May 15, 2015 at 12:41 am #533
I was told about this website my my genetic counsellor and thought I would come and say hello.
I was diagnosed with a benign brain lesion in Nov 2014, and then grade 2 breast carcinoma in Dec 2014. I am 26 years old, so it was a bit of a shock to have two such scary diagnoses in such a short amount of time given that I am still so young. My mother had breast cancer on two different occassions in her 40s and died of lung cancer at 62 in Dec 2012. All of this information prompted genetic testing and it turns out I am positive for the tp53 mutation – which after learning about this mutation I sort of expected.
I am currently undergoing treatment for breast cancer, I have had breast conserving surgery and now chemo. at the end I am going to have a mastectomy (as radiotherapy is no longer appropriate due to tp53). I have to make the decision as to whether to have a double mastectomy as a preventative measure, the other option would be monitoring intensely but I have many fibroadenomas and I’m worried about the endless amount of biopsies I might have to have, as well as another lengthy treatment if I get breast cancer again. I wondered if there is anyone here who has had a similar decision to make?
With regards to the brain tumour, they plan to remove that once my breast cancer treatment is over.
It is a devastating thing to find out, and I am worried that my life will be lived in fear now, but having read some of your posts it seems everyone is affected differently by it. I only found out about my brain tumour because I drank too much one weekend and had a seizure, and the breast cancer was picked up on CT scanning as a work up for my brain lesion. All seems so surreal.
Anyway, thank you for reading 🙂May 16, 2015 at 8:12 pm #534
Hi TP, I’m Lara and am a trustee of the charity. I’m really glad you found us. I’m so sorry to hear you’ve been through so much in such a short space of time, I totally understand how overwhelming it can be. Touch wood you’re getting a whole load of LFS drama out the way in one go and will be rewarded with a long long stretch of good health when all this is cleared up!
So, regarding your upcoming mastectomy decision. It is a very personal and emotionally charged choice to have to make, and no one can tell you what is right or wrong, as it differs with each individual. However, I can certainly share my mastectomy experience with you and how it has/hasn’t affected me.
I’m nearly 26 too, and was diagnosed with LFS two years ago. At that time I was advised of the high risk of breast cancer and that a prophylactic mastectomy wouldn’t be a bad shout. For me personally, I jumped at that option. Having had cancer when I was younger, and my mum dying from breast cancer aged 27, and then learning of all the frighteningly high risks associated with LFS, I was just glad there was one pro-active thing I could do that would reduce my risk. I went ahead with it a year later in July 2014. In the end, because I’d had to have some pretty major surgery on my liver and kidney in the year between my decision and having the mastectomy, I ended up deciding to not even have reconstruction. I had planned to have autologous reconstruction originally (using tissue from my thighs), but after so much surgery/recovery time that year already, I decided I just wanted the simplest path with least recovery and risks, and I haven’t regretted it. They found high grade DCIS in both breasts post-op, so I was doubly glad I’d had the surgery and I feel like I had a lucky escape. The main impact it’s had on my life is that I no longer worry about the threat of breast cancer, long term it hasn’t been a negative experience for me at all. The surgery and my scars mean that I am here and healthy, and that’s a wonderful thing. I’m also in the process of getting a massive watercolour tattoo on my chest, Its awesome.
This is not the right decision for everyone, and I’m really not trying to tell you that you should do the same as me, I’m aware that I did take a pretty drastic route! The point I want to make about it is that I NEVER would have thought I would have made that decision a couple of years ago, but it turned out to be the best thing for me. Having the risk of breast cancer completely removed from my life has been totally empowering. For me, anything that lessens the worry/anxiety is a good thing, and that is what having the surgery has done for me. But it’s not an easy thing to just jump in to, and it took me a fair amount of time to sort my feelings out about it. If you feel that your psychological wellbeing or self confidence would take a dive after having a double mastectomy and you would be happier not going ahead with it, then that is the right decision for you and you should absolutely be fully supported in that.
How do you feel about your breast surgeons? Do you feel like you’ve been given all the info and reconstruction options available to you? It makes a huge difference if you have faith in your doctors. I don’t know where you’re based, but I live in London and if you ever wanted to chat or meet then I’d be happy to. There’s also a couple of really great cancer centres (and breast cancer ones in particular) that offer some great supportive services. Look up ‘The Haven’ and see if there’s one near you, also ‘Maggie’s’ is great. You can email me privately on firstname.lastname@example.org too if you’d like.
Lara xMay 19, 2015 at 6:34 pm #535
Thank you so much for your reply Lara, I have sent you an email to the address you provided to save typing out things on here.
TPMay 25, 2015 at 1:55 am #536
Welcome to the forum.
I am Karen and you may have read some of my earlier posts. I carry the gene defect but have been lucky
To remain cancer free to date. All of the females in my dads side of the family had breast cancer so when
I discovered I had the defect gene back in 2011 I saw breast cancer as my first risk followed by sarcoma, which my brother unfortunately had before passing away the end of last year. For me the decision was an easy one, I knew I had to have a double mastectomy even though I hadn’t got cancer, and in Oct 12 I went ahead followed by reconstruction. I have had no regrets and would do exactly the same thing again. I am currently having full body MRI scans on a yearly basis due to the sarcoma risk but at least the breast cancer risk is greatly reduced now. If you have any questions please let me know, Pan has my e-mail address if you would like to e-mail me.
Wishing you all the best
KarenSeptember 1, 2016 at 8:42 am #1034
I am new to this site and not exactly sure how it works or where to start so I decided I’d just share my story here and hopefully this will lead to finding support and/or being support to someone else.
I tested positive for Li-Fraumeni syndrome nearly 1 year ago at the age of 30. I had a prophylactic mastectomy immediately after learning of my diagnosis because my mother died at the age of 39 after a 7 year battle with breast cancer. I felt confident in this decision because I believe it wasn’t “if” I would get breast cancer, it was “when”. It was inevitably in my future. In the midst of preparing for the mastectomy I learned that I had a level 3 melanoma in my right leg. That was scary. I am very fortunate that both surgeries went well and that they were caught early. But now, after the dust has settled, I find myself sinking into a depression and a nasty roller coaster of emotions. I am also plagued by the realization that i may have passed this mutation onto my two young children. I plan to have them tested soon, but that in itself is emotionally challenging. I think that I could really use some support through connecting with others who are facing the same reality.
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