Mam newly diagnosed

FormerMember
FormerMember
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Hi everyone I first joined the community forum last Summer for advice following my dad's cancer diagnosis but sadly he passed away only a few months later.  I'm back here again for some advice following my Mams recent cancer diagnosis. She was diagnosed with nodular melanoma stage 2b following a biopsy from her arm.. It was graded as T4, breslow thickness 5.5. She has since had 3 biopsies from suspicious moles on her back which she will get the results for next week. She is also waiting a SLNB and a WLE. I feel I'm understanding all that I've mentioned apart from one of her letters refer to mitotic rate, I don't really understand this, can anyone help please? Any advice as to what to expect next etc would be greatly appreciated 

  • Hi , I have not had the same experience as your Mam, as my diagnosis back in 2015 was done when it had spread to my lymph nodes and no primary was found. (My experience is in my profile, you just click on my user name to get there, if you feel it might help)

    According to Cancer Research milotic rate is not often used as part of the staging, the site rules say members can give their own experience but not venture into medical advice so I’ve put the link below about staging and where milotic rate is mentioned in case it helps but it sounds like you might have already read up on staging. 

    https://www.cancerresearchuk.org/about-cancer/melanoma/stages-types/tnm-staging

    The Macmillan site has a support line that could help with information 0808 808 0000 it’s free to call and they also have information you can down load or order in booklet form. I’ve put the link below in case it helps.

    https://www.macmillan.org.uk/cancer-information-and-support/melanoma

    Sometimes it doesn’t help to get too far ahead there will be a long wait between 2 to 6 weeks for the results from the WLE and SLNB. For most people the surgery has taken away the melanoma, and there’s no spread but there will be follow up appointments. The information section will lead you through that.

    There are people on here who are having adjuvant treatment, that means treatment to help prevent any spread which last for a year, and there are people on here like myself who have had immunotherapy because it has spread to help reduce the melanoma. She will be given a BRAF status as well I am BRAF positive so my first treatment was with a targeted therapy tablet.

    You often hear that it’s bad to google because you might come across some scary out of date startistics from before adjuvant treatment was around, but sticking to Macmillan and Cancer research should be good. I also like the videos on YOUTube from melanoma patient conference, which I’ve been to a few of, there’s lots of videos on different topics, including anxiety! As often waiting is far harder than the procedures.

    Take care KT

  • Hi and welcome to the online community

    I can see that KTatHome has given you excellent advice and information Slight smile

    I've had both a WLE and SLNB so if it was advice about what to expect with those operations I'm happy to talk you through what happened to me.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi,  Notsurewheretostart, I was diagnosed with melanoma in april with a 5.4 breslow thickness and it was also ulcerated.. This means it was very deep and the skin has broken down over it. I had wle (more skin removed) and slnb (sentinel lymph node biopsy) 4 weeks ago. Since then , I've found that it has spread to my lymph nodes. I know it's scary when you receive letters which you don't understand and the waiting in limbo between appointments is often unbearable. Mitotic rate is the rate at which the cancer cells are dividing. 

    I have been tested for something called the BRAF gene, which basically is a gene which tell the cells how fast to grow. My results were positive. I'm waiting now to see an oncologist, to start targeted therapy.

    This forum has been such a help. Any questions, just ask. 

  • FormerMember
    FormerMember in reply to KTatHome

    Hi  @KTatHome @latchbrook @Hut thanks for your replies and the information and links you have shared , you've all been very helpful and I didn't mean to take so long to reply to you all but had other family issues to deal with too. Things seemed to move so fast since I posted last. The three biopsies from her back were thankfully benign.  She has also now had her WLE and SLNB and are awaiting results.  I was really shocked at the size of the scar after her WLE however its healing really well. When this was carried out a mass was also found in her arm and that was removed too so now waiting the results for that as well.  A few days ago a huge swelling appeared under her arm which was a seroma and that has been drained although filling up again so suspect this will need drained again in the next couple of days. The waiting for results is really difficult!