I need some advice as i’m REALLY angry and don’t know how rational i’m being…
I had a mastectomy and ld recon 2 weeks ago. Thankfully they got it all and i need no more treatment (other than getting the wretched necrosis healed!)
I went for a follow up appnt with the surgeon who gave me some paperwork relating to an insurance claim i’m making. It caught my eye that he had written that my diagnosis was invasive ductal.
The problem is he told me originally that i had invasive lobular. I had to ask 4 times before he gave me this original diagnosis, verbally. I also had to ask twice for a medial term to describe the cluster of tumours they found (multifocal).
Yesterday the BCN went through the paperwork they had and said “No you definately had invasive ductal not lobular, but it doesnt matter now as its gone anyway”
I think it bloody well does matter as i’ve done loads of research and know there is a difference between ductal and lobular. They were considering chemo and a big part of my decision making was due to the fact that lobular has a slightly higher risk of reoccurence.
I think its appalling that i’ve been thinking i had one cancer when actually i had a diiferent one. Shouldnt i have been given some kind of print out or written confirmation of my exact diagnosis??
Have other people relied on verbal diagnosis or have you been given some kind of paperwork realting to your diagnosis.
Am i right to be really hacked off and should i say something next week when i see him again?? (i was struck dumb yesterday and scuttled off without saying anything)
I can understand your anger. If you are like me, you need to be able to understand and research was has happened to you, and you cannot do this if you don’t have the correct information.
I would talk to your surgeon next week and clarify things, but as he seems unable to answer a straight question could you ask for a copy of your pathology report, if it’s not on your report then do ask for it in writing. For your own wellbeing I believe you need this information.
I was told I had invasive lobular, then the path report said invasive ductal with LCIS, the surgeon said “take your pick” and the oncologist told me 4 weeks later it was lobular! I have gone for chemo assuming it might well be lobular.
It won’t be any comfort but 4 weeks prior to my dx I was told there was nothing wrong with me and my breast pain was “totally hormonal” so I am just relieved it was found. I would ask to see what it says on your path report though as apparently lobular has a 20-30% of recurrence in the other breast - I had a WLE,
Irina x
I had a complete copy of my pathology report given to me in writing and another copy was sent to my GP. You have every right to the path report and to be able to ask if there are medical words or phrases you don’t understand. In fact my onc said to me “read it through now and then ask me what you don’t understand”. It is yet ANOTHER example of the totally differing standards and procedures around the country. Every hospital and consultant just seem to do their own thing, and it’s a complete luck of the draw who you get and what they are like. There should be a “gold standard” which everyone adheres to, and I think this is something which should be urgently looked at. (Sorry it’s just that I feel very strongly about this. I was very lucky in my hospital and consultants etc. but I know many women are not.)
I asked for a copy of my path report. It said I have ductal and lobular invasive. When I mentioned to my onc that this increased the odds of getting it in my other breast, he said "the type of cancer you have, you’re still more likely to get it in the area of my mastectomy.
ask for a copy of your pathology report as what is written on there is the more pertinent than verbal discussions etc. If when you get it, it isn’t clear, ask for them to go through it with you. I did this last time with my oncologist although sometimes there is no definitive diagnosis or prognosis like others have said. I agree with the need for set guidelines. They have strict treatment regimens in paediatric oncology, however there is flexibility for each oncologist to tailor the treatment - but they always consult with the other teams around the country and world before doing so. My son’s oncologist was in discussion with a French centre during my son’s treatment and it was reassuring to think that many doctors were involved with treatment planning rather than just the one
How do I get a copy of my pathology report ? As when I asked they ignored me. I’m still uncertain of what type of cancer it was etc. I had so much conflicting information, first it wasn’t then it was, then they weren’t 100% sure!!..
Oh I’m pleased I’m not the only one! I feel such a fool. I didn’t know my pathology report existed - I do now!
I agree with Irina - my BCN and surgeon are just the same - they know all about me, they have my notes etc. etc. but cling to them and drip feed me every now and then. Why, why, why was no one upfront with me a year ago!! I really do feel thick.
I need to see MY report. I am going to do my best, starting tomorrow, to ensure I do.
All i will say is i didnt know this excisted till haven told me about it so when i seen my bcn i asked for it so they read it out to me …aqnde said that they would give me a copt but still waitin but I’m down the hospital next wednesday and I’m not leaving till i get it …
I think you have to dig your heel;s in as you have the god good given right to have it ,
Just want to echo the above. I asked for a copy of my path report and the BCN posted it to me and it arrived 5 days later. She was able to print it off their system so that it was up to date on the day she did it. I had loads of questions to ask the Onc having had chance to read and understand (some) of it. I hadn’t been told the type of cancer (ductal) before or margins etc and its made me feel better knowing (hopefully) as much as they do.
As we have the right to read our notes we have the right to a bit of information within those notes (freedom of information act). I freely read the notes at the end of my bed in hospital and fully expect to be able to read anything written down about me.
If you don’t get any joy from your BCN or surgeons try speaking to the PALS at your hospital or try mentioning a request under the Freedom of Information Act to get things moving.
Hi - ostrich just beat me to it, as I was going to suggest contacting the PALS office at your hospital. After I had a WLE and a month later total axillary removal, I asked my surgeon for a copy of both path reports. His eyebrows went up, but he went straight off and got me a copy of them. I only learned of path reports from this site. He didn’t go through them with me and at first it was like reading Japanese. However, with the help of the ladies here and the internet, I now fully understand them.The WLE path report stated my prognosis too - Nottingham Prognostic Index, 4.4, which is middling I guess.
