sentinel node biopsy was wrong

Hello
I had a mastectomy just over a week ago. After the operation, the surgeon came by to say that the sentinel node biopsy had shown the lymph nodes to be clear of cancer cells. She said they were pretty sure about the result (although she did say there was a 5% chance that this interpretation was wrong) and this was v. good news. When I went yesterday to hear the full pathology results, the junior surgeon who saw me said that the initial assessment was wrong and that four out the five nodes they tested were affected. I will have to have another operation to clear the nodes and that will now come after chemo.
I felt/feel so devastated. And terrified. On a par with how i felt when I got the orginal diagnosis. And i just feel that the surgeon did a real disservice in telling me results before they really knew what was going on…It has undermined my confidence in a way that I find hard to explain.
Has anyone else had a similar experience? Has anyone had chemo and then lymph node removal?
x
Joannafinch

Hi Joanna

Just to say that I have not been in your position, but had WLE + ax cl, but yes I have heard of ladies having the nodes ‘done’ after chemo.

I am so sorry to hear what has happened to you, it must be very difficult (doesn’t even come close to how you are feeling, I should imagine) and I can understand why your confidence has been undermined. I hope you can have a good long chat with your surgeon and make your feelings known.

Thinking of you,
Fuschia
xxx

Hi Joanna
I think its awful the way you have been given such good news when really they should have waited to have the pathology report from the lab.
My understanding of things is they put a dye in obviously from this she is assuming it was clear (doesnt give much confidence to those who just have the dye) but they do whats called sampling which is when they remove the nodes and test them.
When i had this done my surgeon would not make a diagnosis until the lab reports were back.
Fortunately mine were clear but i can well imagine how you must feel. To get such good news then awful news.
I was like that with my lumpectomy suppose to be 1.5 by 1.7 lump but unfortunately they got it completely wrong. I had to have a mastectomy lump was 4.4cm which then meant chemo. I remember well the absolute devastation i felt. as it all seemed to go from bad to worse to even worse.

I know a few friends who had glands removed after chemo, the chemo hopefully kills off the cancer in the glands so it wont be spreading whilst your having the chemo.

Here for you please post again to let us know how you are.

Ruthx

Dear Ruth and Fuschia
Thanks so much for your comments. I’ve absolutely no doubt that doctors tell you these things with godd intentions and to boost spirits but yes, it does make the devastation worse. I’m actually feeling a bit better - can go for a good hour or two without that stomach lurching bottomless pit feeling flooring me completely. i’ve had some v. good times with my daughter this weekend and that always helps.
I’ve actually chosen to see the surgeon privately tomorrow so I can talk this through more. I’m not so sure this is the right thing to do but having talked about it a lot with my husband we think it probably is worth a discussion and that a bit more information would help (always a difficult call isn’t it? More information doesn’t always help…). Anyway, thanks for your kinds thoughts and sharing your experiences - really, it helps so much to know that others go through similar feelings and experiences and care enough to engage.
x

Hi Joanna

Good luck with the appointment tomorrow. I think you need the information, hopefully she will be able to clarify all your questions. If you feel like it, let us know how you get on.

Fuschia
xxx

Hi Joanna,

Just to say SNAP!! I had bi lateral mastectomies a 3 weeks ago, and sentinel node biopsy, and was told it was clear. Although my surgeon did say 80% this was correct. Such a relief!!! but 2 weeks later i had the full results to say they found cells in my main node. As you said it was as bad as the initial diagnosis day. It feels like you cant keep taking the bad news, I had a very low day but then bounced back. They rushed me back into surgery within a week to have a fully auxiliary clearance, which was last Tues. I am not having my chemo for a couple of weeks as going through IVF to harvest some eggs 1st as i am only 24. I can say the auxiliary clearance was not nearly as bad as the mastectomies, i was discharged the next day and mostly back to normally only 5 days after. Bit of pain and numb arm but generally OK.

It is such a blow and know exactly how you are feeling. Think it will be interesting to see someone privately, as you say more time to talk things through. I am very lucky with my surgeon who is great and spends loads of time explaining. Although he is now away for a few weeks, so next results will prob be from a register.

good luck tomorrow, fingers crossed. thinking of you.

al xxx

Dear Al
Knew there would be someone who’d been through this particular rollercoaster! Glad to hear the auxilliary clearance went well and much much luck with the egg harversting. One day (when you are knee deep in nappies and toddler craziness!) this will all seem like a distant dream. Roll on the good times.
I’m off to see the consultant…thanks for good thoughts Fuschia.
x

Hi Joanna,

It must have been horrendous for you to think that all nodes were clear and then to be given a different diagnosis.I had to go back in to remove all nodes but they done this prior to the chemo. personally I think it may be better to go back after chemo as for me the second operation was a lot harder as it hadn’t properly healed from the first op.

