Hi to everyone,
I am looking for some help and advice please.
I have been diagnosed with.cancer 3 times in just 2 years. The cancer is now in my lymp nodes and I have been told it will not go away now, I am not terminal but I will have cancer for the rest of my life.
I have been on fec t, radiotherapy, hetceptin, other chemo and am now on the new drug kadcycla /tmd1. No one knows what’s happening with my prognosis as the cancer has come back so quickly so soon.
I am in my early 30’s.
I do not have any kids and all I really want is to live a long happy life with my husband and have a baby.
I am scared of dying and leaving my husband.
I live in Scotland and am looking for help and support from anyone in my area, I am also looking for success stories and wish that someone could say to me you will be fine, your oncologist is wrong, your cancer will go away, kadcycla is a wonder drug, you will continue to take it for the next few years and then by that time they will have found a cure for cancer and your worries will be over.
I am at the lowest point I have ever been in my life and I desperately need help. In these past two years I have never come across someone similar to me.
Thanks for reading x
Hello Melek1
Welcome to the forums, this must be very difficult time for you. I’m sure other users will be along to support you soon.
In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
Hi melek1,
Where in Scotland are you? I live in Aberdeen, so may not be close to you geographically. I am also a lot older than you ( I’m 51), so you may well be looking for someone closer to your own age.
You sound as if you’re really going through the mill at the moment. I don’t know much about the type of drug you are now on. I was diagnosed with invasive lobular cancer in November last year and am currently undergoing chemo.
Have you tried to phoned the breast cancer care help line? I waited a long time for my treatment to start and was beside myself with worry. I phoned both the breast cancer care and Macmillan help lines and found them invaluable. They have trained nurses who can answer most of your questions and if they don’t have answers at hand, they will try to find out more info for you. They also explained things at my level and it really gave me a chance to digest and understand my diagnosis.
There are lots of ladies who have been living with stable cancer conditions, and there is absolutely no reason why you shouldn’t join they’re ranks. Please try to keep positive and try giving the phone lines a go.
Thinking of you and sending big hugs.
Ann x
Hi Ann,
Thanks for your reply.
I have phoned the breast cancer care helpline and they have been lovely and helpful but limited to what information they can actually give me. My situation is quite unique, chemotherapy has probably not worked in the past so who knows if it will in the future and the drug I am on is quite new. No one has a crystal ball to predict the future.
As no one can give me an answer about the near or distant future I am finding it very difficult to cope.
If I was to talk to people in similar situations then I think it would benefit me.
Thanks
Hi thank you so much for your replies.
Unfortunately I have had no luck with the phone lines. The volunteers have been very helpful and kind but no one has been able to help with answers and advice to suit me. This is one of the reasons I am finding it so very difficult and frustrating right now.
Thanks
Hi Melek1
Sorry I’m nowhere near you, as you can see from my name lol! I’m also a lot older… a young 56! However I am on TDM1 I’ve had 5 lots so far. There are not that many of us on it at the mo. I won’t go into details but I was dx in 2009. Suspected liver mets from the start. Went into remission for 2 years and then 3 years ago it popped up again on the head of my pancreas. I’ve always felt well, makes the SEs of the various drugs over the years more of a pain in the a—!!! So far so good, after progression in Dec started TDM1 in Feb and now stable,hoping for shrinkage in next scan. I’m very active, cycling walking and pilates. Doing up houses with hubby and I spent quite a lot of time out for coffee or lunch with friends!!! SEs are not too bad, fluish feeling for 1-2 days, nose bleeds etc.(I’ve been on Herceptin 5 years and had these on and off since then). I feel I’m living in two worlds, I’m fine, feel well, and sometimes can’t believe it is there!! Then appts and/or scan or three weekly visit to the unit and it pulls me up a bit. However once you’ve gone through the first 2 it only takes 30mins and of I go again. There are some other forums where there are some real positive stories about this drug. HER2 support is one I think.
Take care
xxx
Hello fudgeincornwall
Thanks for your reply too.
It’s good to hear the positive stories but I.still worry greatly because after being on hetceptin for a year the hospital stopped it thinking that it stopped working or it never worked in the first place.
I have started on the tdm1 and had a few but have no idea if it is working yet.
I will give the her2+ group a look.and thanks again xx