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LFaye
Member
since
19-08-2016
24
Posts
2
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09-01-2018
11:42
Hi Kazxbx, I'm so sorry to hear your daughters news, I can't imagine how you must be feeling. In the end I was diagnosed with a different genetic disorder, but I know there are support groups on social media for those with Li Fraumeni syndrome, so I hope they will be of help to you and your daughter. With very best wishes, Lauren xx
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02-10-2017
02:55
Hi Gemma, Thanks for your reply. I have had my results now and have tested negative for Li Fraumeni but a 'variant of unknown signifance' was found in my PTEN gene, which is related to Cowdens syndrome. So I'm having some more tests done to try and determine what that means for me, but they seem at a bit of a loss tbh! Thank you for your kind words xx
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25-08-2017
03:58
1 Hug
Hi Ditzy65, Thanks so much for getting back to me. I've finally got my appointment through and will be getting the results at the end of September, such a long 4 month wait! Sorry to hear you've got Chek2, I don't think I'm being tested for that one, but will find out when I go in for results. I am from UK, I'm in Bristol and am 27. I keep going through every scenario in my head of my consultant giving me good or bad news. Mostly I feel positive everything will be fine, but sometimes the dark thoughts do take over. Thanks so much for replying xx
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11-08-2017
10:21
Hi Peggy, I'm currently waiting on results so hopefully my appointment experience will be helpul to you. I think everyone's experience will be different, personally my geneticist was brilliant. She firstly asked me what my expectations were for the appointment, I told her I had none, because at that stage I didn't really understand why I was there. She then talked through my family history, they had taken all the info I had written down and searched on the cancer registry, to confirm the types of cancer in my family. She then talked through all the science, my mind was blown at this point, amazing what they can do! She talked through the genes and the risks and specifically to me, which ones I may have. She asked me about family planning, as i'm 27 so this may impact on fertility. She advised I would need to speak to a genetic counsellor before making a decision and that it was a big decision to make, so to make sure I had thought through all the possible eventualities. I'd say I was there for just under an hour in the end. I hope this is helpful, like I said, everyone's experience will be different xxx
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18-07-2017
04:54
Hello! To cut a long story short i'm 27 years old, I had a crazy rare type of breast cancer last year called a malignant phyllodes umour, 3 surgeries and 5 weeks of radiotherapy. Since then i've had genetic testing for something very scary called Li Fraumeni syndrome/Tp53. Basically if I have this altered gene I have a very high chance of developing several types of cancer in my lifetime. The prognosis is not good. It's very rare so i'm struggling to find anyone in a similar situation to me. I'm also being tested for BRCA1 and 2. If anyone else has been tested for Li Fraumeni, or has the TP53 genetic fault, please let me know. All I seem to hear is the word 'rare', it's very lonely xxx
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13-07-2017
06:01
Hi Jenna, I had a malignant phyllodes tumour last year, glad to hear yours is benign! There is a support group on Facebook which is so helpful. Just search for 'phyllodes support group' Hope to chat there Lauren xx
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07-07-2017
02:15
Hi Hayh81, I had a malignant phyllodes removed last year and I got an infection and saw my Dr. I'd definitely recommend you do the same. Did you surgeon take wide margins of tissue in the surgery? This is very important to prevent recurrence. There is a brilliant phyllodes support group on Facebook. Just search for it xx
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19-04-2017
07:31
Hi Jen, I was diagnosed with a malignant phyllodes last year aged 25. Had 2 surgeries, 1 to remove tumour then 1 for clear margins. I also had 5 weeks of radiotherapy as mine was cancerous. There is a phyllodes support group on Facebook that's amazing. Women like us from all over the world. Just search for 'phyllodes support group' and fill in their questionnaire for access. I hope your second surgery went well and happy to answer any questions you might have xx
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05-04-2017
07:26
It was misdiagnosed, but don't want to worry you as that is incredibly rare. It may be worth insisting on a biopsy as this will finally put your mind at ease xx
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05-04-2017
07:17
Hi Eddi, Like you, I didn't have a job to return to after treatment sand was so worried no one would employ me. I was also advised that legally I don't have to disclose it, but like you felt that this just added suspicion about my gap in employment. In the end I found that it was easiest to be honest, with as little detail as possible, but I made it clear that I knew my limits and was ready to return to work. Obviously every situation is different. I now work part-time but don't have children, so am constantly asked why I want to work/do work part-time. Can't help but think they wouldn't ask me that if I had kids! It might be worth starting your search through a recruitment agency and explaining your situation, as they will have the opportunity to chat to the prospective employer about you rather than them just seeing a CV with a gap and dismissing it on that basis. I hope this is helpful. I also work in HR and recruitment so if you have any questions please don't hesitate. Best of luck xx
