2nd hospital check up.. 6 months on. LS at 23

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hi, I'm Nikkita.. I'm 23. I have LS. Today was my 6 month check. They told me today that because it got so bad and was undetected for so long and that I had lost so much skin, that I had to be fully aware that cancer may accur. They gave me a local anistetic and cut away some skin. They told me that it was best to have a biopsy. Only my cousin and my partner knows I have LS. My partner had to stay home with my poorly daughter and it cost my cousin too much money to get to the hospital to go with me. So being told about cancer and that i had to have a biopsy, while sitting there alone with no one there for me, was so scary. I tried not too but I even found myself crying on the bus coming home. I can't even sit up properly due to the skin that they cut away just a few hours ago. Not sure if I should speak to anyone about it. 

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  • Posted

    Hello Nikkiita

    I am so sorry you have this problem at such a young age!

    Please take heart in the fact that only 4 percent of LS sufferers develop cancer.  They are taking precautions, that is all, so try to relax.  Stress and worry make the condition worse.  I am sure you have a supportive partner.  Try to do something nice for yourself.  Go for a meal or something with your partner.  I wish your daughter better.

    You are doing the right things now, so try to relax.  I have LS and LP, and I keep getting flare ups as I am hopeless with my diet!  Suffering right now, so will go back to drawing board with diet again!

    I pray you will be fine.



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    • Posted

      Hi Powerwoman.

      I hope your exhibition went off with a bang.

      I love your name. It inspires me to carry on when things get tough.

      Take care and good luck with the diet! smile xx

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  • Posted

    Hi Nikkita

    My heart goes out to you because you are still so young to be saddled with this ailment. Although it is very hard, please try not to stress and be anxious as this definitely makes the condition worse. For the past week I have been sitting with a sick dog and was eventually told by the Vet that it was time to let her go. It broke my heart! Result.... huge flare-up again of LS and LP which to me, once again, proves that stress plays a huge role and of course sugar, cos I found solace in chocolate.

    It is good to know that you have the support of your cousin and partner and of course everybody on this site will support you. You will find the most helpful advice here, of people who have been afflicted with this ailment for many years. Their advice have been invaluable and has pulled me through many a time when I felt like crawling under my bed and never coming out again. Let the Doctors do what they have to do and once the results are out, take it from there, one day at a time.

    Please take care and let us know how you are getting on.


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  • Posted

    How I feel for you. It isn't easy to be told that you have a long term condition  that MAY...or may NOT become malignant at some stage.....4% is the figure most quoted. 

    So now you have to take control 

    you should know what your normal anatomy looks like, so with a magnifying mirror and a bright light, and in private have a look at yourself

    you could take a photograph so you can monitor any changes over time

    as has been said keep your stress levels down try and do things that reduces stress and increases the endorphins....smiling will do so as well. 

    Go to the start page of this site and read the New To LS for practical tips on keeping comfortable and reducing flare ups

    and I think most important for you is to try to understand the condition and the treatment so that you manage it as well as you can. A good start is the Dr Goldsteins webinar, it takes an hour so you and your partner....and your cousin too...will need time to listen and it is a good idea to take notes

    it is a horrid condition, but there are many far worse health problems you could have so take heart and do not dwell on the negative. 

    Remember knowledge is power, so look at your lifestyle, your diet , your moods and make a note of what makes the condition better...or worse. We all are very different and will react differently to external stressors foods etc... Keep a diary...for your benefit

    It is unlikely that you will develop cancer however, cancer could occur following unusual sore patches that never heal, unusual lumps. So self monitoring is essential

    you didnt mention which country you are in

    finanally DO NOT LOOK ON THE INTERNET to see how other peel are affected, yours are the only image to look at, no one else is  relevant, 

    so pecker up and start taking control

    good luck Sue


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  • Posted

    nikita, my heart goes out to you, esp being so young. 

    As for speaking to someone about it, well, here we all are. Ready to give support and advice in spades. Biopsies aren't fun and would have been so much better if you had had someone with you, but it's done now and as was said, chance of cancer is pretty small, so now comes the business of managing it.

    Keep checking in, there are people here with long time LS who are ready with sage advice from years of figuring it out. My life savers.

    hope you're better soon and your little one too.


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  • Posted

    My LS went undertected for 40 years and was pretty darn bad when I finally went to emergency and was sent to a gynae who diagnosed me. I don't believe you should be freaking out about cancer. Old women who've been neglected forever are probably most of the 4%. You came to the right place, here.
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