Having had Crohns for 40 years and in the early years, been told zilch, and in particular the long term effects of steroids, I am much more proactive with getting hard copies of my tests, surgeries and consultation notes for both diseases.Yesterday I insisted my gastro send me a copy of his letters to my GP after each consultation. He has been known to get some of my facts wrong. I am currently waiting for surgery to have a resection of my small bowel, and stricturplasty on some narrowings, and I feel I need to know exactly what the gastro and surgeon are talking to each other about. After all, it is my body, not theirs!
Be proactive Louise and demand a copy of your path report - I didn’t have to pay for mine, but I believe some hospitals charge a small fee.
take care,
Liz.
I have often said that owners of animals get more information from their Vets than we do from some of our doctors.
Hi Louise,
I still haven’t got my path report but have been told a lot of details from it and discussions about treatments. Don’t want to be the voice of doom - but you are having no more treatment for invasive multi- focal??? If you are under 50 I think I might have another chat about that. Surely they will do something more - tablets? Are you HER2 positive or negative. Or are you hormone sensitive? Sorry don’t mean to alarm you but there is a lot more you should know to give yourself the best chance. I might be barking up the wrong tree as yours might be different. Really mean this to be helpful, as everyone in our centre of excelllence, virtually, gets chemo now.
Lots of luck in getting things sorted
Lily x
Well rang by breast cancer clinic today and pleased to say they have agreed to send me pathology reports(!) plus all copy correspondence I requested a year ago when this nightmare started.
Hopefully these will arrive shortly. Many thanks for enlightening me!
Talking about misdiagnosis I was told my tumour was very slow growing and 1cm -three weeks later after the lumpectomy I got the proper dx -2.4cm,very aggressive grade 3 with lots of vascular invasion and spread to one node! When I queried this I was casualy told that mistakes do happen! By the way I had to wait two months for my op and was told that 8wks shouldnt make any difference to the outcome!!!
I dont have any receptor results because the docs couldnt get them from the cancer as the tumours were so small. (I had 3 or 4 tumours. The biggest was 5mm and the others were under 3mm) They did the mastectomy cos it was multi focal and gave me a more than 60% chance of having cancer elsewhere in the breast. Amazingly they found none, those 4 tiny tumours were it!
They said that if there had been more cancer, or if it had been above grade one then they would have suggested chemo but as there was so little and it wasgrade one they decided on no further treatment. This also may be because i have had horrible reaction and side effects to all the drugs and the surgery and were concerned how i would react to chemo drugs.
Lou, you say your cancers were too small for receptor tests but you dont say whether you had any lymph nodes taken and whether they were involved? We’ve spoken before and in fact had the same surgeon do the same op a week apart so you prob know I had 1 tumour (18mm) grade 1 with 1/9 lymph nodes with micro mets and I am being offered chemo and then put on tamoxifen (strongly oestrogen and progesterone receptive). I think had I not had the micro mets they probably wouldn’t have suggested chemo and I would be looking at tamoxifen alone so your lymph node results could affect whether you have any further treatment.
Your age I would think is also important - I was told if I had been 40 (I am 39) they probably wouldnt have offered chemo but having looked at this and other threads some hospitals seem to offer chemo for EVERYONE under 50.
I have to agree with Lily that surely there must be some further treatment they are doing?
Is your Onc in Bristol (mine’s in WSM)? I didn’t know tumours could be too small for testing - after all if they can spot micro mets with their microscopes (which is only a recent thing due to a change in dye techniques I think) surely they can see 5mm of tumour well enough to test it?
The receptive status of your tumour and therefore any further treatment/chance of recurrance etc I believe is very crucial (though I am fairly new at this as are you).
Not meaning to worry you love and I know you are worried about your necrosis so if you are confident in your onc and what he is saying then fine but if not perhaps push for a bit more info/second opinon? You were worried enough by their inability to decide what type of cancer you had so perhaps you should get on and chase one of the BCN for that copy of the path report.
Hi,
Lou not sure they have given you the exact truth there. My friend had just one cell in one lymph node and they were still able to test it for HER and ER and PR receptive. It has to be sent off to specialists and just takes a bit longer to come back. One cell is much smaller than yours. Just thought you might like to know that now. She is on tamoxifen for her one cell.
Hope this is helpful rather than worrying. I am in a centre of excellence and would like you to get as good as people here. I am no expert though so you must go with your own feelings on this. Ask away if you need to know any more
Lily x
Ostich, my lymph nodes were clear and there’s no vascular invasion. Dr Rayter was very pro chemo and hormone treatment and rads from the beginning, but he assumed their wouldbe alot more cancer when they did the mastectomy. When he found no more he changed his mind. I also made it very clear that i was desperate not to have chemo if poss as i was going to start trying for a family in the next year and was scared of the risk of infertility.
I have to admit though that their inability to test the receptors sounded dodgy to me. I’m seeing him tomorrow and will be asking about i agin.
The main thing i will be asking/shouting about is the fact that i have an infection in my back wound, have had it for nearly 4 WEEKS, have had 3 swabs that confirm this but some kind of cock up has happened and i only found out the results yesterday. I’m on antibiotics now but have had a hellish month with a stinking oozing back and the scarring is gointo be much worse as it has opened up. I’m furious that the swab results were somehow, lost and i will be expecting answers.