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    • #11767
      Anonymous
      Inactive

      Hello – I’m 57 years old and have been just been diagnosed with melanoma – had a 1.54mm mole taken off my back –
      When I went in for surgery I had a 1cm incision – they got it all – but when I went to the oncologist – she said it should of been a 2cm incision – and wants me to get a SNL biopsy – So I have to go back in to get that done – unfortunately I don’t understand all of this – I tried to google it – just scared me so I stopped – went back to Dermatologist – he said he doesn’t think there is a need for a SNL because there is no proof that improves your diagnosis – getting conflicting reports – I would of assumed knowing something early would help your chances. So I,m scheduled for the new surgery Feb 9 in Oshawa – but I also have an appointment with Sunnybrook before prior to the surgery – this was set up independently. Unsure whether I will have the SNL biopsy – not sure I want to know – Any advise would be helpful –
      Thanks

    • #11768
      Annette Cyr
      Participant

      Hi there – first, sorry to hear about your diagnosis. It is a lot to take in and can be very upsetting and scary. Also sorry you are having conflicting advice from your physicians. I am actually surprised your dermatologist would be advising you on the sentinel node biopsy. pT2 melanoma of depth 1.0-2.0 mm has a recommendation of 1 to 2cm excision margin for extremities and trunk excisions. Some will be more conservative, and others more generous, depending on their experience, but likely your oncologist is correct. The guidelines state:
      • Caution should be exercised for melanomas 1-2 mm thick, because evidence concerning optimal excision margins is unclear. Where possible, it may be desirable to take a wider margin (2 cm) for these tumours, depending on tumour site and surgeon/patient preference.

      As for the Sentinel node biopsy – absolutely. It is the standard of care, and while there may not be any definitive impact on overall survival, it is an important diagnostic step and is absolutely recommended for porper staging and follow up or adjuvant treatment, unless there are other health factors that would make it problematic. If there has been any spread of the disease to the lymph nodes, you will want to know about it and have that removed. Having a sentinel node biopsy is not that terrible and less problematic on the body than in the leg/groin. Talk about it with your surgeon or oncologist and they will be able to guide you and answer your questions and have more direct experience with these procedures. We have some good information on the website, but there is also a great booklet we have on melanoma which you can download ‘Melanoma – What you need to know” or we can email to you if you would like. Just let me know acyr@melanomanetwork.ca

    • #12641
      Anonymous
      Inactive

      I am writing because I am over 50 and had my eye removed over a year ago due to choridal melanoma. I just had my second CT scan and I couldn’t wait until I saw my onocologist next week so I got the results of my CT scan from the medical record department at the hospital. It says the reason for the exam was for choridal melanoma and it also says the indication is choridal melanoma and it says that my liver is enlarged but okay and basically it leaves the impression part of it that basically everything is okay but is it?

      After the surgery of removing my eye I am living on borrowed time as people do not live past 5 years and the first 3 years are important to my survival. So does this ct scan mean I still have the cancer and its in my body.

    • #12642
      Anonymous
      Inactive

      One more thing. I thought they got all the cancer out when the eye was removed because that is what the onocologist said, everything got out and didn’t seep elsewhere. Then why is the cancer still there from my eye or maybe just maybe I am being a hyperchrodriac and I am okay and am just reading the CT scan wrong.

    • #12643
      Anonymous
      Inactive

      aDeep breaths…

      I had no idea that I had this melanoma. I surf, climb rocks/mountains, ski, horseback riding and just never thought anything of it. I heard about melanoma but no one educated me and or the public about the danger of the sun rays to ones eyes.

      It started with a sty. I was told it was no big deal, not to worry about it. I didn’t. Big mistake. Years later, it grew into a rather large ugly green beast. I say green because that is what the photo image I have of it looks like.

      I was told by the best of the best in ocular stuff that if I didn’t get it out I would die. I was devastated and shocked. I had the surgery lost my eye, but gained my life. I have an artificial eye in place and it looks real. I drive and I live. I have as most of you do, have to take CT scans every 6 months.

      I am having twins. I am over 50. I am excited to give birth to twins, shocked but very, very happy. So far the babies are doing just wonderful. It is an amazing gift from God besides being alive. I know that statistically, people who have had their eye removed lives only for 5 years. I spoke with Dr. Fingers in NYC and consulted with the best of the best and he is the best, I can live past that mark. It isn’t hereditary but if my cancer comes back this cancer has no cure and I will die.

      Now, you understand why I would go get a copy of my CT scan from medical records beforehand. I have babies growing and was shocked to read the word indication: choroidal melanoma. I have learned this morning that it only means the reason for the CT is for this purpose. It does not necessarily mean that I currently have it as on the last page under the title heading Impression it makes no mention of it.

      I am happy but praying with all of my heart and getting ready for what is to me a gift from God, I have my life, I have two babies growing and even if the cancer comes back it isn’t God’s fault it just is what it is. I will fight it but I will be okay.

      Thank you for allowing me to share.

    • #12646
      Annette Cyr
      Participant

      Hello Olivia,
      Wow, this is a lot for you to be going through, and pregnant with twins at the same time! Congrats on the pregnancy and hope it progresses normally. You are correct that uveal or choridal melanoma is not a great diagnosis and that 50% do have progression of disease. It is a difficult melanoma to treat – in fact lacking effective treatments unfortunately. However, someone has to fall on the good side of that 50%. We do have a booklet on uveal melanoma that I am pleased to email you if you would like to send me your email separately. My email is acyr@melanomanetwork.ca I wasn’t sure by your email if you were in Canada – and if you are, where are you being treated? Depending on where you are, there is a genetic test available that can tell you if you are likely to be the patient that will have spread of the disease – some don’t want to know, but some do. I can provide you the contact information. As well, we have a peer support program specifically for uveal melanoma, if you are interested – let me know. Sometimes it helps to talk with others in the same situation and share your concerns and insights. With your eye having been removed, they likely consider you disease free or NED (no evidence of disease) at the moment – meaning no detectable disease. With the enlarged liver, they will want to keep a close eye on you to monitor for spread. But currently, you would be considered free of the cancer (at least what they can detect). Hoping good health continues and you will deliver two wonderfully healthy babies.
      Annette – Melanoma Network

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