Thanks for your reply dawn. When I was first diagnosed my consultant advised me to look up my cancer on the internet! I did this and had difficulty finding any info as it was so rare. I ended up asking for advice from a very good site in America. They advised me to ask all sorts of questions such as Grade, form and other things. I did this but was told that it isn't always a good thing to ask for too much information so I have never asked for copies of anything again. I am visiting my GP tomorrow about another problem and I will ask if they have had a report back from breast clinic and what that says. Once again thank you for your help.
I hope you are keeping well.
It sounds plausible Heather though not something I have any personal experience of. Do you get copied in on correspondence between hospital and your gp etc? All hospitals should offer this I think but certainly must do it if requested. I also ask for copies of blood reports and of any scan notes - as my history goes back a long way I have quite a file now and it helps when I am referred to other specialties or hospitals to have that all round knowledge of my treatments as these are never passed on in full elsewhere. I'm saying all this because I am wondering if you have any doubts, or your pains etc. change or get worse you may want to ask for a second opinion. Do keep a careful watch if anything changes.
An update. I went to clinic and was then told I needed an ultrasound just to make sure nothing was wrong - the dr I saw didnt know anything about my cancer and left me for about ten minutes while he went to ask a colleague what to do. I had my ultrasound two weeks later and the radiographer said she couldn't see lumps but could see enlarged milk ducts. She diagnosed me with ductal ectasia? hope this is right spelling and gave me a leaflet to explain this. She also said it could be pains with my breast settling down from the lumpectomy which was about 18mths ago. I think I am ok with this diagnosis but still keep getting the stabbing pains - does this sound familiar to anyone?
I hope everyone is ok x
Thanks for the advice dawn. I am at clinic this afternoon and hope to get some answers. Am very nervous, think I am more nervous than previous times. Fingers crossed that I am just being paranoid! Hope you are keeping well yourself.
Neither do I have the same type of bc as yours but what you describe is the same as my experience way back in 1996. My first diagnosis was in 1990 with a large 5cm infiltrating ductal carcinoma. I started with chemo to shrink the tumour, then 30 sessions of radiotherapy. After that the tumour had totally shrunk that they decided there was no need for surgery. Then 6yrs on those symptoms of stabbing pain and a very hard breast (even though the rads had left it hard this was something different).
My advice to you is to keep on keeping on till you are satisfied. It is hard but you have to. Mine wasn't showing on mammo (I understand that invasive lobular often doesn't), it didnt show on the first ultrasound they did and several times they said they couldnt even feel it. Then my nipple started inverting and the skin going like orange peel. Because I just kept on at them they did another US - I refused to let them do a mammo as the pain was too bad - and they found it - it had spread throughout the breast. It was not the first tumour recurring - it was a totally different type.
Good luck and I hope you get answers you are satisfied with.
Thanks Zeppa, I hadn't thought of lymphoedema. Hopefully it will be this.
Thanks June, I will try and give the helpline a ring tomorrow.
You could give our our free helpline a call in the morning on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.
I was diagnosed with a rare breast cancer (adenoid cystic carcinoma) in June 2012. I had a lumpectomy and six weeks of radiotherapy. All was fine until about 7 mths ago when I started getting stabbing pains again (this was one of my previous symptoms) and my breast started feeling hard. I went for my checkup after mammogram and told the dr about this - he said he could feel the hardening but that nothing had shown up on my mammogram so it will be fine. I have since been to my gp as the pain and hardening is getting worse. GP referred me back to breast clinic and I have an appointment on Tuesday. Has anyone got any advice for me or suffered with this themselves. I would be grateful for any advice.
Thanks, Heather x