Hi Joanna,

what a total blo**y nightmare for you, you poor thing. Living with bc can be hard enough without medical professionals building our hopes up only to knock us back down again. Maybe they do 'mean well and have the best of intentions or want to ‘boost our spirits’ but I’m sure we’ve all got plenty of friends and family that can do that for us!

Anyway, I really hope your appt has gone well today and you have got some well needed answers. I had my total axillary clearance in march at the same time as my mastectomy, am now having chemo. As you can see from the responses though, you are certainly not the only person that is having chemo first.

Take care and please let us know how you got on,

Kelly
-x-

hi
thanks for your responses and the sympathy. we arrived for the appointment only to be told that the consultant’s father had died last night…all appointments cancelled for the week. i’m beginning to wonder whether the universe is trying to tell me something! ok, a tad egocentric that interpretation but anyway it seems that i am just going to have to wait and hope that my meeting with the oncologist later this week a) happens when it is scheduled to happen and b) provides some answers…
x

Blimey Joanna,

you’re not having much luck at the mo are you! I will be keeping everything crossed that your appt with the onc goes ahead as planned and you do get some answers. I found my onc to be v.v.helpful and he had far more info for me than my surgeon did,

Take care and let us know how it goes with the onc,

Kelly
-x-

Hi Joanna, well, i’m in the reverse from you, got told i needed chemo, then told i didn’t, still its all very confusing, so wondering who’s right and who’s wrong at the moment, anyway, my sleep pattern has gone to hell since starting on tamoxifen, so my surgeon told me to get in touch with my gp and get some sleeping pills to get me back on track, so when i finally managed to talk my doctor round to my surgeons way of thinking (this was over the phone) he agreed to sleeping pills, well, my hubby couldn’t pick them up on thursday, so he got the prescription on friday, i had decided to try some lavender oil first before taking the sleeping pills, so told hubby not to go to the chemist, as it turns out, my doctor had done the prescription, but no signature!!! i’m not even going to ask again, think it must be fate, but hey, how do we trust some doctors???

Alison xxxxxxxx

Joanna,

poor you, really doesn’t seem like you are having much luck. It never rains but it pores!!! this is an expression i have been using a lot recently. Have you heard the Rhianna Umbrella song at number 1 at the moment, if you actually listen to the words it is all about raining and friends being around to support us, it has become mine and my friends song at the mo, when i am feeling down i listen to it and it reminds me how i will get through this. (mind you does take some listening to as hard to actually heard the words!!, also it was out when i got diagnosed and it was raining loads!!!)

Good luck with the Oncologist, i am hoping to meet mine next week,

al xx

Yes sorry to hear this Joanna, I’m sorry you didn’t get to see the surgeon today to clarify your questions.

hi
just to say that we did the senior registrar oncologist today (consultant on holiday…) but the meeting went well and she was very helpful and very easy to talk too. it is indeed true that i have spread to the lymp nodes (it is four out five nodes) but the alarmist and catastrophic tone of friday’s meeting just wasn’t there and also the idea that i have to start chemo immediately was dismissed. on friday we were given the clear message that i would have to start chemo this week or early next and that meant i couldn’t go on a holiday that we had planned. in fact there is no problem with starting later in August (as we had been told before the operation and in the post-surgery meeting) and that means i can have the holiday with my family. what i and my husband realise is that it was not only that the reality of the pathology report was different from the post-surgery report that was so disturbing on friday but it was the whole way in which friday’s meeting conducted that was wrong. the junior person we saw made it sound like lymp node involvement spells the end of the world which is clearly rubbish. no one is going to pretend its good news but neither does it necessarily signify a catastrophy (i know i don’t need to say this to people on this site but that really was the impresson i took away on friday). and there were other things - the guy on friday said he didn’t want to talk about the grade of the cancer and that made me think that the initial assessment of it being grade 2 had also been revised, which it hasn’t. but the main thing was the overall tone - my husband and i came out of friday’s meeting feeling that the world was about to end, that chances of surviving the next few years were indeed very low and things were unusually very grim. none of that is the case - it is standard stuff and the usual treatments apply. maybe these sessions should not be run by junior people.
rant, rant rant!
alison, hope your situation is being clarified and that you got some sleeping pills!
al, hope your meeting with the oncologist went well and i will listen out for that song)
fuschia, kelly, kelyn and ruth - thanks for the sanity and support.
xxx

Hi Joanna

Sounds like you are feeling a lot better about things. Glad that your holiday isn’t in jeopardy either. Unfortunately some Dr’s have the gift of communication…others don’t.

F
xxxx

Hi Joanna

it’s ridiculous what they have put you through without andy good reason.

We had a holiday after the op and before the chemo and enjoyed every single day of it so I want to wish you a brilliant holiday - make sure that each day counts!!!