Concerned with questions seeking advice

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    • #32926
      rxh253rxh253
      Participant

      I had a mole removed that was diagnosed melanoma. I had the second surgery to ensure they removed everything and had a sentinel biopsy.

      Good news today, nothing showing in my lymph nodes, but the surrounding area shows precancerous cells, so they are going in to remove more area.

      Should I be talking with an Oncologist or …

    • #32930
      Annette CyrAnnette Cyr
      Participant

      Hello and thanks for your question. I hope you are coping well as a new diagnosis can be frightening and create a lot of anxiety. The good news is no indication in your lymph nodes. Not that unusual to have some rogue cells that have continued to develop locally, and that is why they do the wide local excision – to check and see if they can find any of them in the lymphatic channels heading out from the original primary/mole. They also need to do this surgery to get your final staging. Depending on this final staging and the province that you are in, you may or may not ever meet with a medical oncologist. If your staging of the disease indicates that it is early stage (Stage I to stage II), in most provinces, you will not be referred on to see a medical oncologist as there is no further treatment to be done beyond the surgery, and you will be and should be monitored for life – seeing your dermatologist on a semi annual/annual basis for the first few years. In some provinces, like Alberta, you will likely see a medical oncologist, regardless of staging. It just depends. If it was advance stage disease, you would definitely be referred on, but in your case, it does sound like it has been caught early (will also depend on the depth of your lesion – how deep the melanoma penetrated) that will provide some of the information you need.

      So long answer short – depending on final staging, you may not need to see a medical oncologist. Fortunately, the majority of melanomas are caught early, removed successfully without further issues. I do hope this will be your case as well. You might want to download or read our patient booklet, which is available on line or at major cancer centers Melanoma: What you need to know. Also feel free to contact our office if you want to speak with someone directly or are struggling with the fears that sometimes accompany a diagnosis. Mary can be a great help at x 108.

    • #32932
      rxh253rxh253
      Participant

      Thank you for your quick response, after taking the wide local incision they found more precancerous cells in the borders. They are going to an even wider incision. Should I be worried that there are precancerous cells, and how will they ensure they get them all this time? I’m worried I may end up needing yet again another surgery and how do they know there aren’t other precancerous cells in other parts of my body? Is it just a waiting game, is there nothing they can do to kill any other cells to ensure I won’t have to go through all this again? Sorry, it seems like I’ve been through a lot in the last month and to be honest I’m pretty freaked out 🙁

    • #32935
      Annette CyrAnnette Cyr
      Participant

      Honestly, I have been in your shoes, so don’t apologize at all. Of course you are freaked out. We all get that was as there is a lot of uncertainty with cancer and it isn’t an exact science, unfortunately. The standard practice for most cancer is to keep going with surgery until you have clear margins. That is still the best method of control. It is not 100%, for sure. But they will give you at least a sense of their judgement when they are done, and when they have the staging. The staging will determine if there is a need for adjuvant therapy, which for melanoma is targeted or immunotherapies. But these are only available for high risk or advanced cases. Hard to take it one day at a time – I do know. But, as I said before, there is a very high rate of ‘cure’ with surgery, and lets hope the next next surgery has clear margins. There is no guarantee, but they have fairly good models of prediction for recurrence, based on your stage of disease. And you will monitor and check yourself (I have a feeling!) as well as continue to be followed by a derm and/or medical oncologist. If you would like to talk with someone directly or would like to talk with another patient that has been in your shoes, do call us. It sometimes helps to talk to others who have been there.

    • #36965
      Hanna NguyenTnguyen
      Participant

      Hello,
      I’m a male with a distal rectal melanoma of 3.4 cm in size involving the
      submucosa as well as being LVI positive with 1/38 lymph nodes, I have been on adjuvant Pembrolizumab since October
      2019. I’m NRAS mutated.
      On April 21, 2020. CT chest shows enlarging pulmonary metastases bilaterally in all lobes. And no other parts of the body shows spread
      The oncologist has switched me over to Ipilimumab on the 1st of May, 2020.
      I would like to know if anyone has had experienced of current conditions like me and responded well with the current drug that I am using other suggestions such as combine drugs…etc

      Thank you,

    • #37005
      Mary ZawadzkiMary Zawadzki
      Keymaster

      Hi @Tnguyen, thank you for sharing, hoping if anyone has a similar experience will share their story with you. If you would like further support until then please email mzawadzki@melanomanetwork.ca

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