, biopsy, diagnosed melanoma.
- January 11, 2021 at 5:18 pm
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