Hi - This is my first post so apologies if this is in the wrong place.
I am 41 (on Saturday!) and have been diagnosed with bc for 1 week. My ‘lump’ is apparently less than 1cm and I will be having a lumpectomy and possibly radiotherapy after that - and to be honest that’s all I know and I feel sort of blind!
I was initially given an op date 5 weeks from now but after much foot stamping (as this is well outside NHS guidelines) and pressure from my GP, have been given a date for the 15th July (so much for keeping stress levels down).
My point (eventually) is that I have been reading posts on this site and realise that I havent been told anything. I don’t even know what kind of cancer I have, my BC Specialist(!!) Nurse just handed me a pack and told me my boob would turn blue due to some kind of dye they put in, then lied when the issue of dates came up later by saying she hadnt realised the date offered was outside 31 days even though we told her so at the diagnosis meeting.
Anyway, I’m rambling now and this post is getting confused, but what I want to know is, do "they’ tell you everything about your condition at the hospital or should I have being given as much information as possible before hand? I dont feel any kind of trust in my ‘team’ any more, which I thought is a must and wondered if I could get any help here.
I wasnt told anything about the grade/stage/hormones until the appt 10 days after my op. I think in some hosps they tell you after the biopsy, but to be completely sure, most wait until they have tested the lump after the op.
With the blue dye, i wasnt warned either about the blue wee that would follow, and the blue breast that lasted for 2 years!
Good luck with your op, sound promising with such a small lump.
they had done a biopsy and told me the grading and type of cancer and then went on to detail all the possible scenarios dependant on the finding when they did the Op.
I then spent another hour or so with my BCN who explained in more detail and went over it with me - as to be honest I didn’t take it in first time and anyhow it meant nothing… I didn’t know what a sential node biopsy was - let along how it would affect me.
I think you should ask for more info. If they know the size (they told me mine was 2cm at first) then they should have other info about the type and grading. In fact when they did the final masectomy my tumour was actually 9cm!) the size is the most difficult to predict.
I know ‘knowing’ makes no difference really - but in fact in does. It puts you in more control and you can ask questions and get more information about what is likely to happen to you. I don’t think keeping you in the dark is helpful and in fact they are not treating you like an adult. Maybe they think they are doing whats best but in my view its not… I needed to know everything and you are entitled to know.
I had my breast cancer operations 12 years ago and 7 years ago, so things may well have changed since then, but I can tell you how/when I rec’d information:
Each time it was at a follow-up appt with my Consultant exactly 2 weeks after the operation (giving time to recover and have a week back at home). The reason for this also being that they then had all the full pathology from the biopsy and the tumours themselves. I was told the type/grade/stage, whether it was hormone sensitive and what treatment I would need and what my prognosis for 5 year survival/reocurrence was.
I realise that this will vary from city to city, town to town, hospital to hospital, etc, but it might help give an indication.
I do think you should get back in contact with either the BCN or your Consultant and ask them when you will be being told this information.
Hope all goes fine with your operation. And try to have a lovely birthday.
Hello DD
I was told at an appointment about 10 days after each of my initial ops (my first op was 13 years ago and my second, this time last year). The first time was by my surgeon, drawing diagrams etc to help us to take it onboard, the second time was similar but followed by the BCN printing off the path lab report and going thro it with me.
some people want that level of detail and others don’t but its worth asking your BCN for as much detail as they have and for more as it becomes available - ie post-op.
I hope things start to turn around for you - it is important to have a good relationship with your team, but you can ask for what you want within that.
wishing you a bit of light-heartedness on your birthday
monica x
Hi…just thought I would tell you my experience. I wasnt told about anything other than the size of the lump either (2cm)when I was diagnosed. They told me at an appointment after the operation. The blue dye they put in during your operation is so they can tell if cancer has spread to your lymph nodes. It will highlight any nodes that have cancer in them. Mine had spread, into just 2, but they took all 28 nodes out just to be on the safe side. All I had was blue wee for a couple of days. Good luck for 15th and Happy birthday for Saturday.
sorry you have ended up here with us. I have just prepared a long post to you but the site seems to have lost it when i pressed submit!
The definitive facts are given after the tumour has been removed. They can then confirm the size, grade, hormone status, her status and the type of cancer.