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17-02-2017
04:45
Hi ANAB Z, I'm sorry to hear this is causing you pain. I am also 26 and had my first fibroadenoma 2 years ago, it was totally benign and wasn't removed. Since then I have had breast cancer and now 2 more fibroadenomas, due to be removed in March. Worth me mentioning that fibros are in no way linked to breast cancer. You mention that you've seen an oncologist, can I ask is that because you have prviously been diagnosed with cancer? I think if I were in your position I would want a biopsy to be absolutley certain and this is a very reasonable request Keen to know how this was resolved for you xx
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17-02-2017
03:07
1 Hug
Hi Riversidedawn and Ann-M, Thank you so much for your replies. The good news is my employer is being very supportive and it looks like I'm dropping to 3 days at least until this latest surgery is over. It's been tricky on a fixed term contract as I didn't start that long ago and feel like a right liability! I'm putting so much pressure on myself to be the person I was and I need to give myself a break! I'm definitely going to look into some counselling. My partner has been really supportive but even he seems at a loss now. Xxx
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12-02-2017
08:14
Hi everyone, I found a lump in April 2016 and was diagnosed with a malignant phyllodes tumour a few months later, aged 26. I had 2 lumpectomies and 5 weeks of rads, which finished early Nov. I'm in a unique position as malignant phyllodes are incredibly rare so have very limited info available to me. When I found the lump and after my first lumpectomy my previous employer were awful so I left to focus on getting better. I started a new job in Dec16, originally applied for 15hrs but ended up on 30hrs. I'm on a fixed term Contract until the end of March. I had an MRI scan and two new abnormalities were found. After waiting for 2 separate biopsy results I'm relieved to say both are benign, but consultant wants them removed to test the whole tumour to be absolutely sure. So I'm having another 2 lumpectomies in March and also have my appointment with geneticist for BRCA in March too. I felt I coped well through the all the treatment last year, but now I'm not coping at all. I've made a few mistakes at work that all my colleagues are aware of and although minor, is very out of character for me. I'm thinking of dropping down to 3 days until I Have the surgery and genetics stuff out the way, but I feel like a failure. To be honest I'm posting here because I feel like a broken record and don't feel I can talk to friends and family anymore. Most of them haven't even asked what my biopsy results were. When people ask how I am I've started lying and saying I'm fine because I feel they don't want to deal with the real answer. Does anyone else feel they're battling with themselves to be 'normal' when they just don't feel that way? Xxx
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13-01-2017
07:02
Hi Dantia, I can't breastfeed because of the radiotherapy, but I don't know if surgery can change things so worth asking your consultant. Hope you had a restful Christmas xx
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24-12-2016
07:17
Hi Dantia, I'm 26 and like you had previously had a fibroadenoma, but in April I found another lump which turned out to be a malignant phyllodes. My treatment plan has been different to yours due to the malignancy, but all I can do is reassure you that benign phyllodes are much less likely to recur. I hope this brings you some comfort. Phyllodes are so rare, especially in our age group so I know how alarmed you must be by the lack of information out there. If you have any questions do just let me know xx
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30-10-2016
09:34
Hi Helen13, Thank you for brightening my day with your Demelza comment, I'm on 19 of 25 and although I know people mean well, I find it so irritating when they say things like that. I'm generally irritable at the moment though haha. I'm having cravings! It was sushi last week and now I've demanded Thai food today, I don't think it's linked to the radio, just whatever makes me happy! Do you just feel generally run down? I'm 26 and look like a spotty teenager again and am waking up feeling so grumpy, my poor boyfriend is so patient! I've got a job interview on Thurs, for a job I've always wanted, but I can't help but feel it's the worst timing! There's a fine line between pressure to return to normal and giving myself too long to overthink things! Xx
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27-10-2016
07:28
Hi Scratchy57, Thanks for your reply! I'll take a look at that support group, that's really helpful thank you. Xx
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27-10-2016
07:22
Hi everyone, Thanks Steph for setting this up, it will be nice to hear familiar names when we get there 🙂 I'll be the one dashing in half an hour late as my radio is at 945 so apologies for that. Looking forward to meeting you all Lauren xx
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21-10-2016
04:45
Hi Scratchy, I'm 26 and wasn't given the choice of mastectomy for a malignant phyllodes, but radiotherapy was recommended so am currently on week 3 of 5. Can I ask what decision you made in the end? We're one in a million so it's reassuring to know I'm not totally alone xx
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