Hi Lovely people. Could someone explained as I just dont understand why some are told of their diagnosis after biopsy. I have been told that following my biopsy I will undergo a WLE and 5 weeks of daily radiotherapy but until the lump is removed i can not be told what this cancer is i.e DCIS or LCIS or any hormones that its receptive too.
Is this just the way my local hospital does things? is it standard across the country? Am I being kept in the dark and they know already.
Hi meconopsis, the biopsy and initial scans give an indication of the pathology which is used to determine initial treatment but until you have had an operation and have the tumour analysed they are not able to fully let you know what it is and it often changes at this point, it could be that it is your hospital policy to wait to tell you until they have the full results rather than tell you one thing that may changeyour you are worried maybe speak to your BCN, explain your concerns nd see if they can tell you a bit more. Good luck with your op xxx
Zuzy is right, different hospitals follow different routes. Sometimes the biopsy will tell them the type of breast cancer, and whether it is hormone positive, HER 2 positive or triple negative. But from what I understand, DCIS and LCIS are sometimes difficult to be diagnosed until after surgery.
Here a link to a booklet on this website about DCIS
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-bcc39
The following link is to an article about LCIS on the Macmillan website.
macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Aboutbreastcancer/Typesandrelatedconditions/LCIS.aspx
And here is a link to part of this forum for those with DCIS/LCIS:
breastcancercare.org.uk/community/forums/diagnosis/dcislcis
Hope thus information helps.
Sending hugs, and best wishes.
Poemsgalore xx
Thanks Zuzy and Poemsgalore for your help, I just need to sit tight till the day of the op which is the 18th. I cant think about anyth else constantly on my mind but I guess its like this for everyone.
My story changed between biopsy and wle results. And again after wle actually!! (sadly)
I think the point is that until they’ve removed it all, and examined it microscopically, they do not have the whole picture. The biopsy in particular just gives snapshots, pieces of the puzzle, so maybe your hospital is wise to make you wait until they have the whole picture?
I’m not sure. I know waiting is horrible, but it seemed to me that every time I went back the news was a bit worse, like a train crash in slow motion! A disaster unfolding.
Here’s hoping your own results will be as good as they can be! xxx
Hi looking for some advise please as I am seeing my surgeon tomorrow for a 2nd wle ( one margin was a bit close last time he says rads will sort it but he’s doing it to shut me up I think!). Basically grade 3 4/25 lymph involved. Having ct Friday but no bone scan, phoned bc nurse last week to ask why no bone scan and she said they didn’t feel it was necessary and ct is just to tick a box, they aren’t expected any problems. Does this sound right to any of you? Should I make a fuss tomorrow? ( he’s got the scalpel remember!!). Reading posts most of you get ct and bone scan. I’m dreading waiting after the scan for the results as I’m imagining it everywhere anyway, so don’t want bone scan or any scans but I do in another way to give me some peace of mind. What to do?? Help!! Thankyou x
Lols , I have just written a post to you, but it disappeared when my wifi dipped, so forgive me if it appears twice. I have to remember now what I said !
I think you should definitely ask tomorrow and of the surgeon is busy, ask the ward staff to call the BCN. You need clarity and this is perfectly reasonable. It’s very frustrating especially when you are focussing on the surgery. You are the most important person in all of this and therefore tell the team your thoughts, as they won’t know if you don’t tell them.
you have supported a lot if people, myself included, with your very wise and sensitive words. So, ask them tomorrow, you will feel better. I will be thinking about you tomorrow and hope that it all goes well.