Before that point, they can give indications based on the tests you have. The mammograms/ultrasounds give an indication of the size of the tumour and they can get an idea of whether it has spread to the lymph nodes. They should be able to discuss these with you before your operation.
I had a fine needle biopsy on the day of my first tests and that test told them the lump was cancerous but gave them no other information about it. The results for that came back the same day as the tests.
The next day i had a core needle biopsy. It took a week for those results to come back. That told them that the cancer appeared to be grade 2, ductal , vaguely er positive, and pr negative. The her status took a few more weeks to come back, but was measured on the basis of the biopsy, not the full tumour.
My operation was 3 weeks later. It took a week for those results to come back and that told us the size of the tumour and confirmed the other results in mt case, except for the grade which had gone up from a grade 2 to a grade 3. They grade it at the highest grade of cancer cells found in the tumour. There must have only been grade 2 in the small biopsy sample but there were obviously grade 3 cells in the full tumour.
The sentinel node biopsy is a procedure where they put blue dye in your breast, and also sometimes radioactive substance, and they can then trace which lymph node or nodes the tumour drains to, as that would be the nodes where the cancer would first spread. By doing this, the surgeon only takes out the first relevant node/s and they are tested for cancer. The dye disappeared within a couple of weeks from my breast. Your wee is blue for a few days after whilst the dye escapes your system.
In addition to the valuable support you will continue to receive here from your fellow users you may find our new resource pack useful to read. I have posted a link below where you can order this online:
I am 41 and was dx back in March this year. It took me a mammogram, 2 biopsies and an ultrasound scan to finally get to my diagnosis.
It can be frustrating not having the full picture, but sometimes I think you are not always told everything as they have no idea how much information you actually want to hear and to be honest not a lot sinks in initially.
I was advised to have a notebook handy so I could write down any questions that I might have when I thought of them so I had them ready for my next appointment. Obviously the first one is “what type of breast cancer do I have? My OH’s main question was “when would I be able to dig the allotment again?”!!!
I have done this for all my appointments and still do it now – mainly because I definitely seem to have “chemo brain”!!!
Hi DD,
I was diagnosed in April this year, had surgery (WLE) and am having radiotherapy. I had a core biopsy taken when i was called back from a routine mammogram and was told i had DCIS at the hospital. I told the surgeon i wanted to know everything but was told very little. I was told that i had DCIS and that it was 2.5cm but they would remove 3 cm, also told what size the scar would be and that was it, no grade etc. After surgery told the DCIS was 2.5 cm and non-invasive plus the 2 lymph nodes were clear.
I decided to ask my GP for my pathology result and was pretty shocked to see that they had removed more than double what i had been told would be removed. It upset me that i would never had known about this had i not asked for the pathology result. The pathology result also gave me the grade and other information such as cavity shavings being removed. If you really want to know what has happened to you, perhaps you should ask for the pathology result.
My friend came in with me for meetings and took notes as although i felt that i wasn’t told very much detail, it is hard to remember everything that is said. I also did a bit of research on the web to find out what DCIS was and the treatment involved.
Certain things can be upsetting as well, i was delighted at the way my breast looked after surgery, it looked exactly the same apart from a neat scar, went back to the hospital and the BCN checked it over but nobody told me that it wouldn’t stay like that! Nobody said it will start to shrink and you will have a dent… The surgeon had said pre surgery that it wouldn’t look the same as it was but i thought if it was going to be different i would see the change straight away, not after a couple of weeks.
I think i may have been unlucky but i think your best bet is to keep asking your questions.
Hope this helps, it is hard as i sometimes feel (though not all the time) that everything is so routine to the surgeons etc that they take it for granted that you will know what will happen (to your body) when you haven’t a clue. Hope you have a fab birthday.
they do seem to take there time,i was referred and had a mammogram taken with biospsy at 2 wks then had to wait another 2 wks for those results,which was cancer >then had a wle and sentinel bioopsy(they cant grade your cancer till they know where it is,where is still where im at at the mo,if they r gona do a sentinel node biopsy(snb) then u will have to go into the nuclear science bit of hospital to have radioactive stuff put in(this hurts) and then when u have the op they put in a dye which is shorterm to find out where the snb are. they will test these and if any r cancerous will probably remove the rest of ur lymph nodes,there are so many types of cancer and different treatments,i hope urs goes well,am 3mths since diagnosed and still not told what grade i am