hi,was diagnosed may 2011 with IBC. Was told by my oncologist that I was her2 positive. Had chemo-4 FEC 2docetaxol,mastectomy, 15 radios. Was started on herceptin. after 4 doses it was stopped because my heart function went from 80 down to 55. A couple of weeks after my mx i received a call from my onc telling me my status had changed from her2 positive to her negative. i was a bit puzzled by this but thought no more of it til last friday when on ameeting with my surgeon, going through my path report I Asked him why I changed from positive to negative. he looked at my core biopsy report when I was first diagnosed and to my horror it states very clearly that I was always her negative! So I had the wrong treatment?Would i have had the same chemo? My tumour didnt respond to chemo by the way.It was 4cm at start and at the end.I certainly shouldnt have had Herceptin. What do i do now?
ginette65
Do your clinic copy all letters to your GP to you? If not insist they are provided, getting them from your GP if the clinic don’t play ball. These letters will give the path findings, so you can trace just when the problem occurred. You are entitled to see your FULL medical records and make copies of them, so you can contact your health trust if no-one else is willing to provide copies of letters.
When you’ve got all the info you will be able to work out what to do. The helpline I’m sure will be able to advise you.
I think you may well have a lot of angst to cope with on this one, and you will need soemone with good medical/clinical knowledge to explain to you the consequences of the chemo you had, and how it was different from another regime.
Good luck and a big hug
grumpy
I can understand your concern. It’s appalling that you were put through such an ordeal, just because your Oncologist misread your report/notes properly. It’s also a terrible indictment of the other medical staff caring for you - because why didn’t anybody in the multi-disciplinary team caring for you notice?
For me, the worrying thing is not so much that your Oncologist misread your report (that could be deemed negligence, or simple human error), but that nobody else noticed the mistake, or was double checking.
By no means am I an expert a newbie in fact. The chemo and rads sounds quite standard… So probably the her issue wouldn’t effect that decision. Certainly it’s the same as mine and I’m not her+ altho that everyone is different…
The worry for me would be the perceptions effect on your heart function.
I think you need to follow it up and get the answers you need. Hopefully all will be well with your health…
I think the error, and the fact no one else picked it up is the other issue. A girl on another thread was told the wrong biopsy report. It completely altered her treatment plan and she was devastated… But on her next visit the breast nurse was talking about how relieved she must be… So it came out right away…
Take care. Elli x
Hi Ginette,
oh dear, i am so sorry that yu have to go through all this - what a bad mistake for your team to have made, giving you Herceptin when it was not needed. I hope they have already apologized profoundly to you. The pain to have to go through all this cancer treatment is bad enough without this extra hassle 
I can understand that it leaves you with lots of questions now about the rest of the treatment and the capability of your team.
May I suggest that you phone the breast cancer care team associated with this site, or someone from the macmillan team (see their UK website) to talk about what you have gone through - they are independent experts and really good with providing information and listening to you - and may be able to advice you on what to do next to put your mind at rest. They are a free resource. You can also take this up with your GP. There is always a possibility to have a second opinion from another hospital, which may be useful for you. Your GP should be able to help you with this. Other than the Herceptin mistake you may well find that the rest of the treatment was what they would have done elsewhere too. Also, you may wish to ask further about the effectiveness of the chemo. If the tumour was 4cm and is still 4cm, then at least it did not grow…
They may also be able to advice on how to raise this further with the hospital - and flag this up with them, so they tighten up their procedures and nobody else suffers from the same problem.
As for the chemo, surgery and radiotherapy that you have had - I have had IBC treatment of a similar kind, and you’ll probably find others on this board and elsewhere who have had FEC (or EC) and docetaxol, followed by surgery and then radiotherapy, i.e. patients who have IBC and were HER-.So that part of your treatment seems quite normal to me (but I am just another patient, and no expert)
Wishing you the very best, and hoping you find the expert help to put your mind at rest.
Christine
Hi Ginette,
As has already been mentioned above, please do give the helpline here a call, they’re here to support you through this. Calls are free, 0808 800 6000, lines are open now until 5pm (M-F 9-5 & Sat 10 -2)
Take care,
Jo, Facilitator
thanks for your replies.I only found all this out last friday so not been able to do much.I have e mailed my oncologist telling her what I have found out and asking for a meeting,so I will take it from there.See what she says first.Could do without the stress,now have to have a bone scan as I have a sore rib.It never ends as you all know!
ginette65
Hi Ginette
So sorry to read about what happened to you. They just added more worry!! Very good idea to be proactive and ask for a meeting with your onc. If I were you I would get fully armed and get as much info / opinions on this as possible before the meeting. I have IBC as well diagnosed in Nov last year and I had 3 FEC and 3 Docetaxel, MX and 15 rads, since I’m HER2 pos I also have Herceptin. My tumour was 7cm and path report said tumpr was still 7cm after chemo but they declared chemo to be successfull still as it killed half the cancer cells and killed all the cancer cells in my 7 affected lymph nodes.
Please let us know what the onc came up with at the meeting.
All the best and hugs,
3N3 xx
thanks a lot for your replies.I now have an appointment with my oncologist-after an e-mail,phone calls and a letter-next thursday-5th july. should be fun!so we shall see what she has to say
ginette
Ginette what did your onc say, if I may ask?
Hope you’re OK.