Living with secondary BC at 26, is there any alternative?
Hi all fellow BC sufferers,
I was first diagnosed with estrogen and her2 positive breast cancer at 22, had mastectomy and recon plus lymph nodes removed, 6 months of chemo, radio and a year of herceptin. Was getting on with my life on tamoxifen for 2 years, had just turned 26 when was diagnosed with secondaries in my hip bone. Had pin put in femar and am now back on herceptin, along with zometa to strengthen bones, zoladex and femara for the past year. I was just recently married when the cancer came back coming up to my first anniversary now and have only just nearly got my head around everything.
I have been coping with cancer for 4 years but always stayed away from the internet and discussion groups as I found it made me more scared in the beginning and I didn't think anyone was as young as me, but I have just got to the point where I am beginning to not even care what happens to me as anything has to be better than the side effects I am suffering on all these drugs. I feel like a 75 year old woman (no offence to the elderly) and so far away from what a normal 26 year old woman should feel like. I am even considering alternative treatments, much to the shock and worry of my family and friends but nobody seems to understand how bad I feel and everyone keeps telling me I look great. Living with secondary breast cancer is supposed to be about having a good quality of life for however long you have left isn't it and I just don't think that is possible being on this kind of treatment. If I was given a time frame of when I might be able to come off the drugs or even some glimmer of hope I might see the point..........I'm sick of having absolutely no control over my life, is there anyone out there in a similar situation who knows of any alternative?
Please help,
Jam
Comments
Hi Jam,
I am sorry, that is so cr@$ that you have to deal with bone mets at only 26. It makes me very angry and frustated at times when I hear how random and unfair cancer can be.
Its not right that you feel like a 75 year old and are suffering with the side effects. Have you discussed possibly trying a different medication with your doctor to see if that suits you better?
What alternative treatments were you thinking of? Are they very 'alternative'? Or more 'complimentary'? I would also look at your diet and trying to introduce some recommended 'cancer fighting' foods. I personally have not been able to give up everything that is bad for me BUT I do eat way better now than I did previously and feel it has helped me. Have you heard of Bernadette Bohan? I have one of her books and have met her once or twice and like her. She's not too in your face with 'do this' and 'don't do that' but she does have some good advice. This is her website if you want a look.
Stay in touch and let us know how you're doing.
Flo.
Hi Jam,
Sorry you are having to deal with this it really is not fair. I don't have much experience of what to do with bone mets but search net & gather all info you can. I have read some things about a macrobiotic diet & exercise which have really helped some people & honey called lifemel which is good to keep neutrofils to decent levels so that you're ok for chemo. Are you talking with other people on net are there any groups in ireland ? talk to cancer support people & try to meet up with people. I'm 37 now, diagnosed at 36 so not all that old.. I do hope you get to chat with others & get some positive feedback. Keep in touch. M
Hi Jam - agree with the last post - get in touch with some young people who have had secondaries from breast cancer. The Irish Cancer Society offer a peer programme, which might be able to help. I didn't have BC but was diagnosed with uterine sarcoma at 20, recurrence in bowel/bladder at 27, and am 36 now and all clear. So keep going and don't give up. I would definitely recommend a superfood diet for general health and also accupuncture might be worth investigating for some of your side affects. Keep in touch and let us know how you are getting on - best wishes, Marianne.
hi jam, i know exactly how u feel,i hated looking up websites because i always came away feeling depressed and that i didnt belong there, that is why i am only visiting this site for the first time in a year, i saw your message and it was like you were saying the same things i feel. i was diagnosed with breast cancer when i was 24 and underwent surgery, chemo and radiotherapy but i was her2 negative. when i was 27 i was diagnosed bone secondaries. that was 2 years ago. i had to have spinal surgery to put rods in my spine as the tumour had destroyed the bone. i was on tamoxifen but they changed it to arimidex when the cancer came back. i am also on zolodex monthly hormonal injections that i hate and have to inject myself every month. i get zometa as well once a month and had to have a portacath put back in because my veins are crap and it sticks out like a big alien from my chest so there goes all my nice dresses and tops. sounds superficial but it really bothers me.
i hate being in the menopause, i hate being on all these drugs. my goal had been to get to the 5 years from diagnosis and i could stop all drugs but that isnt going to happen now because the cancer came back. it is so frustrating when nobody can tell you how long you have to keep taking them, like you are in a time warp where you cant look and plan for the future. sometimes i feel like a ticking time bomb just waiting for it to come back again.i feel like a freak in front of my friends and just want to be normal and i swear if one more person says "you look so well" im going to scream! when you are young no one really does understand how u feel, it is a very lonely place. so u are perfectly entitled to feel the way you do. feel free to have a good old rant on this webpage any time u want cos here you are not alone , take care from lucy
Hi Jam,
Unfortunately I can not give you advice or even offer words of wisdom but I found a website that might be of some use to you - www.bcmets.org. It's an American site purely for women living with secondary breast cancer.
I too am new to this site too. I am 36 (old compared to you but soooo young to me) and I'm due to go into hospital tomorrow for surgery. I'm on line most days if you need a rant or chat.
Take care,
Karen xx