Just been to see ONC - very confused now

Hi everybody. I was diagnosed with adenoid cystic carcinoma (a rare type of breast cancer) on 29th June this year - diagnosis after WLE and SNLB. It had taken me 3 years to get to this diagnosis (long story). Surgeon told me I wouldn’t need rads but ONC decided otherwise and I had 30 sessions which ended end of September. From CT scan they had seen small nodules on one of my lungs so had another CT scan on 1st November and went to see ONC today for results. I have been suffering with bad pain in shoulders, back of neck and back of head , back, hips and legs (I take codeine, paracetamol and ibuprofen for this). Told the ONC about this and she said that they were happy with my CT scan and that this would have shown up any problems with my bones and it hadn’t so I need to go to my GP and explain the problems to her (I have done this and this is why I am on the pain medication already). I did say that the scan was only of my chest but she just repeated that this would have shown my bones and so it wasn’t a problem related to my cancer.
My OH asked her about some hardening on my breast where the lump was removed so she checked this and said that she would refer me for a scan and that if there was nothing wrong she would write to me but if otherwise she would send an appointment for me to go back (she then said that if I had an appointment it wouldn’t mean there was a problem!). If there is nothing wrong with the scan then I will be discharge by the ONC team and have a mammogram once a year.
Has anybody got any advice for me. Sorry if this is confusing, I think the pain is getting to me.
Heather x

Bumping this to the top for you. I cant answer your question but…
Hang in there Heather, one of the lovely ladies on here will be along soon im sure.
Funki X

Hi Heather I am sorry to hear you have all these worries not to mention the aches and pains. Sounds like your onc didn’t do a very good job at explaining things to you or putting your mind at rest. I don’t know if the CT scan would have shown up any other suspicious areas or not but I would go back to your Doctor and ask him/her to explain it. I would also ring up your breast care nurse and explain about your aches and pains to her and also about the area arounfd your breast (the hardening may be due to rads but it may not). I would be quite determined to see the Doctor and get him/her to examine the breast area. It is terrible to be left in this limbo situation especially with Christmas coming up.
best wishes

Hi Heather,
That is confusing! If it took 3 years to get your diagnosis no wonder you feel a bit lost with what you have now been told.
Do you have a BCN? Give her a call and explain your confusion, write all your questions down so you know exactly the things you want to discuss, hopefully things will then be made clearer for you.
Take care xx

Thanks for your comments ladies. I don’t really have a BCN as when I was diagnosed the surgeon said that “it was good news it isn’t breast cancer it is adenoid cystic carcinoma. We won’t need to see you again and I don’t think you will need any radiotherapy or other treatment”. I have since found out that it is actually a rare breast cancer but that it usually occurs in the head or neck but can occur in other parts of the body. I will make an appointment to go back to my GP and hope they can help me and explain things.
After posting on here last night me and OH were talking and realised that the Onc hadn’t given her name, asked for my dob or address and didn’t have any id on which they usually do. At least she had a file with her - I presume it was mine!
Will keep you updated - I hope I get my scan appointment soon so I can get some answers with the hardening area on my breast (I wasn’t worried about that before cos I thought it was just what happened with rads, was more concerned with my pain.)
Thanks again ladies,
Heather x

Hi Heather, Phone your GP and see if you can have an emergency appointment today, they should have your notes and may make explanation easier, notes will also tell you who you saw hopefully if GP can’t give you the answers you need you will at least have a name to contact, write all your questions down and go through the list, really hope you get some answers soon, hugs to you xx

I agree see your GP and get an urgent referral , you cannot expect to be kept waiting so long. Keep in touch with us all we are thinking of you at this difficult time. Love Tracy xxx

Hi all, Just an update on my situation. I went for a ultrasound of my breast on Tuesday (18th December). More confusion, as the onc had written that I had been diagnosed in 2007 when it was actually 29th June this year! When doing the ultrasound the dr(not sure if this is right term) decided to do two biopsies as she wasn’t sure if I have a new lump or if it is shadowing from the scar tissue. She really struggled to get the anaesthetic in due to going through scar tissue and then, after three attempts in that area, had to do the biopsies from a different angle as she couldn’t get the needle in again. Then decided that I needed another mammogram and has already booked me in for a mammogram next June. I have to go back for results on the 28th December.
This may find strange but this is the first time that I have felt like crying when at the hospital. I really had to hold myself together. My head is very confused at the moment. One minute I think it must be cancer and the next I am thinking it can’t have come back this quick. Also, I had a chest CT on 1st November to check my lungs - wouldn’t another tumour have shown up on that? Has anyone got any ideas on this one?
Hope everyone else is well and coping.
Heather x

Heather, it’s pretty traumatic your situation with the anaesthetic and as it goes on you find yourself becoming more frightened, very very allowed to feel upset and emotional. If you need a cry just do it better than bottling all up. Really hope that it is scar tissue, please let us know how you get on. Take good care of yourself, keep posting, sending you lots of hugs xx

Thanks for your reply Katy. Trying to concentrate on Christmas but its always in the back of my mind. Hopefully the appointment will bring good news and we can have a good start to the New Year. Just found out I am going to be a grandma for the first time which is brilliant news - have really got something to look forward to now.
Heather x

That’s really lovely, Heather xx

Hello everyone. Just an update. Finally went to see my GP with my pain as it was getting worse. He sent me to nurse for blood tests for rheumatoid markers and ESR levels. He read letter from my ONC and said that she had said I may need a referral to rheumatology and asked if she had mentioned this to me. I told him she had only suggested that I see my GP if my pain didn’t improve.
Went to breast clinic yesterday and got good news - the biopsies they took showed that it was surgical changes (scar tissue) and not cancer - thank god. Of course, there was then a “but”. But the radiologist has looked at my CT scan and there is a slight growth in one of my lung nodules so I need another CT scan in 6 months time. (This is the CT scan that the ONC had looked at and had said there were no changes!?), She also said that I will need a liver function test a month before my scan as the radiologist needs this test doing before a CT scan. I have never had this done before a scan - has anyone else? Hope I am just being paranoid again.
Wishing everyone best wishes for the New Year, Heather x