I had a WLE and SNLB on 20th June. Went to clinic for my results on 29th June and have been told it is good news. I have a very rare cancer, adenoid cystic carcinoma (ACC) which is not actually breast cancer - it just happened to have appeared in my breast - and that I will probably not even need any treatment. The surgeon said I could google it when I got home - they had actually had to read up on it this morning before they saw me. I was obviously on top of the world with this news.
When I have got home I have googled ACC and have got some very alarming facts, one of which is that it accounts for 1% of breast cancers. Also, it appears that only 5-10% goes through the lymph system the rest of the time it passes through your blood or nervous system. I have discovered that when you have ACC it is important that you receive the correct treatment as some treatments do not work for this type of cancer. Is there anyone out there who has this cancer or knows of anyone who does. I desperately want to get in touch with someone who has ACC of the breast and has knowledge of where the best treatment/advice can be found and what treatment they have had.
I just want some facts so that I can deal with this because at the moment I don’t know where to turn for help and feel that I am “floating” because I don’t appear to “belong” anywhere. I have spent a lot of time looking on the forums here and am amazed how much everyone supports each other and how everybody gains strength from each other in such terrible times.
COULD SOMEONE PLEASE ADVISE ME ON HOW TO POST REPLIES AS I HAVE BEEN ON OTHER FORUMS AND RECEIVED ADVICE AND IF I AM LUCKY ENOUGH FOR SOMEONE TO REPLY TO ME I WOULD LIKE TO AT LEAST ACKNOWLEDGE AND THANK THEM FOR THEIR ADVICE.
Thank you, Heather x
Hello Heather,
So sorry to read of your diagnosis, and that you have a cancer so rare that it is difficult to find support. I’m afraid I have no experience of your kind of cancer (mine was plain and simple IDC) but I do know that you will find people o here who can support you whatever your treatment plan involves.
As for replying to posts, you should be able to click the purple ‘reply’ button if you are logged in (sometimes we all forget to log in first!) which brings up a box in which you can type. Then just click post to send it - and wait a few seconds for the site to grind into action!
I am sure you will soon find some supportive replies, but you could also try phoning the helpline when it opens again tomorrow, as they are very good and very knowledgeable.
I hope you soon feel less terrified - I found that once I knew what I was facing it was actually easier. I hope, too, that all goes well for you, whatever your next steps are.
Hi Heather,
You have to sign in to be able to post so check and see if you are signed in, I wondered why I couldn’t post recently and I realised I wasn’t signed in!!! Hope this helps.
I don’t have any experience of your diagnosis, keep posting and take care xx
Hi Heather,
Hopefully you will now be able to reply to posts as I have approved your original post. If you still have problems please send an email to: moderator@breastcancercare.org.uk where one of our technical team will have a look at your account. We are currently using a new upgraded system for our forums and unfortunately we are having some technical problems which we are doing our best to iron out.
Aside from technical problems, I understand that you need some support for what you are dealing with, hopefully there may be some of our forum users who have had a diagnosis the same or similar to yourself and will be along shortly to give you some support. In the meantime please do give the helpline here a ring and have a chat with one of the nurses, they’re here to support you. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
I hope this helps, take care,
Jo, Facilitator
Hi,
Although I don’t have any experience of the type of cancer you have, I just wanted to say there is an amazing support and friendship on this site. We all have the same fears, questions whatever cancer we find ourselves with.
Important to share them with people who understand what you’re going though, so please keep posting with your concerns - Hopefully there will be someone on here who can help with the type of cancer you’ve been dx with.
Take Care
Dotty2xx
Thank you all for giving me advice and replying to my post. It has taken me until now to be able to post. I had my CT just over a week ago and have an appointment to see the clinical oncologist this Thursday (26th July). I would be grateful if someone could tell me what to expect at this appointment?
Thank you and take care everyone, Heather x
Hi Heather,
So sorry about your diagnosis, I don’t have your type of cancer, so can’t offer any medical advice but I just wanted to send you a hug…
As for your appt on the 26th July with your oncoligist, here are a few questions you may want to ask… ( Don’t forget to ask him/her to read out the report to you and ask him to explain it all in lay-man’s terms, ask him to press the print button on his computer and give you a copy)
Please explain to me exact what the cancer is. What treatment would you reccommend? and Is it proven to be appropriate for my type of cancer? Are there any clinical trials I could be put forward for? How often will you re-scan to see if the treatment is working? Do you have much experince of this type of cancer? I hope this may help you work out a few questions…
Please take someone with you and ask for a printo-out of the CT report. You can either digest it at home later, or if still confused call the lovely ladies here for advice.
sadly we have all been where you are now, it’s scary and very frightening. But…once you see your oncologist and they tell you your treatment plan and things start moving on a pace, you also gain knowledge of your type of cancer, then things get a bit eaasier. If you are having problems sleeping ( like I was) see your GP and ask for some non-drowsy sleeping tablets, a good night’s sleep doesn’t help your diagnosis at all, you just look less like a zombie!
Please pm me if you would like to talk further, happy to help and I’m always about, keep in touch, let us know how you get on… Love to you and good luck for the 26th.xxxxx
As you have a rare type of cancer then I think I would ask for a second opinion in your shoes, and make sure you write a list of all the questions you have from your own research adn keep asking until you are satisfied with a thorough answer, even if its one you don´t like!!
I have a rare disease apart from BC so know how important it is to really be your own advocate and expert, as no matter what type of cancer this is, it is YOU it is affecting…
Hi Heather
Sorry to hear about your situation.
I aqree with you that finding where the best treatment/advice can be found is a priority for you.
If I were in your position I would be avoiding any further contact with a medical professional who suggested I googled something when I got home - what a disgusting cop-out, There is so much incorrect and even downright dangerous information on the internet it beggars belief that a surgeon would refer you there.
Have you tried ringing the helplines at Breast Cancer Care, Macmillan and Cancer Research UK and picking their brains about how you might go about finding where specialists in this type of cancer may practice?
I see you’re due to see an oncologist very soon. It may be that a good oncologist would be more informed, informative and supportive than the surgeon you’ve already seen. As suggested by others, take a written list of questions. I always took someone with me to appointments so that they could write down answers to the questions and remember things I missed.
I also wondered whether you might like to start a thread on here with “adenoid cystic carcinoma (ACC)” in the title as that may be more noticeable for people who have been affected by this particular type of cancer and they can then reply and hopefully give you the steers you seek.
Thanks for the advice and comments ladies. I intend taking a file with my research when I go to see the oncologist. I will be following your advice and writing questions down to take with me and asking if he/she has any experience with this cancer.
I still don’t know for certain if it is a breast cancer as different organisations say different things - some say it is and some say it isn’t. I need to know as I have two daughters and my sister has one. My sister had ovarian cancer aged 39 and we have been advised that if it is breast cancer then my eldest daughter (26 years old) needs to go to family history clinic. She has been referred by our GP but the BCN and surgeon say that she doesn’t need to go as it isn’t breast cancer and yet cancer research and other authorities say it is?
I will start a thread with adenoid cystic carcinoma and see if there is anyone out there who has experience of this.
Take care everyone, Heather x