best wishes, breathe deeply and go with the flow
Zuleika xx
I certainly wasn’t told what type of cancer I had until it had been removed… seems logical… BUT, I did have a bone scan “to rule out” any bone mets… which was both nerve racking and comforting at the same time. Worth asking, I would say…
Hope all goes well
Jane
Thanks will ask zulika, but have done before , getting nowhere fast, anyway I’m in at 8 so il see surgeon by 9 I hope and nag him for answers. Got 2 bcn s and they give different advice. Happy days arrrgh . Have nice evening I can’t even have a bloody drink according to my list of rules for tomorrow so have one for me x
I was only told after the initial biopsy that it was defiantly BC and invasive ductal and that I would be having either a WLE or mastectomy, I had to choose, and a SNB ( the ultra sound didn’t show any signs of cancer in the nodes ). After the WLE it turned out the cancer was a mixture of ductal and lobular - apparantely quite common for there to be different types of cancer in the same tumour and as there was nothing in any of the nodes and no vascular invasion either I haven’t had a CT or bone scan as they are obviously assuming it’s not travelled anywhere. I’ve had no chemo, once again cause it’s not in any nodes, 15 sessions of rads and am on Anastrozole for 5 years. So not everyone has CT or bone scans, it all depends on what is discovered during surgery and your SNB. However as your results are Grade 3 and some of your nodes are involved is would be reasonable to expect some scans to determine if any of the little bxxxxxs have travelled anywhere else. As others have said, give your BC nurse a ring. Best wishes Pat x
Lols, I know what you mean, I’ve been given different advice from 2 different bcns. It’s annoying even though I respect them and Work in the same hospital as a nurse specialist myself, so I always feel bad when I am frustrated with them.
ive just had ( one ) glass of fizz, strictly in your behalf, you uunderstand take care
Zuleika
Hi Lols hope it goes to plan tomorrow and you get the answers about your scan. Remenber this is about you, your health . You most certainly have the right to ask for the bone scan they should take a holistic approach to your well being.
Thinking of you x
Hi girls, back now. Was first on list in theatre by 9, recovery by 10 , not any where as near as bad as last time with drains etc. gonna take painkillers now and try and have a sleep I’m looking bit white and don’t want family fussing later, thanks for best wishes . Hope your all ok . Spoke to surgeon reagarding bone scan, apparently upto oncologist if I’m having one, !!! So that’s another stressful long wait, treatment differs so much depending on where you live, no rush in South Wales they like you to stress out I think. Anyway beds calling il catch up ltr xx
Lols, well done ! You are one step closer to the new normal
Hi zulika, that your dog on profile pic? Looks lovely. How are you doing? Had worst sleep ever last night gonna ask gp for some sleeping tablets but know they don’t like prescribing them but lack of sleep too much now. Dreading scan Friday and still not happy not doing Bone scan can’t see why they can’t just get on with it , he said not in his remit to order one, not sure I believe that, will ask gp who will prob say cant get involved , politics!! Haven’t missed all the politics of ward whist off sick. Days very long when off work and they won’t let me go back at mo, missing everyone. Op site from yesterday sore but not bad, can’t get it wet though so shallow bath and OH going to wash my hair he’s bit heavy handed so headache for rest of day!! He’s not going near my hair if I cold cap, nightmare! Can’t remember but have you any surgery this week still got ga brain from yesterday so tired and now sun out so will melt again today, hope your ok x
Great to hear from you Lols, yes, that pic is of my border collie, I also have a mini schnauzer. I love them dearly. They are just fab. We go to Pembs a lot to see my in laws and they love running on the beach.
my sleep was a bit weird after my WLE, I think it’s the GA, hope you can sleep better tonight… I know what you mean about work, I’m normally queen bee, so finding it quite dull at home, although I also love it too. Strange feeling, tho’
i don’t know when my mx is, seeing the surgeon tomorrow, after a bot of conflicting info from another surgeon and 2 breast nurses. They are all fab and very professional,but I don’t thino things are as straightforward as they are in my world of cardiolgy ! I was initially told that I could have silicone implanto to both breasts and go up a cup size
i don’t what is going on, Mahler of my post disappeared and it then posted half of it twice !!
i was saying, well done, you are doing great, bearing in mind you had surgery yesterday. You’ll feel better after a hair wash.
Anyway, I’ll keep you posted
Zuleika xx
Predictive text, not Mahler, half of !!!
Meconopsis, how are you doing , I think your op is in 2 days ?
Zuleika x
Hi ladies I’m fine op is tomorrow would have liked it to be a bit coolers, nights in the bedroom are too too hot lol and not in a good way just weather related. OH would kill me for saying that but you know what I mean. My sense of humour keeps me going hope it last through to tomorrow. It would help if they were to tell me more tomorrow instead of another two week wait I feel like I’m completely in the dark. I remain positive.