Hi
I have Aggressive Fibromatosis which is not actually a Cancer. I do feel a bit awkward joining this community due to the fact that i don't have Cancer, i have benign tumours which attack the muscles and tissues in my left leg. I am told though that just because they do not metastasise does not mean that they are easier to deal with, as they are very difficult to control, there is no cure and they behave like cancer.
I was diagnosed with this in February 1995 - aged 14. Since then i have had 5 operations to debulk the tumours had Chemotherapy - Methotrexate and Vinblastine, Radiotherapy twice and Tamoxifene. I am now 28 and in December 2008 i found out that i have a tumour in my calf and one in my pelvis so will shortly be starting a 6 month course of Caelyx.
It was quite a shock when the doctors confirmed that there were 2 tumours as it had been 7 years or so. Not so much about the one in my leg as i knew that after the last operation in 2001 they were unable to completely remove the tumours, which is why i'd been given radiotherapy, but as for the one in my pelvis - i was not prepared for that news.
I think it's fair to say that i was devastated, for a few weeks i was in quite a state, which is highly unlike me. I had always been so strong, just took it on the chin and got on with it, but at 28 i have responsibilities - mortgage, job, a dog etc so it makes the next step much more difficult for me to take.
Hopefully, the Caelyx won't be too bad and i'll be able to continue functioning as i have been!
FormerMember
Hi,my name's Liz, I have a daughter of 14 and can't begin to imagine what it must have been like for you when you were diagnosed. You've certainly been through the mill, no wonder you were devastated especially if there was a gap of 7 years and there is now one in your pelvis. You sound like a lovely young woman who has coped well in the past and sound determined to cope as well again. You should't feel akward about joining this site. I joined just a few weeks ago and reading all the blogs and forums have found everyone to be very supportive and helpful. Also there are some great jokes if you need cheering up. I hope everything goes well for you.
hello perry i too have joined this site recently,but i dont have cancer either, i did have it in 1994 ,hodgkins lymphoma and had all the treatment going and thankfully have been all clear since then,i am now 35years old. But in 2006 totally out of the blue i had a heartattack, it was a big shock and i was devastated. I then went on 2 have 2 stents fitted in my arteries. My consultants said they r pretty sure ie 80% that it was a long term side effect of my radiotheraphy, plus they told me i have a high chance of developing breast cancer due to my treatment. I find this site very helpful , its good 2 talk and listen 2 other peoples stories of how they r coping etc. So please dont feel awquard. Keep strong perry.I hope everything goes well 4 u.
hello perry i too have joined this site recently,but i dont have cancer either, i did have it in 1994 ,hodgkins lymphoma and had all the treatment going and thankfully have been all clear since then,i am now 35years old. But in 2006 totally out of the blue i had a heartattack, it was a big shock and i was devastated. I then went on 2 have 2 stents fitted in my arteries. My consultants said they r pretty sure ie 80% that it was a long term side effect of my radiotheraphy, plus they told me i have a high chance of developing breast cancer due to my treatment. I find this site very helpful , its good 2 talk and listen 2 other peoples stories of how they r coping etc. So please dont feel awquard. Keep strong perry.I hope everything goes well 4 u.
Thank you for the message and your kind words. I think that if you get talking to people we have all been through the mill in some way or another! Now i am 28 i do often wonder what it must have been like for my parents and i guess also what it's like for them now as there is nothing they can do and as i parent i think that must be horrible.
There is so much interesting and thought provoking stuff on here, i'll never leave the laptop at this rate!
Thank you for your message it was very kind of you. I am sorry to hear about your heart attack, it's so hard isn't it, we put our faith and hope into the treatments to mend us but the side effects can quite often cause another problem. I ended up with Lymphoedema in my leg due to the treatment and ops.
You were quite young when you had your Hodgkins which must have been hard as at 21 you are just starting to find yourself and your life.
I think this will be quite helpful over the next few months as there are lots of people who know what it is like. The only problem i think i'll have is that it might be quiet addictive!
