In February 2012 I went to the doctor because I felt a tiny lump behind my nipple. She referred me to a breast clinic, and they did a mammogram and ultrasound, said they couldn’t see anything except one slightly dilated duct and not to worry about it.
I went back to the doctor as the lump continued to increase in size, and they still said it wasn’t getting any bigger and not to worry. All in all, in the last 2 and half years I have had 2 mammograms, and 3 ultrasound, and they have said not to worry. I even wrote to the clinic and asked them if they were sure, and they put in writing that I should not worry as it was nothing.
It continued to grow until it had gone from about 3mm to about 2.5cm. By now it is causing me a lot of pain. Last week they finally did a surgical biopsy and on Tuesday I was diagnosed with Invasive Ductal Carcinoma.
Obviously I am terrified that the delay has already caused the cancer to spread. I have been feeling ill for weeks - I feel like I can’t breathe properly, and I feel sick and so so tired. I wake up sweating and can hardly get up and down the stairs. Are these signs of the primary cancer, or do they mean it has spread?
Also, how do people cope with all the waiting? I have to go back tomorrow for more tests, then in a weeks time when the team meet they will decide if I need an mri or if they can operate, then if I have the mri it will be even longer. Plus the consultant is going on holiday for 3 weeks. I am trying to distract myself and keep positive but I’m struggling at the moment - I just feel like panicking.
Thank you for any advice.
Hi Emily
So sorry you are having this worry right now. It is normal to have all kinds of aches and pains when first diagnosed. They are usually caused by stress and anxiety. I know there’s no use me telling you not to worry, because you will, but at the moment, there really isn’t anything to worry about.
I notice that there has been no mention of lymph node involvement. The cancer won’t spread anywhere unless it is in the lymph nodes, but even then, it doesn’t mean it has spread to other parts of the body. I had ductal invasive, that just means it has the potential to spread. Although mine had spread to one lymph node, which was removed when I had my mastectomy, along with two others which were clear. I was diagnosed at the beginning of November 2012 and had my surgery just over one month later. My tumour was 3cm, but I had no pain at all. It’s not common to feel breast pain with cancer.
As for the waiting, it’s a problem we all have. You are doing the best thing you can by distracting yourself, but every so often you will feel you’re going into meltdown. Come here often, ask questions, and read the downloadable booklets. This link leads to one about ductal invasive cancer:
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/invasive-ductal-breast-cancer-bcc210
Sending hugs and best wishes.
poemsgalore xx
Emilysss. I’m quite a newby here and not up to speed on the different diagnoses. But the waiting is something we all go through. I coped by preparing for after surgery. I batch cooked meals for the freezer. Bought all the cards I need next few months birthdays etc. and had a clothes shopping trip to treat myself to a couple front fastening tops for post surgery. My house is clean and the most organised it’s ever been. Of course there were days when I just wanted to hide under the duvet, and did. Just take one day at a time when you feel good make the most of it. This website is great for picking up advice and support. Good luck, you’re not alone xx
Thank you for the replies. I am going tomorrow to have another mammogram and ultrasound to see if the lymph nodes are affected. If it still isn’t showing up I think they are going to do an mri. I know they said mine was an unusual presentation as it is not where IDC normally is or something - I must admit it is a bit of a blur but I will try and ask more tomorrow. They said they are not sure where it is coming from or something? I am praying it is not in my lymph nodes.
I know a lot of what I am feeling must be pretty much how other people feel in this position - it is a certainly a very steep learning curve!
Reading the stuff about how people deal with telling their children has been helpful - I have told my daughters but not my son yet. I want to tell him in person but he is working away. At least after tomorrow I might have more info to tell him.
Thanks again.
Em xx