I am new to the site and I am scared. I had breast cancer stage 4 sixteen years ago aged 36 yrs. I had neo aduvent therapy chemo/radiation hormone therapy and a lat dorsi flap reconstruction + 3 yrs of tamoxifen. After five years clear i was told to get on with my life and I did.
In May this year i had a chest x ray and was told that I had a tumour in my left lung and possibly small tumours in my right.Since May i have been told that I had three different cancers , first breast cancer recurrence …then no it’s lung cancer then no …it’s cancer of the salivary glands and now they have agreed that i have a strongly ER & PR positive capillary cell carcinoma which indicates breast cancer recurrence. I feel like i have been treated very badly and i am not sure how I feel any more. I feel like i have lost all confidence in the medical proffesion and that i can only trust myself. The hospital sent an appointment for a mammogram to the wrong address which was opened by a man who rang and told them they had sent the letter to the wrong address. I got into trouble for NOT Attending!!!
I am taking Femara a hormone blocker at the moment to see if the tumours will shrink. I am suffering with hot flushes a bit of dizziness and painful joints. I have some swelling to my legs at times but not all of the time. So it looks like i may be retaining fluid.
I would love to hear from anyone going through cancer for the second time . Sometimes i feel that this is a lonely place to be.
Diagnosing cancer is not an easy thing to do in reality, but if they keep giving you different information it is difficult to be able to work out what is really going on. I was told I had six months to a year to live in January 2008 when I was told that I had cancer in my bones and possibly in my lungs and liver. After a while, and some other scans, the lung and liver shadows have remained the same so they may not have been cancer. Unless they do a biopsy they can’t really tell.
I got in trouble for not attending a genetic couselling appointment when I had never received the appointment, and that was after several months of waiting and for them only to tell me that there wasn’t enough cancer in my family to go any further with any investigations. My hospital once changed their computer system and at least three of us who had early appointments on the same 4 weekly schedule for several years turned up to be told that we must have been lost in the change over. Look on the bright side, at least we have a right to treatment which is more than so many people in the world, including the US.
Is it a typo, or were you actually Stage 4 sixteen years ago? That is Metastatic (‘Secondary’) breast cancer, so to be NED for that long is quite something. Have a look in the Meet Ups section and see if there is a group meeting near you.
None of us can really help you with the fear factor. Just know that we have all been there, done that and possibly have a t-shirt. There is no right or wrong way of dealing with this, there is only your own way. Being scared, angry, tearful etc is all part of it, but there is a future. It isn’t the one we probably all took for granted, but it is out there and we just have to connect with this new future which is really all about making the most of what we have today.
I’m sorry to read you’re going through such a tough time. As well as the support you receive here you may find it helpful to give the BCC helpline a call on 0808 800 6000. Here you can talk through your concerns with a member of staff who will offer you a listening ear as well as emotional support and practical information. The lines are open Monday to Friday 8 to 5pm and Saturday 10 to 2pm.